A Review of the book BRAIN STORMS by JON PALFREMAN
The plot thickened when autopsies in Sun City showed that many patients diagnosed with Parkinson’s didn’t actually have the disease. Researchers are looking for biomarkers that may eventually allow early diagnosis and treatment of the disease years before the characteristic symptoms develop. They are investigating so-called “placebo responders.” They are studying the M13 virus, a bacteriophage that acts like a magic elixir with near-miraculous results in rodent studies but that is just now entering human studies. The future looks bright.
Thank you for posting, I think I'm going to buy a Kindle edition. The author mentions people going into a long remission and when I joined I was still pretty much into one. Now I'm starting to get really bad. Mary
Hi Hikoi. I have read this book and I have many comments to make on it, but the one question he poses is no mystery to me, "When a patient becomes frozen and unable to take the next step, if you draw a line on the floor they will step over the line and walk on. Patients who can’t walk can run, ride a bike, or ice-skate".
I know that what I say here is laughed at, but it is TRUE! All the movements that give us a problem are movements that we don't have to think about, while we are doing them: Walking, Bringing food to our mouths and Writing are just a few of them. I call them, "Subconscious movements". I know that is not recognized as a different part of the brain to movements made "Consciously", but they are different, whichever part of the brain it is. My feeling, as a patient, is that when concentrate on my walking, it works fine. When I concentrate hard on bringing food to my mouth, I don't drop it. When I concentrate on writing in block letter, I can read the result. I think that when I concentrate on what I am doing I must be by-passing the substantia nigra. Otherwise, why else does it work?
Running, Ice Skating and riding a bicycle are all 'Consciously controlled' and as such do not get controlled by the substantia nigra.
So are you saying that when I practice my Ministry of Silly Walks I move from the substantia nigra non conscious to the conscious thus rewiring the brain?
Hi Hal. Thanks for the laugh! It wouldn't be a bad idea to start a Parkie Walks Ministry. At least then we can laugh at each other without upsetting anybody.
Hi Hikoi. This is another statement made in Jon's book: "Researchers are looking for a way to protect or revive dopamine neurons. One treatment involves infusing a protective protein directly into the brain by catheter using high pressure."
My question is, "Why did they need to infuse the GDNF into the brain when the brain produces GDNF naturally, in the place where it is needed?"
My own reasoning tells me that getting the brain to produce more GDNF naturally does not put any money into anybody's pocket and as such is not a viable answer.
I have been able to reverse many of my symptoms by doing fast 'consciously controlled' walking. If I keep up the walking, I stay free of many of my symptoms. But nobody in the medical world seems interested in this. I wonder why? I am now 82 and have has Pd symptoms since 1963. Because of the walking I no longer take even blood pressure pills, or sleeping pills, or even antidepressant pills. I wonder why?
Yes, it is true that treatments that do not make money, particularly for big Pharma, get ignored. For example, vitamins D, K1 & K2 , plus a couple of minerals, are better for cardiovascular health and bone strength than both statins and bisphosphonates (e.g. Fosamax). See: tinyurl.com/zvgcu79 and tinyurl.com/hya5dwd
Here is a book that details several life saving treatments you are very unlikely to hear about from MDs (none for PD though): Honest Medicine: Effective, Time-Tested, Inexpensive Treatments for Life-Threatening Diseases amazon.com/gp/product/09829...
Hi Tmarsella. If you are unfit, then I suggest that you walk for 10 minutes every second day, concentrating hard on the way your legs and arms work. Then every second week, you add five minutes onto the time. When you reach one hour, you don't go any longer but concentrate on going faster.
Depending on your age and fitness, you should be able to walk anything between 3 miles an hour up to 5 miles an hour, maybe even faster.
Hi Tmarsella. I assume you are being flippant and lighthearted. In the same vein, the word 'hard' was referring to the concentration levels and not to any other part of your anatomy!
I was wondering if that is the case why can I subconsciously walk for an hour and then I can't consciously walk well for a half hour and then need to sit after that or my preference is to spread out on the floor while I recharge?
Hi Hal. Let me understand what it is you are saying here. You are able to walk without having to think about what your legs and arms are doing for an hour, is that right? When you are doing that, are you able to walk normally, without shuffling?
The you say you are not able to walk for half an hour, while concentrating on what your legs and arms are doing? How long are you able to walk, while concentrating on what your legs and arms are doing? Or do you mean that you are unable to walk consciously? If so, then write to me - johnpepper@telkomsa.net and I will tell you how to do it.
If you want to do the conscious walking then it is best to start for as little as 10 minutes and do so every second day for 2 weeks. Then add another 5 minutes onto the time for the next 2 weeks. After that, every second week you add on an additional 5 minutes until you reach 1 hour. Then continue to walk for 1 hour every second day and continually walk faster and faster. In that way, you will become a lot fitter and a great deal healthier, not needing to lay flat on the floor to recover.
It is hard to explain but It is like having an hour glass. When I am at home I am in a neutral environment. Nobody would know I have PD. when I step out the door I have an hour to an hour and a half without slowing down. Put me in a confined place say a grocery store and that sand starts flowing faster. Add people pushing shopping carts were you really start having to pay attention and the sand flows faster. Loud music in the background faster, clueless shoppers on there cell phones just sort of meandering faster throw in lots of shoppers say like Christmas and I will run to a corner of the store, put my back to the wall wait for a lull and then rush out even if I have not got everything.
So I get the " I think you are using Parkinson's as an excuse not to have to spend time with us " comment a lot.
Back to your question I have had physical therapist say that I am in better shape now than when I was first diagnosed in 2010. That is physically but not mentally. The floor thing is more mental than physical, I would compare it to a very traumatic plane flight where you get off and the first thing you want to do is hug the ground.
Hi Hal. Obviously all these things cause you stress and stress has terrible affects on Pd sufferers. I say to people, "Get rid of everything that stresses you", but that is not always so easy to do. When you think about it, you can find ways of overcoming a lot of it, with proper planning.
In the example above with the shopping, if you are the only one there to do it, you have no choice, other than going very early, before the crowds get there.
++Hi Hikoi. This is another comment on the critique of Jon Palfreman's story, Brain Storms: "Patients have discovered a number of practical tricks to bypass the basal ganglia, like shifting their weight sideways to allow them to go forward. A strenuous exercise program is quite effective: it doesn’t slow the progression of the disease, but it slows the progression of the disability."
What happens when patients shift their weight sideways is that they take 'Conscious Control' of their body instead of trying to 'Will' it to work 'subconsciously'.
I'm glad he mentions 'Bypassing the basal ganglia' as I have been saying for 14 years.
I was diagnosed with PD almost exactly one year ago and within a month I read Palfreman's book. It is extremely well written because he is a professional journalist and, irony of ironies, he wrote extensively about PD for years and then later in life came down with it. The book is a history of PD, from it's formal discovery to today, and it is written like a mystery thriller. Every chapter has a cliffhanger ending. X looked like a miracle cure but didn't work and Y didn't work either, but then researchers discovered Z... But in the next chapter we learn that Z didn't work either. And so it goes. The book is most interesting and informative but ultimately disappointing, simply because there is no happy ending. We long for a cure, a measure of prevention, a means to slow progression... and the search goes on.
Hi Woolysock. Are you aware that many people claim to have halted the progression of their Pd by doing one thing or another. Therefore we should try to find what works for us.
I have had Pd symptoms since 1963 and was only diagnosed in 1992. Ten years later I was free of most of the movement symptoms, due to having taken only one type of medication from 1994 to 2002, by which time I no longer needed any medication of any sort, and doing fast walking, 3 times a week for one hour a time. My method costs nothing other than a bit of sweat and effort. How can you beat that?
Others have done other forms of strenuous exercise and have at least halted the progression of their Pd. So, look around and see what you can do about it.
Actually John after reading every thing on whats the best exercise for PD I decided to create my own program. I called it tread mill dancing. I would spend an hour doing 3 point turns, walking, walking backwards, jogging, sprinting, incline, incline backwards. After about 6 months of this workout the single sinemet pill was giving me terrible dystonic dysconitia. So I cut my pills in half. There is something to your theory. It took about 2 years to figure that PD is so much more than a movement disorder.
Jon's book is indeed excellent. I had the pleasure and honor of giving a book talk on stage with Jon at the World Parkinson's Congress in Portland. He reviewed Brainstorms and I reviewed my book, "If I Can Climb Mt. Kilimanjaro, Why Can't I Brush My Teeth? Courage, Tenacity and Love Meet Parkinson's Disease" by Nan Little. You can see reviews for both books on Amazon and they are both available in Kindle. These make great gifts.
Brainstorms is my go-to reference book on PD. Really helpful as a refresher in keeping straight all the various trials and research.
Er, maybe that makes it sound dry. It is not. Brainstorms is a great read, the writing straightforward and dynamic. A number of my friends - who do not have PD - commented along those same lines.
A while back I gave my 83 yr old mother a copy cos it could explain things in a non alarmist fashion and at the same time offer some measured hope from the fact that there is research going on. She devoured it in a few dsys. Now she understands even better the role all my exercise plays in my therapy. (Jon Palfreman covers that extensively). One other result of my mother reading Brainstorms is she asks me when I'm going to be "like Jon" and take part in a trial.
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