Back in the saddle again

I was getting a bit down. For one thing, a foreboding voice from deep inside occasionally would make me doubt exercise was beneficial when it comes to slowing the progress of PD.

"You have an incurable, degenerative brain disease. You know that you hate exercising to the extent you are doing and anyway, what is the link between the brain and exercising the rest of the body? Probably none. That horse is dead. It is time to dismount. You have no choice in your future.... so stop sweating," the voice would nag at me.

Those moments of doubt, although infrequent, could be rather dark. For two days I listened to it and remained perspiration-free. Then, I went to my neuro appointment where I was told the next step would be sinimet but my current drugs seemed to be working fine so we would hold off on the L-dopa.

"No great change in the past 6 months. No compulsions. You are doing good. Make an appointment for 6 months and keep up the exercising", was his assessment, echoed by the physio, who I also saw that day.

Their remarks got me back on the horse. Today I stretched, used the bosu ball, lifted weights and rode the exercise bike. An hour later - no tremor! I am back to believing exercise does something for PD, maybe even slow its progress. In whatever way it helps, I still hate exercising, but I will keep on keeping on, day in and day out. That's my OCD voice speaking. Usually annoying, OCD helps me stick to my workouts and deliver a blow to my enemy. My obsessiveness suppresses that other, dark voice. Now I have no choice.... I HAVE to exercise and I will.

Enough of the negativity. The truth is, I will survive.

"I can accept failure, everyone fails at something. But I can't accept not trying." - Michael Jordan

It's a most delusional day

It's a most delusional day
Feel my sanity slipping away
I'm seeing things
Like bank robbers with wings
Sometimes they just blow me away
It's a most unusual, oddly confusional
In a strictly illusional way
It's a most delusional day!!!

Yes, they are back! Hallucinations, if you need an identity. Several yesterday and a couple today. The three I remember are (1) a little girl pushing a baby carriage (2) A man in a chef's suit standing beside me, and (3) my wife sitting on the couch across from me. What do these have in common? Nothing, except they weren't really there. They only last a portion of a second and I only sense them out of the corner of my eye. Ergo, they are not real. The only little girl I know is my granddaughter who, at these moments, anywhere from 4AM to 6AM, is fast asleep or just waking up, in her own bed, in her own home. There was no chef in the house; why would there be? And my wife was in bed sleeping.

What causes these apparitions? I put it down to one of four possibilities:

1. It's the drugs but, if they were the cause, why wouldn't I see them all the time?
2. It's the "disease" but - I am only into my fourth year. Much too early for ghosts or ghostly hallucinations.
3. It's Exhaustion - probably. These visions only occur in the very early morning, when I am still tired and concentrating on a crossword, or reading the paper.
4. On the other hand, maybe I am just nuts!

They don't bother me usually but, what if they are ghosts? That might freak me out.

Fortunately, I don't believe in ghosts/apparitions because we never hear reports of a spirit haunting while naked. Check out these pictures. All the ghosts are fully dressed. Show me a picture or a written report of a naked ghost's appearance. Not going to happen. One can only dream.

It's Heeeerrreeee..........The return.

How high's the snowbank Mama?
It's 5 feet high and risin'

We returned from Florida yesterday with tans brown enough to drive a dermatologist crazy. We left 28C weather and arrived home at midnight to -13C and snow. While we were away, our hometown was hit by a major snow storm. To get into our house, we had to drag our suitcases over a wide, 4 foot high snowbank. I was not happy.

Here's the thing. Two days before we left Miami, I could walk 3 miles 2X a day and my tremor disappeared. I felt completely normal. I still had trouble with word finding but I solve that problem by keeping quiet. I was as close to normal as was possible; that is, until the trek started.....

Miami airport was no problem. Security was a bit of a pain, but then it always is. Don't the authorities know that we wear belts for only one reason - to keep our pants up. But no, you must remove your belt (and your shoes which is another complaint for future discussion). You clear the metal detector, then wait for your computer, your shoulder bag, your shoes and coat to exit the x-ray machine and you are told to hurry because there is a long line of people waiting. So there you are, one hand holding up your trousers, while the other tries to cope with retrieving your stuff. Next you must put on your belt and shoes. In a crowded airport, try to find a chair to sit on to put your stuff together again. However, that is not unique to Miami but it was enough that I felt the tremor starting to reappear. I was stressed people, Stressed. PD does not get along with stress. The tremor settled down once we were on the plane and for the next 3 hours I had no problems.

We landed in Toronto without incident, picked up our baggage and went to customs. We have Nexus cards so we headed to the Nexus machine. It is always a bit stressful trying to get your eyes in the right place so the machine can identify you. I was successful after 4 tries and received my chit showing I could be trusted; however, my wife tried several times until the machine said she was not in the system. What to do? What to do? We were told to go to special services but there were 9 or 10 wheel chair travelers waiting in line. The solution, go the regular route as there were only a few people ahead of us. With the help of one of customs aides, we found the appropriate machine in which to place our Declaration but we put it in upside down. The aide came over and offered to help. She noticed that the Declaration was for both myself and my wife but I had my Nexus chit. That caused a flurry of chatter. Something was wrong.

"Well" she said, "Put the Declaration in the reader slot anyway."

Next stop, the officer who decides whether you go to the left (you are cleared to leave) or the right (something suspicious here).She listened to our story as to why I had a Nexus chit and my wife did not. At the conclusion of our tale, she directed us off to the right. More customs people. People with the power to search, arrest, detain or fine. I had no reason to worry, we never cheat, however...... I felt the tremor returning.

Border security officers are very powerful and you must be polite and not confrontational. We both showed our best sides as we repeated our story. He took our Nexus cards and ran them through the computer. He was in no rush and gave us a gentle, but serious lecture about our mistake. We didn't bother to place the blame on the system or the aide that had "helped" us, but in the meantime, my hand started to jump around. "My God!" I thought, "He will think my hand is active because I am nervous and nervousness equals guilt." I solved that issue by putting my hand in my pocket where it continued its two-step, but less conspicuously. After some muttering about how the aide should not have told us to put the Declaration through when one of us had a Nexus chit, he declared that all was OK, and emphasized we should never do that again because now the system showed me entering Canada twice on the same day and he couldn't do anything about that. We thanked him and went on our way but we had wasted 20 minutes. Nexus is not really as great as it is advertised to be!!

By the time we sat down to eat (we had a 4 hour wait), both my hands had a tremor. Stage 2, I feared, Stage 2. But no, the rest of the trip was uneventful and only the remnants of a tremor in my right hand remained the next day. Today,3 days later, no tremor has reappeared in my left hand, but my right hand is now almost as active as it was pre-Miami. Sad, but predictable. When this snow melts, I am going to walk my ass off. Walking comes natural to me. I learned to do it as an infant and have gotten along very well ever since. Now it is second nature to me. I just stand and then I walk - no refresher course required.

So come on Spring. Get on with melting this snow. What's that? 5cm expected later today. Damn. I have come to hate snow. Waking up to a beautiful snowscape, in my opinion, is like winning a quarter in the Mega Million lottery.

Too much stress! Too much stress.

Charge of the lite brigade

An annual event down here is "Winter Party". It is a gathering of gay men and lesbians (far more men than women). It is quite a party and it goes on for two days. The purpose of the gathering is not only to have a good time but also to assert and promote gay rights such as the right to marry. I believe in their rights and I believe in gay marriage so long, as someone said, it doesn't become compulsory!!!! I don't think I could ever switch sides.

My exercise regime did not change yesterday and the tremor did not return. However, I do have a problem and here it is.

My daughter sent us this a couple of days ago. This is what I will be returning to. How will I ever get in 6 miles a day through this morass? The answer is, "I won't". I will just have to find an alternate method to keep my tremor at bay.

Speaking of exercise and PD, here is a part of an article by dopadoc.

Tremor:

Tremor is fundamentally different from other Parkinson’s motor/movement symptoms for several reasons:

1. It occurs in a very high proportion of patients while the others are more variable.
2. It does not advance with the other motor problems as the disease progresses.
3. It comes and goes on its own independently and not along with the “on/off” characteristics of the other motor symptoms like slowness and rigidity.
4. It occurs at rest while the other symptoms are related to movement.

Exercise and Stress:

Exercise seems to help all symptoms across the board. I can personally attest to the fact that if I skip exercise for more than 2 days my tremor gets notably worse.

Others mention relaxation meditation as helping though I found no studies to support it. With me the tremor usually gets worse with stress so I would imagine that any technique involving practiced stress reduction and relaxation might improve things.

Read the whole article here

And that is just what I propose to do, exercise and relax, but first I am going to have to shovel snow. Got the exercise covered........

Put De Lime In De Coconut - an essay on death, fashion, exercise and PD

A wildlife guide once told me that more tourists die from being hit on the head by a falling coconut than from violence.I can believe this because (a) the trees are full of coconuts. The city tries to keep tourists safe by removing as many coconuts possible but hey, can you ever defeat nature.? I saw one coconut fall and break into two pieces upon impact. I would not have liked to have been directly beneath. (b)As for violence, this part of south Beach resembles a police convention there are so many cops within the 17 blocks that comprise the old art deco section.

But, enough of death, onto fashion. Take my word for it people, the hot colour this year is "Lime green". I have seen lime green running shoes, lime green bathing suits, lime green sun glass frames, lime green shoe laces, lime green shirts, lime green socks and lime green shorts. I even saw one runner who was dressed in lime green from head to foot. The highlite came in the late afternoon when the main drag, Ocean Drive, is always bumper-to-bumper traffic. In the space of 3 blocks, we saw 3 lime green Mustangs. So be prepared. If South Beach is a trend setter, lime green will be the next big thing.

Any one for lime green parkas up there in Canada?

Of course, I see all this lime green fashions on my daily walks. I stick to the popular beach walk and thereby avoid death from above as there are very few coconut palms along the walk that present an imminent danger. I have two routes, each 3 miles long. I do one in the morning and one in the afternoon. When we first arrived here, I kept my right hand in my pocket to hide or control my right hand tremor but, after 11 days of 2-a-day walks (6 miles in total) my tremor has disappeared completely.

What Happened - Where did my tremor go?

• Theory #1 - I was misdiagnosed - No chance, I was diagnosed by 3 neurologists.
• Theory #2 -I was mysteriously cured - yeh right! Parkinson's has no cure.
• Theory #3 - PD is in remission - maybe, for a short while. I think the dopamine cells are still jumping ship.
• Theory #4 - exercise has had a positive effect. Eureka!

Does Exercise Impact Parkinson's?
By Giselle M. Petzinger, M.D.
This article was originally published in the Fall 2009 issue of PDF's newsletter, News & Review.

We all know that exercise is helpful to good health. We also know it is good for the heart and the muscles. But can it change the brain, and might these changes make an impact on Parkinson’s disease (PD) symptoms?

The answer to both of these questions is yes.

Can the Brain Change?

We know that in PD, neurons — the brain cells that produce the chemical transmitter dopamine — are damaged and lost. We also know that there is a lag between the time when the loss of neurons begins and the time when Parkinson’s motor symptoms start to show. In fact, by the time most people are diagnosed, nearly 80 percent of their dopamine neurons are already gone.

During this lag time, the brain is actually changing, compensating for the loss of dopamine neurons that occurs during the process of neurodegeneration. In fact, the brain reshapes itself throughout life in response to experience. As children learn motor skills, their brain cells are making connections and this process continues through adulthood. Scientists call this ability to change and compensate exercise-dependent neuroplasticity. Exercise may have an effect on the brain by driving this compensation. On a day-to-day basis, people with PD who exercise can move more normally than those who do not. We believe that exercise may be contributing to neuroplasticity — helping the brain to maintain old connections, form new ones and restore lost ones. This may actually outweigh the effects of neurodegeneration.

But what has been proven? There is compelling scientific evidence in animal models of PD that intensive exercise can alter the way the brain works and promote recovery. Research in my lab and those of my colleagues at the University of Southern California (USC), is showing how exercise improves walking and other motor skills in people with PD. It is also shedding light on how exercise influences neuroplasticity at the molecular level.

See the complete article here

A dog is the God of frolic

This town is a culture of cars and dogs. There is not a car in South Beach that has not been lovingly cared for. There doesn't seem to be any older than 3 years; they are highly polished and there is not a spot of the requisite rust on any. Each evening, and every holiday, the main street is a car show as cars pull into the traffic jam and travel the 16 blocks at an elderly snail's pace while most passersby (the audience) try to appear cool and avoid looking, but I see them peeking and wishing and hoping. It's a great show - Admission free!

And then there are the dogs. Probably 50 - 60% of the people own dogs with an amazing number of pit bulls, a much maligned breed, which can be very beautiful and, I am told, gentle. There are occasionally large dogs but most are of the small lap dog types. All are well behaved, groomed and coddled. They are treated like humans, which is OK, except it can lead to laughable situations:

Setting the scene:My wife and I are on our walk and are faced with a woman walking in our direction with 3 little dogs towing her along. They are minding their own business and are anxious for exercise but when they pass by an older dog owning lady, her dog suddenly growls, barks and jumps out at the passing three. The first bad dog we have seen. The perp's owner apologizes to the troika lady while trying to hold her bad dog back. The bad dog continues to struggle and bark.

Knight in Shining Armour arrives: A man, presumably the perp's master, comes jogging up. He is exasperated and in a tizzy. In a soft, but firm voice, he says directly to the dog,"What's the matter with you? (pause) Fighting with every dog that passes." He turns his back to his dog, looks at the dog over his shoulder and he adds dejectedly, "I hardly even know you any more, jumping out at every passing dog."

His wife interjects, "He doesn't jump out at every dog..." To which her husband replies, "Every second dog then."

Denouement: The rest of the family tiff is lost as we are out of hearing range. The husband reaches down and lovingly strokes his dog which lies down on the sidewalk, quietly.All is well.

Lessons learned: It has been said that every dog thinks every man is Napoleon but for the pampered puppies of South Beach, every dog thinks every man is Josephine.

Relevancy to PD:We finished our 3 mile walk and my tremor was only faintly noticeable about 10% of the tine. My affected arm swung naturally and my stride was strong and long. I did have to concentrate on the "heal toe" symphony playing in my head but I say again, exercise, exercise and then exercise some more. I am 3 years into this condition and my symptoms have hardly changed at all.

Maybe take a dog for a walk.