It was a dark and stormy Christmas...

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

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

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

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 :-)

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

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.

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.

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

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

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

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

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....

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

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

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!

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

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

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

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

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?

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

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

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

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

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

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

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

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!

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

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

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

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

"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

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!