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Wednesday 30 November 2011

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!

Tuesday 29 November 2011

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.

Monday 28 November 2011

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.

Friday 25 November 2011

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.

Monday 21 November 2011

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!!

Sunday 20 November 2011

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

Thursday 17 November 2011

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.”

Wednesday 16 November 2011

Some observations are dubious

There is a theory that if you blindfolded a person and told him to walk from point A to a distant point B, the most likely route he would take would be a sine curve
(y = sin x). I have seen it used to explain the meandering of a river and train derailments. I even tried it with my dog one winter. He followed behind me and I walked in a straight line to our destination. When I looked back at our tracks in the snow, mine were in a straight line but his meandered across mine in what was an unruly form of sine curve. Interesting.

At times today on my early morning walk, it felt like I was walking a sine curve too, albeit with a small amplitude. I was kind of wobbly again, as if I had had one too many drinks. It was not for the entire walk, just the last half mile. Now as I write this, I am thinking, here you go again. You are becoming a PD hypochondriac. You were just a little tired from the 2 previous miles. But you never know! It is this uncertainty that eats at me; however, there is no antidote to uncertainty so I will just have to learn to live with it.

Damn!

Sunday 13 November 2011

Say hello to my little friend

The things that make PD bearable are pills. They are dopamine agonists and the super star, Levodopa. At the moment, my pill of choice is mirapex, a dopamine agonist.

Parkinson's is caused by the deterioration of neurons in the brain that produce dopamine. Dopamine serves as a chemical messenger allowing communication between parts of the brain that control movement. This communication coordinates smooth and balanced movement in the muscles. A lack of dopamine causes a loss in the ability to control body movements.

What to do? What to do?

We take drugs that do one of two things (a) drugs that stimulates the receptors in nerves in the brain that normally would be stimulated by dopamine, called dopamine agonists or (b) take a drug that is converted into dopamine when it enters the body, called levodopa or just l-dopa.

One of the drawbacks of continued use of levodopa is it becomes less effective over time and overuse of it may cause, among other things, uncontrolled body movements (dyskinesias). So often, patients are put on dopamine agonists as a beginning treatment.

The dopamine agonist, mirapex, in combination with amantadine, is working well for me. However, as I have stated before, there can be serious side effects to the drug. One side effect is sudden onset of sleep. It can happen anywhere, including when the patient is driving. Other side effects are compulsive behaviours, such as gambling, and there are horror stories of victims losing their entire savings. In one lawsuit in the USA, the plaintiff began taking Mirapex in 1997, and suffered from a 4-year gambling addiction during which he gambled away $260,000. He claimed that Mirapex caused his gambling problem, and that the drug's makers, Pfizer and Boehringer Ingelheim, knew about its potential to cause compulsive behavior and had never issued a warning. He was awarded a huge settlement.

Fortunately, warnings of compulsive behaviour are now standard practice. I would hate to lose mirapex because of some other person's problem.

And, if you are thinking of suing, you might want to take heed of Ambrose Bierce's definition of a lawsuit: A machine which you go into as a pig and come out of as a sausage.

Saturday 12 November 2011

All progress is precarious

Here is an update of my status in my (hopefully) long journey.

I still feel like only my right side is affected, but I don't know for sure. As it was explained to me, as long as the drugs are working, you'll never know how far the disease has progressed - at least in the early stages.

Tremor - confined to my right hand but only occasionally and not nearly with the ferocity as before the drugs. No longer a problem; touch wood.

Leg spasms - have all but disappeared. I get the occasional spasm in my right leg but nothing like the "beast". My feet and toes are not affected and I can usually wait out the spasm which lasts but a few minutes.

Myoclonic type spasms - these are becoming more numerous. They occur in a series of 3 or 4 "jerks" as I am falling asleep. Legs, arms and head are the most frequent victims; although they have occurred in my torso as well.

Balance - no problems

Walking - thought I might have a problem with wobbly legs but I now think that was just hypochondria.

Stiffness - definitely getting stiffer. With activity I loosen up but when I first start out the day, I am extremely stiff throughout my body.

Mentally - doing fine. Occasionally, I see an unwelcome future but, for some unknown reason, I don't dwell on it. Certainly, no depression.

Sleeping - no more than 3 hours straight. A definite sleep disturbance.

Drug dosage per day - 4 amantadine per day (max dosage) and 2mg of mirapex (2 pills 4 times daily). My only side effects are a rash and midday exhaustion.

As that sci-fi writer, Joan Vinge, said.....Wouldn't it be wonderful if no one ever had to worry about the random cruelty of illness or the woes of old age attacking them or their loved ones? (not a precise quote but words to that effect)

Amen to that!

Thursday 10 November 2011

Music hath charms to soothe the savage beast

Had a severe leg cramp in the night. It woke me up, but after awhile it settled down and as I tried to get back to sleep, I suffered three myoclonic-like spasms. There is no pain with the spasms, they are just annoying. Everyone has them but they are usually not serial spasms. The spasm jerks you out of your twilight zone and you waken but you are able to get back to sleep. Not so with serial spasms. After three of them, by 4:30AM, I was wide awake so I went for a walk.

These walks, which would normally bore me silly, are made more interesting because of the music on my ipod. I listen to Leonard Cohen, Roch Voisine, The Commitments, King Biscuit Boy and a young Canadian singer, Sebastian Pigott. The music helps me (a) set a pace and (b) keep from being bored out of my mind. The hour passes quickly.

The third neurologist, a specialist in movement disorders, confirmed to me that there is a school of thought, including him, that believes that vigorous exercise can slow the progression of PD. He approved of my exercise regime. You never know, maybe it will slow the progression. Of course, even when the foremost scientists all agree on something, they could still be wrong...... but why take the chance?

So now to itunes and some more music to keep me going.

Wednesday 9 November 2011

A mystery, mixed with fear

At the movement disorder clinic, yesterday, I saw a gentleman come into the waiting room and sit down. His right hand danced non stop the entire time and I wondered...(a) was he not on medication (b) was he on medication but it didn't work or (c) had he been taking medication, but it no longer worked? I hope it was (a) because he looked most uncomfortable and I knew I did not want to look like that in the future as I would if it were (b) or (c).

I can live with a defaced red face better than I can with my hand going crazy like his.

I must build a dam to hold back the tsunami of fear that haunts my imagination.

Tuesday 8 November 2011

Doubt is not a pleasant condition, but certainty is absurd. (Voltaire)

Well, it is a certainty. I just returned from the Movement Disorder Clinic and a third doctor confirmed what I already knew - I have parkinson's. There can be no doubt. I have most of the required markers:

1. slowness of movement - sometimes, especially when I stand up and begin to
move. Once I am moving, I am normal
2. tremor - check. My hand has a mind of its own when I am not medicated.
3. stiff muscles - check. Getting out of bed is a chore.
4. poor balance - not really, but once or twice I have wondered.

The most telling marker is the fact that the medication I take is widely used in PD and for me, it works. If it works, you probably have PD.

Other secondary symptoms I have (or have had). Constipation - which in my case is a blessing - no more runner's diarrhea. Excessive saliva - sometimes. Difficulty swallowing - about a year ago or so for a couple of weeks. Change in voice - I am sounding like Mel Torme - the velvet fog - but with strep throat. Cramped handwriting - keeps getting worse. Dry skin on the face and scalp - yep, got that too.

I have been lucky to date. I lived a charmed life and thought continued luck was a sure thing. The only sure thing about luck is it can change without notice.

Oh well!

Cold but with a touch of warmth

Winter arrived yesterday. I awoke to an inch of snow. I went for my early morning walk anyway and found it (a) a little slippery and (b) a touch chilly. In fact, after an hour, I was downright cold. Fortunately, except for the odd twitch in my right hand, and the rash on my face, I had no other PD symptoms, such as wobbly legs, and made the couple of miles quite easily. When I got home, I passed a mirror and saw a face made red by the rash and the cold.

On the upside, I got a facebook message from a lovely lady who I taught in grades 7 and 8 about 35 years ago. She told me her father had suffered with PD for 25 years. Hearing that gives me hope that my PD will drag its feet and I will get a good 20 years before ........ She has also been involved in the PD cause for many years. We need more people like her. I hope to get together with her the next time I am in Toronto.

Saturday 5 November 2011

Defacing a face

I have discovered another little "joy" of PD and PD medication, A RASH, and it is on my face. Parts of my face look like they did during my teens except that the rash is combined with my aging cheeks - ie - jowls that are taking on the appearance of the wax on a candle left burning. It is not a pretty picture. However, I'd rather have the rash than the shakes so I will avoid looking in mirrors.

Friday 4 November 2011

I told my doctor I broke my leg in two places and he told me to quit going to those places. (Henny Youngman)

At times, my right leg seems not to work as well as it used to. It feels kind of "dead". It doesn't interfere with running or walking, rather it just feels odd. Fortunately, this dead feeling is not present all the time, which leads me to think I am becoming a hypochondriac, obsessed with differences in my body that I would have ignored otherwise.

Here is a scary fact. According to statistics, there are nearly 100,000 people living with Parkinson’s in Canada. This number is expected to double by the year 2016.

So fellow baby boomers be aware, as you grow older, the risk of developing parkinson's increases greatly.

Old age ain't no place for sissies!

Thursday 3 November 2011

Only the good die young

Went to the funeral of an old friend yesterday. She was 61 years young and, even though I hadn't seen her much in the last couple of decades, I will miss her presence on earth.

I knew there would be a lot of people there, so I planned ahead, taking my medication at the appropriate time and even bringing some with me. Well, as soon as I got in the door, my right hand started up. I pocketed it and made a fist. This worked for a few minutes, then out came the drugs. They were of no help whatsoever. The hand kept on trying to embarrass me. I lasted through the funeral and the hand slowed down as I sat quietly, squeezing it with my left hand. But, at the reception it started again so I pocketed it once more, controlling it by squeezing my car keys, and went to talk to her loved ones. The all pervading sadness in the room was just too great and my hand took advantage of it. I quickly said my goodbyes and left. Within 20 minutes the tremor had stopped and I was back to normal.

Stress and sadness and PD do not go together.

Wednesday 2 November 2011

Life is so unlike theory.

Went for a hour long walk this morning at 5AM. It was cool, about -3C, so I wore gloves and a hat. Gloves are useful in hiding tremors. I experienced some tremor in my right hand while on my walk, but it was rather fleeting. If that was all I had felt, I wouldn't be writing this now. I also felt "wobbly". My best metaphor to describe wobbliness is "sea legs". We traveled to and from England in the age of the ocean liners. In our case, we took the Empress of Britain both ways. If you have never seen an ocean liner, you would be shocked at how big they are - but that doesn't stop them from rolling when the ocean gets upset. The rolling of the ship can cause seasickness and walking is difficult. You stumble and roll with the waves until you get your sea legs and then you wobble. It is kind of an ordinary walk except that you think you might be off balance. Wobbling = sea legs. You can manage to walk without worrying about falling, but it looks a little odd.

I expect wobbliness is just one of those symptoms that will disappear after a good mid day nap and hopefully will remain dormant for a few more years. If not, I can always develop it into an Irish jig.