My future is a shadow, lurking by my bedside, and sometimes, at night, I think I can see it and it is not pretty. It is at those times that I suffer a moment of doubt with a side serving of fear. Then I remember, I should really get the facts first, and then panic.
Fact: PD progresses at different rates for different people - think positively - slow progression
Fact: Although it can't be cured, PD is a treatable disease
Fact: I have the tremor dominant form of PD and the prognosis for this form is more favourable than the other form (PIGD form)
Fact: Late onset PD victims are less likely to develop dyskinesias from the use of l-dopa.
Fact: I am 65 and don't have to live with PD that long. Look at Michael J. After 20 years, he still functions relatively well.
Fact: I have a caring and supportive wife which makes living with PD that much easier.
Still, I do have my moments; but, I always convince myself that fear resides only in my brain and I still control the majority of that organ. All I need to do is banish fear from my mind.
Someone (I don't know who) once said, "There are very few monsters who warrant the fear we have of them."
I have banished my fear ..... until the next time.
counter
Wednesday 31 August 2011
Tuesday 30 August 2011
Karate Duck
People have told me they are worried about getting parkinson's. Don't be. In Canada, your chances of being a victim of this disease are less than 0.3%, slightly better than your chances of being kicked to death by a duck.
However, your chances of being a victim of PD increase if:
1. you have red hair
2. you are male
3. you are >60
4. you are Amish (in which case, you are probably not reading this)
5. you have a close relative with PD
6. you have suffered a head trauma at some point(s) in your life
7. you are caucasian
8. you are a junkie
There are many other weird and wild statistics, but still, I wouldn't worry about PD - unless your hand is doing a 2-step. Then, go see a doctor.
By the way, if you are a black haired, drinker and smoker, your chances of being a victim are reduced; but, then you have to worry about these little beauties: cirrhosis, emphysema and lung cancer.
Take the advice of Alfred E. Neuman..."What, me worry?"
However, your chances of being a victim of PD increase if:
1. you have red hair
2. you are male
3. you are >60
4. you are Amish (in which case, you are probably not reading this)
5. you have a close relative with PD
6. you have suffered a head trauma at some point(s) in your life
7. you are caucasian
8. you are a junkie
There are many other weird and wild statistics, but still, I wouldn't worry about PD - unless your hand is doing a 2-step. Then, go see a doctor.
By the way, if you are a black haired, drinker and smoker, your chances of being a victim are reduced; but, then you have to worry about these little beauties: cirrhosis, emphysema and lung cancer.
Take the advice of Alfred E. Neuman..."What, me worry?"
Monday 29 August 2011
Michael & Me
Michael J. Fox stated in one of this books that his parkinson's diagnosis was the best thing that ever happened to him.
Michael, Michael, Michael! You crazy canuck you! Can that be true? I don't think you would have a lot of believers in the parky community.
Let's see.....
Stiff neck - check
slow movement - check
hand tremor - check
vibrating arm - check
malevolent leg cramps - check
dystonia - check
constipation - check
Nope, I just can't agree with you on that one. You may be my hero, but I think you are a little nuts when it comes to good things happening. For me, my diagnosis ranks right up there with the worse things that have happened to me. For me, it is like I was playing a great game of basketball when the referee called out "strike one". A touch confusing, ne c'est pas?
However, I have led a charmed existence to now (touch wood) and so a little thing like parkinson's won't get me down - but the best thing to have happened! Don't think so Mike.
Michael, Michael, Michael! You crazy canuck you! Can that be true? I don't think you would have a lot of believers in the parky community.
Let's see.....
Stiff neck - check
slow movement - check
hand tremor - check
vibrating arm - check
malevolent leg cramps - check
dystonia - check
constipation - check
Nope, I just can't agree with you on that one. You may be my hero, but I think you are a little nuts when it comes to good things happening. For me, my diagnosis ranks right up there with the worse things that have happened to me. For me, it is like I was playing a great game of basketball when the referee called out "strike one". A touch confusing, ne c'est pas?
However, I have led a charmed existence to now (touch wood) and so a little thing like parkinson's won't get me down - but the best thing to have happened! Don't think so Mike.
Sunday 28 August 2011
Res Ipsa Loquitur
In March, 1998, the area around both of my ankles and shins began to hurt and burn. My ankles and heels could not touch anything without experiencing pain. I began to sleep with my feet hanging off my bed.
The shin pain interfered with my running so I went to a sports clinic. The doctor was young and "specialized in shin problems". Unfortunately he was also one of those rare doctors who goes to school, learns a few tricks, and expects minor deification.
"Shin splints," he announced.
"I don't think so," I responded, "I have had shin splints many times and this pain is different."
"It's shin splints," he replied, his mind moving on to something else.
"Shin splints in both legs at the same time?"
"It happens." I was dismissed.
The pain was relentless and I couldn't sleep, so I decided to see the most popular doctor at the same clinic to get a diagnosis and zopiclone to help me sleep.
"Shin splints and I don't prescribe sleeping pills. I would rather deal with the cause of inability to sleep rather than giving you pills." He picked up some papers and headed for the door. "Make an appointment to see me."
I decided to try him out but his nurse said he had nothing open for 3 months. So, on to another one, at the same clinic, but this time female in hopes of getting a sympathetic hearing. She was quite caring but diagnosed me with plantar fasciitis.
"In both feet, at the same time?"
"It happens. They will heal over time and in the meantime, use these inserts. They should help the pain." She had given me a good physical, and she meant well, she was just stymied and plantar fasciitis was the only thing that came to mind. But, I had had plantar fasciitis in the past, and this was not the same.
Her inserts did not help, and I suffered over the next 12 years. I saw other doctors who took their time with me. They tried physio, cortisone shots, laser therapy (is that not just snake oil therapy?), etc, but nothing helped. Finally, my GP said I would just have to live with it. Not what I wanted to hear, but the man was honest and had given it his best shot. The pain did reduce over time and I learned to adapt.
Then, I was diagnosed with PD and prescribed mirapex. Within a week, the mysterious pain had disappeared. I have read that if a symptom reacts positively to PD medicine, you might want to see a neurologist. Was that pain my first symptom of PD?
Do I blame the doctors? I do not. Parkinson's would not have been high on my list of diseases that might have caused my condition. It probably never occurred to them.
John Lennon once said that God is a concept by which we measure our pain. I think he was right, especially when I think of all the profane phrases, containing references to the almighty, I had whispered through 12 years of suffering, when lying in bed with my feet dangling over the end.
It feels good to be pain free.
Thank you Lord!
The shin pain interfered with my running so I went to a sports clinic. The doctor was young and "specialized in shin problems". Unfortunately he was also one of those rare doctors who goes to school, learns a few tricks, and expects minor deification.
"Shin splints," he announced.
"I don't think so," I responded, "I have had shin splints many times and this pain is different."
"It's shin splints," he replied, his mind moving on to something else.
"Shin splints in both legs at the same time?"
"It happens." I was dismissed.
The pain was relentless and I couldn't sleep, so I decided to see the most popular doctor at the same clinic to get a diagnosis and zopiclone to help me sleep.
"Shin splints and I don't prescribe sleeping pills. I would rather deal with the cause of inability to sleep rather than giving you pills." He picked up some papers and headed for the door. "Make an appointment to see me."
I decided to try him out but his nurse said he had nothing open for 3 months. So, on to another one, at the same clinic, but this time female in hopes of getting a sympathetic hearing. She was quite caring but diagnosed me with plantar fasciitis.
"In both feet, at the same time?"
"It happens. They will heal over time and in the meantime, use these inserts. They should help the pain." She had given me a good physical, and she meant well, she was just stymied and plantar fasciitis was the only thing that came to mind. But, I had had plantar fasciitis in the past, and this was not the same.
Her inserts did not help, and I suffered over the next 12 years. I saw other doctors who took their time with me. They tried physio, cortisone shots, laser therapy (is that not just snake oil therapy?), etc, but nothing helped. Finally, my GP said I would just have to live with it. Not what I wanted to hear, but the man was honest and had given it his best shot. The pain did reduce over time and I learned to adapt.
Then, I was diagnosed with PD and prescribed mirapex. Within a week, the mysterious pain had disappeared. I have read that if a symptom reacts positively to PD medicine, you might want to see a neurologist. Was that pain my first symptom of PD?
Do I blame the doctors? I do not. Parkinson's would not have been high on my list of diseases that might have caused my condition. It probably never occurred to them.
John Lennon once said that God is a concept by which we measure our pain. I think he was right, especially when I think of all the profane phrases, containing references to the almighty, I had whispered through 12 years of suffering, when lying in bed with my feet dangling over the end.
It feels good to be pain free.
Thank you Lord!
Saturday 27 August 2011
I use to write. I used to write letters; I used to sign my name
"How's your handwriting," the first neurologist asks me.
I look at him sitting there, head lowered, looking at me over the top of his glasses. "Fine," I reply. "My cursive is better than my printing."
"Really," he says. (Do I detect doubt) "Usually it is the other way around. Write, it's foggy outside," he adds with a peculiar smile. He hands me a scrap of paper.
I write and hand the paper back. "That's pretty good, but I detect a shortening at the end of the sentence. It's parkinson's."
I see no "shortening". In fact, I don't know what he means, so I choose to file it in the waste basket of my mind. Remember, "parkinson's" was only a name to me then.
Later, I was to find out that micrographia is a symptom of PD. It is small handwriting which becomes smaller as the disease progresses. Mine is still large and legible; however, upon reflection, I remember helping my son study for his exam by making flash cards out of small recipe cards. I was amazed at the difficulty I had writing on those small cards. It is hard to explain. It is like your brain is sending the correct signals, but your hand is just not receiving them in a timely fashion. Writing the word is painstaking. I must be getting old, I told myself. I switched to larger recipe cards. The problem persisted. I can remember thinking, thank God for the computer.
As time passed, I began to notice I had difficulty finishing my signature. It always started off just fine but by the end, it had become cramped and was not its usual readable self. The bank even called me about a cheque because my signature did not look like my signature.
Now, when I think of those days, I realize it was all part of my PD. I used to love to write longhand - poetry mostly - but that little joy has been stolen from me. But, there is always the computer and recently, since I started taking the mucuna pruriens, my signature is returning.
If your handwriting is getting significantly smaller and more difficult, see a good doctor.
I will end with the rest of the verse of the ARCADE FIRE song, because it seems appropriate...
I used to sleep at night
Before the flashing lights settled deep in my brain
I look at him sitting there, head lowered, looking at me over the top of his glasses. "Fine," I reply. "My cursive is better than my printing."
"Really," he says. (Do I detect doubt) "Usually it is the other way around. Write, it's foggy outside," he adds with a peculiar smile. He hands me a scrap of paper.
I write and hand the paper back. "That's pretty good, but I detect a shortening at the end of the sentence. It's parkinson's."
I see no "shortening". In fact, I don't know what he means, so I choose to file it in the waste basket of my mind. Remember, "parkinson's" was only a name to me then.
Later, I was to find out that micrographia is a symptom of PD. It is small handwriting which becomes smaller as the disease progresses. Mine is still large and legible; however, upon reflection, I remember helping my son study for his exam by making flash cards out of small recipe cards. I was amazed at the difficulty I had writing on those small cards. It is hard to explain. It is like your brain is sending the correct signals, but your hand is just not receiving them in a timely fashion. Writing the word is painstaking. I must be getting old, I told myself. I switched to larger recipe cards. The problem persisted. I can remember thinking, thank God for the computer.
As time passed, I began to notice I had difficulty finishing my signature. It always started off just fine but by the end, it had become cramped and was not its usual readable self. The bank even called me about a cheque because my signature did not look like my signature.
Now, when I think of those days, I realize it was all part of my PD. I used to love to write longhand - poetry mostly - but that little joy has been stolen from me. But, there is always the computer and recently, since I started taking the mucuna pruriens, my signature is returning.
If your handwriting is getting significantly smaller and more difficult, see a good doctor.
I will end with the rest of the verse of the ARCADE FIRE song, because it seems appropriate...
Before the flashing lights settled deep in my brain
Friday 26 August 2011
The Brain Wars - we used to be friends
I am at war with my brain. It can be a sneaky bugger. It sent the beast to me this morning just as I was in my twilight zone - not asleep but not awake either. I could feel it creeping up on me - a twitch in my right leg, just one little twitch, but it can be an omen. Then, and this time slowly, a tightening of the muscle down the side of that lower limb. But, it felt OK to my touch. Not so bad. Assume the fetal position, quick! That often works to relax the muscle.
Not this time.
Live from your embedded war correspondent........
The muscle begins to (a) twist, (b) knot, (c) go rigid, (d) all of the above, I am not sure. The only certainty is, I am not going to let it get the foot this time. Sure enough, the foot goes into spasm. The bottom of it is tender to the touch. Alright, you can have that, but it goes no further. I will try to "will" my foot to relax. My brain has other ideas. My foot begins to turn inward and upward and no amount of willing is going to stop that. I am losing the battle with my brain and the pain is becoming excruciating. Time for my only weapon. I get out of bed and stand until the foot relaxes and my leg returns to normal.
While standing there, I realize this is dystonia - involuntary muscle contractions. I wonder why, when conscious, I can't control my brain. Then I conclude, I am my brain and my brain is me. When we are at war, we are fighting ourselves. The rest of my body, that miraculous mixture of systems, whose only job is to get together and look after the brain, is being rewarded for its loyalty with pain by a screwed up brain. This treasonous activity is emanating from a part of the brain that God has either forgotten to make properly or has decided to empty out, slowly but surely.
Too much thinking, my mind goes blank and I go back to bed and turn on the TV to CNN and that Libya thing. Apparently, people are dying there and I am upset over a little dystonia.
Life is a zoo in a jungle (Peter de Vries).
Not this time.
Live from your embedded war correspondent........
The muscle begins to (a) twist, (b) knot, (c) go rigid, (d) all of the above, I am not sure. The only certainty is, I am not going to let it get the foot this time. Sure enough, the foot goes into spasm. The bottom of it is tender to the touch. Alright, you can have that, but it goes no further. I will try to "will" my foot to relax. My brain has other ideas. My foot begins to turn inward and upward and no amount of willing is going to stop that. I am losing the battle with my brain and the pain is becoming excruciating. Time for my only weapon. I get out of bed and stand until the foot relaxes and my leg returns to normal.
While standing there, I realize this is dystonia - involuntary muscle contractions. I wonder why, when conscious, I can't control my brain. Then I conclude, I am my brain and my brain is me. When we are at war, we are fighting ourselves. The rest of my body, that miraculous mixture of systems, whose only job is to get together and look after the brain, is being rewarded for its loyalty with pain by a screwed up brain. This treasonous activity is emanating from a part of the brain that God has either forgotten to make properly or has decided to empty out, slowly but surely.
Too much thinking, my mind goes blank and I go back to bed and turn on the TV to CNN and that Libya thing. Apparently, people are dying there and I am upset over a little dystonia.
Life is a zoo in a jungle (Peter de Vries).
Thursday 25 August 2011
"A wise man ought to realize that health is his most valuable possession."
I think patients with an incurable disease should not only listen carefully to their doctor but should try any other method that might help - if it does not interfere with their doctor's treatment.
I decided to try a supplement for a couple of weeks - just to see what happens. So far, so good. I bought "DopaBean" from Solaray. It is also known as "Mucuna pruriens" and contains 15% L-dopa. I take two a day and the result is a lessening of my tremor. If feels like my hand wants to tremor but it can't and for a few hours, I am good to go. This will suffice until I go on the real L-dopa, probably next month. For now, the reduced tremor is worth the cost of the DopaBean (about $20CD) for 60 pills.
Also, if you need help, mucuna pruriens is said to increase libido in both men and women.
Steve Jobs (and/or his partner) could use some DopaBean. Here is what he had to say about sex, " My girlfriend always laughs during sex – no matter what she’s reading."
I decided to try a supplement for a couple of weeks - just to see what happens. So far, so good. I bought "DopaBean" from Solaray. It is also known as "Mucuna pruriens" and contains 15% L-dopa. I take two a day and the result is a lessening of my tremor. If feels like my hand wants to tremor but it can't and for a few hours, I am good to go. This will suffice until I go on the real L-dopa, probably next month. For now, the reduced tremor is worth the cost of the DopaBean (about $20CD) for 60 pills.
Also, if you need help, mucuna pruriens is said to increase libido in both men and women.
Steve Jobs (and/or his partner) could use some DopaBean. Here is what he had to say about sex, " My girlfriend always laughs during sex – no matter what she’s reading."
Wednesday 24 August 2011
(Soup) and ships and sealing wax.
Yesterday's temperature was 37 (98.6), body temperature!! We are not used to this, especially with geese in the sky and combines on the fields - fall is in the air.
I went up to my sanctum sanctorum, the cottage, to get away for the day but, even with AC gushing forth in the living room, it felt like I was living in a magma chamber in the other rooms. I turned on a fan, but noticed that the moving air actually caused a tremor to start up in my resting (right) arm where no tremor was present at that moment. What's that all about anyway? I discovered I could repair the tremor by COVERING UP!!! I looked at the thermometer in the kitchen. It was 101F. There was no way I was covering up. Chose to return to the city instead.
New things happen all the time. About a year and a half ago, I began to have trouble swallowing. Tests were done (very cool watching on a monitor some "gunk" I had ingested, slowly journey down my digestive tract and coat everything in its way). No problems found. No explanation. I chalked it up to another part of my fibromyalgia. In any event, I lost about 7 pounds as I was reduced to eating soup, bread soaked in soup, and strawberry milkshakes for about 2 weeks. Then it disappeared and hasn't crossed my doorstep since.
Now I read difficulty in swallowing is also a symptom of PD. Hope never to see that one again.
The sideshows keep swallowing up the circus!
I went up to my sanctum sanctorum, the cottage, to get away for the day but, even with AC gushing forth in the living room, it felt like I was living in a magma chamber in the other rooms. I turned on a fan, but noticed that the moving air actually caused a tremor to start up in my resting (right) arm where no tremor was present at that moment. What's that all about anyway? I discovered I could repair the tremor by COVERING UP!!! I looked at the thermometer in the kitchen. It was 101F. There was no way I was covering up. Chose to return to the city instead.
New things happen all the time. About a year and a half ago, I began to have trouble swallowing. Tests were done (very cool watching on a monitor some "gunk" I had ingested, slowly journey down my digestive tract and coat everything in its way). No problems found. No explanation. I chalked it up to another part of my fibromyalgia. In any event, I lost about 7 pounds as I was reduced to eating soup, bread soaked in soup, and strawberry milkshakes for about 2 weeks. Then it disappeared and hasn't crossed my doorstep since.
Now I read difficulty in swallowing is also a symptom of PD. Hope never to see that one again.
The sideshows keep swallowing up the circus!
Tuesday 23 August 2011
If dancing were any easier, it would be called football.
Brother Don: "I know this will sound selfish, but is PD genetic?"
Me: "Possibly, especially when it is late onset. Incidence of this type of PD is low, perhaps as low as 5%. Exposure to pesticides may also play a role. Remember all those times we ran through the DDT when they sprayed for mosquitos? Kind of wish we hadn't done that now."
After telling him our father may have had it and our mother, at 93, shakes so much she can hardly get a glass of water into her mouth.
Brother: "Me too. When I am carrying a cup, especially with a saucer, it sounds like castanets!"
I don't think my brother has to worry about PD. He might want to get checked for essential tremor.
PD tremor is a resting tremor. As I have said, I only shake when my hand is at rest or hanging by my side. The rest of the time, when it is occupied, it is normal.
Essential tremor is the opposite. The hand shakes when it is being used, such as raising a glass or carrying a cup and saucer. It is also a progressive neurological disorder, maybe associated with environmental factors. It can also cause problems in later life. It is treatable with drugs.
If you have to choose between PD and ET, choose the latter. Although, another benefit of PD is I have finally got some rhythm; well, really in just one arm. But, it doesn't matter, I am too tired to dance.
Me: "Possibly, especially when it is late onset. Incidence of this type of PD is low, perhaps as low as 5%. Exposure to pesticides may also play a role. Remember all those times we ran through the DDT when they sprayed for mosquitos? Kind of wish we hadn't done that now."
After telling him our father may have had it and our mother, at 93, shakes so much she can hardly get a glass of water into her mouth.
Brother: "Me too. When I am carrying a cup, especially with a saucer, it sounds like castanets!"
I don't think my brother has to worry about PD. He might want to get checked for essential tremor.
PD tremor is a resting tremor. As I have said, I only shake when my hand is at rest or hanging by my side. The rest of the time, when it is occupied, it is normal.
Essential tremor is the opposite. The hand shakes when it is being used, such as raising a glass or carrying a cup and saucer. It is also a progressive neurological disorder, maybe associated with environmental factors. It can also cause problems in later life. It is treatable with drugs.
If you have to choose between PD and ET, choose the latter. Although, another benefit of PD is I have finally got some rhythm; well, really in just one arm. But, it doesn't matter, I am too tired to dance.
Monday 22 August 2011
I love to sleep. I'd sleep all day if I could. - Miley Cyrus
When I read yesterday's post, I sound somewhat pathetic. It is not as bad as it appears in that post. Most days are almost normal, save for the shakes and inexorable exhaustion.
I have suffered from daily fatigue for some years. Initially, this was thought to be caused by fibromyalgia, a diagnosis which really says, "we have no idea what is causing your problems". Aches, pains and tiredness. Now I believe these were simply symptoms of PD.
The type of fatigue I am talking about is a general malaise, not bad enough to interfere with daily activities, but bad enough to ensure an early bedtime. I will call that PD fatigue.
I continue to suffer from that fatigue but it has been compounded, I think by the mirapex, the drug I take to combat my symptoms.
I suffer the PD fatigue until early to mid afternoon when, like the onset of an expected surprise party, it hits me. Exhaustion suddenly envelops my body. My wife would describe it as a swift journey into unresponsiveness. This exhaustion is mind-numbing and rules out any normal activity. Fortunately, it can be fleeting. I can either nap for about 10-15 minutes or wait a half hour or so until it gives up and leaves me alone. Either way, I feel it let go and I relax back into PD fatigue, a condition I can deal with.
This exhaustion is just one of the side effects of mirapex. Why do I only get the negative side effects? I am missing out on its most interesting effect, hallucinations. I haven't had a drug induced hallucination since the early 70's; although, come to think of it, that one lasted hours and scared the bejeezus out of me, so I never tried again. Still......
The strange thing is, mirapex can also cause insomnia. That is rare for me because I take sleeping pills; however, this post was started at 4:30 in the morning. Couldn't sleep.
I will just have to follow the advice of W.C. Fields who said, "The best cure for insomnia is to get a lot of sleep."
I am going to have to wait until early afternoon for that particular pleasure. In the meantime, why is that elephant across the room staring at me?
This blog is intended to inform, especially newly diagnosed victims. PD is not a death sentence; for me, for now, (I know it will get worse) it is an annoyance. Sufferers who want more information should visit Parkinson's Forum, a site in the United Kingdom. There you will find the "old pros", experienced people with parkinson's who have a wealth of knowledge they are willing to share.
I have suffered from daily fatigue for some years. Initially, this was thought to be caused by fibromyalgia, a diagnosis which really says, "we have no idea what is causing your problems". Aches, pains and tiredness. Now I believe these were simply symptoms of PD.
The type of fatigue I am talking about is a general malaise, not bad enough to interfere with daily activities, but bad enough to ensure an early bedtime. I will call that PD fatigue.
I continue to suffer from that fatigue but it has been compounded, I think by the mirapex, the drug I take to combat my symptoms.
I suffer the PD fatigue until early to mid afternoon when, like the onset of an expected surprise party, it hits me. Exhaustion suddenly envelops my body. My wife would describe it as a swift journey into unresponsiveness. This exhaustion is mind-numbing and rules out any normal activity. Fortunately, it can be fleeting. I can either nap for about 10-15 minutes or wait a half hour or so until it gives up and leaves me alone. Either way, I feel it let go and I relax back into PD fatigue, a condition I can deal with.
This exhaustion is just one of the side effects of mirapex. Why do I only get the negative side effects? I am missing out on its most interesting effect, hallucinations. I haven't had a drug induced hallucination since the early 70's; although, come to think of it, that one lasted hours and scared the bejeezus out of me, so I never tried again. Still......
The strange thing is, mirapex can also cause insomnia. That is rare for me because I take sleeping pills; however, this post was started at 4:30 in the morning. Couldn't sleep.
I will just have to follow the advice of W.C. Fields who said, "The best cure for insomnia is to get a lot of sleep."
I am going to have to wait until early afternoon for that particular pleasure. In the meantime, why is that elephant across the room staring at me?
This blog is intended to inform, especially newly diagnosed victims. PD is not a death sentence; for me, for now, (I know it will get worse) it is an annoyance. Sufferers who want more information should visit Parkinson's Forum, a site in the United Kingdom. There you will find the "old pros", experienced people with parkinson's who have a wealth of knowledge they are willing to share.
Sunday 21 August 2011
The Parky Two-Step
I have good days and bad days. Yesterday was not a good day. PD threw a phalanx of symptoms at me. Not sure what brought it on; maybe a small stressor that 6 months ago, I would have all but ignored. Stress does exacerbate the symptoms. Anyway, mid morning I had difficulty getting my hand under control. My right arm joined in the fun. Then my neck became stiff and sore, followed by left arm aping my neck. Combine all this with cramps in my right leg and foot and you have the whole potpurri of PD at this stage.
What to do?
My wife and daughter and her newborn were at our cottage. My older boy and his family were at their cottage and my younger boy - well, who knew where he was. No shoulders to cry on. I made up my mind at 6pm, I needed a shot of Sharron (wife), so I hopped in my car and headed for Winnipeg Beach. Upon arrival, less than an hour later, I learned my son-in-law had joined the ladies at the cottage. We stayed up late talking, about everything except PD, and gradually I relaxed.
PD is not present when you sleep. All symptoms disappear with the exception of occasional muscle spasms in the leg. That is the reason I usually go to bed rather early. The symptoms do not reappear until about an hour after waking up.
I awoke this morning symptom free for the usual grace period. I am now beginning to experience the exhaustion cycle, but more on that tomorrow. Right now, I need a nap.
Such is the joy of PD. Family is everything in helping to keep it at bay.
What to do?
My wife and daughter and her newborn were at our cottage. My older boy and his family were at their cottage and my younger boy - well, who knew where he was. No shoulders to cry on. I made up my mind at 6pm, I needed a shot of Sharron (wife), so I hopped in my car and headed for Winnipeg Beach. Upon arrival, less than an hour later, I learned my son-in-law had joined the ladies at the cottage. We stayed up late talking, about everything except PD, and gradually I relaxed.
PD is not present when you sleep. All symptoms disappear with the exception of occasional muscle spasms in the leg. That is the reason I usually go to bed rather early. The symptoms do not reappear until about an hour after waking up.
I awoke this morning symptom free for the usual grace period. I am now beginning to experience the exhaustion cycle, but more on that tomorrow. Right now, I need a nap.
Such is the joy of PD. Family is everything in helping to keep it at bay.
Saturday 20 August 2011
We all have a face that we hide away forever
I am sitting on a bench in South Beach. My wife is trying to take a picture of me. "Smile," she says. What are you talking about, I am smiling. "Come on Doug, smile or at least light up a little." Huh? What does she mean? She takes the picture and hands the camera to me. My god! The camera has sucked all the life out of me. I look like the corpse of Otzi, the mummified iceman. My face is long, grey and expressionless. I hand the camera back. "Try again," I say. This time we are successful. I am smiling. Still not the reincarnation of Steve McQueen, but acceptable.
"That is the second time this month I have seen that face," my wife adds, "Totally unengaged." I silently vow, I won't let it happen again.
Then I am diagnosed and I read about Muhammed Ali. I remember seeing him on stage at an awards show. He was there with George Foreman, representing the movie, "When We Were Kings". Foreman was animated, Ali was expressionless. I knew he had PD, but at least he could have smiled. I was later to learn about the parkinsonian mask-like facial expression, which is to say, no expression. Ali, diagnosed in 1979, was a victim of the mask.
And now, I too had been visited by parkinson's trying to put its brand on me. Not going to happen. Since then, I do facial exercises and I have not had a recurrence.
In the words of Groucho, "I never forget a face but in your case, I will make an exception."
From now on, as someone once remarked, I will keep my face to the sunshine and let the shadows fall behind me.
"That is the second time this month I have seen that face," my wife adds, "Totally unengaged." I silently vow, I won't let it happen again.
Then I am diagnosed and I read about Muhammed Ali. I remember seeing him on stage at an awards show. He was there with George Foreman, representing the movie, "When We Were Kings". Foreman was animated, Ali was expressionless. I knew he had PD, but at least he could have smiled. I was later to learn about the parkinsonian mask-like facial expression, which is to say, no expression. Ali, diagnosed in 1979, was a victim of the mask.
And now, I too had been visited by parkinson's trying to put its brand on me. Not going to happen. Since then, I do facial exercises and I have not had a recurrence.
In the words of Groucho, "I never forget a face but in your case, I will make an exception."
From now on, as someone once remarked, I will keep my face to the sunshine and let the shadows fall behind me.
Friday 19 August 2011
Everybody wants to go to heaven; but nobody wants to die.
Let's get one thing straight - parkinson's will not kill me. However, it is a serious disease and I deserve your sympathy - just not too much. I don't like Pollyanna sympathy and thankfully, I have yet to receive any. So let this put you on notice.
Two good reactions:
Before I describe G's reaction, I will let you in on our relationship. I have known G for 30 years. When I taught school, G's room was across the hall. G had a reputation of being a tough-as-nuts disciplinarian with a serious obsessive compulsive streak. However, I enjoyed her and she I. One day, just to mess with her, I drew a life sized portrait of G, wearing a toga. On the toga I wrote, "Honk if you want to seek Miss G in a toga". I put it on the wall outside of her room and at class change, her students went into her room honking like a gaggle of geese. G was stunned and decided her students each had an individual death wish. When she discovered the prank, she retaliated. I was teaching a class when she dashed into my room with an open, transparent umbrella, and a spray bottle full of water. She succeeded in chasing me from my room, a little damp from her attack. Of course my retaliation was called for..... and so it went for the next 7 years until I transferred.
But G and I remained friends, so when I told her of the news of my PD, her response was a genuine, "Aw Doug" and I could hear the caring in her voice before she switched over to humor. But those two words meant a lot to me and proved to me what I had always known. G is not as tough as she thinks she is (or was). Thanks G.
The second reaction I want to tell you about does not involve words. It is in the eyes of the recipient of the news. My older boy married a wonderful woman and together they produced two perfect boys. They live a block from us, so my wife and I walked over to deliver the news. I made sure the boys (4 and 2) were occupied elsewhere, and I told my son and daughter-in-law. The look in my daughter-in-laws eye's was full of empathy and understanding. She didn't need to say anything to me. I had already got the message.
These are just 2 of the reactions I appreciated. There were others, but these stand out.
Now I think I will go and read the Bible and try to find loopholes.
Two good reactions:
Before I describe G's reaction, I will let you in on our relationship. I have known G for 30 years. When I taught school, G's room was across the hall. G had a reputation of being a tough-as-nuts disciplinarian with a serious obsessive compulsive streak. However, I enjoyed her and she I. One day, just to mess with her, I drew a life sized portrait of G, wearing a toga. On the toga I wrote, "Honk if you want to seek Miss G in a toga". I put it on the wall outside of her room and at class change, her students went into her room honking like a gaggle of geese. G was stunned and decided her students each had an individual death wish. When she discovered the prank, she retaliated. I was teaching a class when she dashed into my room with an open, transparent umbrella, and a spray bottle full of water. She succeeded in chasing me from my room, a little damp from her attack. Of course my retaliation was called for..... and so it went for the next 7 years until I transferred.
But G and I remained friends, so when I told her of the news of my PD, her response was a genuine, "Aw Doug" and I could hear the caring in her voice before she switched over to humor. But those two words meant a lot to me and proved to me what I had always known. G is not as tough as she thinks she is (or was). Thanks G.
The second reaction I want to tell you about does not involve words. It is in the eyes of the recipient of the news. My older boy married a wonderful woman and together they produced two perfect boys. They live a block from us, so my wife and I walked over to deliver the news. I made sure the boys (4 and 2) were occupied elsewhere, and I told my son and daughter-in-law. The look in my daughter-in-laws eye's was full of empathy and understanding. She didn't need to say anything to me. I had already got the message.
These are just 2 of the reactions I appreciated. There were others, but these stand out.
Now I think I will go and read the Bible and try to find loopholes.
Thursday 18 August 2011
Wake up and smell the coffee.
My dad, who died with Alzheimer's 5 years ago, used to say, "Wake up and smell the coffee", when rousing me from bed.
Sorry dad, I haven't been able to smell the coffee for some time now. Nope, not coffee, flowers, dirty diapers, or much of anything. I hear the loss of smell is called anosomia and is often an indication of a degenerative brain disease, such as parkinson's. My olfactory sense was never all that good but it started to really diminish about 10 years ago. It is not completely gone. I can still smell ammonia, chlorine, etc. I am not sure I would recognize the perfume they put in natural gas - which could be problematic on some inopportune day.
I began to wonder about myself, in a serious manner, about 2 years ago. My wife kept complaining about a sewer smell in the basement. I thought it was all in her mind. I couldn't smell anything. When my son and daughter came over, they said they could smell "poo" (they are very polite) but I figured their mother had implanted a self fulfilling suggestion in them. It was not until a friend of mine visited and I asked him if he smelled anything. "Raw sewage". Sure enough, a sewer pipe had broken and the sour smell of excrement was pervasive throughout the cellar and was gradually encroaching on the first floor.
I finally had to wake up and smell the roses (I hate coffee). The sewer needed fixing and as for me, I had an impairment. It wasn't enough to send me to a doctor. Who knew that a loss of smell could eventually lead to a vibrating arm?
On the upside, I now eat very spicy food that I couldn't eat when my sense of smell was working.
Sorry dad, I haven't been able to smell the coffee for some time now. Nope, not coffee, flowers, dirty diapers, or much of anything. I hear the loss of smell is called anosomia and is often an indication of a degenerative brain disease, such as parkinson's. My olfactory sense was never all that good but it started to really diminish about 10 years ago. It is not completely gone. I can still smell ammonia, chlorine, etc. I am not sure I would recognize the perfume they put in natural gas - which could be problematic on some inopportune day.
I began to wonder about myself, in a serious manner, about 2 years ago. My wife kept complaining about a sewer smell in the basement. I thought it was all in her mind. I couldn't smell anything. When my son and daughter came over, they said they could smell "poo" (they are very polite) but I figured their mother had implanted a self fulfilling suggestion in them. It was not until a friend of mine visited and I asked him if he smelled anything. "Raw sewage". Sure enough, a sewer pipe had broken and the sour smell of excrement was pervasive throughout the cellar and was gradually encroaching on the first floor.
I finally had to wake up and smell the roses (I hate coffee). The sewer needed fixing and as for me, I had an impairment. It wasn't enough to send me to a doctor. Who knew that a loss of smell could eventually lead to a vibrating arm?
On the upside, I now eat very spicy food that I couldn't eat when my sense of smell was working.
Wednesday 17 August 2011
Must be the Season of the Snitch
One night, just as I was falling asleep, my left leg jerked straight out and jumped about 2 inches off the bed, like some macabre can-can. Just a myoclonic spasm, I thought. I have had them frequently throughout my life - not as rigid and dramatic as this one, but because they were not painful, they were never a concern and certainly, I never thought of them as foreshadowing parkinson's
Turned out I might have been wrong. A myoclonic spasm (or myoclonic jerk) can be a perfectly normal occurance, but, it can also be a sign of a neurological disorder such as parkinson's. Glad I didn't know about it when I was young. There are somethings that are better left in the dark.
The myoclonic spasm is only one omen of coming difficulties. I am learning to recognize others. My right calf muscle will sometimes come alive with what feels like the sparks you get when you pick up a static charge - it is telling me that something I am not going to like is going to happen. These stool pigeon sparks are usually accompanied by the occasional foot jerk. I know this won't be a peaceful night. Sure enough, my right calf begins to harden and ache. Nevertheless, I usually fall asleep, only to be disturbed by a nasty charlie horse at some point. I try various methods of relaxing the muscle without getting out of bed and have found that if I assume a fetal position, the muscle relaxes quicker. Going back to the womb for a little reassurance.
I am learning to live with PD and so far, it is really not so bad. Now, if I can only resolve the exhaustion issue.
Turned out I might have been wrong. A myoclonic spasm (or myoclonic jerk) can be a perfectly normal occurance, but, it can also be a sign of a neurological disorder such as parkinson's. Glad I didn't know about it when I was young. There are somethings that are better left in the dark.
The myoclonic spasm is only one omen of coming difficulties. I am learning to recognize others. My right calf muscle will sometimes come alive with what feels like the sparks you get when you pick up a static charge - it is telling me that something I am not going to like is going to happen. These stool pigeon sparks are usually accompanied by the occasional foot jerk. I know this won't be a peaceful night. Sure enough, my right calf begins to harden and ache. Nevertheless, I usually fall asleep, only to be disturbed by a nasty charlie horse at some point. I try various methods of relaxing the muscle without getting out of bed and have found that if I assume a fetal position, the muscle relaxes quicker. Going back to the womb for a little reassurance.
I am learning to live with PD and so far, it is really not so bad. Now, if I can only resolve the exhaustion issue.
Tuesday 16 August 2011
Oblivious to the rose?
I guess everybody who came of age in the 60's memorized quotes from Kahlil Gibran. I am no different. Here's mine, "The optimist sees the rose and not its thorns. The pessimist sees only the thorns and is oblivious to the rose" (or something like that - you get the idea)
I am by nature, optimistic. I can't ignore the rose. I saw Dr. Oz on TV about a year ago when he said he believed PD would be cured within the next decade. My own doctor said he thought MS would be cured before he retired (10 years). He wasn't sure about PD, but my reading of degenerative diseases puts a cure for PD well ahead of MS, Alzheimer's and ALS. So, it is a matter of "when", not "if".
In the brain, there are non-specific cells called progenitor cells that, with the right stimulation, can be transformed into more specific cells. Some of them are in the substantia nigra, the location of the dopamine producing cells needed by PWP, and scientists hope to convince those progenitor cells to become dopamine producers. They are certain it will be done.
As the Romans liked to say; "certum est quod certum reddi potest" (It is certain, whatever can be rendered certain).
A cure is coming. Will I be too old when it arrives?
Was I just oblivious to the rose!?
I am by nature, optimistic. I can't ignore the rose. I saw Dr. Oz on TV about a year ago when he said he believed PD would be cured within the next decade. My own doctor said he thought MS would be cured before he retired (10 years). He wasn't sure about PD, but my reading of degenerative diseases puts a cure for PD well ahead of MS, Alzheimer's and ALS. So, it is a matter of "when", not "if".
In the brain, there are non-specific cells called progenitor cells that, with the right stimulation, can be transformed into more specific cells. Some of them are in the substantia nigra, the location of the dopamine producing cells needed by PWP, and scientists hope to convince those progenitor cells to become dopamine producers. They are certain it will be done.
As the Romans liked to say; "certum est quod certum reddi potest" (It is certain, whatever can be rendered certain).
A cure is coming. Will I be too old when it arrives?
Was I just oblivious to the rose!?
The Goldilocks Supremacy
PD can be Ok. By that I mean it does not always manifest itself in outrageous tremors or leg cramps; rather, it manifests itself in less ugly versions. Other times, it can be bad, like when it does manifest itself in those behaviours, often sending pain coursing through your body. Finally, PD can be just right - ie - no symptoms. This generally happens first thing in the morning but also during exercise.
Studies have shown that exercise improves the symptoms of PD. Other studies with animals show that exercise may influence the progression of PD. My exercise sessions are intense - always have been. Yesterday for example, I race walked for 2 miles, biked for 2 miles, hit the weight room for bench presses, dips, pull ups, chest flys, and a couple of resistance machines that will increase muscular strength for muscles involved in improving balance. 65 minutes. Usually I run, but I have pulled a groin muscle. I fit in this torture 2 or 3 times per week. On the other days, I walk for an hour. My symptoms completely disappear about 10 - 20 minutes into an exercise session.
Not everyone should try to match this routine for two reasons (1) it is not necessary, any form of regular exercise is valuable for PD victims and (2) I have a touch of OCD when it comes to exercise - face it, I am crazy.
However, my research convinces me that everyone who suffers from PD should exercise.
My favourite exercise is a long walk at my cottage at Lake Winnipeg. I almost stopped doing it when one day, I had a serious fall - several cuts and bruises. I was walking along, enjoying the day, and the next thing I knew, I was tumbling head over heels down the sidewalk. Is this going to be my future? I wondered. I could have cried. I continued my walk, blood and all. I had heard of PWP's (people with parkinson's) falling but I couldn't believe it could happen to me so early in its progression!
Some days later, I retraced my steps to the point of my fall. There was a heave in the sidewalk, high enough to trip anybody not paying attention. I decided, it was not PD that had caused the accident, it was my stupidity in not watching where I was going. The PWP in the UK forum suggested the typical shuffling gait of PD could have contributed and I should make sure I think "heel, toe, heel, toe" when I walk. I do so religiously now.
On July 31, I wrote in the UK forum:
Today I decided to retrace the path I had taken when I had my first fall. This time I used the heel heel mantra. I walked to the shore of Lake Winnipeg, our beautiful inland sea with white sand beaches and warm, shallow water. Some years, in the tall grass, I would be eaten alive by mosquitos the size of seagulls, but today I was swarmed by thousands upon thousands of dragonflies, the mosquito's worst nightmare. Today, I am in a mosquito-free zone. I continued my walk without incident and for an hour, I did not have parkinson's..... and then........my hand started to shake and parkinson's whispered in my ear "I am not going anywhere!". To which I responded, "neither am I" and I clenched my fist to calm the tremor and just to show who is boss around here.
For that hour, everything was just right.
Studies have shown that exercise improves the symptoms of PD. Other studies with animals show that exercise may influence the progression of PD. My exercise sessions are intense - always have been. Yesterday for example, I race walked for 2 miles, biked for 2 miles, hit the weight room for bench presses, dips, pull ups, chest flys, and a couple of resistance machines that will increase muscular strength for muscles involved in improving balance. 65 minutes. Usually I run, but I have pulled a groin muscle. I fit in this torture 2 or 3 times per week. On the other days, I walk for an hour. My symptoms completely disappear about 10 - 20 minutes into an exercise session.
Not everyone should try to match this routine for two reasons (1) it is not necessary, any form of regular exercise is valuable for PD victims and (2) I have a touch of OCD when it comes to exercise - face it, I am crazy.
However, my research convinces me that everyone who suffers from PD should exercise.
My favourite exercise is a long walk at my cottage at Lake Winnipeg. I almost stopped doing it when one day, I had a serious fall - several cuts and bruises. I was walking along, enjoying the day, and the next thing I knew, I was tumbling head over heels down the sidewalk. Is this going to be my future? I wondered. I could have cried. I continued my walk, blood and all. I had heard of PWP's (people with parkinson's) falling but I couldn't believe it could happen to me so early in its progression!
Some days later, I retraced my steps to the point of my fall. There was a heave in the sidewalk, high enough to trip anybody not paying attention. I decided, it was not PD that had caused the accident, it was my stupidity in not watching where I was going. The PWP in the UK forum suggested the typical shuffling gait of PD could have contributed and I should make sure I think "heel, toe, heel, toe" when I walk. I do so religiously now.
On July 31, I wrote in the UK forum:
Today I decided to retrace the path I had taken when I had my first fall. This time I used the heel heel mantra. I walked to the shore of Lake Winnipeg, our beautiful inland sea with white sand beaches and warm, shallow water. Some years, in the tall grass, I would be eaten alive by mosquitos the size of seagulls, but today I was swarmed by thousands upon thousands of dragonflies, the mosquito's worst nightmare. Today, I am in a mosquito-free zone. I continued my walk without incident and for an hour, I did not have parkinson's..... and then........my hand started to shake and parkinson's whispered in my ear "I am not going anywhere!". To which I responded, "neither am I" and I clenched my fist to calm the tremor and just to show who is boss around here.
For that hour, everything was just right.
Monday 15 August 2011
Gonna boogie for the Doctor
Most of you may never have heard of King Biscuit Boy, a Toronto bluesman/rocker from the early 70's. In his iconic tune, Biscuit's Boogie, he sings, "I may get better, but I'll never get well." Kind of reminds me of PD. The drugs may make my life better, but I will always have parkinson's looking over my shoulder and reminding me it will be there with me when I die.
What is that "parkie feeling"? From what I understand, it is different for everyone. My "parky" is a feeling like you have been drinking a little, dancing alot, and have gotten a little light-headed and dizzy. More accurately, for me it starts off when I waken. I feel good, alive and full of energy. That lasts about an hour, then I get a light feeling throughout my body. I can't describe it any other way. I feel like I can float, only in a bad way. A couple of hours later, I start to get tired and around noon, a wave of exhaustion hits me. Think of a time when you were really tired and double that. Curiously, the exhaustion leaves me in the evening. If I didn't take that wonderful little pill, zopoclone, I might be awake most of the night.
With all this going on, I think I picked the right doctor. He has empathy for my condition but can communicate with me with a touch of humor in his professionalism. I expect we will get to know each other very well over the next decade or so. In the words of King Biscuit Boy, "I'll boogie for the doctor, boogie for the nurse. I'll keep on boogying til they put me in a hearse."
By the way, King Biscuit Boy died a few years ago. I think he was 57.
Listen to Biscuit's Boogie
What is that "parkie feeling"? From what I understand, it is different for everyone. My "parky" is a feeling like you have been drinking a little, dancing alot, and have gotten a little light-headed and dizzy. More accurately, for me it starts off when I waken. I feel good, alive and full of energy. That lasts about an hour, then I get a light feeling throughout my body. I can't describe it any other way. I feel like I can float, only in a bad way. A couple of hours later, I start to get tired and around noon, a wave of exhaustion hits me. Think of a time when you were really tired and double that. Curiously, the exhaustion leaves me in the evening. If I didn't take that wonderful little pill, zopoclone, I might be awake most of the night.
With all this going on, I think I picked the right doctor. He has empathy for my condition but can communicate with me with a touch of humor in his professionalism. I expect we will get to know each other very well over the next decade or so. In the words of King Biscuit Boy, "I'll boogie for the doctor, boogie for the nurse. I'll keep on boogying til they put me in a hearse."
By the way, King Biscuit Boy died a few years ago. I think he was 57.
Listen to Biscuit's Boogie
Trust, but verify
After my initial visit to the neurologist, and many hours on google, I had no reason to doubt his diagnosis, despite his rather simple testing method. However, I asked for a referral to another neurologist, one I knew slightly.
This time, my wife accompanied me (she is going to be the care giver and should know everything). This doctor gave me the most thorough physical I have ever had, even using his stethoscope against my eyes (don't know what for; if you do, please enlighten). As expected, he then announced that he agreed with the diagnosis. I asked him to take me on as a patient. He did and we started treatment for the symptoms right away. This is a good choice as he seems to care what happens to me and has informed me that his office has an open door policy as far as I am concerned.
In a way, I was relieved that he concurred. After all, it could have been MS or ALS. A diagnosis of parkinson's I could live with. I know people with both diseases and so, I consider myself lucky. Oddly, I do not know anybody with parkinson's.
I keep googling my symptoms, just to make sure they are PD symptoms but that never changes. Then I google my prognosis. Could be OK, could be awful. Then I google famous people who have had parkinson's because I would have seen them on TV and could measure myself against their advancement. Of course the most famous is Michael J. Fox, a Canadian who makes me proud to be a Canadian. His work on helping science look for a cure is amazing.
Once, when I was in university, I had the opportunity to do a TV interview with another famous Canadian, who later developed PD. At the time he was running for the leadership of the federal liberal party - Pierre Elliot Trudeau. I remember asking him (you Brits will like this) "You are in favour of Canadianizing the constitution, yet you favour retaining the monarchy. How do you reconcile those?" I don't recall his TV answer but afterward, he came up to me and said, "Don't worry, we will get rid of her later." His aide overheard him and quickly dragged him away. Pierre became my instant hero. He never did get rid of the queen and lately I have begun to be happy about that. The recent tour by the young royals is turning me into a monarchist (gasp!!).
By the way, PD may have saved Europe from more years of war during WWII. It is thought by some researchers that Hitler was a victim of parkinson's, which could have slowed down his thought processes and may have caused him to make poor decisions.
PD - some good; some bad.
This time, my wife accompanied me (she is going to be the care giver and should know everything). This doctor gave me the most thorough physical I have ever had, even using his stethoscope against my eyes (don't know what for; if you do, please enlighten). As expected, he then announced that he agreed with the diagnosis. I asked him to take me on as a patient. He did and we started treatment for the symptoms right away. This is a good choice as he seems to care what happens to me and has informed me that his office has an open door policy as far as I am concerned.
In a way, I was relieved that he concurred. After all, it could have been MS or ALS. A diagnosis of parkinson's I could live with. I know people with both diseases and so, I consider myself lucky. Oddly, I do not know anybody with parkinson's.
I keep googling my symptoms, just to make sure they are PD symptoms but that never changes. Then I google my prognosis. Could be OK, could be awful. Then I google famous people who have had parkinson's because I would have seen them on TV and could measure myself against their advancement. Of course the most famous is Michael J. Fox, a Canadian who makes me proud to be a Canadian. His work on helping science look for a cure is amazing.
Once, when I was in university, I had the opportunity to do a TV interview with another famous Canadian, who later developed PD. At the time he was running for the leadership of the federal liberal party - Pierre Elliot Trudeau. I remember asking him (you Brits will like this) "You are in favour of Canadianizing the constitution, yet you favour retaining the monarchy. How do you reconcile those?" I don't recall his TV answer but afterward, he came up to me and said, "Don't worry, we will get rid of her later." His aide overheard him and quickly dragged him away. Pierre became my instant hero. He never did get rid of the queen and lately I have begun to be happy about that. The recent tour by the young royals is turning me into a monarchist (gasp!!).
By the way, PD may have saved Europe from more years of war during WWII. It is thought by some researchers that Hitler was a victim of parkinson's, which could have slowed down his thought processes and may have caused him to make poor decisions.
PD - some good; some bad.
Sunday 14 August 2011
Am I eating it, or is it eating me!
I have been told that I am lucky in two ways (1) if I have to have an incurable degenerative disease, I lucked out with parkinson's, since its symptoms are controllable with l-dopa (2) if I have to have parkinson's, there is some indication that if it starts with a tremor on one side of the body, it is likely to progress more slowly. I am not so sure about the latter. When the tremor first starts, victims apparently have lost up to 80% of their dopamine producing capabilities and have had the disease long before the tremor manifests itself.
Let's talk about that tremor. As I have said, it started with my hand but now, at times, it involves my lower arm as well. When the tremor is at its peak, my lower arm appears not to have any bones, the shaking can be so bad. I look like a prima ballerina on speed, doing a one-armed dance of the dying swan. Fortunately, that is rare.
It sounds like my right hand is shaking all the time. That is not the case. I suffer tremors only when I am not using my hand, like when I am resting and watching TV, or when my arm is hanging by my side, relaxing. When I use my hand, for example to type this catharsis, everything is normal. Even watching TV, I can control the tremor by holding a baseball sized nerf ball and occasionally squeezing it. I showed my wife how it works. I let my hand and arm start a serious vibration and then I tied my shoe. As soon as my right hand held the shoe string, all vibration stopped. Thankfully, most of my day is normal, as far as the tremor goes.
I am not on the l-dopa yet but instead, I am taking mirapex which also helps calm the tremor. I was warned that it can cause compulsive behaviour, examples being, compulsive sex, compulsive shopping, etc, both of which might be viewed by some as positive side effects. Not for me. The compulsive behaviour I got out of it is compulsive eating. I have got to get that under control!
So you can see, all is not that bad - yet - and maybe it will always be not-so-bad. Only time and l-dopa will tell.
More importantly, do we have any fresh bananas in the house? How about chocolate cake? Coke?
Let's talk about that tremor. As I have said, it started with my hand but now, at times, it involves my lower arm as well. When the tremor is at its peak, my lower arm appears not to have any bones, the shaking can be so bad. I look like a prima ballerina on speed, doing a one-armed dance of the dying swan. Fortunately, that is rare.
It sounds like my right hand is shaking all the time. That is not the case. I suffer tremors only when I am not using my hand, like when I am resting and watching TV, or when my arm is hanging by my side, relaxing. When I use my hand, for example to type this catharsis, everything is normal. Even watching TV, I can control the tremor by holding a baseball sized nerf ball and occasionally squeezing it. I showed my wife how it works. I let my hand and arm start a serious vibration and then I tied my shoe. As soon as my right hand held the shoe string, all vibration stopped. Thankfully, most of my day is normal, as far as the tremor goes.
I am not on the l-dopa yet but instead, I am taking mirapex which also helps calm the tremor. I was warned that it can cause compulsive behaviour, examples being, compulsive sex, compulsive shopping, etc, both of which might be viewed by some as positive side effects. Not for me. The compulsive behaviour I got out of it is compulsive eating. I have got to get that under control!
So you can see, all is not that bad - yet - and maybe it will always be not-so-bad. Only time and l-dopa will tell.
More importantly, do we have any fresh bananas in the house? How about chocolate cake? Coke?
Saturday 13 August 2011
Pop up little flower pot, pop up.
The beast struck at 4AM. Suddenly my right leg shot straight out and shrieked with pain. I sat bolt upright, my leg rock hard and my right foot starting to turn inward and upward. It wasn't the first time my brain had struck with such ferocity. I knew what to do. I jumped out of bed, forcing my wayward foot square to the floor and stood there for a couple of minutes as the agony turned to ecstasy. I had won the battle with my brain. Time for a little celebration - tempered by the knowledge that it was a pyrrhric victory, for I can never win the war.
It is strange what thoughts go through your head as you await your relief. It is 1956 and I am a boy in Larkhill, England. I have lived here for a year. I am pretending to be a champion bowler on a cricket team. Time after time I try to imitate the windmill, straight arm delivery of a bowler but my North American muscles betray me. Too much baseball. My brain won't help me. My arm won't remain stiff through the windmill windup and I end up leading with my elbow. I am frustrated but keep on trying. To this day, I have been unsuccessful, but every now and then, when I am alone, I try it with a nerf ball - without success - but that doesn't mean I will quit trying. I just have to convince my brain.
It is strange what thoughts go through your head as you await your relief. It is 1956 and I am a boy in Larkhill, England. I have lived here for a year. I am pretending to be a champion bowler on a cricket team. Time after time I try to imitate the windmill, straight arm delivery of a bowler but my North American muscles betray me. Too much baseball. My brain won't help me. My arm won't remain stiff through the windmill windup and I end up leading with my elbow. I am frustrated but keep on trying. To this day, I have been unsuccessful, but every now and then, when I am alone, I try it with a nerf ball - without success - but that doesn't mean I will quit trying. I just have to convince my brain.
Friday 12 August 2011
I am confident in my diagnosis
It is mid-March, 2011. It is cold enough that I am wearing mitts. The people who I pass cannot tell that inside my right mitt, my hand is doing a tap dance. I am on my way to the neurologist. I cannot "think" my way to a stable hand, only a tight clench will stop it. I sit in the waiting room and am surprised when my hand becomes normal when I grip my pocketbook. The doctor is late and I read 20 pages or so without a problem. He arrives and I can see he is older than me (65). That's good, I decide, lots of experience. He calls me into his office and has me sit on an examination table. I tell him my story and he tells me to put my hands in my lap, palms up, and count back from 100 by 7's. That's easy, I tell myself, 14 numbers and I will land on two. With confidence I begin and the numbers come to me easily and I quickly finish. Throughout, my hand is moving independently. He tells me to get down and indicates a chair. I sit down. "It is early stage Parkinson's," he says. I say nothing. "You can get a second opinion if you want, but I am confident in my diagnosis." Again, I say nothing. "Do you have any questions about the condition?" No.
He gives me a copy of an article torn out of a magazine and I leave. I don't bother reading the article. I have heard of Parkinson's Disease, but he might have told me, "you have a cold" for all the impact his diagnosis has had. Whatever it is, I can learn to live with it, just as I have learned to live with "fibromyalgia". It is only later, after a couple of hours on google, that the diagnosis hits me square in the face. I have an incurable degenerative disease. I can only get worse and there is nothing I can do about it. I read that the symptoms can be controlled (that's good!) but the positive effects of medication can diminish after prolonged use (I don't like the sound of that!). It is different for all patients and can progress slowly in some (that will be me!) Exercise helps (got that covered!). Eat dark chocolate (love the stuff!). Try fava beans (who eats these things! I pass.) Avoid stress (I am a lawyer! Any suggestions!). There are thousands of articles and I devour several dozen but the best site I find is a Parkinson's site in the United Kingdom . The people with Parkinson's there give me hope and that is where I am today. For some reason, I am not upset. I don't think of my future as being bleak, thanks to these people who have lived with the disease for some time. From now on, parkinson's no longer deserves a capital "P".
He gives me a copy of an article torn out of a magazine and I leave. I don't bother reading the article. I have heard of Parkinson's Disease, but he might have told me, "you have a cold" for all the impact his diagnosis has had. Whatever it is, I can learn to live with it, just as I have learned to live with "fibromyalgia". It is only later, after a couple of hours on google, that the diagnosis hits me square in the face. I have an incurable degenerative disease. I can only get worse and there is nothing I can do about it. I read that the symptoms can be controlled (that's good!) but the positive effects of medication can diminish after prolonged use (I don't like the sound of that!). It is different for all patients and can progress slowly in some (that will be me!) Exercise helps (got that covered!). Eat dark chocolate (love the stuff!). Try fava beans (who eats these things! I pass.) Avoid stress (I am a lawyer! Any suggestions!). There are thousands of articles and I devour several dozen but the best site I find is a Parkinson's site in the United Kingdom . The people with Parkinson's there give me hope and that is where I am today. For some reason, I am not upset. I don't think of my future as being bleak, thanks to these people who have lived with the disease for some time. From now on, parkinson's no longer deserves a capital "P".
The trip from hell
I love Miami Beach. Even in February, it is hot (but not humid, much like our Manitoba summers here in Canada). The tropical heat is a welcome break from winter. On the day we left, it was 40 below (F) in Winnipeg and 80F (about 25C) in South Beach. This was our 11th trip and we settled into our usual routine - wife window shopping, me running the beach. This past February, I was feeling full of energy and would often run a couple of miles twice a day. The hill at the new South Pointe Park was a good challenge and made my runs all the more difficult. The only problem was, my right hand seemed to have a life of its own. After a strenuous run, it would start vibrating and then shaking. It only lasted a minute or so and if it didn't stop on its own, I could force it to stop by squeezing my thumb and finger together. I showed my wife and we laughed. I chose to ignore it as much as possible and kept running that hill. Sometimes my hand would dance, other times it did not and the 2 weeks went by too quickly.
We left Miami International at about 2 in the afternoon. We had to be diverted over the gulf coast because a space ship was landing (only in Florida) but the rest of the flight was uneventful. It was clear most of the way, which is not all that great because you can literally see the changing of the seasons beneath the plane. Winter began again over the northern states and we knew what would be waiting for us in Toronto - snow and cold. What we didn't expect was fog. We began our descent. We were flying through a cloud flecked with snow. I noticed on the TV screen that we were 1000ft from the ground when the engines powered up and it felt like we began climbing vertically at several hundred miles per hour. After a few minutes of climbing, our pilot informed us that we had been too close to the plane landing before us and consequently, we would have to fly to Montreal to refuel...?????.... That still makes no sense to me but apparently we were going to Montreal and we did. I began to get annoyed. If we had enough fuel to fly to Montreal, why couldn't we just circle and try the landing again? I noticed a slight tremor in my hand.
We landed in Montreal some time later and after a lengthy stay on the tarmac, we were airborne to Toronto, this time without incident. My hand calmed down. We missed our connection to Winnipeg and were put up in a hotel, but to get to that hotel, we would have to wait outside for the shuttle. Just a few minutes. It wasn't Winnipeg cold but it was cold. I only had on a spring jacket and I began to get chilled, and really, really annoyed, as those few minutes droned on. By the time an hour was up, my hand was out of control - bouncing around like a fish out of water. Now to control it, I had to ball my hand into a fist and squeeze. When that didn't work, I put my hand in my pocket, out of sight from the curious crowd.
We finally got to the hotel and I went to sleep. A normal 2.5 hour trip had taken almost 8 hours. Sleep came quickly and when I awoke my hand was behaving itself but by then, my wife and I decided I should get it looked at.
We left Miami International at about 2 in the afternoon. We had to be diverted over the gulf coast because a space ship was landing (only in Florida) but the rest of the flight was uneventful. It was clear most of the way, which is not all that great because you can literally see the changing of the seasons beneath the plane. Winter began again over the northern states and we knew what would be waiting for us in Toronto - snow and cold. What we didn't expect was fog. We began our descent. We were flying through a cloud flecked with snow. I noticed on the TV screen that we were 1000ft from the ground when the engines powered up and it felt like we began climbing vertically at several hundred miles per hour. After a few minutes of climbing, our pilot informed us that we had been too close to the plane landing before us and consequently, we would have to fly to Montreal to refuel...?????.... That still makes no sense to me but apparently we were going to Montreal and we did. I began to get annoyed. If we had enough fuel to fly to Montreal, why couldn't we just circle and try the landing again? I noticed a slight tremor in my hand.
We landed in Montreal some time later and after a lengthy stay on the tarmac, we were airborne to Toronto, this time without incident. My hand calmed down. We missed our connection to Winnipeg and were put up in a hotel, but to get to that hotel, we would have to wait outside for the shuttle. Just a few minutes. It wasn't Winnipeg cold but it was cold. I only had on a spring jacket and I began to get chilled, and really, really annoyed, as those few minutes droned on. By the time an hour was up, my hand was out of control - bouncing around like a fish out of water. Now to control it, I had to ball my hand into a fist and squeeze. When that didn't work, I put my hand in my pocket, out of sight from the curious crowd.
We finally got to the hotel and I went to sleep. A normal 2.5 hour trip had taken almost 8 hours. Sleep came quickly and when I awoke my hand was behaving itself but by then, my wife and I decided I should get it looked at.
Keeping it Real
For 25 - 30 years I suffered. Odd aches and pains that the doctors could not explain. MUST BE FIBROMYALGIA! Really! Is that even a disease? What about the pain in my head, legs, arms, etc? I TELL YOU IT IS FIBROMYALGIA; take two aspirin and call me in the morning. And, so I suffered. I accepted the diagnosis and went through life adapting. I didn't like it, but what could I do. It turns out neither I nor the doctors could do anything. It wasn't so bad. The aches and pains became background noise and I all but ignored it. That is until Miami Beach!
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