I am leading a team of walkers for the Parkinson Superwalk on September 7, 2014 at Lafontaine Park in Montreal.
I am a 63 year old hematologist, and I was diagnosed with Parkinson's disease in 2005. Because of progression of the disease I had to cut back on my medical practice in 2010, and I am now completely retired.
Parkinson's Disease is a chronic progressive neurodegenerative disease resulting from the loss of dopamine-producing cells in the brain. The part of the brain involved in Parkinson's Disease co-ordinates body functions such as walking, maintaining balance, and swallowing. Depression and anxiety are frequently part of the disease, and sleep troubles, loss of sense of smell, and tremor are often seen.
The prevalence of Parkinson's disease increases with age, being about 1% at age 60, to 3% at age 80. Therefore with the increasing age of the Canadian population the incidence of Parkinson's disease, like that of Alzheimers, is expected to increase. The incidence of Parkinson's disease increases with the number of years of education, so doctors are over-represented.
Exercise is critical to the wellbeing of Parkinson's Disease patients. These patients are the extreme case of "if you don't use it you lose it." Those who do not take part in exercise programs quickly loose mobility and may die of aspiration pneumonia, (a lung infection resulting from food going into the lungs during meals) or from complications of falls. It is not known to what extent exercise programs can prevent the progression of the disease, but the patients who have a long survival tend to be the patients who maintain an exercise program. Ten years after a diagnosis of Parkinson's Disease 75% of the patients are dead or severely disabled, while 25% maintain good functional mobility. This 25% tends to contain those patients who maintain a regular exercise program.
The Parkinson Superwalk is the main fundraising activity of
Parkinson's Canada The money raised by the walk is used, among other
things, to support services to Parkinson's Disease patients and to
support research in Parkinson"s Disease. The funds raised in the Parkinson Superwalk are used by the Quebec Parkinson Society and the Parkinson Society of Greater Montreal to support, among other things, the exercise and singing programs of Parkinson en Mouvement (The Parkinson Dance Project) which I take part in. This is a non-profit organization providing exercise programs at the Belgo Building and at the Queen Elizabeth Hospital (http://....). Instructors include dance therapists, physiotherapists, and a singing coach. The classes are instructional and fun.
Disease-specific funds like those raised by the Parkinson's Society are also important in supporting of research, particularly that of new researchers. Grants from the Parkinson's Society are easier to obtain than government administered grants are for starting investigators. This availability of these grants encourages new investigators to develop a research interest in Parkinson's disease. This is particularly important with the reduced success rate of new investigators applying for government grants.
I am asking you to help support patients with Parkinson's Disease. by
-supporting the Parkinson's Superwalk in your area (https://www.facebook.com/ParkinsonSuperWalk.ca or http://donate.parkinson.ca/site/PageNavigator/SuperWalk2014/superwalk14_home.html?s_locale=en_CA).
or if you are in the Montreal area
-join my team (Gwenspurll, friends and family) for the Parkinson Superwalk September 7 in Montreal. Register online, (http://donate.parkinson.ca/site/TR/SuperWalk2014/QC_superwalk?team_id=1621&pg=team&fr_id=1179) and ask your friends and family to support your walk. Then join me and my other friends and family for a picnic afterwards in Parc Lafontaine to celebrate the day.
Friday, August 15, 2014
The fire alarm.
I am fire phobic.
Although when I was young I could have won prizes for the depth of my sleep, if there was fire I was always the first there.
When I was 16, my mother collapsed from exhaustion Christmas morning, and while her syncope was being investigated at the hospital, I made the Christmas dinner. This was the first meal I had made for the whole family and guests were coming. As part of the preparation for the guests, I cleaned out the ashes in the fire place, and left them outside the house.
Winnipeg in December is pretty cold.
However a couple of nights later I was awakened by the sound of the door bell. Someone passing by in the back lane had seen tires behind the house burning and flames going up the back of the house. The ashes I had thought were dead had started to burn.
Another time blankets in one of the kids bedrooms were pushed against a night light. I woke to the smell of smoke and pulled the smouldering bedding out of the house. The only damage was to a few floor tiles.
More recently I was visiting a friend in South Carolina. A week after I returned to Montreal she phoned me to tell me her house had burned to the ground. The garage door opener had been malfunctioning and smouldered for some days, then caught fire. The fire chief told her that if anyone had been home they would have died, because they would have been so sedated by the carbon monoxide that by the time the fire alarm went off, they would not have heard the alarm.
Previously we had had a carbon monoxide alarm in the house. But it kept going off, and each time it sounded we called the fire station, and they sent a fire truck with lights flashing and sirens going, and they checked the house and found there was no carbon monoxide in the house. Finally we put the alarm between pillows and returned it to Canadian Tire, where they "fixed" it with a hammer. We had been reluctant to replace the carbon monoxide alarm, but given my friend's experience I got one for the upstairs and the one floor main floor. So far, as long as we have not heated alcohol or burned the toast, the carbon monoxide alarms have behaved themselves.
A week ago I was up in the night and I noticed a "Pip, Pip" about every thirty seconds. It took me a few minutes to recognize the sound as the fire alarm. It sounded as though it was coming from the alarm on the second floor landing. I tried to reach it standing on a chair, but it was too high. I carried the ladder from the basement and had my husband Hendrik hold the bottom rungs, I removed the old battery, dated 2010, and replaced it with a new one dated 2014. But I wasn't sure I had snapped the battery all the way on, and the pipping continued. Hendrik released the ladder and practically ran down the stairs roaring.
"What is wrong?"
"I am afraid of heights."
"But you weren't up the ladder. I was."
"I had fear of heights for you."
Our son Geoffrey got home, all 6'2" of him, and changed the battery while I held the ladder.
"Pip, pip."
There is another fire alarm in the back bedroom. The sound did not seem to be coming from there, but just in case I brought the ladder in and opened the fire alarm. There were places for 2 batteries inside, but the attachments for the batteries were just hanging down, empty. The sort of thing that is really embarrassing to find after the whole family dies in a fire. I have no idea how that came to be, but I installed new batteries.
"Pip, pip."
"Darn, that battery we put in in the hall must not be the right brand." We went out to the hardware store, but that was the only brand they had.
Back at home, I was a little puzzled that the sound seemed a little louder in the front bedroom than in the hall. Carefully using my imperfect directional hearing, I found a smoke alarm in a magazine box near the ceiling in the front bedroom. Once the battery in that was changed the "Pip, pip" stopped.
Two days later, "Pip, pip." This time it seemed to be coming from the basement. Quite a feat of precision, considering the batteries have been in for four years. Now that the batteries in the basement fire alarm are changed the house is quiet.
Although when I was young I could have won prizes for the depth of my sleep, if there was fire I was always the first there.
When I was 16, my mother collapsed from exhaustion Christmas morning, and while her syncope was being investigated at the hospital, I made the Christmas dinner. This was the first meal I had made for the whole family and guests were coming. As part of the preparation for the guests, I cleaned out the ashes in the fire place, and left them outside the house.
Winnipeg in December is pretty cold.
However a couple of nights later I was awakened by the sound of the door bell. Someone passing by in the back lane had seen tires behind the house burning and flames going up the back of the house. The ashes I had thought were dead had started to burn.
Another time blankets in one of the kids bedrooms were pushed against a night light. I woke to the smell of smoke and pulled the smouldering bedding out of the house. The only damage was to a few floor tiles.
More recently I was visiting a friend in South Carolina. A week after I returned to Montreal she phoned me to tell me her house had burned to the ground. The garage door opener had been malfunctioning and smouldered for some days, then caught fire. The fire chief told her that if anyone had been home they would have died, because they would have been so sedated by the carbon monoxide that by the time the fire alarm went off, they would not have heard the alarm.
Previously we had had a carbon monoxide alarm in the house. But it kept going off, and each time it sounded we called the fire station, and they sent a fire truck with lights flashing and sirens going, and they checked the house and found there was no carbon monoxide in the house. Finally we put the alarm between pillows and returned it to Canadian Tire, where they "fixed" it with a hammer. We had been reluctant to replace the carbon monoxide alarm, but given my friend's experience I got one for the upstairs and the one floor main floor. So far, as long as we have not heated alcohol or burned the toast, the carbon monoxide alarms have behaved themselves.
A week ago I was up in the night and I noticed a "Pip, Pip" about every thirty seconds. It took me a few minutes to recognize the sound as the fire alarm. It sounded as though it was coming from the alarm on the second floor landing. I tried to reach it standing on a chair, but it was too high. I carried the ladder from the basement and had my husband Hendrik hold the bottom rungs, I removed the old battery, dated 2010, and replaced it with a new one dated 2014. But I wasn't sure I had snapped the battery all the way on, and the pipping continued. Hendrik released the ladder and practically ran down the stairs roaring.
"What is wrong?"
"I am afraid of heights."
"But you weren't up the ladder. I was."
"I had fear of heights for you."
Our son Geoffrey got home, all 6'2" of him, and changed the battery while I held the ladder.
"Pip, pip."
There is another fire alarm in the back bedroom. The sound did not seem to be coming from there, but just in case I brought the ladder in and opened the fire alarm. There were places for 2 batteries inside, but the attachments for the batteries were just hanging down, empty. The sort of thing that is really embarrassing to find after the whole family dies in a fire. I have no idea how that came to be, but I installed new batteries.
"Pip, pip."
"Darn, that battery we put in in the hall must not be the right brand." We went out to the hardware store, but that was the only brand they had.
Back at home, I was a little puzzled that the sound seemed a little louder in the front bedroom than in the hall. Carefully using my imperfect directional hearing, I found a smoke alarm in a magazine box near the ceiling in the front bedroom. Once the battery in that was changed the "Pip, pip" stopped.
Two days later, "Pip, pip." This time it seemed to be coming from the basement. Quite a feat of precision, considering the batteries have been in for four years. Now that the batteries in the basement fire alarm are changed the house is quiet.
Wednesday, September 11, 2013
Watercolour Effects, Exhibit of paintings by members of Dix Coups de Pinceau
 | |
| Primary Sunset, 2013, watercolour on paper, 22x30 inches, $500 |
 |
| Storms Ahead, 2013, watercolour on paper, 22xx30 inches, $500 |
 |
| Brooding, 2013 watercolour on paper, 11x14.5 inches, $150 |
 |
| Autumn Sunset. 2013Watercolour on paper, 14.5x19 inches, $250 |
 |
| Tropical Manitoba, 2013, watercolour on paper, 13.5x18 inches, $250 |
 |
| Manitoba Wetlands, 2013, watercolour on paper, 13.5x18 inches, $250 |
 |
| Sunset at Souris, 2013, watercolour on paper, 14x18 inches, $250 |
 |
| September Fields, 2013, watercolour on paper, 9x12, $100 |
My paintings this year reflect that feeling of wonder and freedom.
Dix coups de pinceau will be exhibiting from the 15 to the 22 of October, at Galerie Contemporain, vernissage the 17 October.
Wednesday, July 31, 2013
Prairie paintings
Some new paintings, mainly of prairie scenes, maybe for the next show.
 |
| sunset at the lake |
 |
| sunset |
 |
| Ice on the shore of Lake winnipeg |
 |
| Sunset on the dock |
 |
| Manitoba flatlands |
Thursday, March 28, 2013
Benefit for
5 à 7 le 9 avril
Admission $10
Concert, bar payant et bouchons
Griffintown Café
1378 rue Notre Dame ouest
Et vente de peintures
tous les bénéfices au profit des classes
de « Parkinson en mouvement »
(voir d'autres peintures et liste de prix à
'pandorasboxinthegardenofeden.blogspot.com')
The following paintings will be on show:
Tree, 14x18 inches oil on canvas
stretched , $300
Gulls, 12x14 inches acrylic on
paintboard, $340
Retreat, 10x14 inches watercolour on paper,
$140
Saturday, March 16, 2013
Better control for Parkinson's symptoms
Dosing carbidopa/levodopa in later
Parkinson's disease with motor fluctuations.
After the first five years with
Parkinson's disease, motor fluctuations become common. There are no
longer enough dopaminergic neurones remaining to store the dopamine
from the levodopa doses, and you go from an “off” state to a
“dyskinetic” state over and over during the day. You are either
not moving because there is not enough dopamine, or you are moving
all over the place and tipping yourself off balance from too much.
The very short half life of levodopa is at fault.
Dr. Ahllskog in his book The
Parkinson's Disease Treatment Book (2005, Oxford University Press)
explains how to deal with this.
- Find the dose of levodopa that gets you motor improvement but not dyskinesia. (For some this is not possible because the two responses occur at the same dose.)
- Match the interval doses to the duration of the response. Then reduce the interval between the doses so that the effects overlap. Eg, if you expect to go “off” 3 hours after a dose, and it takes 30 minutes to kick in, you need to take the next dose after 2 1/2 hours. You can take as many doses as you need to to maintain the response.
- I found that the first dose of the day had to be a little higher, because the duration of response to that dose was very short. This is likely due to the fact that while sleeping you tolerate a lower level of dopamine, and so it takes a little more to saturate.
I
ended up with a program of
7am 1
1/2 tabs
9:35
am 1 tab
12:10
pm 1 tab
2:45
pm 1 tab
5:20
pm 1 tab
7:55
pm 1 tab
1 tab
at bedtime and when I wake in the night (usually after 3-5 hours).
And
with that I am “on” all the time (well at least for 3 days)! I
need to evaluate how I do when I am at the gym, since I may need an
extra 1/2 to 1 tablet to prevent fluctuations after workouts. It is
a miracle!
I have
to add that at the same time I am adding a dopamine agonist, but I am
still at a dose of that medication too small to be expected to make a
difference.
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