Gimme a break...

Now God, I know I haven't been a good boy at times in the past but I seem to be getting hit with a few good shots of punishment these days. First PD and now - a possible hole in the retina of my right eye. Scheduled for laser surgery tomorrow. To top it all off, my beloved Blue Bombers were defeated by the B.C. Lions in the Grey Cup game. The shame!

I guess it could be worse; I could live in Toronto!

I busted a mirror and got seven years bad luck, but my lawyer thinks he can get me five. (Steven Wright)

This past Friday I began seeing flashes in my right eye. Since it was the right side of my body, I figured PD must somehow be causing them. On Saturday, my eye was lighting up like the 4th of July! I called an optometrist and made an appointment for Monday. On Sunday not only was I getting flashes, I was also experiencing seeing things, like threads or spider webs, in front of my eye. This didn't sound like PD. I went to my appointment and after a thorough examination learned that the vitreous in my eye was pulling away from my retina. This is a natural aging event and nothing to worry about. In my case however, part of the vitreous remained attached to the retina and the fear is when it finally lets go, it could tear a hole in the retina.

"It is nothing to do with PD or the drugs you are taking," the doctor said. "Nor am I too concerned," he assured me.

He stood there looking at me and added, "I will be back in a minute" and he left the room.

When he returned, he held out a card, "I made an appointment for you with an ophthalmologist. It is tomorrow."

Somehow I think maybe he is a little concerned. We will see what happens today.

It would seem my string of good luck is coming to an end; but, as the Russians say, “He that is afraid of bad luck will never know good”.

I ain't afraid of that bad luck!!! I will just have to wait for my good luck to return.

We struggle and we stagger down the snakes and up the ladder

I am a newcomer to PD and what I am going through is a cakewalk compared to the PWP who have had it for some time. What follows is an account written this past Remembrance Day by a contributor to Parkinsonforum.org. Her online name is X. and this is what she goes through in the first couple of hours after waking up.

November 11 2011

04 15 - wake up with backache because I have been unable to turn in my sleep. I also have numb heels from the pressure of the bed clothes and staying in one position.

04 25 - Reach to left to turn on light and knock pills on floor.
Fumble around bed to find my home-made rope-ladder to pull myself up into sitting position, but my arms aren't strong enough the first time, so I collapse back into bed.

04 30 - Second try, I try using my back muscles, but the pain is even worse than in my arms, so I give it 10 minutes.

04 40 - Try again to pull myself up and with the help of my bed handle I get into upright position, reach the door handle and the grab the handrail to get to the loo. Make it just in time.
.
04 45 - Have trouble sorting myself out and head off back to bedroom, but get stopped by dystonia in right foot - toes curl downwards, so i can't walk but get on my knees to crawl back to bed, but getting off floor is a struggle. Find pills, but can't reach taps for water til dystonia stops.

Cannot lie down because of PD-induced acid reflux problem. Sit on bed and wait until dystonia goes.

05 00 - Get water, take pills. Wait.

05 50 - Pills start to work.

This is how I start my day.

This is the ugly side of PD that I share only with you, my fellow sufferers, because you understand.

Maybe the world needs to see just how horrific this disease is.
By staying silent, we do ourselves no favours.

I don't relish the day I find myself in X's position. It must be very difficult and yet, she maintains a healthy lifestyle and a positive outlook 10 years after diagnosis. Her story helps me stay strong.

You know the speed of light; but, what is the speed of dark ?

Update on my condition

Tremor - noticeable, but controllable, when my hand hangs by my side. Stress, no matter how insignificant, really aggravates it.

Excess saliva - hasn't happened since the elevator incident

Voice - at times normal, but when I get tired, I speak quietly with a certain smooth, monotone harshness.

Muscle cramps - no terrible ones such as those I had prior to medication. Some cramping but quite manageable.

dystonia - none since the terrible leg cramps twisted my foot and toes prior to medication.

Swallowing difficulty - none since the episode last year.

Tiredness - at times excessive, especially mid afternoon. Bed time is about 8:30PM

Sleep disturbance - definitely. Last night, for example, I slept 6 hours in 3 two hour shifts. Usually awake at 4:30 and outside for a walk by 5AM. Not sure how long the shift breaks last - you do the math.

Balance - seems OK. I can stand on one leg (left one) for about a minute or more. Not so much with the right leg - maybe 20 - 30 seconds. Doesn't affect me in my daily routine.

Gait - perfectly normal. No more "wobbly legs"

Myoclonic spasms - at least 4 prior to getting to sleep. Annoying but not really a problem.

Stiffness - oh yeah! Slows me down a bit.

Parkinsonian mask - nope. It hasn't come back

Handwriting - hate doing it. It can be very frustrating, and, believe or not, very tiring. It always starts off nicely but rapidly deteriorates.

constipation - For sure! But that's OK for me.

PD Stage - I think I am still at stage one but who really knows because the medication works so well that symptoms on my left side would not be noticeable.

Medication side effects - no compulsive behaviour. Exhaustion the only real side effect, but I am in a position where I can deal with that.


All in all, things are not bad. I wish I didn't have PD, but I do, so I will just have to make the best of a raw deal.

Falling down became second nature and it really didn't bother me. (Nancy Kerrigan)

The bad thing about the internet is one can become an "expert" on any disease. There are thousands of sites on the internet about parkinson's and I have probably read most of them. The problem is, if you at all trend toward hypochondria, you start to experience some or all of the symptoms you have read about, or at least you think you do.

Falling is relatively common among PWP. I had a bad fall this summer, actually going head over heels down the sidewalk. There was blood! However, later, after discovering a bump in the sidewalk, I knew that the cause was clumsiness and not PD. But, for a while there, I wondered.

PD affects the victim's balance and every so often I stumble. When I get out of bed, I have to stop for a second just to make a dizzy feeling go away. Of course, this doesn't happen every time I "de-bed"; just sometimes. But, it makes me wonder. Am I going to start falling any time soon? I doubt it. I just ran 3 miles without any problem; however, you never know......

Confucious said that our greatest glory is not in never falling but in getting up every time we fall.

I don't think Confucious had PD!!

To tell or not to tell? That is the question.

There are different opinions among PWP as to whether or not one should make his/her diagnosis public. I, for example, told everyone except my 93 year old mother who has enough problems and worries. Other PWP feel that people will treat you differently if they know you have PD - perhaps even thinking you are less capable mentally. A large number of PWP propose that not only should we tell everyone, we should put our symptoms on display so that the public will understand what we are going through. This faction thinks that if the public could see the symptoms, fund raising for PD research would increase.

I don't know which approach is best. I just know what I did and there was no philosophy or psychology behind my decision. I don't have any problems being "out".

Having said all that, I have no intention of putting my tremor on display. I couldn't stand the whispering.

You can donate to parkinson's research and education in Canada, go to http://www.parkinson.ca/site/c.kgLNIWODKpF/b.5184129/k.2CBF/Donate_Now.htm

Interesting, Uplifting, Article

Diagnosed with the young onset form of the disease, Dr. Soania Mathur overcame the desire to hide her condition and has emerged as a driven advocate for improving the treatment and quality of life for Parkinson’s patients

http://dl.dropbox.com/u/20471681/MPArticle.pdf

“There are so many facets with Parkinson’s. It’s a complicated disease
in that it doesn’t seem like it’s one factor. It’s multifactorial. Genetics play a
role. Environment play a role. So until a specific cause is found, it’s going to be
very difficult to find a cure. But they’re working very hard to find that cause.”

“Ultimately, there will be a cure,” she adds. “Of that, I’m sure.”