Death by Parkinson's

Every time I go into see my neurologist, she asks me if I've thought about having DBS surgery. I roll my eyes and let her know my thoughts are the same. It's still brain surgery and I'm not ready for brain surgery. At this, she will remind me of the limitations of my medication and say, “You are young, you know. I'll be treating you for the next forty years.”

I thought about this when I read, once again, an obituary which said the deceased had died of Parkinson's disease. Whenever I read this, I yell out loud to all the people in the newspaper, deceased or not, to inform them, “YOU DON'T DIE OF PARKINSON'S, YOU DIE WITH PARKINSON'S!” This is what I've been told, anyway. What's up? Am I wrong?

Time to go to the experts.

The Parkinson's Disease Foundation says this:

Q: I just found out a friend has PD. I don't want to ask him this question, but what is the long-term prognosis? Is it fatal? (anonymous)

        A: Parkinson's disease is not fatal.

http://www.pdf.org/en/pins_res_center/question/342 (read the entire answer!!)

It's disconcerting, to say the least, to see Parkinson's disease listed as the cause of death. This seems to be a widely held belief. One can even look on the internet and find lists of people who have died of Parkinson's. There's a list of celebrities and a list of politicians. There's even a list of chess players who died of this disease.

Wow.

I wonder if chess players are more at risk for developing Parkinson's?

Admittedly, complications of Parkinson's can cause problems which can shorten one's life. Most of the complications are similar to getting old. If we can't move as much, we're more susceptible to things like pneumonia and heart disease. Choking is a danger. There are undoubtedly other complications, but I'll leave them for now. I don't let myself go down that road very often.

I'm not trying to discount these dangers. I've had the Heimlich maneuver done on me four times. From this, I've learned to not eat meat or salads when my medications are wearing off. I've also learned not to get angry and go on a rant about something or someone while I'm eating meat. That's what happened the first time I choked and it had nothing to do with Parkinson's.

There are many other complications of life which can cause death. Remember what Bilbo says, “It's a dangerous business, Frodo, walking out your front door.” If we go about thinking of all the possible ways our lives can be shortened, we won't go very far at all. And, of course, we know staying home and doing nothing isn't conducive to a long life, either. I don't really think about this much at all, not anymore, and not until I read one more article listing death by Parkinson's.

Out of curiosity, I had a look at one of the websites with its list of PD victims. The site is “The Political Graveyard” and contains many different types of lists. I looked at their list of politicians who died of Parkinson's disease. I was pleased to note how much information is included in each entry, including the exact age of the person in years and days.

I was even more pleased to see the average age of the victims. Most were in their mid to upper 80's. The one in his 60's actually died of a heart attack and had Progressive Supernuclear Palsy, not Parkinson's. Then there is Milward Lee Simpson, from Cody, Wyoming, who died of Parkinson's disease at age 95 years, 210 days. If PD is what took his life, it sure took its time about it!  

I'm going along with my doctor, though not necessarily with her suggestion of brain surgery. I'm going to assume she'll be treating me for the next 40 years. That will make me 94 years, 360 days old... and counting.

I realize, of course, this might not happen. Who knows whether my doctor will still be around in forty years.

Dys - what??

I know there's been a lot of changes in the field of dentistry in the last decade, however, when did someone decide it was a good idea to have patients close their mouth over the blasted suction tube? This first came to my attention several years ago when I was going to a respected periodontist to have my teeth cleaned. That was the day their office learned the meaning of the word, “dystonia”. As soon as my lips closed over the tube, my whole body twisted and contracted into a pretzel. It doesn't make teeth cleaning very easy, especially as I couldn't open my mouth to let go of the tube.

At this point, my dentist is very understanding and so are most of his assistants. Every once in awhile, there's someone new working with Dr. Sherman and I have to explain all over again. Actually, all I'm able to do is shake my head vigorously and refuse to close my mouth. Invariably, they give me their best patient look. Obviously, this patient isn't all together. They repeat their request at least twice until I finally awkwardly attempt to speak, despite the suction tube which is still waiting for my lips to close around it.

“Ah cand,” I tell the assistant, confirming his/her opinion of my intelligence.

I get a puzzled look in return. If I'm lucky, this is when the assistant will take the suction tube out of my mouth so I can speak more clearly – or at least as clear as I can when half my face is numb.

“I can't,” I explain once more, “it triggers my dystonia.”

“Dys – what?”

I used to try and explain my dystonia to people. Lately, I simply tell them I have Parkinson's disease. Then they smile and nod. They don't really understand, but it's a recognizable diagnosis. It's what Michael J. Fox has, and everyone knows Michael J. Fox. I realize this is a cop-out, but I rationalize it because I've already been sitting in the dentist chair for 3 hours and I don't want to take up any more time than absolutely necessary.

There is a lot of websites about Parkinson's disease on the internet and for this reason, I have chosen not to have specific medical information about PD in my journal. I hadn't intended to include medical information about Dystonia, but perhaps it would be a good idea. The dystonia community is much smaller and they don't have celebrity spokespeople to make sure everyone is aware of this disorder.

Someone on our online dystonia support group suggested we try to recruit a celebrity who has dystonia to speak up for us. I offered then, but was turned down. My celebrity status isn't quite up there with Michael, Mohammed Ali, Davis Phinney, and all those other folks. That I know of, the group has yet to find their celebrity recruit, so I will take up the slack until they do, at least on my website. I hope the information will be beneficial to others.

More information will follow soon, and I invite anyone from the dystonia community to give suggestions for what to include. If there are any links to websites that have been particularly helpful, I'd like to include them here.  

Feel free to share any of this information with your dentists and their assistants.

15 Best Parkinson's Blogs of 2012

Healthline.com has come out with a list of their pick of the top 15 blogs for Parkinson's disease, 2012. I would highly recommend you take the time to look through these sites. They are all, without exception, great blogs.

Best Parkinson's Blogs

I found a new favorite amongst them:  

Sitting Comfortably?  This is the blog of Andy Daly: artist, teacher, photographer, swimmer, cyclist, and Tae Kwon Do black belt.  He has Parkinson's, too.  

There are other familiar sites from Kate Kelsall (Shake, Rattle, and Roll), Bibmomma, and Dirtybutter, and of course, Bob Kuhn's "Positively Parkinson's".  

In case you didn't know, Bob has been traveling around the world to collect stories about Parkinson's disease.  I was also reminded of Peter Dunlap-Shohl's blog, "Off and On", from Alaska.  Peter is a cartoonist.

There's more, of course.  Studio Foxhoven even got in there!  After you look at the list and peruse the websites, go back and look through Healthline's website.  I've used this site as a reference any number of times.  

The Sports Car of my Dreams

When I was in elementary school, I loved to look through the Sears Catalogue and plan my dream house.  After days of looking, I would carefully fill out the order forms with all the furniture, appliances, and home decor for my future abode.  By the time I was in high school, I traded in the Sears catalogue for the Auto Trader magazine.  This was even more exciting than furniture.

Having a car meant freedom.  Having freedom meant getting away whenever I wanted, going wherever I wanted to go, and staying away as long as I wanted.  At least, that's what I thought when I was in high school.  We were always a one car family and getting a chance to drive the car was a rare treat.  My dad was very strict about our driving, too.  We were not to drive on the highway or go to certain neighborhoods after dark. This meant I drove on the highway and, well, I just didn't tell him where I was going.  I knew I would soon have my own car and then I wouldn't have to answer to anyone.

Paging through the Auto Trader, I would find my dream car - a 1965 Austin Healey. I would find every Austin Healey for sale in our area and mark the pages.  Then, I would carefully calculate the time I would need to raise the cash from my 75 cent/hour babysitting money.  I concluded I would need to babysit for approximately 8000 hours.

I eventually gave up on the Austin Healey and set my sights on a Triumph.  Though my financial situation hadn't changed much, I had added a family to my babysitting roster who gave tips.  On a good night, I might make $5 or $6.  If I kept up my work, I might just be able to afford the car by the time I was .... 65.

I ended up with an orange 1974 Pinto with an 8 track tape player.  Not that I minded too much. At least I had a car.

Now for my confession.  I've been looking at sporty vehicles again and I have my eye on one.  It's sleek and beautiful.  It handles well and can turn on a dime.  It can hold up to 320 lbs and go as fast as 6 mph!  It's also green.  An electric vehicle, it can go about 10 miles to the charge with a lithium battery.  What is most exciting, it only weighs 36 lbs, including the battery!  It folds up and can be put in a bag and stored in the overhead compartment on an airplane.  

It's a Travel Scoot, invented by Howard Huber, an engineer and amateur airplane builder who had injured his legs in a hang gliding accident years ago.  He wanted a vehicle that was light enough to take on a small airplane. It didn't exist at the time, so he invented one.  It's the Austin Healey of the mobility scooters, a Triumph in engineering!  

http://www.travelscoot.com/

I'm only feeling moderatly guilty for betraying my Pride Revo. Todd, the Pride mechanic, came by yesterday to look over the Revo.  He was impressed.  I've had it for 3 years and haven't replaced the batteries... yet.  It seems the batteries may have a month or so of life left in them.  Worse than that, the drive train and motor needs to be replaced. We were lucky.  Though the warranty expired a month ago, Pride offered to give us the parts at half price.  

I've come up in the world now and I'm not dependent on my 75 cent/hr babysitting jobs. I make gnomes instead.  I have my calculations.  For 60 gnomes, I can get the Revo fixed and the batteries replaced.  For 220 gnomes, I could get the Austin.. I mean the Travel Scoot.  

For now, I'm getting the Revo fixed.  I'll need it next month when I start school.  Oh yeah, I'm starting school in the fall and this time, I won't be teaching.  I'll be taking two classes: Spanish and Introduction to Political Science.  As it's an election year, I'm sure the Political Science class will be very interesting.  

I'll take the bus to school and use the Revo to get around campus. I did a dry run yesterday and it was great, only my battery started to wimp out on the hill coming home from the bus.  That's when I pulled out the scooter catalogue.  Time to dream again!

When Life hands You a box of Rotten Peaches

Forget the lemons. We know what to do when life hands us lemons, and lemonade is just the not so creative beginning. There's lemons in furniture polish, cleaners, and laundry detergent. Honey-lemon tea can help soothe a sore throat, and socks soaked in lemon water and put on your feet can bring down a fever*. There are so many incredible uses for lemons. If life hands you lemons, that's cool.

But what do you do when life hands you a box of rotten peaches? Years ago, a friend told me this story:

At a time when dishonest peach salesmen roamed the country, a man bought a box of peaches from a roadside stand. When he got home and looked carefully in the box, he discovered that underneath the top layer of good fruit, everything else was rotten. You can't make peach cobbler or peach juice with rotten fruit. In fact, there's not much at all you can do with a whole box of rotten peaches. The peach pits are even poisonous.

What do you do when life hands you a box of rotten peaches?

The man was angry at first and went back to the roadside stand to complain, but when he arrived at the place, both the stand and the dishonest peach salesman were gone. What could he do?

What do you do when life hands you a box of rotten peaches?

The man walked home with his box. As he had paid a good price for the peaches, he didn't want to just throw it all away. After taking out the few good pieces of fruit, he took the rest to a place in his garden where nothing was growing. He dug some shallow trenches and buried the rotten peaches. He didn't just leave it at that. Over the next few years, he tended all of his garden, including the area where the peaches had been planted. When the first tiny seedlings appeared, he carefully weeded around them, keeping the soil moist. In the winter, he added mulch to protect the new trees from freezing.

It takes four years to go from peach seedling to peach harvest. That's a lot of patience.

I tend to get impatient when life hands me lemons. I spent many years dutifully trying to make lemonade, trying to cover up the sour taste by adding something sweet. Eventually I realized what a bitter aftertaste this had for me. For a long time after that, I simply complained about how sour the lemons were. It has taken a long time for me to learn all the other more creative things one can do with all those sour lemons. I still forget from time to time, but fortunately I have friends who gently remind me to shut up and stop complaining.

There are a lot of positive, inspirational quotes out there. I enjoy many of them, but this story is my favorite. It reminds me to have patience. It reminds me that thinking positively isn't enough and can, if not done properly, be a bit like adding sweetener to lemons. It's good, but not if I use it to cover up my challenges and pretend they aren't there. I need to remember to work positively with all the ups, downs, lemons, and rotten peaches in my life; and keep working, even when I don't necessarily feel positive.

It would be a lovely fairy tale ending if the dishonest peach seller came back and the man graciously gave him a box of good peaches. The thief may have even turned over a new leaf and become an honest man. Ah, but even good farmers are still human, and for all I know, he might have punched the salesman first, then given him a peach or two.

It's more likely the two never met again, for the story is true. I once knew this peach farmer, which makes this story just that much sweeter.

Written in honor of all those friends to whom life has recently given large boxes of rotten peaches and all those who have tended their gardens faithfully for so many years.

 * http://www.steinerhealth.org/health/fever/   instructions for fever wrap