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“If you want to be healthy and live to 100, do Qigong.” – Dr. Mehmet Oz

Starting to feel unbalanced as I near the time for my next dose of medicine. I never thought that could really happen to me - (I tend toward unlimited positivity). My condition is definitely progressing, very slowly. The clarion call is still "Exercise, exercise, exercise!"

For me, I am doing some gigong that I picked up off youtube. I start the day off with 20 minutes or so of qigong followed by 10 minutes of exercises suggested for PD (see https://www.youtube.com/watch?v=uoLIJZbSK1A&t=9s). Next, 15 minutes with light dumbbells . I then do half an hour using a bullworker, bosu ball and 10lb medicine ball. I wrap it all up with 30 minutes on the treadmill (average 3.7 mph). I'm retired. What else am I going to do?

This regime can calm my body without medication but only for an hour or so when I go looking for my pills.

All that exercise and the irony is I can't get the top off the child proof medicine containers!

Is bee venom a sting

I got an email from an good friend from across the pond. He believes in alternative therapies as opposed to recognized, researched based therapies where my allegiance lies. I have a firm skepticism when it comes to"snake oil" medicine. I once went to the banks of a stream that flowed near Lower Fort Garry* and determined where the pioneers would have thrown their garbage (it was their practise to throw their garbage into the river to get rid of it.) I dug into the bank of the stream and found the mother load. In amongst my treasures was a glass bottle with the words "Canadian Pain Destroyer". Apparently, it didn't work because it isn't in use today. It was snake oil medicine.

These days, bee sting therapy is the cure de jour. Is it snake oil too?" I know it is supposed to help sufferers of arthritis (I have't looked, but until I see proper research, I will be skeptical of that claim too). The question is, does bee stink venom slow down or cure PD? There is anecdotal evidence, such as my friend described in his email:

Have you looked in to the bee sting treatment? My friend Jordi has had it and with great results- his PD has receded and stabilised at age 80 and he is still quite active -even a bit of skiing in Pyrenees!! Come on - throw your Big Pharma meds in the bin -they are the real Quacks in this world- go get yourself stung and start a whole new life phase!

Don't you think it sounds too good to be true? Too oily? My response was to the effect that Jordi was probably a victim of the placebo effect, or he had slow moving PD. Normally I would have laughed off this "therapy", but when coming from a close friend, I had to hit google and I found this study in Plos One (a recognized journal) entitled: Bee Venom for the Treatment of Parkinson Disease – A Randomized Controlled Clinical Trial. The researchers concluded

This study did not evidence any clear symptomatic or disease-modifying effects of monthly bee venom injections over an 11 month period compared to placebo using a standard bee venom allergy desensitization protocol in Parkinson disease patients. However, bee venom administration appeared safe in non-allergic subjects. Thus, we suggest that higher administration frequency and possibly higher individual doses of bee venom may reveal its potency in treating Parkinson disease.

So, maybe my friend was giving me good advice; or, maybe he was not.

"What is your opinion?" someone just asked. I remain a skeptic, prove it too me with scientific proof. However, I do appreciate my friend's information but, no such therapy for me..... I am afraid of bees.

“We think we can make honey without sharing in the fate of bees, but we are in truth nothing but poor bees, destined to accomplish our task and then die.”

I thought I would leave you with a happy quote to brighten your day.

* Lower Fort Garry - http://www.mhs.mb.ca/docs/sites/lowerfortgarry.shtml

quote from Muriel Barbery

Guess What?

I don't know what Dr. de Leon is going on about (yesterday's post)! I am having a great day today.

Just when I thought I was out, they pull me back in.

You recognize the line, delivered by Michael Corleone in the Godfather III. Well, it entered my space and felt relevant to me, this day. You see, I noticed two things:

• my legs were unusually stiff, and
• my pills were unable to allow my body to stay balanced for more than 2 hours in a 5 hour cycle

The source of these problems is obvious. Just when I thought I had hit a plateau - BANG - parkinson's reminded me who is boss here. The disease is progressing more rapidly than I thought. I am hoping it was just a bad day, if such is possible.

Turns out it is entirely possible for some symptoms. I just found this on defeatparkinson's.com, written by a neurologist, Dr. M De Leon:

As a neurologist, I have dealt with many chronic progressive neurodegenerative disease patients of various types and stages for a number of years yet, all of them had one thing in common-“good days and bad days.”

He goes on to talk about the stoicism of PWP. They don't annoy him with incessant medical calls since they know nothing can be done. He winds up his paper with the following:

Myth- Parkinson’s Fluctuates

Fact: Parkinson’s DOES NOT have MOTOR fluctuations unless dealing with dyskenesias (this only after long term use of medications), but does NOT have daily motor fluctuations early on in disease.

However, Parkinson’s NON-MOTOR symptoms CAN fluctuate on a daily basis and are affected by weather, other medical illnesses, sleep patterns, medications,constipation, as well as emotional state.

So, turns it out that Parkinson’s patients Do HAVE “good and bad days” too, especially when it concerns non-motor phenomena. However, is not being adequately reported thus not adequately treated! Therefore, we all need to take a more proactive role in discussing issues that might affect our non-motor symptoms as well as the symptoms themselves which often have treatment.

But, if you are experiencing a daily, weekly, or hourly MOTOR fluctuation- this is NOT NORMAL, nor part of the Parkinson’s spectrum. Parkinson’s disease is a chronically progressive neurodegenerative disease affecting the dopamine in the basal ganglia and as disease advances so does the loss of neurochemicals in the brain.

He finishes up with questions you should be asking yourself and these can be found at(google) "defeat parkinson's" and "de Leon".

Another day, another gift from that rebel, PD. I don't want to be rude, but control yourself PD. No more presents, please.

This and that - shadow boxing and tai chi

My wife and I went to a parkinson's seminar yesterday. It was very interesting but unfortunately I was so tired that we had to leave at the afternoon break. Still and all, I learned some new things and I was fascinated to see all the PwP, only a few of whom showed tremor symptoms. Thank the lord for L-dopa. One fellow had both hands shaking! A doctor from the movement disorder clinic gave a talk about the past, present and future of parkinson's drugs. Overall, he was positive and offered hope for the future. I was a little startled when he seemed critical of stem cell research with a reference to its mention in quackwatch.com. You can read the criticism yourself under the heading The Shady Side of Embryonic Stem Cell Therapy It's not all bad, but it would appear there is much more to be studied before we can go shovelling stuff into our brains.

For the first time in my life, I did Tai Chi, only the first 6 moves it's true, but then that is 6 more than I could do yesterday. I can actually see some value in this exercise. The slow, precise movements may well calm the symptoms. We'll see.

In his youth, my father was an armed forces champion boxing and so with this in mind, I signed up for Rock Steady Boxing (no contact). They tell me it is one of the most beneficial exercises for PwP. One researcher's opinion is that boxing affects the dopamine receptors. It may increase the receptors and make them more receptive to the available dopamine. But is boxing the best form of exercise for PwP? This will be my first bout with boxing and I will compare its effect on my symptoms against the other daily exercises with which I torture myself: weight training(small weights) half hour on the treadmill and half hour -> an hour, on the stationary bike. I am adding boxing because of research like this:

But a researcher at the University of Indianapolis's Krannert School of Physical Therapy who studied the Rock Steady program over a two-year period, comparing the health of 45 people in the program to 38 Parkinson's patients doing other exercises, found the boxers seemed to do better."It was so different than anything I'd ever seen before," said Stephanie Combs-Miller, who led the study, which is yet to be published. "They maintained a higher walking speed. They had better endurance, better balance, and I think the most surprising thing to me was they perceived a higher quality of life over that two-year period of time than people that engaged in other kinds of exercise."

Think of it; punching out your frustrations on a canvas bag while improving your balance and endurance. Seems pretty simple to me. Shoot, I've seem Rocky. If Stallone can do it, I can do it. Of course it helps that the target doesn't hit back.

To wrap up this blog entry I share with you the wisdom of that wordsmith, the bard of boxing....

The trouble with being retired is you never get a day off.

This blog writing takes time - about 2 hours for one entry. I am afraid I might run out of topics. If I do, you will just have to put up with reruns. Today's topic touches on PD medicines and treatment, along with some useless information. I am going to try to make this a short one so, here goes.

One thing that really bothers me; in spite of the obvious evidence to the contrary, I can no longer type efficiently. My fingers act without my help and against my will. They hit one key twice or two keys at once. They accidentally cause portions of a completed entry to be erased, etc, etc, etc. It is totally frustrating, but I can live with it.

I am hung up on other things I let get to me too. For example, I now have to use a spoon to eat peas or rice. That can be embarrassing. And one more thing, I have to use a cane for support when getting off the bed or off the toilet.

However, I consider myself lucky because I have the tremor dominant form of PD. My limbs are not stiff and I can use the treadmill and stationary at high speeds for a guy my age. All that is copacetic; but I still have PD; although, on the PD scale, I give myself an 8 (1 being totally dependent).

So, I am doing relatively well, but, what about the ones who are lower on the scale. How can they, and we, all be helped -ie- cured. Well, be patient, science has been looking for cures for several decades and some of their work has actually been beneficial. No cures, but good drugs. We don't know what causes PD, but we all can describe the problem in our brains by rote. I know I am preaching to the choir because every PWP, upon diagnosis, reaches for the keyboard and googles "parkinson's." The net is full of entries for PD and from them we learn that it is caused by a group of cells in the substantia nigra, responsible for the production of dopamine. Dopamine is the neurotransmitter for these cells to signal other nerve cells and it is diminishing quickly. Its major functions are involved with:

• movement
• memory
• attention
• sleep
• mood
• learning

These, and other, less bothersome functions, are impacted negatively. I won't go into detail, but you can see you are probably living with one or more problems caused by the loss of dopamine. For the past 50, or so, years, scientists have been searching for that elusive cure and on the way, they have developed drugs that control the symptoms. These drugs replace the lost dopamine. The "gold star" of these drugs is levadopa, first available in the 1960's. It has now been combined with another drug, carbidopa which reduces the side effects of the use of L-dopa and makes it more efficient. Carbidopa/levadopa first became available in 1975 and it retains its gold star status.

Dopamine agonists, drugs that mimic the processes in the brain in the production of dopamine, have been around since the 1970's and are often prescribed to be taken with L-dopa (I don't know why and I only have sketchy ideas of how Agonists or L-dopa work)..... "Damn it Jim, I'm a blogger, not a doctor"..... I only know a combination of L-dopa and the agonist, mirapex, have kept my symptoms away for 7 years.

There is another treatment that sounds scary but has been met with success by those PwP that have severe symptoms that cannot be controlled by drugs. It is deep brain stimulation. Again, I know nothing about it. I only know MJF refused it because it involved the brain. That sort of put me off DBS. I only have one brain and its complexity and the possibility of damaging that complexity, gives me pause.

This brings me to today's rant - stem cells.

Although the underlying cause of Parkinson's disease is unknown. Researchers are already using stem cells to grow dopamine-producing neutrons to study parkinson's in the study of the disease, especially in those cases where there is a known genetic cause for the condition. Because a single, well-defined type of cell is affected, it may also be possible to treat Parkinson’s by replacing the lost nerve cells with healthy new ones.This type of treatment could be used to: replace neurons damaged by spinal cord injury, stroke, Alzheimer's disease, Parkinson's disease or other neurological problems; produce insulin that could treat people with diabetes and heart muscle cells that could repair damage after a heart attack.*

Sounds good, right? But as usual there are dissenters. The religious right in the USA take the position that killing embryos to harvest their stem cells is just another form of abortion. Any government funding must be stopped. I don't know how they justify their opposition to the destruction of an embryo to rid the world of a disease for which there are no known cures. I guess it must be the same arguments they spout off about abortions, but we won't get into that.

The scientists argue that embryonic stem cells are not alive so why not use them to help we PwP? In the case of excess embryos (created for infertile couples) they are marked for destruction anyway, so why not kill them for the betterment of mankind?

As for me, I side with the scientists. I don't accept that an embryo is a living soul and don't get me going on abortion. I have no energy to try to fight a just fight on behalf of the abortionists. Just get me a cure before I am too old to enjoy it. In the words of Stephen Hawking:

Stem cell research is the key to developing cures for degenerative conditions like Parkinson's and motor neuron disease from which I and many others suffer. The fact that the cells may come from embryos is not an objection, because the embryos are going to die anyway.

This still took quite awhile and I am left dissatisfied. I need chocolate!

*http://www.eurostemcell.org/parkinsons.

The B12 Conspiracy

My daughter went to see a homeopathy "doctor" about a skin problem. She was given a blood test and now awaits the results. I have no faith in homeopathy, and I expect the results will not show a healthy body. I anticipate they will find all sorts of problems; but, don't worry, I also expect the "doctor" will provide her with cures; diluted-cures-in-water potions, based on the organization's "law of similar", the belief that the symptoms of a disease can be cured by very small amounts, dissolved in water, of that which cause similar symptoms in healthy people. I won't get into the whole thing. Just read Homeopathy: The Ultimate Fake by Stephen Barrett, M.D. that can be found at quackwatch.org to understand my concerns. I have told my daughter - don't pay any more money because nothing will be cured; although, she might obtain benefits through the placebo effect.

While preparing to give my daughter a Vitamin B12 shot and having, quite rightly, taken a family history in which it was recorded that I have PD, the practitioner told my daughter that I should take copious amount of B12. Now I have tried various supplements without any positive changes; therefore, I decry their use and that, combined with the reputation of homeopathy, caused me to research "Vitamin B12 and parkinson's". I intended to set before my daughter all the negative research. I was surprised to learn that her "doctor" had given her some good advice to give to me. I found on the website of the National Parkinson Foundation (parkinson.org) the following:

• Vitamin B12 is an important factor in brain and nerve health, especially memory.
• Dietary Vitamin B12 is found in animal protein sources such as meat, eggs, fish and dairy products.
• As people age, they may develop difficulty absorbing B12 from the gut, even if the amount in their food sources is adequate.
• Oral supplements (usually 1000 mcg) may help, although persons with severe B12 absorption problems or deficiencies may require injections.
• Vegetarians may also develop a B12 deficiency.
• Elevation of homocysteine may be related to memory loss in some patients, although this is unproven.
• Increasing B12 and folic acid will often result in a decrease in homocysteine levels, though it is not yet known whether this will improve memory.

From the MJF Foundation I found a 2013 study concerning B12

Vitamin B12 deficiency can cause a number of neurological symptoms, including instability, neuropathy (which may cause numbness and tingling) and cognitive defects. Recent studies in Parkinson's disease (PD) patients with neuropathy have shown that B12 deficiency is common. Also, we have recently observed that B12 levels decline over the course of PD. These observations have led us to hypothesize that concurrent B12 deficiency may contribute to overall decline in some patients.

I have not found the conclusions of that study but I have found statements elsewhere that say there is no conclusive evidence that Vitamin B12 has any effect at all on Parkinson's Disease. So, perhaps I am wrong about homeopathy; after all, many great minds believe or have believed in its efficacy (for example, Mahatma Gandhi, Mark Twain and even Paul McCartney), but it goes against my rational outlook. I believe it to be deceitful. It is perverse in its ability to draw people away from accepted medical procedures to rely on the dubious theory that water has memory. If it sounds ridiculous, it probably is and it flies in the face of my rationalist view of the world.

Having said all that, I will go along with the homeopath's advice to my daughter. I will purchase copious amounts of B12. It will probably turn out like the Co Q 10 fiasco. I spent lots of money on that failure and I will probably do so on B12.

You know, just in case.