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Saturday 25 February 2012

But it was just one beer!

We decided to eat at a little bodega-type place around the corner, outside of course. It was hot, so I decided a beer would be appropriate. But, my memory is not what it used to be, if it ever was. Alcohol and amantadine do not enjoy each other's company (see In Vino Veritas in January). I should have remembered but the beer tasted so cool and good against a background of bikini clad young ladies heading for the beach with their buff boyfriends in tow; taxis and really expensive cars passing by under a canopy of palm trees that line the street (there are no rusty or dirty cars down here). It was a scene out of a postcard and a bottle of beer fit in perfectly. I swallowed it down and spent the rest of the night regretting it. The combination of the beer and the medication brought on insomnia. I WAS AWAKE ALL NIGHT!!!!

The energy of the beer/amantadine cocktail lasted well into the morning and I was able to do a 3 mile run at 7:30AM. The fastest run yet. Who needs steroids!

I crashed about noon. No more alcohol for this PWD.

Wednesday 22 February 2012

They wept to see such quantities of sand. If only this were cleared away.......

OK. Here we are in South Beach, Florida, about a mile from the sun. On the day of our arrival it was a record breaking 88F (31C). Unfortunately, a cold front came through that night and by 1PM the next day, the temperature had only reached 75F (24C). The rest of this week promises temperature in the low 80's.

I decided to experiment.

THEORY - PD is affected by temperature.

APPARATUS - one long, sandy beach, tropical temperatures, bathing suit and the usual running gear.

METHOD - Cut down the drugs. Take no drugs on my morning run on the beach when the temperature was at least 70F.

OBSERVATION - The result was no tremor whatsoever, a good quick gait, right arm swing normal. No sign of PD. Contrast that with my cold weather drug free morning walks. The tremor starts immediately and lasts a good half mile to a mile and then stops but I have to keep my mind on the stoppage or it will let loose.

Conclusion - Miami heat has a positive effect on my PD. Maybe we should spend winters here and not just 3 weeks.

PREDICTION - Would miss the children and grandchildren too much. We are doomed to winter.

By the way, as usual, I managed quite a sunburn the first day. Maybe that is one of the variables that positively affects the tremor. That may be true, but it is more likely that it will also cause skin cancer, just ask my dermatologist. However, I lack common sense and a serious sunburn has never stopped me in the past on the theory that if you fish for 5 hours and only catch a sunburn, you are still better off than the worm.

Furthermore, it may be a long hot run in the sun will cool one's PD!

Wednesday 15 February 2012

The Big Chill

Once I went to a football game with two teenage boys. It was November and it was cold! I, being aware of my mortality by then, wore several lawyers of clothing with a touque and scarf and warm boots. They, being unaware they were mortal, wore short winter jackets, touques and running shoes. I told them they were going to freeze. "Yah", they said, "but we will look cool."

At half time, they disappeared. I found them in the men's washroom, under a heater that was hanging on a wall, wrapping toilet paper around their feet, inside their runners, to keep their feet warm. I started to laugh and said, "Right, you guys look real cool now!"

Years later, one of them told me they had never been so cold. On the other hand, I had been as warm as possible, while sitting for an hour, on a metal seat, and a temperature of about -12C (5F). Even as a teenager, I would never have dressed so poorly that I would have had to have used toilet paper for insulation. I just never let myself get too cold. That is, until now.

The hand and foot on the affected side of my body (right side) get extremely cold at around 3 in the afternoon. The cold lasts about 2 hours. Toilet paper is no help, nor are hand warmers or mitts. Nothing helps. My right hand in particular gets so cold that it becomes very painful in the wrist. Oddly, my hand doesn't feel cold to my wife and it doesn't matter what the air temperature is or that I am trying to warm it up in some manner. I looked up "cold hand" in the PD forums and found other people who suffer the same symptom. It is just another of PD's little jokes, but I am finding it more and more difficult to appreciate the humor.

Thursday 9 February 2012

Good News - Bad News.

Parkin is a gene that has a role in protecting dopamine producing cells. When it mutates, it can no longer protect those cells and dopamine levels drop off producing a form of PD. This is a genetic form of PD and accounts for less than 10% of the cases. It is associated with early onset of PD.

Scientists have made a breakthrough that may help all victims of the disease.

Their findings reveal some potential new drug targets for Parkinson's and a new platform to screen treatments that might mimic the protective functions of parkin, the gene they investigated. This could lead to the dopamine producing cells being protected and thus slow down the progression of the "disease".

I am getting used to "hallucinations" or "very realistic dreams". I can't decide which is at fault. The latest came while I was watching TV. A man appeared beside me, dressed all in blue, walked across the room and melded with the TV, appearing for a moment on the screen before the program I was watching returned. Did I doze off? It is certainly possible and I might have been in some twilight zone, not quite conscious but enough so to make me doubt I was sleeping. I am just not sure.

Reality is an hallucination for me these days.

Sunday 5 February 2012

Medicine is magical and magical is art

Temperature today is forecast for a high of +7C (45F). This in itself is a miracle. In fact, Paris today will be colder than Winnipeg. Our normal high temperature for today is -10C (14F). Normal low -20C (4 below F). Global warming here, ice age in Europe. The warmth actually makes my morning walk more difficult as the snow semi-melts, leaving a type of slippery sludge in places.

I went to the movement disorder clinic on Friday and saw the doctor for about 5 minutes. He spoke to me about the dangers of obsessive behaviour when taking Mirapex (third time a doctor has brought it up). I told him I had not experienced any that I knew of. For awhile, I ate more than usual, but that has stopped. In fact, I have lost a few pounds. From what I have read, the thinking of some physicians is that people who get these compulsive side effects are people who had a predilection for them in the first place. On the other hand, I have predilection for doing as little as possible - a quest at which I am remarkably successful! Obsessive behaviour would just be too much work.

I have been using the bosu ball and, with a hint from my brother about tightening my abs, I am now able to balance easily on two legs and momentarily on one leg. I stretch each morning and can actually move my neck a little more than 180 degrees, side-to-side, a feat that I could not have achieved a couple of weeks ago, due to stiffness. In fact, these exercises, combined with my running, walking
and weight training have put me in better shape than I have been in several years. All the marvellous mobility systems in my body being controlled by a failing brain.

I was at the dermatoligist earlier in the week. He had taken a section out of a growth on my chest to see if it was cancerous. It wasn't. He likes to chat and we got on to PD. He said that if we were having this talk 10 years ago, he would have felt sorry for me (or words to that effect). Today, however, advances in medication......... and he went on, giving me an optimistic view that through the miracle of medicine, a cure is not far away and medication will only improve while we wait for that cure.

Every day holds the possibility of that miracle. If I were religious, I would pray for the miracle but I kind of feel that would be like asking God to not make two times two equal to four. I will just have to wait and count on the magic of medicine.

Wednesday 1 February 2012

Something is happening here, but you don’t know what it is, do you, Mister Jones?

I have been getting along very well. The drugs work wonders. Most of the time I feel perfectly normal. My voice is low and raspy, like Bob Dylan's, only worse. But that is really the only outward indication of my malady; although, my wife claims she can see it in may face sometimes. Maybe.

However, last night I was awakened by a cramp in my right leg. Now if you have never experienced a PD cramp, it is impossible to give you an understanding of how painful it is, but believe me, it HURTS. It went away but an hour or so later, I was awakened by a very strange feeling. My entire body was shivering, like I was experiencing hypothermia. The room was warm. The temperature outside was about -3C (27F), unseasonably warm. I had on good pyjamas ("pajamas" for my friends down south) and, I was under a comforter. I couldn't be cold, that seemed very unlikely. Still, I thought I must be chilled so I brought a heating pad into bed. That didn't bring immediate relief, but the feeling eventually went away and I fell back asleep. I have no idea if the feeling disappeared as a result of the heating pad, but I am leaning away from that explanation. The fact is, I just don't know. Is this another of PD's little joys?

The unknowns of PD keep revealing themselves to me. I would find them fascinating if I weren't the victim.