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I've got a gut feeling

So..... What did you have for breakfast today?

I ate a bowl full of some kind of sugar-saturated grain; not the best choice but it was good and temporarily satisfied my need for sweetness, which no doubt will return anon. Throughout the day, I will snack on, and eat, foods that taste good but are probably detrimental to my health, specifically, my PD. Now, it is not as if I just found out that such food is not good for you. It is my intention to make a change, tomorrow or Wednesday at the latest. But eventually I will have to change what I put into my stomach. Why? What is the connection, if any between PD and nutrition?

Well, let's start with what we know about PD. The brains of PWP contain buildups of a protein called alpha synuclein ("AS"). These buildups lead to AS plaques and they have an adverse effect on the manufacture of dopamine. They seem to be abundant in the substantia nigra where dopamine-producing neurons reside in abundance. The plaques apparently cause the death of the dopamine-producing neurons. Hence dopamine, which is essential to movement, gets depleted, leading to all the problems PWP experience.

You may ask where does the AS come from. It appears it is developed in the gut. The gut is chock-a-block with microbiota, most of which are friendly and essential to our well-being, but they can also break down nutrients into molecules of short chain fatty acids which seem to have a role in the onset of PD. The molecules travel to the brain and aid in the production of AS and as plaques develop, dopamine decreases, leading to you-know-what.

We can easily conclude there is a connection between the food we eat and PD.

The lesson is: Don't eat food that produces short-chain fatty acids. For me, it means avoiding dairy and eating lots of fruit, nuts, and vegetables. In other words, as Mark Twain remarked "The only way to keep your health is to eat what you don't want, drink what you don't like and do what you'd rather not".

Should be an interesting future, avoiding weapons of mass destruction cleverly disguised as fast food. I will start my new regime later but I ask myself today: What is happening in my gut right now? Can I control the production by gut microbiota of short-chain fatty acid or am I simply a host for bacteria? Will diet cure my PD or at least slow it down?

Who knows? I might be beyond caring and right now I hunger for a Big Mac.

A ghost in a wishing well

Yesterday, I went with my wife, to the Victory Summit, a gathering of the tribe yearning for a greater understanding of parkinson's. The event was sponsored by the Davis Phinney Foundation, Parkinson's Canada and U-Turn Parkinson's. Winnipeg was the only city in Canada to benefit from its presence. Did I learn anything? Sort of. The three topics that had me wide awake were: Non-Motor Symptoms, Exercise, and Cognitive Challenges, followed by an emotional and interesting presentation about the effect of parkinson's on the family.

The information that "popped out" in each topic included:

(a) Non-Motor: the loss of the sense of smell. For 99% of the time, I cannot smell anything but every so often I catch a whiff of something. For example, two days ago I smelled the soap I was using. It was a fleeting moment but I got excited. Can I regain that sense? What can I do to help regain it? Was that slight trace of freshness just the beginning of a return to the land of the smelling? No answers at the Summit but, from what I know, probably not, but one can dream.

(b) Exercise: When first diagnosed, I was not on any meds. I found that on my morning walks, I would start out with my right hand doing a merengue but about 20 minutes later, all tremor disappeared until about a quarter of an hour after I got to my destination. My conclusion was that exercise had some effect on PD and so began my regimen of 30 minutes to one hour daily of attempting to slow the advance of PD through the use of the treadmill and stationary bike along with some strength training. I was glad to hear an authority confirm my findings. Exercise and then exercise some more was the message.

c) Cognitive: I was happy to hear that word loss is not unusual. apparently, I am not alone when in the middle of a serious talk, I lose a word and have to find a less intelligent synonym. I am grateful to my listener for their patience while I search for any replacement word. It's odd that the condition does not show itself when I write.

d) Parkinson's and a family. The description of the family's acceptance of PD, mirrored my own situation. I felt their emotion. We are not alone. In fact, there are about 6,500 of us in this province, each with a different, but similar, experience.

Of course, there was much more information in each topic, and you can find the presentations on the Davis Phinney website.

Considering everything, it was all worthwhile. I would go again. It didn't make my existing condition and my future any clearer and perhaps it even made it more frightening.

Who cares! I am only dreaming.

What's the name of the game?

The first year or so, I deluded myself into thinking there was nothing wrong with me, that the occasional tremor in my right hand was just caused by a hard workout. I was brought back to reality by the neuro's determination, "It is early stage Parkinson's." he said blithely and he added. "you can get another opinion, but I am confident in my diagnosis."

OK. Now what?

The single sheet torn from a magazine he gave me did little to instill any fear, so I carried on, oblivious to the changes in my body - for a couple of weeks anyway. In this game, there is only one rule. PD must win. I tried to ignore the tremor that was becoming more pronounced until finally in 2011, I went to another neuro who put me on medication.

The medication worked well for the next 7 years but lately, I have learned the meaning of "wearing on / wearing off". I have experienced it a few times in my 7-year joust with PD, but now it is becoming more pronounced. I can keep track of my medicine intake by the arrival of a slight tremor trying to escape from my medicinal prison. When it announces itself, I know I will be taking my meds in about an hour. Once taken, the drugs kick in after 30 minutes, so I have 2-4 hours in which the tremor is kept at bay. WO/WO is not as bad now, as I know it will become, but I will ignore it and hope that the inhaler currently being developed (look it up, MJF) will be available to help PWP before I kick the can.

I didn't sign up for this but what are you gonna do?

I understand attitude is a choice. I choose life, as near to normal as possible. I choose to ignore that which I cannot control and gather strength to live with what I can control.

Put your hands in the air brothers and sisters and offer praise to the scientists working on a cure.

Here endith this sermon.

Good night.

Someday I'm going go to murder the bugler

I met my nemesis in battle today and on this occasion, I was the last man standing, battered and bruised 'tis true, but nonetheless, I was standing.

Let me take you back a few hours. It is 2AM, that time in the morning after I have completed my 4 - hour sleep. I will get another hour, interrupted, but it is dicey, broken by the need to urinate. Each time I get out of bed is a drama. I can't just swing my legs off the bed and stand up. That would be too easy. I have to do a half roll to my knees on the floor with my head and arms still on the mattress. Rest a minute or two awaiting the time I am able to use the bed as a support while I overcome the lost energy of the night and will my body into a standing position.

Yesterday, I went through the routine, except my arms were so weak, I lost my support and ended up on the floor. I could not get upright. I struggled for about 5 minutes to right myself and might still be there had I not noticed one of my nordic poles lying on the floor. I managed to pull it to me and use it as an instrument to steady myself by climbing it (hand over hand)to a somewhat bent stance, all the while comparing my situation to that of the old lady in the commercial who falls and mutters something---- I forget exactly what, and I forget what she was promoting; "beef" I think, and somehow the phrase, "and I can't get up" gets worked into the ad. It was amusing at first but soon got old.

That is the only time I have experienced helplessness. Today, I feel strong. Let's hope there is never a repeat of the incident. All I have to say is "Bite me, PD".

When I wake up each morning, I make a choice. In spite of the PD attempts to depress me, I choose the positive over the negative and I shall continue to make that choice until someone, somewhere. finds the cure.

To paraphrase Wayne Gretzky, "90% of how you conquer life's absurdities is mental, while the remaining half is physical."

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MARCH 5 to 11

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My computer beat me in chess but it was no match for a jab/cross combination

Community: (n) A community is a group of people who can teach us something new, make us laugh even when we are having a bad day and who are there for us when we need a little encouragement.



1. When I was first diagnosed I felt....not much really.  There was no drama.  It was as if the neuro had said to me, "I hate to have to tell you but you have an ingrown toenail."  I knew nothing about PD except that Michael J. Fox, Muhammed Ali and Hitler were PWP and they were doing OK (except for that Hitler guy). Sure my hand tremored from time to time, but hey,  I could handle that.  No problem. But then, I got curious and started researching, only to conclude that having PD was not a good thing.

2. D-day (diagnosis day) + 21.  In my third week, I read that exercise, eating well and social discourse might well slow down the progress of the disease.

3.  Social discourse!!!

4.  I lived in the same house for 40 years and never learned to be social with any of my neighbours.   Social discourse indeed!!!  As soon as it has been reliably ascertained that pigs can fly, then, and only then, will I try to improve my social graces.

5.  You should join a Parkinson's group, somebody offered.  Hmmmm, that's an idea.  But wait!  I just didn't think I needed one and so I quit looking.  I convinced myself I could handle this newest threat to my cushy life on my own.

6.  Then I got a pamphlet for "Rock Steady Boxing" and my curiosity was piqued.  Boxing for PWP. A solitary sport with people who could commiserate with me. Exercise and social discourse - almost a singularity!  I liked the sound of that.

7.  To make this epiphany short and sweet, I joined Rock Steady and there I found a community as I have defined it and I hope to stay in that community for a long time. It will make my journey easier. Take the advice of an 8-year veteran.  Find a group, any PWP group and get involved.  It is part of the "healing process".

The greatness of a community is most accurately measured by the compassionate actions of its members - Coretta Scott King