Walking My Path with Parkinson's

PD and Hallucinations

2012-01-30T22:22:00.000-08:00

Wow, it's been a long time since I've posted. I will try to keep up better. Like a lot of people, the holidays kind of threw me for a loop, and I've been recovering since then.

Another new PD experience has begun for me; hallucinations. A while ago, I was starting to see things that weren't there. It started with spots and patches of color in the corners of my eyes, which was no big deal, but then it escalated. I saw a truck parked in our driveway, but when I looked again it was gone, and we live at the end of a dead-end street. I saw a person standing next to my car, who also disappeared as soon as I looked directly at him. I saw another person as plain as day standing in the doorway of a vacation home we had rented. She was as solid and real as anyone else; 40 to 50ish, blonde hair, white pants, blue shirt. I thought maybe the owner of the house had come to say hello or something. Then she disappeared. Disturbing.

Well, the neurologist suggested cutting back on my Requip dosage, so I did. Since then I don't see people who are not on our plane of existence any more, but I still see things in the periphery of my vision sometimes. The difference is, now I'm learning to differentiate between real and unreal, so it doesn't really bother me, except when I think I see a spider. I prefer not to see spiders, real or not.

Other than that, I'm feeling fantastic! I'm doing so well, that sometimes I think I don't have Parkinson's at all. Then, I forget to take my pills on time, and Old Man Parkinson comes to visit me again. Oh well, I really think that the researchers are on the verge of a cure anyway; so there, Mr. Parkinson!

Parkinson's mysteriously affects other people and things...

2011-11-06T04:37:00.000-08:00

I'm sitting here at 4:15 in the morning, having forgotten to set my clocks back again. Of course, old man Parkinson doesn't care about Daylight Savings Time anyway; I'll be getting up at 3:30 for a while yet. Anyway, you get to thinking about strange things at this hour; I was thinking about how Parkinson's mysteriously affects the rest of the world.

Firstly, it makes other people rather deaf. I have to repeat everything. Perhaps Parkinson's generated a field of some kind which has an adverse affect on others' tympanic nerves.

Secondly, it causes others to move more rapidly. Sometimes they seem to be so fast that I can't keep up. I hypothesize that their neural pathways are affected by my Parkinson's in some way.

It even affects the laws of physics! The force of gravity is sometimes much higher in my immediate vicinity. In fact, Parkinson's apparently causes sudden, unexpected "gusts" of gravity.

I will continue to study this phenomenon and post with my results.

In support of support groups

2011-10-14T07:29:00.000-07:00

Went to my support group meeting last weekend, and I felt again like a swimmer in trouble finally getting her head above water to catch a gasp of air. Now I can keep swimming for a while.

I know that a lot of patients are nervous about support groups; the idea of seeing people in later stages of the disease is scary. I had misgivings too, but from the first moment we walked into the room, I was relieved to discover that meeting and talking with other patients is inspirational, not frightening or depressing. I was a bit taken aback by the average age of the group, which was listed as a "Young Parkinson's" group; a lot of these folks were over 80, most were over 60, and I think that at 47, I was the youngest in the room. One lady laughed seeing my expression and explained, with a twinkle in her eye, that they were all young when the group was formed! The leader of the group is younger, and since then, more younger people have joined, but I have found that age doesn't really matter. We're all in the same boat.

My husband and I both look forward to the meetings. Not only are we very fond of all the people there, but it's also the only time we can share our experiences and feelings with people who know exactly what we're talking about. I work very hard to not burden others with my fears, tears anger and frustration. It's such a relief to be with people who understand these things and are not distressed by them and don't judge me by them. It's also very therapeutic to provide some help and hopefully inspiration to others.

I find the people in my group so inspirational. I can't name names, but they know who they are. They (patients and care givers alike) are all struggling with this disease, and they all show incredible resilience and grace under fire. Some of them have trouble walking, talking, or doing everyday activities, but they still laugh and tell stories and sing, travel and even dance in some cases. They listen, they share, they help and most of all, they care.

I know support groups are not for everyone, but I would certainly advise every patient to try it, and their care givers as well. It might surprise you, as it did me.

I am invincible!

2011-09-21T22:07:00.000-07:00

Diagnosis day is here again. It was five years ago today when I heard the words "Parkinson's disease" from my neurologist. I was worried then about where I would be in five years, how much I would have to give up, what I wouldn't be able to do. Well, it turns out that I have had to give up exactly NOTHING. I can still do whatever I want to do, I just do it a little slower because it's harder to do. Everything I do is a little victory, every day is a triumph, so how can I complain?

I AM INVINCIBLE !!!

Unexpected symptoms of PD (to me, anyway)

2011-08-25T18:48:00.000-07:00

I knew about tremors, rigidity and bradykinesia. I knew about dyskinesia, fatigue and "wearing off". For some reason, though, I was surprised when some symptoms hit me. Here's a short list of the Parkinson's symptoms that surprised me:

Hallucinations: a medication side effect which I knew about, but startling nonetheless. It's disconcerting to see a person (a stranger, no less) standing in the doorway as clear as can be, then to see her disappear literally in the blink of an eye. I've had my meds adjusted since then, and she hasn't been back; nor has the truck I thought I saw in our driveway.

And speaking of blinking eyes: DRY EYES; big problem. PD patients apparently tend not to blink as often as they should. For me, this led to eye pain, swelling, ulcers on the eye, and photophobia. Remember to use those artificial tears if you have this problem!

Pain: caused, in my case, by dyskinesia in the muscles of my neck, back, arms, feet and sometimes hands. I had no idea how painful this can be. It's hard to treat, too, but there are treatments available. I'm just grateful that they seem to work for me.

Inability to concentrate: I used to love to read; it was one of my favorite activities. My family always made fun of me because I even read in the shower! I haven't read anything lengthier than a crochet pattern in at least 2 years. It's extremely difficult to keep track of which words I've read and which I haven't; as a result, I find myself reading the same sentence over and over and over... Driving is becoming difficult too; hard to process all the things I need to.

Stuttering: Very annoying! It inevitably happens when I'm speaking to a group, especially if I'm giving a presentation

THE GOOD NEWS: All of these things are treatable, though some require a trade off. You have to target the symptoms are the most annoying and/or disruptive. No problem! I can do that...

I forgot one: being always either too hot or too cold. It seems that I'm either sweating or shivering all the time. It feels a lot like hot flashes, but it's related to being "off". Sometimes it's kind of convenient, I have to admit. If it's too cold to get out of bed in the morning, I just wait for the "hot" cycle.

Where have I been?

2011-08-24T19:47:00.000-07:00

I haven't posted in awhile. Where have I been? Well, we went on vacation, we had house guests, we've both been working extra hard for extra hours... etc, etc. It's been fun, but stressful too.

I feel like I'm just starting to appreciate (if that's the right word) just how hard this fight is going to be. For the first time, I couldn't do everything I wanted to on my vacation, at least not without some reservations. I couldn't stay up with everyone and drink and play cards or dominoes all night long. I didn't have as much enthusiasm about decorating the table or arranging games or making fancy desserts or starting a singalong as I usually do; I was just too exhausted. My neurologist called my cell phone (on a Sunday, can you believe it?) and helped me work out a medication schedule that was a little better, and I had a lot of fun anyway. It would take an awful lot to ruin my good time when I'm with my family, that's for sure!

I just have to learn new coping skills, and I'd better hurry up, because Bob and I are going to Disneyland for our 26th wedding anniversary in September!

A Bit of a Rough Patch

2011-07-17T07:42:00.000-07:00

So far, not so good. I have been having some pretty rough "off" times, although the side effects from the Requip have abated a bit. I think I need to give it another couple of weeks to let the system settle out before deciding whether to declare victory or give it up, though. It's a pretty stressful time for me, and as we all know, stress can magnify symptoms enormously.

The good news is that I'll be on vacation soon; next Saturday we're off to Lake Tahoe for a week. My brother Drew and his wife Debra will be there, as well as a large contingent of my husband's family. Fun!

In the meanwhile, though, I have an impossible deadline looming over me. Some people say they work better under pressure. I wish I could say that...

Less medication... for once.

2011-07-06T20:52:00.000-07:00

I went to my neurologist, and walked out of his office with a prescription for less of one of my medications! I've been having some side effects that I don't like (slight hallucinations, sudden sleepiness, edema in my legs and feet) and the doctor thinks it's from the Requip. So, he cut me back from 12 mg a day to 10mg; that is, 5 pills instead of 6. Kind of nice to be decreasing medicine rather than increasing for once. That means that instead of 17 pills a day, I'll be taking 16.

So far, I've had no reaction to the change either way, really (except for some symptom fluctuation, but I was told to expect that). One of the things I've learned about Parkinson's medications, though, is that I have to be very patient. It seems to take a long time for the system to stabilize after I change something.

So, now I take these every day:
6 Stalevo
5 Requip XL
2 Amantadine
2 Zelapar (selegiline)
1 carbidopa/levadopa

and that's not counting the Ambien I take for insomnia, the Baclofen I occasionally take for muscle rigidity, the Sumatripan I take for migraines and the B12 and D vitamins I take for vitamin deficiencies. Oh yes, and then there's the study drug I'm taking for a clinical trial. It's amazing that I don't rattle when I walk! Well, I'm just grateful that it all works as well as it does.
"Better Living Through Chemistry", right?

Parkinson's is Hard Work!

2011-06-23T20:15:00.000-07:00

The Parkinson's Unity Walk has come and gone and the local Sunnyvale Parkinson's Walk has done the same. All the excitement about winning the Parkinson's Disease Foundation T shirt contest has dissipated. So what's next? Well, I'm thinking about submitting some artwork to the Parkinson's Disease Foundation; they're looking for artwork for their calendar and online gallery. Here's a link:
http://www.pdf.org/en/show_work

That's all for now, though. I'm so tired; fatigue is my constant companion. Ever notice that Parkinson's causes fluxes in the gravitational field? I swear, sometimes I feel like I'm warping the space/time continuum. It's so hard to do everything, from brushing my teeth to lifting and carrying. By the end of the day, I feel like I've been digging ditches. Amazingly enough, though, I've found that a little extra exercise really helps in the long run. Seems counter intuitive, doesn't it?

Parkinson's is hard work, but you just have to work through it, I guess!

Scars and Parkinson's

2011-06-15T20:24:00.000-07:00

I have a scar on my right knee. I got it when I was 6 or 7 years old; my brother and I were flying kites in an empty lot and of course, I was focused completely on the kite. I didn't notice the rock until I tripped over it and landed on my knee on a piece of broken glass. There were tears, some stinging disinfectant and a bandaid, but when I look at that scar, that's not what I remember. I remember how it was to be a child, running effortlessly into the wind, my soul flying with my kite, the grass so green and the sky so blue that it looked like a painting in one of my books. I remember the magic in the summer air, and the future stretching out to an infinite horizon. The little scar on my knee makes it all real again, and I'm glad that I have it to remind me what it was like to be so young and free.

Maybe someday Parkinson's will be that way. Maybe someday it will be gone, and all that's left will be scars in my memory. The scars will remind me not of the bad things, but of the good people I have met, the challenges I have faced and the victories I have won. Maybe I need to look around and find a kite to fly...

Parkinson's Disease Awareness month newspaper article

2011-04-29T09:05:00.000-07:00

Well, here it is; the article that the very kind Stacy Trevenon wrote about me for the Half Moon Bay Review. She did a wonderful job of making sense out of my random jabbering! Thank you, Stacy, for helping me spread the word. And thanks to Lars for patiently and skillfully getting a decent picture to go with the article.

http://www.hmbreview.com/community/article_4fa32d22-6b75-11e0-9fbb-001cc4c03286.html

Stepping out of my comfort zone; newspaper interview

2011-04-15T05:52:00.000-07:00

Well, I've gone and done it now. I won the Parkinson's Disease Foundation t-shirt contest (tied for the win, anyway) and now our local paper, the Half Moon Bay Review is doing an article about it for Parkinson's Disease Awareness month. I gave a phone interview yesterday, and today they're taking my picture. I don't have the PDF t-shirt in hand yet, so I'm going to wear the one I designed for the Patients Like Me Parkinson's Unity Walk team, and bring a picture of the PDF one.

This is way out of my comfort zone; I'm terrified. I don't know why. This is what I've been trying to do; raise awareness, help put a face on the disease for those who haven't been touched by it. It's very scary, though, for some reason. I'm just going to square my shoulders and do it, though. So there, Mr. Parkinson!

National Parkinson's Disease Awareness Month

2011-04-09T21:17:00.000-07:00

April is Parkinson's Disease Awareness Month, and it makes me think about the significance of "awareness". I'm embarrassed to say that before I was diagnosed with PD, I didn't think "awareness" in and of itself was important at all. I thought wearing awareness ribbons and pins and bracelets and whatnot was just a way of paying lip service to helping with a cause, without having to do much. Now I know that awareness is the beginning, the ground swell that can build up and carry us to victory, to a cure. Everything starts with awareness; it's easy to say "no" if you know nothing about a disease or a cause. If, on the other hand, you see someone that you know wearing a ribbon or a pin, you might ask them what it means. When they tell you, suddenly there is a face that goes with the cause, and you might say "yes" the next time you're asked to donate or help.

That being the case, I'm very proud to be able to say that my design was one of two chosen as the artwork for the Parkinson's Disease Foundation's t shirt for Parkinson's Awareness Month. Here's a link to the PDF press release (which also provides a link to buy one of the shirts):
http://www.pdf.org/en/pd_comm_news/release/pr_1301931599

I was amazed and so excited when I found out that my design had been chosen! It's wonderful to be given an opportunity to help with the fight against PD by doing something that I love to do. I feel that way about the Parkinson's Quilt project too. I really think that these little things , when added up together, do make a difference. Making a quilt square, designing a t shirt, telling a story, wearing a ribbon, telling others about Parkinson's and what it's like; all these things raise awareness, and awareness is vital.

In other news: My husband Bob and I are participating in our local Parkinson's Walk in May (it's a "little brother" of the NYC walk, and the proceeds from it go to the Parkinson's Unity Walk organization). Here's a link to the Unity Walk page:
http://www.unitywalk.org/
Please consider joining the Walk or making a donation. Together, we can do this.

Traveling with Parkinson's, Part 2

2011-03-28T20:22:00.000-07:00

Back home again; it was a bad reason to get together, but at least we WERE together, and we made the most of it. My mom is doing much better, but she's very tired of being tired, and sore at being sore. My dad is pretty exhausted too.

I took a redeye flight home; left my parents' house at 2:00 a.m. on Saturday, took the 5 a.m. flight to North Carolina, then had to practically RUN to get to my connecting flight on the FAR END of the airport. I made it just in time, but I was extremely shaky and stiff when I got to the plane.

More traveling tips/observations:

1.) Give yourself plenty of time. Don't book a connecting flight for less than an hour after arriving at the airport. Better yet, fly nonstop.

2.) If you bring a cane with you, other people will understand that you may need help and will generally cut you some slack. I didn't have mine, and I got shoved around quite a bit. Nobody seemed to notice that I was shaky and a little less stable than some.

3.) Bring a small flashlight with you, if you're flying at night. They sometimes make it so dark in the cabin that there is a real danger of tripping over someone's feet in the aisle.

4.) Get up at least a couple of times, even if it's just to stretch in place, but make sure you're holding on to something in case of turbulence.

In general, I'm pretty proud of myself. I managed to get myself to my folks' house and back, so that nobody had to pick me up on the trip to NY. I also managed to get around in unfamiliar territory in an unfamiliar car without getting too lost. I was able to run errands and whatnot without having to get directions. I even drove my brother and his wife back to Brooklyn after their visit the first weekend, and made it back to my parents' house on my own (o.k., I had a GPS, but it still counts!).

Planes, trains and automobiles: not much fun for parkies!

2011-03-15T20:54:00.000-07:00

What a nightmare! Sitting in a cramped, stuffy, vastly uncomfortable chair for 5 hours used to be just annoying, but now it could be considered torture by some definitions... I left San Francisco at 12:30 a.m., tried to sleep on the plane, slouched over in my built-for-a-six-foot-tall-man seat with the headrest shoving my head forward. My last pill was at 6:00, so I wasn't feeling very well. Wave after wave of alternating tremors and muscle rigidity were crashing over my body. Finally, I decided to just take another pill, so I managed a couple of hours of sleep. Then, when we landed in North Carolina, I had to run to catch my connecting flight, or at least I thought I had to. I was practically running through the airport, staggering under the weight of my heavy carry-on and my winter coat. When I got to the gate, I found out that the flight was an hour later than I thought.. Doh!!!

Things I learned the hard way about traveling with just Old Man Parkinson for a traveling companion (so far):

1) Don't carry too much stuff; better to be bored than overloaded.
2) Put your medication in your carry-on in a readily accessible place.
3) If, like me, you need a cane occasionally, this is the occasion !
4) Don't forget that you're the one who's going to have to lug that suitcase to the rental car place or wherever, so don't overpack

Well the good news is that I got here safe and sound, and my dad and I moved my stepmom back home today; she's doing much better, though she gets tired very quickly, and has a lot of pain to deal with. We all feel very lucky; we could have lost her this time. She must have nine lives, like the proverbial cat! I just hope she continues to improve.

Traveling Alone With Parkinson's

2011-03-13T10:08:00.000-07:00

Well, I'm off to New York state tonight; I need to go help my parents out . To tell the truth, they probably don't really need my help all that much, but when there's an emergency in the family, I just feel better actually seeing people and reassuring myself that they're going to be o.k.. My mom just got out of the hospital, and I want to go and help my dad take care of her and the house and whatnot for a couple of weeks.

Anyway, it's going to be challenging; I leave just after midnight tonight, fly to North Carolina, change planes, then fly to New Jersey. I get to NJ at around 11:30 in the morning east coast time. In other words, it's a red-eye, and I'm going to be off my meds most of the time. I also have to pick up my rental car and drive about an hour to my parents' house. Thank goodness the snow has melted, and it will be daylight. The last time I did this, I ended up crossing the George Washington Bridge accidentally and found myself in New York city at 1:00 in the morning.

I have my meds packed in my carry-on, and my cane folded up in my suitcase. I hope this is going to go o.k.; it all depends on how good a travel companion Old Man Parkinson is. Wish me luck!

A new site to track symptoms and response to medications

2011-02-24T22:22:00.000-08:00

Meg Duggan and her sister (who has Parkinson's) have created a website where you can track your on/off times, dyskinesias, and response to medication. It automatically creates graphs from the data you enter, and it's very easy to use. Here's what Meg wrote:

"I am the sister of a young onset PwP and have spent 14 years in PD advocacy, programming and fundraising. This fall my sister started having terrible problems with on/of cycling. We sat down and developed an on-line charting procedure for her. We've decided to share it with the PD community. Its FREE and ANONYMOUS."

Here's a link, and I'll also put a link on the right hand side of this page under "Parkinson's Links":

http://www.datadrivenhealth.org/

Much thanks to Meg and her sister!

Unexpected challenges

2011-02-18T22:42:00.000-08:00

It's funny how sometimes when I think something will be hard to do, it turns out to be easy, and sometimes when I think it will be a breeze... it isn't.

I spent the whole week (including my Friday off) in a series of technical training courses for my work; useful stuff that I can apply directly to my projects. I was looking forward to it, actually. However, it was much harder for me than I had imagined.

First, I had to drive for an hour to an hour and a half (depending on traffic) to get there, and I'm not used to commute driving, so my knuckles were a little white by the time I got there. Then, from 9:00 in the morning until 6:00 at night, I was sitting in a chair. We had a couple of 10 min. breaks and about a half an hour of lunch time, but other than that, I was sitting. It was hard. I tried to keep still; I couldn't. I was locked in unseen and silent combat with my body. It was very distracting, making it difficult for me to absorb the information being presented. In fact, it was so distracting that I was almost in tears a couple of times. We had labs to do which required looking in the workbook, then at the screen to enter something, then back at the workbook, over and over and over. I kept losing my place, so it took me about twice as long as it should have. Then, when we finally finished for the day, there was that wonderful drive home; in the dark, in the rain, in the traffic. Every evening I felt like I had spent the day digging ditches.

This kind of thing used to be so easy! Next time, I guess I'll see if I can arrange to have a nice, relaxing normal work day in between classes...

Help for Parkinson's Documentary "Ride With Larry"

2011-01-26T22:05:00.000-08:00

There's only a few days left for the folks at "Ride With Larry" to raise funds (February 1st is the cutoff date). Thankfully, they managed to get the $50K they needed in order to produce the film, but just barely. They need all the help they can get; I really think this project will raise a lot of awareness. From their Facebook page, here's a list of what they plan to do with the money

1. Film Larry in South Dakota this February to document his winter training & begin his video blogs
2. Travel to Europe to film two very important research studies
3. Interview geneticists studying Parkinson's and collecting 10,000 genetic samples of Parkinson's patients
4. Interview Larry's neurosurgeon in San Francisco
5. Travel to states such as Ohio, Georgia, New York, Connecticut and more to film doctors and researchers that are working on curing Parkinson's and improving lives
6. Find the youngest person with Parkinson's
7. Travel to South Dakota this May & June to follow Larry as he rides across his state
8. Many more interviews with experts, spokespersons, and patients in the Parkinson's field

Here's a link to the donation page:

https://www.kickstarter.com/projects/ridewithlarry/ride-with-larry-a-documentary-film?ref=users

New documentary about living with Parkinson's: Ride With Larry

2011-01-22T18:01:00.000-08:00

This is inspirational, and I think, important to the Parkinson's community. Larry Smith is a PD patient who is planning to ride his special recumbent tricycle 280 miles this summer to spread information and awareness about Parkinson's. A documentary movie is being made about it, well at least they're TRYING to make a movie. They have 10 days left to raise the rest of the funds they need to make the movie a reality.

Please take a moment to look at the movie trailer (there is a link at the bottom of this page) and/or visit the web site:

PD Meds: Is more better?

2011-01-21T20:28:00.000-08:00

I've recently become more aware of the thin line we PD patients walk, balancing ourselves carefully. On the one side, Parkinson's symptoms: you know them, you hate them, they interfere with your life, they make it almost impossible to do the things you love, they keep getting worse. On the other side, medication side effects: dyskinesia, hallucinations, insomnia, constipation, daytime sleepiness, etc., etc. What each patient must do, with their doctor's help, is to find that perfect balance, even though the situation is constantly changing. It's like trying to balance on a rolling log.

I went to see my neurologist recently, to discuss my worsening symptoms, and he suggested just a small change, a little "tweak" to my medication. I added ONE HALF of a 100mg Sinemet tablet in the morning. You wouldn't think it would make that much difference, but it really has! I feel fantastic; no more hideous mornings when the meds just don't kick in or unexpected "wearing off" in the afternoons (well not too often, anyway). It's amazing!

I guess it just goes to show, in my case, anyway, that small changes are probably best, and it may take some patience on my part, but it's worth it! Since the symptoms are constantly changing, the treatments need to be adjusted as well, but you don't want to upset that delicate balance on the rolling log and fall in the river. It might take a while to climb out...

Good news on the diagnosis front

2011-01-15T19:26:00.000-08:00

It looks like someone has finally come up with a way to clinically diagnose Parkinson's Disease while the patient is still alive. The FDA has approved "DaTscan", an imaging technique which can show abnormalities in the brain which are indicative of Parkinson's Disease. The article came from the Michael J Fox Foundation web site (see link on the right side of the page).

Why is this important? For one thing, the clinical trials and studies for Parkinson's research will be a lot more fruitful. Right now, no one can be absolutely sure that the patient in question actually has PD and not some other disorder. Now, the data collected will be of a much higher quality. Also, of course, patients will get appropriate treatment sooner.

Aside from all that, I don't know about anyone else, but I think that one of the worst things is not knowing. You know there's something wrong, but not what it is, or how to go about treating it. Now we'll know. I think this is a very good thing.

It was a dark and stormy Christmas...

2010-12-27T22:07:00.000-08:00

So there it was, Christmas Day. We had opened our presents the night before (a tradition in my husband's family), the turkey was in the oven, the pies were all baked, the cranberry sauce was almost done, and we were happily anticipating the arrival of a friend of ours, and my brother and his wife (whom we hadn't seen in some time). Suddenly, our house was plunged into darkness; a big storm had come up and the power was out. Now, where we live, it's out in the woods and we're used to power outages. We sprang into action like a well oiled machine; Bob lit the fire and the Coleman lanterns, I lit candles, got the rechargeable flashlight from the bathroom and made sure the oven and burners were off. The only problem was the turkey. No problem! Bob charged out on the deck with his umbrella, lit the barbecue and transferred the turkey to it. What about the gravy? Also no problem; we got the camp stove out for that. The green bean casserole could go into the barbecue after the bird came out. We couldn't bake the rolls, but my brother had made some Yorkshire puddings, and they were better than rolls or potatoes, anyway. Anything else we either cooked in the barbecue or on the camp stove, or we just didn't bother with it. A potential disaster became a lovely candlelit dinner, with family and friends laughing around the table. The whole meal (especially the turkey) was delicious, by the way. The lights came back on just after we finished dessert.

I guess the moral of the story is:

The storm may shut off the lights in your house, but nothing can shut off the light in your heart.

Christmas is Coming

2010-12-17T13:05:00.000-08:00

Sung to the tune of "Christmas is Coming":

"Christmas is coming,
The shakes are coming back.
Please to put some Requip
In the Parkie's sack.

If you haven't got some Requip,
Amantadine will do,
If you haven't got Amantadine,
then God Bless you."

Maybe the pressures of the season are getting to me, or maybe things are just progressing. Whatever it is, I'm having some rough days. I'm stiff, slow, weak and shaky. I should say "stiffer, slower, weaker and shakier" I suppose. None of these symptoms are new, they're just worse than usual. Well, I'm off work for a couple weeks now, so maybe a little R & R will help. I imagine it will; I'm so looking forward to Christmas!

Happy Thanksgiving

2010-11-25T06:00:00.000-08:00

I was starting to have a little pity party this morning, because there's no family coming for Thanksgiving. Everyone's either too far away, or doing something else, or not feeling well or whatever. Grump grump. Then, I remembered what a wonderful cast of characters we WILL have here. Aside from me and Bob, our son Rusty and his girlfriend Emily will be here, and later on our friend Bob (yes that does get confusing :-)) and of course our goofy little "furry children". I'm so grateful for them all!

Lucy, Charlie Brown and optimism

2010-11-05T19:18:00.000-07:00

Lucy once asked Charlie Brown whether he preferred sunrises or sunsets. When he said "sunsets, I guess" she jumped all over him, saying that only depressed people like sunsets; people with a positive attitude always prefer sunrises. And for this, she charged him a nickel!

Well, I'm sorry, Lucy, but I have to disagree with you. I consider myself a very optimistic person, and I love both sunsets and sunrises. A sunrise is a gift of hope for a new day, a greeting, a "good morning!" from the gods. A sunset, though, is like a parent's good night kiss; a reassurance that you can try again tomorrow, and no matter what happened during the day, you are always loved and forgiven.

I'm having a rough day today; PD symptoms are intruding on my life. I had trouble getting dressed this morning, trouble sitting still at my desk and working, trouble driving the car, trouble walking our puppy. I was glad to see the sunset after this difficult day, and remember that someone loves me no matter what.

5 cents, please :-)

2010-10-03T14:25:00.000-07:00

Michael J. Fox is one of my heroes. Here is a link to his recent CNN interview:
http://cnn.com/video/?/video/health/2010/09/30/ac.michael.j.fox.fight.cnn

My Vacation "Do's" and "Don'ts" List

2010-09-19T16:05:00.000-07:00

My husband and I just got back from Maui, Hawaii last night. What a great vacation! The trip was to celebrate our 25th wedding anniversary, and neither of us had been to Hawaii before, so we had no idea what to expect. We had looked up activities in the usual books and internet sites, so we had a list of things we’d like to do, but we only made reservations ahead of time for a couple of them. We wanted to “hang loose” and not be on a schedule. Good decision!

As usual these days, I had to compensate for the Parkinson’s. Here’s a list of “do’s and dont’s” that I found helped me out (insert the usual disclaimer here: this is MY experience, and everyone is different):

1) Don’t borrow trouble. Don’t assume that you can’t do something you’d like to do because of PD. You might surprise yourself. I went snorkeling in the ocean and swimming in the hotel pool. I took a submarine ride, I danced, did a lot of walking, explored a cave and rode a bicycle 28 miles down the side of a volcano, and I had no idea ahead of time whether I could do any of it.

2) Do allow for contingencies, and be ready to change your plans. For instance, I wasn’t sure that I could do the whole bike ride, so we checked with the bike tour company and made sure that we could be picked up if it turned out I couldn’t make it (to tell the truth, one more little hill, and I would have been flagging the van down). In other words, be flexible.

1) Do remember to take your meds on time! This was surprisingly hard to do, with all the distractions and the time change and all.
2) Don’t hesitate to ask for help if you need it. People want to help, particularly if you are a customer. There was one lady on the submarine ride with us who was having trouble walking, and they arranged for her caregiver to go with her and get her settled on the sub, even though the caregiver was not going on the trip.
3) Do be prepared for increased symptoms due to being tired, eating food you’re not used to, and general distraction and excitement. Try to get enough rest, and let others in your party go and do their own thing if you’re really not up to it. It’s o.k. to take a nap or just sit and do some crochet; you’re on vacation. That being said, though, don’t let Parkinson’s ruin your vacation. If you feel like dancing, try it! You can always sit down again if you have to.

Most important of all: allow yourself to have fun!

Parkinson's and cognition; new study out.

2010-09-10T19:36:00.000-07:00

I saw on Psychcentral.com that a new study from Queen's University suggests that "Parkinson’s disease can affect thought processes and the acquisition of knowledge". Welcome to my world :-) !

Other interesting tidbits from the article:

"Queen’s University researchers have found that people with Parkinson’s disease can perform automated tasks better than people without the disease, but have significant difficulty switching from easy to hard tasks."

"Even when asked to simply prepare to change their behavior, people with the disease found it incredibly difficult to adjust their plans."

All I can say is: well, DUHHHHH!!
Seriously, though, I'm glad to see some actual research going on about this.

Here's a link to the article on psychcentral

http://psychcentral.com/news/2010/09/07/parkinsons-effect-on-cognition/17768.html

A case for being stubborn.

2010-08-22T08:01:00.000-07:00

One of the things that really touched me in Davis Phinney's talk this weekend was the message "Don't ever quit". If you quit, you've lost for sure. It reminded me that one of my greatest strengths is my... well, for lack of a better word, stubbornness. I think I posted this once before, but I feel inspired, so I'm re-posting it. A short time after I was diagnosed, I woke up in the middle of the night and this memory came back to me like a gift. I hadn't thought if this incident in years, but suddenly I recalled every detail of it, as though it had happened yesterday:

When I was 12 or 13, my parents sent me to horse camp. I was ecstatic! There was nothing in this world I loved more than horses, nothing I’d rather do than ride. My stepmom says to this day that until the age of about 15, I actually was a horse, and she’s right! So, I was eager to go and spend a week just riding and being with horses. I had forgotten about the social aspects of the trip, though.I was a shy and awkward girl, and decidedly not “cool”. When I got to the camp, the other girls all seemed more confident, prettier and of course cooler than I was. I was starting to get worried. The first thing we had to do was take a riding lesson so that our skills, or lack thereof, could be evaluated. I was terrified now; I was sure I would make a fool of myself, even though I had lots of riding experience. My anxiety was immediately communicated to my horse, and he started acting up. As we walked around the ring, he started kicking the fence, bucking, rearing and throwing his head back. He caught me right between the eyes with the back of his head, and that really smarts! The instructor was a tough-looking woman with a very gruff manner who barked instructions and corrections at us: “Sit up straight!” “Stop jerking the reins!” “Pull your elbows in!”; she was kind of scary. She had us walk, then trot, then canter the horses. My horse, of course, would not canter but just started trotting faster and faster until I could feel my teeth chatter and my bones rattle. I was terrified about what the instructor would say when we showed up on her radar.

But suddenly I remembered why I was there, and everything else became unimportant. I was riding a horse! Even if it was a rough ride, it was what I was there for, and I would still rather be there than anywhere else. I began to live in the moment and enjoy myself. So when the instructor caught sight of me, going at a hard trot, rear end slapping the saddle, elbows flapping, eyes and nose streaming from the blow from the horse’s head, and yet wearing a great big grin, her sun-weathered face broke into the first smile I had seen all day and she yelled “You’ve got a lot of guts, kid!” It was one of the finest compliments I have ever received, and I still treasure it.

I realize now that this is how I deal with Parkinson’s and any other problems that come my way. Maybe not always with grace or style; but I always hang on as hard as I can and remember to enjoy the ride, no matter how bumpy it is, because that’s what I’m here for and there’s nowhere else I’d rather be.

Inspirational morning

2010-08-21T16:25:00.000-07:00

We went to the symposium "Maintaining Hope with Parkinson's Disease" this morning, where Davis Phinney was the keynote speaker. What an inspiration that was! After his speech, he joined a panel of PD patients, some of whom I already knew, who shared their views about what gives them hope. They answered questions, told stories and basically got us all fired up about fighting this stupid disease. There was also a panel of care givers, to answer questions about that aspect of PD, and lastly there was a psychiatrist from Stanford University to talk to us about depression and dementia, and what can be done about them. I think that we all left with a more positive attitude than when we got there; I know I did, anyway. I feel like doing something to kick some Parkinson butt!

For anyone who has PD or is a caregiver for someone with PD, I would recommend attending any event where Davis Phinney is a speaker. He was that good.

A thoughtful gift

2010-08-10T21:21:00.000-07:00

Ever notice how some people have a natural instinct for comforting and helping others? My husband's sister, Kathy is one of those. She was on vacation with us, and one day she popped up with a little gift; one for me and one for her mom. It was a little LED flashlight on a lanyard, so you can wear it around your neck, and always have a light available. I know she heard me talking about how I always have to get up in the middle of the night, and how disoriented I get, especially if I'm not at home. I worry about tripping over things, but I hate to turn the light on and wake my husband (even though he says not to worry about it) or others in the house. Now, I have a light that's focused enough that it doesn't light up the whole room, but gets me safely to the bathroom or wherever my destination is in the middle of the night.

Now, wasn't that a thoughtful and useful gift? It sure came in handy while we were camping this weekend!

How to know you're up before you wake up

2010-07-27T04:42:00.000-07:00

This getting up early thing is getting old. Every day, starting at about 3:00 a.m., I wake up, squint at the glowing red numbers on the alarm clock, tell myself it's too early and try to go back to sleep, doze for a little while, then check the clock again. Repeat every 10 minutes until 4:00, then give up and get moving. Slowly. Verrryyy sllloowwwlly

I'm not now, nor have I ever been a morning person. Here are a some of the clues that tell me that I'm up before I actually wake up:

I poured beer into my coffee. A mistake, but perhaps an unconscious indicator of attitude.

I garnished my son's baloney sandwich with chocolate syrup instead of mayonnaise. He was kind enough to point this out before I finished.

Instead of sprinkling salt on the eggs, I methodically removed the cap from the salt shaker and poured all the salt in, then stood there staring at the pile of salt in the bowl, wondering why I did that.

This one has happened multiple times: I made the coffee without putting coffee in. My husband gently brought this to my attention. Sheesh! Next thing you know, he'll want food in his dinner.

There are other examples; new ones every day, in fact. Maybe all this PD stuff is actually lack of sleep.

Well, I guess I'd better go make the coffee. I think I'll put coffee in it this time.

Still kicking

2010-07-23T19:19:00.000-07:00

I'm still hanging in there; kind of walking around in a dark cloud, grieving over the loss of our dog, but turning my face back towards the sun slowly but surely.

It's amazing to me how much the PD symptoms are amplified by stress, either physical or emotional. I can barely type right now; the muscles in my arms, wrists and hands are so rigid. Maybe it's not that way for everyone, though. Lord knows, this disease works differently for every patient.

There's been a lot of interesting Parkinson's developments in the news recently; genetic treatments, laser treatments, studies about possible causes. It's hard for me to get too excited about any of it right now. Give me a cure, then we'll talk.

I find it interesting that at least one study is linking Parkinson's to vitamin D deficiency. I was diagnosed as vitamin D deficient in May. Oral supplements have fixed that, though. I have also been deficient in vitamin B12 and iron on some occasions, and have had higher iron levels than normal on others. This is a bit of a concern for me, as I carry not one, but TWO copies of one of the milder genes for hemachromatosis (iron overload).

I know that in order to find a cure, we need to find a cause, but sometimes it's frustrating just to be handed pieces of the puzzle, when there are no edge pieces and they're all the same color.

Know what I mean?

Just a dog....

2010-07-20T19:23:00.000-07:00

Just a Dog

He’s just a dog, some people say.

Why cry because he’s passed away?

He has no soul, no human spark,

No gift of speech, just a growl and bark.

But when we’re sick or simply sad,

Who worries that we’re feeling bad?

It’s Just-a-dog with big brown eyes,

Who tries to help when someone cries.

And who can always make us smile,

Though sometimes it can take a while?

It’s Just-a-dog who wants to play,

He can always chase our cares away.

Now that Just-a-dog is gone,

Our world somehow just seems wrong,

I’m Just-a-person now again,

Because Just-a-dog was our best friend.

Heartbroken

2010-07-18T22:08:00.000-07:00

Yesterday, we lost our beloved dog, Bosco. I feel sick and empty. Bosco was a part of our family for 13 years. He and our son grew up together; I can't believe he's gone.

good morning

2010-06-23T04:05:00.000-07:00

Is it o.k. to say "Good Morning" if the sun isn't up yet? I guess so. 3:30 to 4:00 a.m.; that's my witching hour these days. No matter how tired I am, I wake up at that time, my body just taut and vibrating like one of my ukulele strings. Can't sleep through that!

I wonder why certain positions make the symptoms worse? Lying down always makes the tremors and rigidity worse, and sometimes the dystonia and dyskinesia as well. Unfortunately, I've never had the knack of sleeping standing up! Sometimes I can manage it sitting down, but that's usually frowned on at work...

The good news is that I get this short quiet time to myself while the rest of the house is still asleep. Sometimes I share the time with the four-legged denizens of the house; the dog curled up by my chair and the cat on my lap. Sometimes they just look at me in disbelief as though to say "3:30 in the morning? You gotta be kidding; the birds aren't even up yet!" and go back to sleep.

I do enjoy these solitary pauses before the day starts (after I get over the annoyance of being rousted out of bed by Old Man Parkinson). There's always a silver lining.

The T-shirts begin to pay off!

2010-05-21T04:31:00.000-07:00

I got my first check from Cafe Press for profits from my online T-shirt sales! Thanks to everyone who bought a t-shirt or gift item from one of my sites. I hope this is a trend. I will be very proud and grateful when I sign the check over to the MJFF; it may not be the biggest check they ever got, but it was, and will continue to be, a labor of love.

I was up at 4:00 this morning, which has become pretty routine for me. My foot is curling up in pain, my body is shaking with cold and PD, but I have my kitty warm on my lap, and I have that check sitting next to me on the desk, warming my heart. I think it's going to be a good day...

Portraits in Courage

2010-05-17T04:37:00.000-07:00

I have met some amazing people as a consequence of having PD. People whose lives have been upturned by a chronic disease, be it Parkinson's or RA or Lyme Disease or MS or other conditions, who have responded with courage, grace and selflessness. Instead of sitting around feeling sorry for themselves, these incredible people look for something positive to do to help others and to better their own lives. These are my inspiration; they keep me going.

You warriors know who you are: Karen, Pokie, Judy, Sherry, Bob, Dan, Sass, Auntie J., Enzo, Cherie, Nicole, Dixie and a whole bunch more. I admire your attitudes so much, and I try in my own feeble way to follow your lead.

This weekend I saw yet another example of this kind of courage. My friend Karen ("Btrflynana"; see her blog on my blog list on the right) is battling chronic Lyme disease. She was first diagnosed with Parkinson's, which is how I met her. Then, the diagnosis was changed to MSA (multiple system atrophy), but she didn't think her symptoms matched either of those diseases, so she started researching on her own and came up with Lyme's Disease. The symptoms match, and, contrary to popular belief, the bacteria is present on the West coast, just not as abundantly as in the East. This idea was met with skepticism, dismissal, and even with ridicule by her doctors. Apparently, a lot of doctors don't even believe that chronic Lyme disease even exists! Meanwhile, Karen's symptoms had progressed to the point where she had to quit her job and was in danger of losing her house (her husband was already disabled from a fall on the job years ago). She was in constant pain and had difficulty doing even everyday tasks. She did more research and found a "Lyme literate" doctor on her own, who gave her the appropriate tests. She tested positive and started on an antibiotic treatment. Today, she is making progress, though she's still suffering with pain, movement problems, speech issues, and a whole constellation of other symptoms. She is working very hard to raise awareness of chronic Lyme disease, knowing that there are others out there who should be tested as soon as possible. She bugged and badgered a local movie theater until they agreed to show the documentary movie "Under Our Skin" for a couple of special screenings. I went to the screening yesterday. The movie was powerful, compelling, sad and hopeful all at the same time. It really helped explain the Lyme controversy, the Lyme disease epidemic and what kind of things Lyme can do to a person. Karen and her husband Al had run around town putting up flyers the day before, because her ad got bumped off the local paper at the last minute. Nevertheless, there were quite a few people there, and we all received an education about Lyme disease, which was the point of the whole thing. Brava, Karen!

It also happened to be Karen's birthday, so after the movie, we all went to her house for a barbecue. Whew! There is no way I would take that on after a couple of days like that! But that's Karen. She responds to adversity with determination; I respond by taking a nap and hoping it all goes away.

Happy Mother's Day

2010-05-09T06:14:00.000-07:00

Happy Mother's Day to all the Moms out there.

My biological mother died years ago (1986) of breast cancer. It was terrible. Fortunately for me, I had another mom; my Stepmom, Jan. To be sure, we didn't always get along at first. She came into our family at the tender age of 24, and suddenly had the care of a 10 year girl and a 12 year old boy, both of whom still had dreams of their own mother coming back. She quit the job she had worked so hard at; she was moving up fast in that company, but she thought it was more important to devote her time to getting to know me and my brother. What that meant for us, though, was that we had to say goodbye to the nanny who had raised us for the last 5 years. Resentment galore! There was a lot of friction in our family for years; it was rough on us kids, and very rough on Jan, too. But after we all grew up a bit (quite a bit, in my case) Jan and I found that we had built a friendship, and then a real mother-daughter relationship grew out of that. Part of it was the birth of our little brother, Drew. He was the sweetest, most adorable, little boy ever; even when he was a baby. Everyone was crazy about him; my brother and I could have been jealous and resentful, but we weren't. Drew was just too cute to resent. He kind of brought us all together.

However it happened, Jan became my Mom. Now, her health isn't good; she's going through a terrible time in her life. Her bones are so fragile, and her balance is messed up for some reason. She can't do a lot of the things she loves to do; even simple things. It's difficult just to go out to a restaurant or anything like that. She's just waiting for her body to heal and trying not to hurt herself any further before the next operation. I'm hoping and praying that the doctors can help her.

So, Happy Mother's Day, Mom. You are in my thoughts and in my heart every day,

A weighty issue

2010-05-07T03:29:00.000-07:00

I never thought I'd say this, but I'm losing too much weight. Since this time last year, I've gone from 135 pounds (a weight that I've been hovering around for several years) to 116 pounds and most of that decline has been in the last 4 months. Since I'm only 5'3", that's not a bad weight, but it's extremely unusual for me. The last time I weighed this little (since getting my full growth) was when I was 16 years old and recovering from 5 weeks in the hospital and 2 operations!

So what does it mean? I've had all kinds of lab tests, and I'm as normal as can be, except that I have vitamin D deficiency. I've since read that a fairly large percentage of Parkinson's patients (in one study 55%) are vitamin D deficient. I don't think that's the problem. Maybe my appetite isn't what it used to be, but I eat. I know I do.

Well, I go back to my GP next week, so I'll see what she has to say on the subject. I'm getting so tired of going to doctors; make me feel like I'm sick or something.

Better today

2010-05-02T09:33:00.000-07:00

The Sunnyvale Parkinson's Walk went very well! I managed the whole walk without too much trouble, and I raised $825 for Parkinson's research, thanks to my wonderful donors. I feel much better now, though very tired. I took a Baclofen and an Ambien last night and got a good, solid 6 hours of sleep; I feel like a new woman. The muscles are still clenching up a little, but now I've discovered that the Baclofen actually does work if I take it soon enough, and it doesn't give side effects. The migraine must have been a coincidence.

Anyway, I think the walk was good for me on several levels, and it has inspired me to step up my exercise routine a little. Now, let's see if I follow through... :-)

What fresh hell is this?

2010-05-01T03:47:00.000-07:00

It's almost 4:00 in the morning. I've been awake since 2:30, trying to relax the muscles in my body so that I can sleep, but it's no good. The dystonia that started in my left foot seems to have spread; my entire left leg is painfully tight, my right leg is not far behind. The muscles in my neck and shoulders are not listening to my commands either. I tell them to relax, and they won't; well, only for a second or two anyway. Even my throat muscles are painfully tight; it feels the way your throat does when you are about to cry, but worse.

The Parkinson's walk is today; what am I going to do if this doesn't subside? Get the cane out and hobble on, I guess. Oh well, at least I got a good solid 2 and a half hours of sleep...

Getting ready for the Parkinson's Walk

2010-04-24T20:02:00.000-07:00

Well, I couldn't make it to the Parkinson's Unity Walk in NYC this year, but fortunately, there's still our local version. The Sunnyvale Parkinson's Walk is affiliated with the Parkinson's Unity Walk, and all the funds we raise go to the same places (the Michael J Fox Foundation, National Parkinson's Foundation, Parkinson's Disease Foundation, Parkinson's Action Network, and several others). Please sponsor me, if you can! Click on this link to donate:
http://www.unitywalk.org/events/participant.php?memID=6940&eventID=1

I hope that local folks can come out and join us on Saturday, May 1st. Here is the flyer:

Happy National Parkinson's Month

2010-04-01T05:25:00.001-07:00

April is here, and so it's the start of the first "official" National Parkinson's Month. I'm preparing to send out my Parkinson's Quilt square (hopefully today) and I've designed and printed flyers for the local Parkinson's Walk which happens May 1st. I'm going to donate to my friend Pokie's Parkinson's Walk efforts, and I've dug out a week's worth of Parkinson's themed t-shirts to wear to work. I'm ready!!

I feel suddenly energized, ready for a new start. The cloud of depression is lifting, and I'm reminded of the old saying about silver linings; how every dark cloud has a silver lining, that is. Here's a list of some of mine:

I HATE being cold. Silver Lining: I LOVE warming up again, especially if it involves a blanket, a fireplace, a cup of hot chocolate and a window to view the storm.
I HATE crowds. Silver Lining: I LOVE the crowd reaction at shows and movies. It's part of the whole experience to me.
I HATE being dragged out of my comfort zone to do something new. Silver Lining: once I get there, I LOVE the feeling of adventure and novelty, and later on, I love the feeling of acccomplishment.
I HATE Parkinson's. Silver Lining: I LOVE the friends that I've made, the inspiration they've given me, the rearrangement of my priorities, the closer relationships I've forged with my family. I also love the feeling of having a purpose; my purpose is to do what I can to cure this stupid disease, in my own little way. My purpose is to keep fighting for my right to have the full, happy life I've always envisioned.

It's not as bad as I thought.. or feared

2010-03-24T21:10:00.000-07:00

I just got back from our weekly ballroom dance class, and it made me think about how worried I was back when I was diagnosed in 2006. It's amazing to look back on the fear and uncertainty I felt at that time. I was afraid that I would be seriously disabled by now (even though I knew that that wasn't the typical progression). I worried that I might have to quit my job, that I wouldn't be able to do the things I wanted to do, and that I would be a burden on my family. Well, 4 years later, here I am; still working full time, still doing what I like to do, including dancing. I may not be able to dance as long as I would like, but I can still keep up. Sure, I'm a little shaky and very tired, but we had so much fun!

My neurologist says that actually he saw some Parkinson's symptoms in me when I went to him for dizziness and migraines back in 2003, but he wasn't sure, and my symptoms were not interfering with my life really, so he didn't say anything. That means that I'm probably not just 4 years down the Parkinson's path, but actually more like 7 years. And I'm doing great! It's very heartening, and makes me optimistic about the future.

It's one thing to look at a celebrity like Michael J. Fox and be amazed at how well he's doing, but it's a lot more personal to look in the mirror objectively and realize how well I'M doing! I just hope that when I'm as far down this road as Michael is, that I'll be doing as well as he is now.

The Parkinson's Quilt: there's still time

2010-03-14T07:18:00.000-07:00

The Parkinson's Disease Foundation is sponsoring the first International Parkinson's Quilt Project. People all over the world are designing and making quilt squares to be put together into a quilt which will be displayed in many places in different countries to raise awareness of Parkinson's Disease. Here's the link: http://www.pdf.org/en/pd_comm_news/release/pr_1259882190
This project is the creative offspring of an amazing lady who engineered the first Parkinson's Quilt.

My good friend Pokie Too (http://my.stltoday.com/pokietoo/blog) had a great idea last year. Through sheer enthusiasm and force of personality, she got a bunch of us on a social networking site called Patients Like Me to design and make quilt squares that represent how Parkinson's has affected our lives. Then she had the quilt squares put together into a beautiful quilt which was displayed at the Parkinson's Unity Walk in New York City last year. It wasn't easy; most of us had never made anything like a quilt square before, and a bunch of PD patients aren't always the best at getting things done on a deadline. We managed it, though, with Pokie's encouragement. She even cajoled a wonderful and talented lady whose life had been touched by Parkinson's to put the quilt together for us (the lady in question donated her services, too!). It turned out beautifully:

After the Unity Walk, a young man from the Parkinson's Disease Foundation and told us that PDF was interesting in sponsoring a bigger, international version of the quilt. Pokie picked up the reins immediately, and helped the Parkinson's Disease Foundation put together the Parkinson's Quilt Project.

This quilt is going to be truly spectacular, with each person designing a 2' by 2' square showing how Parkinson's has touched their lives, whether they are a patient, a caregiver, or a friend or loved one of a patient, or just someone who cares and wants to help. Teams can get together and do a "block" of 16 panels that are related in some way. You can use the event to raise money if you like, or just design a square and donate 25 dollars. There's still time; the deadline is June 1st. You don't have to know how to quilt; the squares can be decorated any way you want. You can use fabric paint or pens, iron-on transfers, or anything really (just nothing that's loose and could fall off, and nothing that can't be folded and unfolded. My own quilt square is part quilting, part applique and is decorated with crocheted yarn, pictures printed on fabric, buttons, glitter, iron-on transfers and beads! Fun project, and a great idea! As I understand it, the first place the quilt will be displayed will be in Scotland later this year.

Visit the link I posted above, and get started on your quilt square today! Oh, here's a link to my quilt page: http://support.pdf.org/Page.aspx?pid=321&frsid=33

Still breaking in the new medication

2010-02-27T07:36:00.000-08:00

I think adding the Amantadine to my other meds is going to work out fine. I have a lot more consistent response to the levadopa; fewer peaks and valleys. Also, I don't seem to get quite as stiff and rigid in the evenings (or at least not as early in the evenings as before). I do seem to have a poor appetite and occasionally some pretty severe dizziness, but that's starting to go away.

I've also been a bit depressed, but depression is a tricky thing. Sometimes, you have a perfectly good reason to be depressed, after all. Work has been extremely stressful, preparing for a big review for the customer and not feeling ready for it, or adequate for the task. Well, the review is over, thank goodness, and I can relax a little. We'll see; I have a lot of work to do and a short time to accomplish it, so the stress is still hovering in the background. Anyway, I don't think it's the meds.

What a list of drugs I take now! Stalevo (which is really 3 drugs; carbidopa, levadopa and entacapone), Requip XL, Zelapar and Amantadine, as well as the medicines for migraines and for insomnia. Oh well; it works, an I'm grateful!

Fun on Valentine's Day

2010-02-19T04:38:00.000-08:00

It's 4:40 in the morning, I've been up for an hour, dystonia is curling my foot up painfully, I'm exhausted, but I'm smiling as I remember how much fun we had last weekend on Valentine's Day...

We took a champagne brunch cruise on San Francisco Bay. When we got to our table, there was a bouquet of tulips, champagne and chocolates for me! Bob had arranged it when he made our reservation. I'm so spoiled! The weather was incredibly foggy (in other words, typical), so for the first half of the cruise, it was like the boat was floating in a cloud. Then, all of a sudden, Alcatraz Island appeared out of the fog, slowly followed by the rest of the bay. It was beautiful, and the weather was warm enough that we could go outside and take a few pictures on one of the upper decks. Here's Bob with the WWII Liberty ship "Jeremiah O'brien" and the skyline of San Francisco in the background:

They had a real live piano player, who was also a great singer, and we danced and danced. It was wonderful! I was exhausted, and I payed for it the next day (I could hardly move), but it was sure worth it. Here we are, after we finally gave up dancing and were recovering at our table:

I'm so lucky to have this wonderful man in my life to share these things with me!

What does Parkinson's feel like...revisited

2010-02-09T18:05:00.001-08:00

This is an update to a previous post. Symptoms have progressed, and I thought I'd share my experience. Even though PD is different for everyone, I remember when I was newly diagnosed, I found the personal experiences of other people very helpful.

I'm still in the "honeymoon" phase of treatment. The medications are still working GREAT for me (although I've had to add a few, and adjust the dosage of others), so none of my symptoms are particularly severe, usually. Still, sometimes they make life a little difficult. Here's a partial list:

1.) Stiffness/Rigidity. This is symptom has now become public enemy number 1 for me. I feel like I can barely move in the morning or in the evening after my meds wear off, and sometimes when I get a little "wearing off" effect during the day. I'm sometimes surprised that I can actually move; it seems to take so much effort. There are times when I actually break out in a sweat because of the effort to put on my coat or pick up a book. I'll be sitting at my desk at work, and suddenly my arms feel like they have heavy weights on them. I can't make the muscles relax, either, which can cause some aches and pains. This seems to be getting better with the addition of the Amantadine.

2.) Slowness. This goes along with the muscle rigidity. No matter how hard I try, there are sometimes some movements that I can't perform fast enough. It's changeable, too, so I don't know from moment to moment whether it will be a problem or not.

3.) Fatigue. Fatigue is something I've learned to live with. I just have to plan ahead and be aware that I may not be able to participate in everything the way I used to. I may have to take a break, and find some time to rest. I may have to go home a little earlier than I used to. I have to prioritize; is it more important to get the laundry and the dishes done, or to pick up the living room? I can't do both today. However, learning to prioritize is a plus, as far as I'm concerned!

4.) Insomnia. I can't sleep for more than 4 - 6 hours at a stretch no matter what I do or what I take. I'm not particularly sleepy during the day, though, so maybe it doesn't matter.

5.) Freezing and Falling. I have to remind myself to be careful and not try to change directions too quickly while I'm walking. Sometimes, when I do that, one or both feet get "stuck" to the floor and can cause me to lose my balance and even fall.

6.) Dyskinesia. It's a very weird feeling when you notice your body moving without your telling it to. So far, I don't have a very big problem with this, but it happens. I was sitting in a meeting once, unaware that my head was moving side to side until someone wondered aloud why I was shaking my head "no"!

7.) Dystonia. Nasty! Like the worst muscle cramp you've ever had, but....not. I can't really explain it, but it just feels different from a regular muscle cramp. For me, my big toe goes up, and the other toes strain down until it's very painful. The only way to stop it is to hold the offending foot in my hands, which is a bit of a stretch. This symptom is getting better, though.

8.) Tremor. For me, tremor isn't a big deal, except when I'm trying to do fine work. It usually only happens when I'm in a "wearing off" period.

There are many more, but these are the major ones for me. As I said, though, my symptoms are mild. As time goes by, I will post updates.

There are also a lot of things that I've GAINED because of PD though!

Feeling better!

2010-02-08T05:04:00.000-08:00

I swear, I respond so quickly and generally so well to all these Parkinson's meds! I've been on the Amantadine a little over a week now, and already my "off" and "on" times are not as extreme, and for some reason, the dystonia has disappeared almost entirely; I haven't even had to take the Baclofen at all. I wonder if the Amantadine did that, or if, like a lot the Parkinson's symptoms, the dystonia comes and goes, and it happened to go just then. Whatever; I feel considerably better.

Gentle reminders

2010-02-02T18:33:00.001-08:00

Just when I start to feel sorry for myself, I get these little, gentle reminders of how good I really have it. I spoke on the phone yesterday to a friend who's dealing with chronic Lyme disease, among other things. Both she and her husband are disabled and can't work, and now they're facing the possibility of losing their house. She has been denied disability benefits, and doesn't really know where to turn next. And she asks ME how I'm feeling! It's a humbling thing.

I guess the moral of the story is: when you start to feel put-upon, take a look around and count your blessings. You'll probably find more than you thought you would; I always do.

Fine tuning the medications

2010-01-30T11:21:00.000-08:00

I went to my neurologist on Thursday and discussed my "wearing off" and dystonia problems with him. He suggested I try a little Amantadine to smooth out the peaks and valleys in my levadopa response, and if that is well-tolerated after a week or two, I'm going to try a little Baclofen for the dystonia. Hopefully, if the Baclofen works, I can take it when I get up at 3:30 or 4:00 in the morning, and it will kick in before the dystonia starts. He cautioned me, though, that dystonia is very hard to treat and the Baclofen may or may not work.

So, I've been taking the Amantadine for a couple of days, and so far I just feel exhausted. I did about an hour of housework this morning and I feel like I just ran a marathon! I always have to give a medication adjustment some time to work, though. Sometimes it takes a few weeks for things to settle out.

It's amazing to think of all the drugs I'm taking in my daily "cocktail": Zelapar (selegiline), Stalevo (levadopa, carbidopa and entacapone), Requip XL (ropinerol), and now Amantadine, too. Then there's the Ambien for insomnia, and the Imitrex for the occasional migraine. Whew! And to think I used to complain about having to remember to take one pill every day!!

Sand Castles

2010-01-24T05:34:00.000-08:00

Sometimes I feel like I'm building sand castles, and Parkinson's is the ocean, crumbling my defenses. I keep having to move farther up the beach and build a new castle, knowing that the ocean will inevitably take that one, too.

I'm neglecting my relationships; I'm curling up within myself, hiding again. I suddenly realize that I'm waiting until I feel better! That's not a good idea. I need to open up again and participate.

Well, they say that knowing is half the battle, so....

Chocolate Morning Glories and Raynaud's Syndrome

2010-01-14T05:55:00.000-08:00

"Chocolate morning glories, chocolate morning glories". That's the phrase that kept running around in my head this morning; woke me up at 4:00 a.m. Why? I don't know. Yesterday, it was a name, "Mobely". I don't know anyone named "Mobely". Ever had a phrase from a song or an advertising jingle running through your head? Same thing, without music. I'm really having a hard time sleeping these days. I figured that if I got up and drew a picture of what I think chocolate morning glories might look like, it would stop ricocheting off the inside of my head. It worked; I'm cured!

Yesterday, I was diagnosed with yet another rare, incurable condition that nobody knows the cause of; Raynaud's Syndrome. It started suddenly this weekend; one finger that goes numb and cold, turns ghostly white, then blue, then red, then back to normal. The doctor says it's no big deal, just keep your hands warm. Oh, I also have carpal tunnel syndrome. The doctor's suggestion for that? Learn to crochet with your feet.

I'm working on it...

Not necessarily New Year's resolutions

2010-01-05T04:58:00.000-08:00

I don't believe in New Year's resolutions. I think it's just setting yourself up for guilt and discouragement, and if you really feel that you need to lose weight or quit smoking and you haven't done it yet, New Year's isn't going to help you. Therefore, the following is NOT a New Year's resolution. It's just that this season of gift giving and gift getting made me realize that a shift in attitude is needed.

In this new year, I'm going to try to remember that every day is a gift to be opened and enjoyed and appreciated. Even if it doesn't fit or it's the wrong color or it's itchy or it doesn't work and the directions are badly translated from another language, or it got broken in the mail, or I simply can't use it. Whether I open the box and find something beautiful or something funny or maybe something that isn't quite what I had hoped for, nevertheless each and every day is a gift wrapped up in shiny paper just for me, and it was given with love.

Happy New Year!

Cruel words

2009-12-19T07:53:00.000-08:00

We were at the football game the other night (9ers won over the Cardinals -- yay!!) and I went down to the concession area to get some hot chocolate. It was around 7:30 at night and I take my last pill at 6:00, so I was starting to move a little slower, and walk a little "funnier". These 2 very young men brushed past me; I could tell they were a little frustrated at my pace. As they walked on, I heard one say to the other, "well, she IS retarded, you know".

"Retarded"? First off, that's not a word one should attach to another person under any circumstance, in my opinion. Second off, why would someone assume that another person is mentally challenged just because they are physically challenged? Or vice versa for that matter.

Well, as I said they were very young (late teens, early 20's), and I don't think he meant it in a bad way. His tone of voice was more like he was telling his friend to cut me some slack. But as I sit here waiting for my meds to kick in and trying to ignore the twisting pain in my foot and ankle from the dystonia, I feel a little discouraged about the state of Parkinson's awareness.

Oh well, we just need to keep on working on it!

Volunteer Therapy

2009-12-06T05:52:00.000-08:00

Bob's feeling well again, thank God, so yesterday we spent a few hours volunteering at a USO care package stuffing party. We joined a group of our co-workers in a huge assembly line, putting together care packages for the troops in Iraq and Afghanistan. We worked, we danced, we laughed and at the end of the morning we had put together and boxed up over 10,000 care packages. It was great!

There's something empowering about helping others, even in a small way. It makes me realize that I still have plenty to offer, and that Parkinson's can't really get me down.

Today, I'm going to try selling some of my jewelry at the local Christmas bazaar as a benefit for the Michael J. Fox Foundation. Even if I just sell one thing, I'll feel like I accomplished something, so wish me luck!

Holy Role Reversal, Batman!

2009-11-27T06:12:00.000-08:00

Suddenly, I'm the caregiver.

Yesterday was a nightmare. Everything was fine and normal all morning; I had just put the turkey in the oven and was sitting down to take a break and do some crochet, when my husband Bob came upstairs saying he didn't feel well. He hardly ever gets sick, and when he does, he very rarely complains, so I knew something was really wrong. When he let go of the banister at the top of the stairs, he almost fell; I had to help him get to the couch. He said he felt like the room was spinning; he was white as a sheet and sweating like crazy. He had vertigo; vertigo so bad that he couldn't walk, and kept throwing up. I called 911, and they came and did some quick tests and evaluations, picked him up and hauled him down the front steps and put him in an ambulance.

I followed the ambulance to the emergency room; I was so upset, I swear I don't remember a moment of that drive. It took a few hours and a parade of young doctors, nurses and interns, but they finally figured out that Bob did NOT have a heart problem or a stroke (thank God!!). His only symptom was severe vertigo and the nausea that goes with it. You could see his eyes twitching back and forth, trying to track the spinning room. They gave him anti-nausea and anti-vertigo medicine, and eventually, after he was feeling better, they sent us home.

They think he has some calcification or something in his inner ear, which has gotten lodged in the wrong place and is causing this problem. I hope he's feeling better today; he isn't up yet, and I'm sitting here listening for signs that he's gotten out of bed, because if it's anything like yesterday, he won't be able to walk without help.

It's so strange; I've gotten so used to being the one that needs help! I didn't realize how much I've come to depend on Bob. Well, even though we didn't get our turkey dinner last night, I'm still so grateful for my blessings. In fact, I'm even more grateful now! It could have been so much worse. And here's a silver lining for you; I had my son turn the oven down to 200 degrees so the turkey wouldn't get overdone, and that turkey is the BEST I've ever cooked! I was starving last night when we got home, and I sliced off a piece. Delicious!! Maybe next year I'll cook it the same way, but WITHOUT the trip to the emergency room...

Thanksgiving is upon us

2009-11-25T08:10:00.000-08:00

So, it's Thanksgiving time again. I like to count my blessings at Thanksgiving, and I've found more and more that it's a good idea to count my blessings a little more often. Like, every day, for instance. I find it very comforting, so I'm going to do a little of that now.

Blessings:

My husband, my son
My parents, my friends
A job that I love,
Though it never ends.

The world in its beauty,
The love in my heart,
My dog and my cat,
How's that for a start?

Bumps in the road,
That show me my strength,
Even these become blessings,
At least at some length.

Most of all, I am glad
Of the love I that I learn,
When I stop being mad,
And I love in return.

Happy Thanksgiving, you wonderful world, you!

Foot Dystonia; more surprises from PD

2009-11-21T10:22:00.000-08:00

I have recently developed foot dystonia. This is not fun; it's like my toes suddenly decide that they can't stand each other's company and are trying to leave. What happens is this: my big toe forces itself up and the other toes force themselves down until it hurts. I can't control it; I can sometimes force the toes to relax for a few seconds, but then they go right back to trying to twist themselves off of my foot. It's quite painful, and it's not something I expected. I've had muscle cramps before, but this is a whole new category of pain. Fortunately, it only happens in the morning and sometimes at night after my meds have worn off, and it seems to only affect the left foot so far.

The doctor has increased my Requip dosage, which puzzled me a little until I did some reading about Dystonia and Parkinson's on the net. It turns out that foot dystonia is one of the hallmarks of Young-Onset Parkinson's, and they think it's caused by levadopa therapy, just as dyskinesia is. Therefore, increasing the levadopa (Stalevo, in my case) would be a bad idea.

I hope this works!

On Shaky Ground.... about tremors

2009-11-11T18:15:00.000-08:00

I nice fellow name Hal recently posted a request for me to describe my tremors in more detail, and it got me thinking about the subject of tremors in general. I used to think (as I imagine most people do) that Parkinson's was all about tremors. Not so. Some Parkinson's patients don't have any tremors at all, and some (like me) have minimal tremors. Furthermore, a lot of books and medical web sites describe the "typical" Parkinson's tremor in great detail; it's a "resting tremor" and doesn't happen when you go to do something with the shaky hand, it's a "pill-rolling" tremor, the frequency of the tremor is such-and-such, it always starts on one side, etc, etc. WRONG!

Yes, these are typical profiles of Parkinson's tremor, but as with everything associated with this crazy disease, every patient has a unique experience. In fact, for some time I was convinced that I didn't have Parkinson's because my tremor wasn't a "pill-rolling" tremor, and it didn't happen just at rest. My neurologist gently pointed out that I had a lot of other symptoms that pointed to PD, and he'd seen many Parkinson's patients with a tremor very much like mine. Here's another little tidbit that one doesn't always glean from the books and web sites (well, I didn't, anyway): the tremor can change quite a bit over time, the same way other symptoms do. For me, it started out as a pretty fast tremor that happened when I was trying to type or do other fiddly little tasks, then it "evolved" into a classic "pill-rolling" tremor, but that was way after I was diagnosed. Now, I hardly ever have tremors at all; I have more problems with stiffness and slowness.

If I had a nickel for every person who has said to me "How can you have Parkinson's? You don't look shaky", I'd be rich. Well... actually I'd probably have about a dollar, but you get my point.

I think I'll go make some Shake 'n' Bake for dinner...

Rough Weekend

2009-11-02T18:08:00.000-08:00

Rough weekend. I can't go into it here, but something terrible has happened in my family, and I've been so worried and stressed. All weekend, every time I started to relax and cheer up, the phone would ring and it would start all over. Of course, Old Man Parkinson is taking this opportunity to drag me down and turn me into his puppet. Ironically, one of the things that having PD has taught me is that you can't let these things get you down. You just need to do everything you reasonably can, and then "turn over" the stuff you can't do anything about.

Doing better now; I think of the words of one of my favorite songs, and it always helps:

SMILE
Words by John Turner and Geoffrey Parsons
Music by Charlie Chaplin (really!)

Smile, though you're heart is aching.
Smile, even though it's breaking.
When there are clouds in the sky
You'll get by
If you smile through your fear and sorrow,
Smile, and maybe tomorrow
You'll see the sun come shining through
for you.

Light up your face with gladness,
Hide every trace of sadness,
although a tear may be ever so near.
That's the time you must keep on trying,
Smile; what's the use of crying?
You'll see that life is still worthwhile
if you'll just smile.

Things I wish I knew when I was diagnosed,

2009-10-24T17:07:00.000-07:00

There are so many things about this disease that I wish I had really, really understood when I was first diagnosed. I mean, I read about these things, but I didn't fully grasp the concepts. Here's a partial list of concepts and advice that I wish I had listened to a little better:

1.) Parkinson's is TRULY different for different people. There really is no point in comparing your symptoms to someone else's because everyone gets their own personal version of the disease.

2.) Symptoms come and symptoms go, but true Parkinson's symptoms are GRADUAL. Anything that changes very quickly (within the course of a few days or a week) is probably NOT Parkinson's progression. If you experience a very sudden increase in Parkinson's symptoms, it usually means that you have some underlying health problem, like an infection or a virus or something, or perhaps some emotional stress. If this lasts more than a few weeks, you might want to discuss the possibility of something other than Parkinson's with your neuro. The mills of Parkinson's grind slowly, but they grind exceedingly small.

3.) Sometimes, you feel awful, but everyone thinks you're fine. We get very, very good at masking symptoms, especially at first. People don't understand what it costs you to look "normal", so try not to get mad when someone says "but you can't have Parkinson's; you look so well!". Take it as a compliment.

4.) It will make your life infinitely easier if you start learning to ask for and accept help now, because you ARE going to need help at some point. However; DON'T ask for trouble. If you feel well enough to go to work, go to work. If you feel well enough to dance, dance. Don't assume that a Parkinson's diagnosis means that you have to behave a certain way. Try to honestly evaluate your capabilities on a constant basis, and don't give up something you love if you don't have to.

5.) Listen to what others say. Often, you are not aware of the "quirks" that others see. One of the things that sent me to the doctor in the first place was the fact that my co-workers had begun to tease me about my "robot walk".

6.) Don't worry; be happy. I know; easier said than done, but try, try, try to keep a positive attitude. Do whatever it takes to keep your rose-colored glasses on. Do something positive: join a support group, participate in fundraising events and/or clinical trials and studies, DONATE YOUR BRAIN. Brain dissection is still the only sure way to diagnose most neurological disorders, and provides an absolutely invaluable source of information to researchers. Healthy brains are needed for comparison, too, so encourage your friends and family to donate their brains as well.

7.) Communicate. Tell others about your condition. When you are not feeling well, let people know. Take advantage of opportunities to educate others about PD.

8.) Most important of all: helping others helps you, too. At least, that's what I have found. Donate blood, become a bone marrow donor, volunteer in your community. Remember that there are lots of people out there who are worse off than you are, and if you can help them, it will empower you and remind you that you still have strength, wisdom and courage to share.

O.K.; maybe I spoke too soon

2009-10-23T20:35:00.000-07:00

I think maybe I did push myself a little too far last weekend. All this week I've been having major "wearing off" problems; I can't even do my crochet after around 8:30 to 9:00 at night. I'm so stiff in the mornings, too. It's hard to even walk. My meds don't even seem to kick in until after 8:00 a.m., and I take my first dose at 5:00 - 5:30 a.m.!

Well, I'll wait a week or so and then call my neuro and see if there's a medication adjustment I can make. Ughh.

In the meantime, our son has brought home a whole bunch of friends this weekend, so I'm not going to be able to relax much. Maybe that's a good thing. We'll see...

Sometimes I surprise myself

2009-10-20T19:21:00.000-07:00

Whew! What a wonderful trip to Disneyland we had! It's very fun, but very tiring, and here's a phenomenon I found amazing; I get stronger the more I push myself. The first day, I had to use my cane. I was exhausted and having problems with pain and balance. The second day, I started out with my cane, but put it away about halfway through the day. The third day, I didn't even take my cane out of the backpack!

What does this mean? I guess it means that I need to push my body to the limit if I want the limit to expand.

I'm in Disneyland!

2009-10-15T21:46:00.000-07:00

Woo Hoo! Bob and I are in Disneyland! Well, to be precise, we're at our hotel across the street from Disneyland, but we'll be in the park tomorrow morning. We are finally celebrating our 24th wedding anniversary (which was in September). I'm so excited! I love this place! More to follow...

Bummer; we lost.

2009-10-11T17:15:00.000-07:00

Today, the 49ers lost to Atlanta 45 to 10. This is all I have to say about that:

On San Francisco Bay today the sun was shining bright,
But not for Forty-Niners fans, the “stick” was dark as night.
The Falcons clipped our wings today and it was more than luck,
Right now, I’m mad enough to say “THE FORTY NINERS SUCK”!

Sorry; had to get that off my chest...

2009-10-06T19:50:00.000-07:00

New symptoms are creeping up on me. I was feeling like I was being stalked by the stupid disease again, so I wrote this:

2009-09-27T12:09:00.000-07:00

Just Okay

I remember what I used to say

When someone asked "How are you today?"
I used to shrug and say "okay"
That's all I had to say; "okay"

And now that I am not okay,
When someone asks "how are you today?"
I smile and say "Doing GREAT today!"
"And thanks for asking, by the way"
Because I know that one fine day,
I'll wish I had today's "okay"

I guess what I really mean to say,
Is there's no such thing as "just okay".

So, how is everyone today?

A Dubious Anniversary

2009-09-20T06:10:00.000-07:00

Three years ago today I sat in the neurologist's office holding my husband's hand and receiving the news that I had Parkinson's Disease. It was surrealistic; we talked calmly about treatment options and disease progression and symptoms, and all the while a little voice in my head was screaming "You've got to be kidding me!". On the one hand, I was a little relieved to know what was wrong with me, and to know that it was most likely not something more serious, like ALS or a Parkinson's Plus syndrome or something like that. On the other hand, I felt that my future had been suddenly taken away from me. I always pictured myself growing old gracefully; staying active and strong, enjoying life with my husband, learning new things. I thought I would be one of those people that others look at and say "I can't believe she's 80!". Now, I suppose that in ten years or so, people will look at me and say "I can't believe she's only 60!".

The thing is, though, that the future was always uncertain. Nothing has changed. To think that you know what your future holds is just self-deception. Since I've realized that, I look forward to the future again, but I also enjoy the present maybe just a little bit more...

To Medicate or Not to Medicate; That is the Question

2009-09-18T20:31:00.000-07:00

When I was first diagnosed with Parkinson's, my neurologist and I discussed the various medication options. To my surprise, one of the options was no medication at all. That hadn't occurred to me. Why would you NOT want medication for a condition that was interfering with your life? Well, I've since discovered that some people (and some doctors) feel that the first 5 or 6 years that you're on medication are considered the "honeymoon" years, when the drugs work really well. They feel that you might want to wait until your symptoms are severe before you start this "honeymoon" period, and not waste it when you're feeling relatively well. Also, the sooner you take levadopa (which pretty much all PD patients will eventually), the sooner you will experience side effects like dyskinesias; those uncontrollable writhing motions that we've all seen Michael J. Fox and others exhibit.

I've thought about this a lot, and I know it's a very individual decision, and there are pros and cons either way, but personally, I am SOOO glad I opted to get medication right away. After all, what am I saving the experience of feeling better for; a rainy day? It's raining NOW. Why wait until I'm older and less capable of doing the things I want to do anyway? Why not NOW? Maybe I'll end up with dyskinesias a few years earlier, but who cares? Right now, I'm working full time, I walk every day, I take ballroom dancing lessons every week, and I was able to dance until past midnight at my brother's wedding. I'm more fit than I have been in ten years or so, and I feel better than I have in at least 5 years. For me, it was the right decision. We put things off and say to ourselves "Someday, I'm going to.....". Then we run out of "somedays".

What a wonderful world...

2009-09-02T21:58:00.000-07:00

I just got back from NY after the most wonderful wedding. I think that's the most fun I've ever had at a wedding, including my own! Beautiful ceremony, smiles and tears of joy, lovely music, great food, lots of dancing; what more could one wish for? But the best part was to see my brother standing there under the canopy with his beautiful bride, wearing the happiest expression I've ever seen on his face. I was trying to hard not to cry during the ceremony, and what happens? My calm and phlegmatic brother starts crying while saying his vows!

Drew and Debra at their wedding rehearsal dinner at a really cool Brazilian restaurant in NYC

I was very pleasantly surprised, too, to find that I was not only able to stay up past midnight, but also to dance almost every other song! I really didn't think I could do it, but I just gave it a shot, and it turns out I could. I'm still paying for it with aches and pains, but it was SOOO worth it!

During the week, we also got a chance to visit with friends and family, some of whom I haven't seen in... forever. In fact, my cousin Elaine was there, and I don't think I've seen her since we were both kids. Yes, that was a LONG time ago, but let's not go there... I also got to visit with my aunt and uncle (fun and fascinating people; my aunt is a successful artist and art teacher and a real hoot as well), and my other cousin and his family (he has a 13 year old daughter who's taller than me!). I was reminded of what an extraordinary family I am part of, and I'm so happy that we're now part of another incredible family, too. What a combination!

Drew and Debra at the wedding reception.

My Dad and Bob try on their tuxedos

Wedding bells for my brother, Drew!

2009-08-22T13:17:00.000-07:00

Tomorrow we're off to New York again; this time for my "little" brother Drew's wedding on the 29th of August. His fiance, Debra, is an absolute peach! Here's a picture of the happy couple:

I'm so excited; this is going to be great!! Every now and then, you see a couple who are just perfect for each other, and you know that there is something special about them. Drew and Debra are like that. They are both so warm-hearted, so funny, so smart, so talented!

The wedding itself is going to be beautiful, at sunset with the Manhattan skyline in the background. I'm going to be a bridesmaid, and Bob and Rusty are both groomsmen. I told Debra she didn't have to feel obligated to include me, but she insisted. It's going to be so much fun, but soooo tiring, too. It's going to be a challenge, I know, especially since the wedding is in the evening, and I'll be off my meds, but I'm determined to do everything I need to do and have fun as well! Bob and I will even get a chance to show off our new dance moves, I hope. Then there's all the relatives who will be in town, many of whom I haven't seen since I was a child. Got a lot of socializing to do, that's for sure.

So today, instead of just packing and resting up, we're also cleaning the house because Bob's mother and sister are coming to our house for a few days after the wedding. On top of that, there's a 49ers pre-season game this afternoon, and there's no way we can miss that. Tomorrow, we get up at 4:00 a.m. in order to get to our flight on time. Wheeeee!!! We're going to be BEAT!

I sure hope I can handle all this...

Fun vs. exhaustion

2009-08-01T19:48:00.000-07:00

There is a new paradigm in my life. Wait; I hate the word "paradigm"!! O.k.; I have a new way of looking at things. I used to think "I'm exhausted; I can't go to (name of event)". Now, I think "I'm going to be exhausted anyway, so I might as well have fun in the meanwhile". It seems like a small shift in attitude, but it actually adds up to a major shift. What it means is that I don't expect to feel perfect; I don't expect to feel "well". I just expect to feel well enough to do whatever the activity in question is.

Case in point: yesterday, my husband and I our son and our son's girlfriend went up to San Francisco to celebrate my brother's birthday. We went to the King Tut exhibit at the new DeYoung museum. Lots of walking, and the exhibit was very crowded and very dimly lit. All conditions that are difficult for me. Well, guess what? I had a great time anyway! The exhibit was breath-takingly beautiful, and it was great spending time with my brother and his wife. I've missed them so much! My sister-in-law, KC has a lot of health problems, and so we don't get to see them very much, even though they only live about an hour away.

I actually like the feeling of pushing my body towards its limit of endurance; it feels good to push the envelope. I just have to be a little careful, otherwise I pay for it. Recently, I've been having some "freezing" problems, and it gets worse as I get more tired. I've fallen a couple of times, and it's a very frightening thing. It's like a nightmare; I trip over something, and I can't recover. It feels like I'm wrapped up in a blanket or something; I can't stop myself from falling. So, I have to learn to avoid that, but still do what I want to do.

YOU DON'T OWN ME, PARKINSON'S!! I'M GOING TO HAVE FUN ANYWAY!!!!

Making excuses; why should I?

2009-07-16T11:01:00.000-07:00

Bob and I went to our ballroom dance class last night, and I found myself in the position of having to explain myself. See, I can only dance for about an hour, and then my legs start to shake and I have trouble moving them (especially the left one). I also get muscle cramps in my feet, and now I'm starting to have "freezing" problems, too, where one leg just doesn't move when the rest of the body does, so I slip and/or fall.

Last night, after a wonderful hour of learning to Samba (a really fun dance, by the way), I slipped a couple of times and almost fell, and since my feet had cramped up and I was having trouble moving anyway, I decided to call it a night. Well, several people tried to get me to keep going; they thought I was just giving up too soon, I guess. I had to explain that I have Parkinson's and I just can't keep going as long as they can. That was good enough for most of the folks, but a couple of the guys clearly didn't get it. They kept trying to encourage me to try again. I know they were trying to help, but it made me feel so "wussy"!

The problem is that I've always prided myself on not being a quitter. I may not be the best at what I'm trying to do, but I stick with it. So, when someone implies that I'm not trying hard enough, it hurts. I don't think that most people understand that it's not just a question of strength and determination. I've got plenty of strength and determination, thank you very much. I have to respect my limits, though, especially if it becomes a safety issue.

I guess next time I should say something like "Gee, I'd love to be able to keep going, but if I do, I'm likely to fall, and that wouldn't be a pretty sight. Besides, I might just take you with me!" That would get them!

Fun at the Flea Market, and a surprise gift

2009-07-12T17:07:00.000-07:00

Our tiny little town (official population 750, actual population probably about 1,000) had its annual flea market today, and I had a booth there. I donned my "Parkie Princess" t-shirt, and hung up the Team Fox banner I had designed. I proudly set out all the beaded jewelry I've made over the last few months, plus some gently used clothing, and set up shop in anticipation of making some money for the Michael J. Fox Foundation.

Here's my booth:

Well, it was a flea market, and not too many people were interested in buying NEW beaded jewelry; they were looking for real deals on used things. I was feeling discouraged. Then, this lovely older woman showed up, and poked around the booth for a little while, then asked me if she could take one of the informational leaflets I had printed out from the Michael J. Fox Foundation. Of course, I replied "Please, of course! Take one!", so she did and wandered off.
A while later, she came back. She said to me "I just wanted to thank you for doing this; my husband has been diagnosed with Parkinson's, and I've learned so much about it just from reading this". Well, she made my day! We chatted for a bit, and she told me that she herself had epilepsy, for which she has had a surgery similar to DBS. She also said that she thinks her husband is in denial, and she's concerned because she's heard that the longer you wait to start medication, the less effective it is. I told her that the latest research says that that's not necessarily so, and in any case it varies widely from patient to patient.
To me, this meeting was an unexpected gift. I looked at this beautiful lady, clearly so strong and courageous, and I thought "In some small way, I have helped her today". Suddenly, I didn't care that I hadn't made a lot of money at the flea market. I made something more important. I made a difference.

Saw the doctor yesterday...

2009-07-07T16:56:00.000-07:00

It seems that visits with my doctors have become milestones for me. That being the case, yesterday was a great milestone in my life. I had my regular appointment with my neurologist, and he confirmed my suspicions: I'm doing FANTASTIC!! He says you can't even tell I have Parkinson's disease. I can tell, of course, but the way that I look on the outside is a reflection of how good I'm feeling on the inside. I'm walking well, I'm able to do everything I want to do (though maybe not as long as I'd like to do it :-)). I have little or no side effects from the medications to deal with. I'm doing great at work. I sleep well, I eat well; I just can't complain at all, and I don't want to! Heck, I'm taking ballroom dancing lessons once a week and doing o.k. at that, too.

The only thing of any concern is that I've had a couple of "freezing" episodes, one that caused me to fall flat on my face without being able to even bring up my hands to stop me, and one that caused an "almost" fall. The doctor says I need to do more than just be careful; I need to make sure that my path through the house is unobstructed. In other words, I just received a prescription to clean up my house. Yikes. He hasn't seen my house, obviously. I wonder if the insurance company will get me a maid, since it's doctor's orders. Hmmm..... probably not.

Traces of Parkinson's

2009-06-11T17:20:00.000-07:00

I have noticed all kinds of things accumulating around me. In my house, my purse, my car, my desk at work. Medication timers, pill boxes, pill cutters, pills in bottles and blister packs and powders in white envelopes. I have a little purse around my neck most of the time; it holds my medication timer and meds. I have a collapsible cane and a shoulder holster to carry it in; it hangs in my closet most of the time, unless I have some serious walking to do.

Downstairs by the computer are old versions of flyers and handouts for various fund raising events I've participated in. There are printouts of jewelry designs (also for fund raising events). Our hard disk is filling up with my designs for T-shirts, pamphlets, flyers, banners, jewelry, all for fighting Parkinson's.

I've also noticed that Parkinson's apparently causes piles. Piles of unwashed laundry, piles of unfolded clean laundry, piles of dishes, piles of old newspapers, piles of bead containers and craft boxes.

I don't know where I'm going with this, or why it makes me sad. It's just a sad kind of day, and I sometimes wish all these traces of Parkinson's would disappear and everything would be like it used to be. On the other hand, there are so many good things I've accumulated, I wouldn't give them up for anything. Especially the friends.

I Yam What I Yam and That's All That I Yam

2009-05-30T06:05:00.000-07:00

Sitting in the hair stylist's chair while the grey is slowly being removed from my hair, I get introspective. I think: this is the only thing I do as a concession to age.

On the heels of that thought, is this one: I have become one of the people I used to secretly laugh at when I was young. You know; those middle-aged people who stopped maturing but kept aging? I see myself sitting there in my flip-flops, jeans and Star Trek t-shirt and I think: when are you going to grow up?

I have essentially the same wardrobe I did in high school, just a few sizes larger. I play video games when I'm supposed to be doing housework. I have 3 Game Boys because they keep coming out with cooler ones. I occasionally watch Saturday morning cartoons. I quote Mel Brooks movies and Monty Python and Star Trek. I like Gummi Bears. I wear beads, I play the ukulele, I never style my hair or wear much makeup. I think it's funny to give my age in hexidecimal. I only wear pantyhose maybe once or twice a year. I know all 150 of the original Pokemon types. I know how to pronounce "Pokemon". I love all things Disney, and when I die, I want to have my ashes exploded with the fireworks over Disneyland. WHAT THE HELL KIND OF 49-YEAR-OLD IS THAT?

There was a long silence in my head after that question. Then the answer came: "Your kind".

The fact is that I am who and what I am. I'm just not going to let any one thing define me; not my age, not my job, not even my family and most certainly not some stupid disease. All of those things are part of who I am, but not one of them alone defines me. There are no rules about who I have to be just because of my age or anything else. So there.

Dang. I'm all out of Gummi Bears. Where's my Game Boy?

A Difficult But Lovely Weekend

2009-05-25T20:51:00.000-07:00

I'm so proud of myself!! I just got back from a fun, but physically challenging weekend, and I DID IT!! We went on our traditional Memorial Day weekend boat trip to Folsom Lake this weekend, and boating is hard work. I was worried that I wouldn't be able to pull my own weight any more. I managed, though, I managed. Not only was it a lot of physical work, but there were also some challenges to overcome. The trip start out inauspiciously. We had been driving about an hour and a half when suddenly, Bob said "Uh Oh" in that tone of voice that says something is really wrong. There was smoke pouring from the axle of the boat trailer. He carefully pulled over just as the tire went "KAPOW!". He went to go look at the damage, and found that the axle of the trailer was broken clean through. After scratching our heads for a few minutes and making some fruitless calls to trailer repair places, we unhitched the boat, left it sitting forlornly by the side of the rode and drove into the town of Tracy to get help. We got this helpful tow truck driver to come out and help us; here he is taking the wheel off:Note the angle of the wheel!
Then, he chained up the broken axle:

We limped our poor trailer to a place called "Travln Toys" and they did a great job. It turns out that by coincidence they had an extra axle for our trailer, which they had gotten with another order! So, in about an hour and a half, we were on the road again.

It was all worth it, though. What a beautiful evening! Especially after we finally got the boat in the water and went and found our friends and rafted up with them for the evening.
Here we are on our boat, the "Miracle Max":

Here's the raft of boats on Saturday night:

We had a ball the rest of the weekend. I'm exhausted, but I have a whole bunch of memories to treasure. I guess my point is that you don't want to give up doing the things you want to do, living the life you want to live, just because of PD, unless you absolutely have to. You never know what all you can do until you try.

I'm going to go limp off and watch some t.v. now....

Mystery Donor

2009-05-23T07:54:00.000-07:00

Someone made a big donation on my Parkinson's Unity Walk page under the name "Network for Good". I don't know who you are, but THANK YOU SO MUCH!!! What a wonderful surprise that was this morning!

By the twitching of my thumbs...

2009-05-17T05:50:00.000-07:00

"It" has spread to my right side. I noticed it yesterday while I was drawing; my right hand was twitching. I put it down to tired muscles. This morning at around 4:30 as I lay in bed trying to go back to sleep, my left hand trembling a bit as usual when I'm off my meds, I noticed my right thumb twitching, a tiny counterpoint. It's not much, and it only happens under certain circumstances, but that's how the original tremor on my left side started.

I didn't expect this, not so soon. But that's the way this disease works; just when you think you've got it under control, it sneaks into some new territory like an attacking enemy in the night. That's o.k.. I fought it on my left side, and I'll fight it on my right!

Waking up with Old Man Parkinson

2009-05-09T22:05:00.000-07:00

A typical morning for me:

Up at 4:00 or 4:30. Shuffle, shuffle, shuffle to the kitchen. Take my Zelapar, it dissolves instantly, leaving a grapefruit tang in my mouth. Notice that the dog is following me around, drooling. Feed the dog. Get my study drug out; a packet of white powder, mix it with juice. Take a vitamin B12 and my first Stalevo (levadopa, carbidopa, entacapone) of the day. Amazed that I know what all those things are now. Shuffle, shuffle, shuffle. Bent over like an old lady. Now the dog has finished his breakfast and wants a treat. Get the dog a treat, but try not to do it right over my slippers, because I prefer them free of dog drool. Shuffle, shuffle to my pill box laying on the counter. Fill it with my pills for the day: another Stalevo for the 8:00 a.m. dose, plus 4 Requip XL pills. 5 more Stalevo tablets for 8:00, 10:30, 1:00, 3:30, and 6:00. Put the pill box in the special shoulder bag I made for it. The bag is getting worn now. Time to go downstairs and make coffee. Shuffle, shuffle... step carefully down the stairs. Look out for the cat zooming under my feet. Forgot my slippers upstairs; shuffle, shuffle, shuffle back up to get them. Back downstairs with warmer feet. Make the coffee, then sit at the computer, exhausted, and wonder how I'll get through the day. Waiting for the levadopa to kick in, I remind myself that so many people have worse things to worry about. I am a lucky person. I know this, but in the morning I forget sometimes.

I'm so glad I have a dog to drool in my slippers, a cat to trip me on the stairs, a house in the woods with beautiful trees all around and the most wonderful man in the world to love me.

Article about me in the company newspaper

2009-05-08T13:56:00.000-07:00

The company I work for very kindly had an article written about me in the company paper, "New Horizons". My boss and HIS boss and I were all interviewed on the phone by a young lady named Amy who was not only a very good writer and very efficient, but also very nice, too (good job, Amy!). Anyway, here's the article:

Marian Bumala, circuit design engineer, embraces challenge. Working for the past 25 years at the Advanced Technology Center in Palo Alto, Calif., she shoulders a lot of responsibility in developing complex instruments to further our nations’ space exploration. So it is no surprise when she was diagnosed six years ago with young-onset Parkinson’s disease, a degenerative disease of the brain that can impair motor skills, that she faced the challenge squarely on all fronts. But Bumala’s story isn’t just about her disease. It’s about teamwork between a hard-working employee and colleagues who value her input.

Continually amazed by her teammates’ support, Bumala praises Space System Company for its commitment to helping employees living with diseases such as Parkinson’s. “I am so thankful for my job and for my co-workers outpouring support as I learn to deal with the emotional and physical effects of living with this disease. I have been able to remain an active and contributing member of the team in spite of my illness. There’s no doubt in my mind that staying active on my work team has contributed to my success in dealing with the disease thus far,” says Bumala.
Her manager, Stephen Fuselier, says he was saddened when he heard of Bumala’s diagnosis, and is committed to ensuring she remains a contributing member of the team. “We will continue to do everything we can to accommodate Marian’s needs,” says Fuselier. “She is a valuable asset to this organization and makes great contributions to our team and our customers.”

Bumala also has the support of many peers. Her colleagues are tuned into Bumala’s diminished capacity for multi-tasking and sitting for long periods of time in meetings. “My colleagues’ support enhances my morale,” says Bumala. “I am encouraged and motivated to keep working as long as the disease allows.”
Earl Aamodt, research engineer, has worked with Bumala for the past 23 years and has provided her with a lot of emotional support since her diagnosis. “When I found out Marian was diagnosed with Parkinson’s disease it hit close to home because my mother passed away from the disease,” says Aamodt. “Marian has become a close friend of mine over the years and she knows I am available anytime she needs me whether it be for emotional support or help on the job.”

Bumala has directed her self-described proactive personality to help fight the disease on the national stage. She is a passionate fundraiser for the Michael J. Fox foundation and is participating in the Parkinson’s Unity Walk this April in New York. “Being proactive and positive is the best medicine,” she says. “I have been able to raise over $6,000 for Parkinson’s disease research largely thanks to my generous co-workers. The company even donated a wheelchair for me to use during a 5K walk I participated in for Parkinson’s disease in San Francisco last year.

I'm so grateful for my job, my immediate superiors (who are also friends of mine) and my wonderful co-workers. What an amazing group of people!

The Walk

2009-04-30T17:28:00.001-07:00

The Parkinson's Unity Walk... Wow; what an experience that was. It was uplifting and yet sad in some ways, happy and bittersweet. It was proud and defiant, yet humbling as well. To see all those thousands of people whose lives have been altered by PD in the same ways that the lives of my family and myself have been... well, it's indescribable.

It was also unexpectedly physically challenging for me. I think it was because it was so hot (around 85 degrees), and we had to sit still so long waiting for the speechifying to finish up. Anyway, for whatever reason, my leg started acting up again about halfway through and I had to depend on my cane to finish the walk. I made it, though! It was so great to have my family and friends there with me, too.

Regrets:
1) Friends that couldn't make it there.
2) Not being able to meet with everyone that I knew, and not having enough time with those I did meet.
3) Getting separated from most of the team.
4) Not being able to get the people around us to sing with us as we played our little ukulele song!

Special joys:
1) The weather. It was hot, but so beautiful! I'd rather have that than rain and cold any day.
2) Meeting so many "famous" people for the first time face to face (like Cherie, and Rachenista, and Tigger Girl, and Mamamia, and Dixie Pixie, and Dylis, and Moakes and Jeana, and ... well, you all know who you are!).
3) Seeing our beautiful quilt unfolded for the first time, and seeing the admiration and appreciation on everyone's faces.
4) Just observing all the different people there; babies, children, young adults, baby boomers like us, older people, people of all colors and types. I smile when I think of the group of young guys with their skateboards who just came in off the street and walked with us for a while. After about 10 minutes, one of them asked "So... what are we marching for?". Love it.

Two more days

2009-04-23T06:42:00.000-07:00

Here we are in NY state, about 40 minutes from NYC. It's two days until the Unity Walk, and we are all sick. Me, my Dad, my brother, my husband; we all have a bad cold. I imagine that my Mom and my brother's fiance, Debra are next. On top of that, my Mom is not doing as well as she had hoped. We were supposed to all go to a show and to dinner in the city yesterday, but she couldn't come. She broke her back a couple years ago, and has never really recovered. Last night, she fell again. I'm so worried about her, and I'm not sure what to do. My husband and I are supposed to go up to Brooklyn and spend the next few days with my brother and Debra (they're going to the Walk with us), but I just don't know.

Well, I'm pretty sure I'll make it to the Walk one way or another. I can't imagine coming all this way, being only 40 minutes away and not going!

Wish me and my family luck... I think we need it.

Off on the road to NY

2009-04-17T04:29:00.000-07:00

So here I am, getting ready to leave for NY. We'll be visiting with my family for a week, then participating in the Parkinson's Unity Walk in Central Park on the 25th. I'm so excited!! It's going to be an emotional event for me, I'm sure.

My blood work came back normal, so maybe I don't have to worry about hemochromatosis right now. I'm glad I found that out before we left on our trip; I hate worrying about that kind of stuff, especially when I'm trying to relax and have fun!

Unfortunately, I'm in a little pain, because we got a little over-enthusiastic while dancing the other day, and the upshot is I think I may have broken a rib. If nothing else I pulled the heck out of the muscles and/or bruised the chest. Oh well, into every life a lttle rain must fall, right? Nothing is going to ruin the Unity Walk for me!

More on Hemochromatosis

2009-04-13T11:29:00.000-07:00

Did some research last night about Hemochromatosis and found this interesting little tidbit from the Iron Disorders Institute web site:

Mismanaged iron in the brain is seen in those patients with neurodegenerative diseases: Alzheimer's, early onset Parkinson's, epilepsy, multiple sclerosis, and Huntington's disease.

Hmmm.... makes you wonder. In the last 4 years, I've had 2 spikes in blood iron. I compared the testing dates with my blood donor history and found that in both cases, there had been a "gap" in my regular blood donations for one reason or another. The worst one happened after I hadn't given blood for over a year.

I think I need to talk to my doctor about this, especially since I'm no longer menstruating, so I'm at higher risk for extra iron building up in my body. I also need to do some more research.

Genetic testing results from 23andMe

2009-04-11T13:54:00.000-07:00

I got my test results back from 23andMe last night. After puzzling over the reports for a while, I figured out the following facts of significance to me:

1) I do NOT have the LRRK marker that is associated with the highest risk of genetic PD. My risk for Parkinson's is listed as dead average. The great news here is that my son is unlikely to inherit PD from me, and the rest of my family does not have an increased genetic risk either.

2) I do NOT have any of the 3 BRCA mutations most commonly associated with inherited breast cancer; this is a HUGE relief to me, especially in light of my family history.

3) I DO have an increased risk of Rheumatoid Arthritis, type 1 diabetes and age-related macular degeneration.

4) I carry 2 copies of a gene mutation for Hereditary Hemachromatosis, giving me a "mildly increased" risk of Hemachromatosis (iron overload). This is interesting to me, because I have had problems with anemia not associated with low iron, and I have also tested high in iron on a couple of occasions. Unfortunately, this is something that can be passed on to one's children.

5) I also MAY have an increased risk of abdominal aortic aneurysms, alcohol dependence, brain aneurysm, heroin addiction, exfoliation glaucoma, dyslexia, and something called Primary Sjorgen's Syndrome, whatever that is.

Whatever. I'm not sure what to think about any of that yet. I'm not really worried, though.

My ancestry turns out to be very boring; I come from entirely European stock. My genetic "haplogroup" is listed as European type "H", which is mostly Scandinavian and Basque populations, but is spread all over Europe and the near East. I kind of knew that, but I was hoping for something exotic in my genetic makeup! Oh well. I guess my ancestors were Vikings.

All in all, the data are very interesting, and I'm glad I took the "23andME" offer. The folks from "23andMe" came to talk to our support group today, and that was very interesting as well. I think this is an exciting project, and I'm very glad that I have the opportunity to participate.

Good advice; PLEASE READ THIS!!

2009-04-06T08:34:00.000-07:00

My friend Sherri at Parkinson's Journey wrote an excellent article on "awareness" and what that means. She also has some terrific advice, not only for people with Parkinson's or other chronic illnesses, but really for everyone. There's a link to the Parkinson's Journey blog on the right side of the page, but here's a link to Sherri's article:
http://parkinsonsjourney.com/aware-an-extraordinary-action

Comforting images

2009-04-01T16:34:00.000-07:00

I don't know about anyone else, but whenever I start to stress, I hold an image in my mind of a place where I feel safe and happy. In my case, that's my grandparents' house in New Mexico back when I was a child. I was thinking of this the other day, and this poem kind of wrote itself in my head:

Wind in the trees,
Warm Summer breeze,
Grandma’s garden in bloom,
Quiet windowseat room.

Rain on the mesa,
Lightning in the air,
Thunderheads rolling,
Wild wind in my hair.

The music of rain falling,
The sound of Grandma calling,
The thirsty desert sighing,
The sudden storm is dying.

Colors on the mesa,
The dusty scent of rain,
Bittersweet and vivid memory,
Always there to ease my pain.

Wind in the trees,
Soft desert breeze,
Though all this is gone,
In my mind it lives on.

Homework Assignment

2009-03-28T17:53:00.000-07:00

When Judy left us (leaving our world a little less colorful by contrast) she gave us a homework assignment. We each drew a random name of one of the others, and were tasked with writing a paragraph about that person. Well, everyone has done that, and here are the results:

"Marian on this assignment (and Marian gets a gold star for turning hers in first):
Anyway, here is my "homework assignment". Turns out, my dog didn't eat it after all!
About My Friend Karen (by Marian)
I used to think that courage meant not being afraid. I used to think that strength meant not crying when your heart was breaking. Then I met Karen. She showed me that courage means going on even though you’re afraid, and strength means reaching out to others even though you’re crying. Karen has looked into the eyes of despair and rejected it. She has laughed through her tears and defied the odds. She has reached out with a strong hand to help others while her world was turning upside down. She is a wise woman and a joyful (and sometimes frightened) little girl all at the same time, and I’m so proud and happy to say that she is also my friend.
Love ya,
Marian
About my friend Sherri (by Judy)
I learned alot about my friend Sherri when she came to visit me in Tennessee in January, so this is a cumulative summary of some of her characteristics. Sherri is of course a writer, so she soaks up things about people without much outward interaction at first. And then I think she evaluates a person or situation with her heart and mind and interacts in a most sensitive manner. She may seem shy upon first meeting her, but then when she speaks what she says is very thoughtful and sincere. She is tentative about sharing much about herself at first, and she puts on the front of handling life with PD quite well, but I'm pretty sure that is because she puts all the hard life stuff in God's hands. Her faith is a strength much greater than her own because she has experienced God's strength in her life before and knows she can depend on it above all others.
While at her home I got to see her with the ones who make her most proud, her family, but I love the look on her face when she talks about and plays with her 'bright spot'...her one year old granddaughter. It is a very special bond they share! And I got to share for an afternoon planting and digging in the dirt with her--another one of her passions. And I learned, here is one way we are different....I like admiring the end result of it all...the lovely garden, and will gladly leave the diggin', sweating, and wondering if what I just planted will grow process to others like her! lol Sherri may look like she is too serious (PD masked facial look) but she can get zannie and silly just as fast as the rest of us!! And her KGB jokes are a riot! To me though, the most impressive characteristic and the trait I most admire in her is her compassionate heart. You immediately sense it, you know it by her words and actions, and in her writings as well. She is selfless, funny, and a wonderful person to know and call my friend.. Thanks Sherri for making my adventure so very special. 4 ever admiring your heart....judy
About my friend Judy (by Karen)
It was nearly two years ago Judy and I met online through a support forum known as Patients Like Me (PLM). She reached out to me through an instant message system they had at PLM. From there a friendship began to blossom. It would not take long before I would really learn exactly what Judy was all about…OK well maybe not exactly she just too unique of an individual for that! Judy has a heart of gold and a spirit of passion for God that stretches beyond the heavens. She has a sense of humor that is infectious especially when she starts to laugh and she also knows how to be not only a compassionate friend, but also giving.

I will never forget the time I came home from work in the afternoon; I was feeling not only emotionally beat up by Parkinson’s but also physically. I had been home on disability and had gone back to work, which was grueling every morning for me. One particular day stands out in my memory; I was too ill to continue my day at work and had to leave after only being at work a few hours. I called Judy on my cell phone en-route home in tears. I felt not only disappointed and betrayed by my body, but embarrassed to admit to my employer that I was having a hard time working a full day. After I had been home for a while my telephone rang; it was Judy on the other end giggling and telling me that when my front door bell rang to open it and sign the paper and please add a tip…I said "What???" she continued to giggle to the point she was in tears on the other end and gasping to catch her breath and then blurted out to me "what kind of pizza do you like??" Yep you guessed it the bighearted Tennessee wild woman ordered me lunch…all the way from Tennessee…I have never had anyone do that for me! Not only was I surprised but so was her credit card company when they called her concerned someone in CA had gotten a hold of her credit card and was using it!! Looking back upon the memory of that very day showed me the heart this gal has for her friends.

Last week Judy made a trip out to the west coast and Marian (another CA gal) and I were on the list of visits…we had a grand time with Judy, Sherri, Marian and myself…No one but Judy could preplan the fun she had in store for us…she went out to the car and returned with a bag filled with small cups of different colors of Play dough…giggled and said "OK everyone pick 3!" We laughed, we sculpted, it was great fun to see four women ranging in age from their 40’s and 50’s so young at heart, each intensely immersed in creating masterpieces! Judy you truly are a wonderful, energetic, vivacious woman…thank you for your friendship!

About my friend Jeanette (by Judy)
I really think I threw my friend in Washington state, Jeanette, a curve ball she never expected when I asked her if I could come and visit her! That's just the way she is ...unassuming the power of her friendship and the blessing of her attitude. If there was a bubbling- over joyous-friend award, she would get it! I so wish she could have come along on the rest of my adventure with me....she would have fit right in...lil bit serious...whole lot of fun and giggles. The other thing so special about Jeanette is how much she just loves people and children and animals. She finds something good in everyone and everything to be grateful to God about. I had the joy of attending her church with her on Sunday morning and it was just a great time of fellowship. Later that day we went on a ferry boat ride and talked Jeanette into coming to Tennessee to visit sometime in the near future. I'm holding her to that promise, no matter what! The thing I absolutely love about Jeanette is her laugh! It is so fun filled and she uses it alot. And she also has the best dead pan humor that is always got me grinning. So Jeanette is my joyful friend. Don't misunderstand, she has her days too when life gets hard, but it doesn't take her long to look and find a blessing to claim or something to laugh about in it all, and that's an amazing thing, I think! Lov ya kiddo...looking forward to you coming to see me in TN!
Judy

About My Friend, Marian (by Sherri)
She walked around the corner as we exited the hotel and I could tell it was Marian by her smile, which matched the one on her Daily Strength and Facebook profiles. We had never officially met, only through the exchange of emails and updates through the PD community.
Marian is quiet and shy but once we all met and exchanged greetings, it was as if we all knew each other forever. Marian makes you feel important and rarely talks about herself but instead asks about you. She has an extremely strong vocabulary, evidenced by her competitive spirit in a game of Cranium. So much so that we blew Judy and her team clear out of the water in that round. An avid reader of such novels such as Moby Dick, she focuses on the importance of its message and not necessarily the size of the fish or what the author chose to name such a massive fish.
If I could use one word to describe Marian, it would be 'charming'. I'm not sure why, except that is what came to mind. She is funny, witty, innocent in her own way - perhaps it's because she made an extraordinary ukulele snake charmer couple, complete with baby snakes, out of an ordinary lump of Play-Doh.
Whatever the reason, Marian is a warm and wonderful person who went from being an acquaintance over the internet into a warm and wonderful and wacky person I am honored to call 'friend'. God is good.
Sherri
About 4 wild women I read about on Facebook by Jeanette (as described by phone to Judy) note: Jeanette knows all four of us online but had only met Judy in person (isn't she lucky?). For her assignment she was to pick some words or phrases to describe Judy, Sherri, Karen, and Marian from the pics on Facebook of Judy's trip:
Jeanette on Judy..."drop-dead gorgeous" (further evidence of her insane humor and need for new glasses!), courageous, uniter, joyful (gee, thanks J!--your check is in the mail, lol
Jeanette on Sherri--struggling (to stay awake??? she did drive awhile), deep, enduring, and a great friend (and Judy agrees!)
Jeanette on Karen--love her smile, infectous attitude, intense (as in Dr. Fernandez --but if she had witnessed the Cranium game she might change this description...lol--you had to be there...no way to describe !)
Jeanette on Marian--looks like she gets along well (with PD and others) and Sparkles as well as great PlayDoh modeler.
Jeanette also mentioned that the two Facebook pics she liked best were of the coat on the octopus bush and on the Chessman statue! Octopus one the best. And she mentioned that she would have loved being a kid again and playing with the Play doh (she said when she ran a daycare she never got to play with it..just always cleaning it up!) And she liked the picture of the sign that said "Live Life...like it's the 2 minute warning". (I did too, Jeanette! see I told ya she was crazy--in the good kind of way! )
Thanks everyone for your thoughts...I hope our blog audiences like this!"

My personal note on all of this: these are totally incredible women, and each one of them is a hero to me. How about Wonder Woman, Super Girl, Bat Girl and ... uhh can't think of another one. Anyway, you get the idea.

What's So Funny?

2009-03-24T08:11:00.000-07:00

Q: What’s so funny? A: Everything!

Judy and Sherri (co-authors of the Parkinson’s Journey blog; see my blog list on the right) came to visit me and Karen this weekend, and we had a ball! We stayed up late, we laughed, we played, we ate ice cream for breakfast (well some of us did ), we laughed some more. In fact, I laughed so much this weekend, it got me thinking about why we laugh. I have a theory that laughter is partially defiance. We laugh to dispel our fear of something, and when we’re not afraid, that thing has no power over us any more. What was it Frank Herbert said… “Fear is the mind-killer, fear is the little death”? Something like that. Well, laughter is the best way to chase fear away that I know of.

So there we were, 4 grown women, sitting around Karen’s kitchen table, playing with Play-doh, (I kid you not), playing charades, taking goofy pictures of each other, and basically laughing till we cried and our stomach muscles hurt. And what do we 4 have in common? Well, a few things, but mostly we share the experience of having an incurable, chronic, degenerative brain disease that is slowly crippling us and eating away at our quality of life. Not very funny. Scary, in fact. So, we laughed at it (and everything else!) and the fear disappeared; it was like when Harry Potter and his friends waved their magic wands and yelled “Ridikulus” at a truly terrifying bogart and it turned into something silly and disappeared.

So here I am, wearing the bright pink and lime green socks that Judy gave me, and a t-shirt that says "Will Work For Dopamine". I’m going to keep laughing, and never let anybody tell me I should be more serious. “Serious” gets me nowhere, but “silly” delivers me from fear.

Coming Down From the "Middle-Age Crazy Tour"

2009-03-22T06:51:00.000-07:00

I will post more on this later, but suffice to say I had a WONDERFUL time meeting Judy and Sherri, the c0-authors of the Parkinson's Journey blog, and spending time with them and with Karen. We laughed, we shopped, we played with play-dough, we ate ice cream, and when we said goodbye, we cried. What an amazing group of women they (we!) are!

23andMe and other new developments

2009-03-14T17:45:00.000-07:00

A lot of us have been sent invitations to join "23andMe", the private genetic evaluation business at a reduced price (usually $399, special deal $25!) for a limited time. This is the brainchild of Sergey Brin, the co-founder of Google, and a well-respected figure around here ("here" being the SF Bay Area). He has arranged a partnership with 23andMe to start the biggest online research project on Parkinson's Disease EVER!
I must admit, I was confused when I got the letter about this, even though the letter was sent by two very respectable entities; the Parkinson's Institute and the Michael J. Fox Foundation. I couldn't figure out what they really wanted and why I was being asked to pay even the reduced rate of $25.oo to basically participate in a research study. Now I know; "23andMe" is a private company, and Sergey Brin has donated a LOT of his own money to underwrite the cost of their services. What happens is, they send you a genetic testing kit (a saliva test). You spit in the tube and follow whatever directions are on the kit, then send it back. In about 10 weeks you get you get a complete detailed report on your genetic makeup. This report will tell you if you have any of the genes known to cause Parkinson's (only a very small percentage of Parkies do) and also whether you have any of the genes known to cause other serious conditions, such as cancer or Huntington's Disease. The report will also include information about your ancestry, which should be interesting for most people.
This information is invaluable for researchers, especially when combined with the surveys that you have to agree to participating in when you sign up for the service. The data that are mined from this could lead to spectacular discoveries about Parkinson's. Or not; who knows? I think it's worth a shot, myself.
The thing we have to ask ourselves is this: do I WANT to know all this information about my genetics? For myself, I have a family history of breast cancer; my mother had it, and so did her mother. If I have one of the infamous breast cancer gene mutations, what will I do with that information? I'm too much of an optimist to just have my breasts removed to prevent cancer; if they told me I had a 95% chance of getting cancer, I would assume that I would be in the 5% that didn't get it. So, I would probably simply worry about it. That's just me. On the other hand, suppose I found out I DIDN'T have any of those nasty mutated genes? That would really ease my mind.
Anyway, after weighing the pros and cons, I did go ahead and sign up for it. I really think that this will help the researchers find good therapies and possibly a cure that much faster, so it will be worth it to me. I do think, though, that everyone considering signing up for it should think carefully about how the results of the test might affect their lives first.
I will certainly share anything interesting that comes of all this.

How did you find out?

2009-02-22T18:56:00.000-08:00

"Have you considered Parkinson's Disease?"

The words echoed in my head as my neurologist said them. His tone was kind and non-judgemental. He had asked me what I thought was causing my symptoms, and I had replied confidently that I thought it was probably Essential Tremor. I had been doing a a lot of "Googling" and he knew it.

"Have you considered Parkinson's Disease?"

I said "uhhhhhhh..... no."

He said "well, I want you to go home, read up on Parkinson's Disease, then come back to see me and bring your husband with you." I said "O.K.". I thought "Sh%T!" My toes actually curled up and turned cold, like the Wicked Witch of the East.

I did what he said, and by the time my husband and I came to see him the next week, I was mentally prepared to accept his diagnosis. How in the world did my doctor know exactly the right approach to take with me? I don't know, but I'm profoundly grateful. It made it easier for me to accept it and get on with life.

I was kind of wondering how other people found out. I would love to hear your stories, and maybe post them (with your permission of course).

Let me know!

Ready for the Walk

2009-02-12T14:50:00.000-08:00

Well, donations are starting to roll in for the Parkinson's Unity Walk in April. I posted my flyers last week at work, and my wonderful co-workers are already responding. What an amazing group of people they are! I also got a contribution from my stepmom, bless her heart; she and my dad are having some financial problems right now, so I know it's painful to part with cash. They know what this means to me, though.
What does this mean to me?, you ask. It's hard to describe, but participating in this Walk, and doing the other things I do to try to help find a cure for this stupid disease are more important to me than I ever dreamed possible. Almost every free minute of my day is spent thinking of ways to contribute to the cause, and some minutes that aren't free (oops!).
I wish the walk was tomorrow; I'm ready to go now!

If I Only Had a Brain!

2009-02-05T08:49:00.000-08:00

I did it! I donated my brain. Well, I put in the paperwork to allow my brain to be donated to the Parkinson’s Institute after my death. We dropped by the post office before work, and as I got out of the car to go mail my paperwork, I smiled and said to my husband “Well, here goes my brain!” It was weird, but as the envelopes with my forms in them left my fingers, I felt just a touch of separation anxiety, as if my brain really was in one of those envelopes. When I closed the mail slot, though, there was this warm glow filling up my soul; a feeling of joy, almost euphoria. It’s the same way I felt when I crossed the finish line with Team Parkinson at the SF Marathon.

Now I feel like I’m carrying precious cargo in my head. Who knows? Maybe my brain holds the secret to some terrible disease. I won’t say Parkinson’s, because by the time I die of old age, I expect Parkinson’s to be cured! On the other hand, if I died in a car crash tomorrow, I know that I will still be able to contribute somehow.

“And perhaps I’d deserve ya,
and be even worthy erve ya
if I only had a brain”

Positive Things; what are some of the GOOD things that PD has brought me?

2009-01-31T06:11:00.000-08:00

As promised, I thought I'd list some of the things I've gained as a result of having Parkinson's:

A sense of purpose. I feel that I have a cause now, maybe a small inkling of what God has in mind for me. I have something to work towards, and that keeps me going. I've never really had this kind of direction before. Doing positive things to help myself and others and working towards a goal makes life more meaningful.

An appreciation for little things in life. More and more, I find myself noticing and appreciating little things like the wind in the trees, the way the squirrels chase each other and tease the dog, flowers growing where they're not supposed to (instead of in the planter box!), the way it feels to walk as fast as I can just for the joy of walking.

Prioritization. I'm beginning to understand, for the first time in my life, that my priorities need to be rearranged. For years, I put work first. I paid lip service to putting family first or putting my needs first, but when it came down to it, it was work all the way. I let my job define me as a person; if I failed at work, I failed at life. Now that I've had to face the realization that I can't do my job as well as I used to, I'm starting to let go a little. This is a slow process, and I'm still working on it, but as they say, the first step is admitting you have a problem!

Less self consciousness. When I was first diagnosed, I worried a lot about people staring at me or judging me based on my symptoms. Now, I've found that most people don't notice anything; most of the time people aren't looking at me at all. I've also come around to feeling like I don't care what they think anyway; if they want to stare, I'll stare back and smile! If they are bold enough to ask what's wrong (as has happened on a couple of occasions) I treat it as an educational opportunity. Spreading the word about PD is a good thing, right? It's kind of freeing; I just don't care what I look like as much as I used to. If my makeup isn't perfect (or isn't on at all), or I haven't bothered to do anything with my hair except brush it, I think "Hey! I have Parkinson's and I'm menopausal; what do they want?"

Friends. I've never had so many friends in my life; friends that share personal thoughts and feelings, friends that call and ask how I'm doing, friends that keep track of one another and get concerned if one of the circle hasn't called or been on line in a while. It's wonderful to see all these beautiful people drawn together to face adversity together. I'm so happy to be a part of it!

There are other things, too but I can't think right now. Need coffee.......