Brain Storms: The Race to Unlock the Mysteries of Parkinson’s Disease

BrainStormsSuggested by Anniel • An overview of the discovery and research on Parkinson’s Disease, written for people who have been diagnosed or know someone who has. Palfreman writes about different approaches to curing or alleviating Parkinson, including L-dopa, neural grafting, deep brain stimulation, growth factors, and viral destruction of misfolded proteins.
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29 Responses to Brain Storms: The Race to Unlock the Mysteries of Parkinson’s Disease

  1. Brad Nelson Brad Nelson says:

    Thanks for suggesting this, Annie. In this more free-form “Bookshelf” format, one can give a very good (not just good) book some notice without taking all the time of a long and formal review. I’m guessing this is a good one and one that is certainly close to your heart.

    So by all means, feel free to bloviate on the merits of the book and the topic as you see fit. When adding a book to the Bookshelf I’m trusting to those who nominate one that it is a good, concise, interesting, and readable book. We won’t stick books up here just “for show.” I know The Federalist Papers are all the rage. But who reads them? They’re a pain.

    I have to do the same thing myself. I have to run recommendations through at least a couple filters. A book doesn’t have to be popular. And it can certainly be on esoteric topics. (See: The Sound of a Wild Snail Eating). But it must be of quality.

    Anyway, I just wanted to say all that to remind people once again what this particular Bookshelf section is for.

    • Timothy Lane says:

      I would be concerned that this would be far too technical for someone who’s not a professional biologist (though I have a strong layman’s interest in the field). It’s an interesting topic, certainly, since deterioration of the cerebellum runs in my family (both of my siblings have it, as did my mother and her father) and is a very similar condition (indeed, it was called Parkinson’s when my grandfather had it).

      Incidentally, Glenn Beck did a modernized form of The Federalist. The idea was to take the actual articles and modernize the language to be more accessible to the general public.

      • Brad Nelson Brad Nelson says:

        Watching the onset of dementia with my mother, you gain new respect for just sheer coherency. And you realize that in regards to the brain, you can have hardware errors (Parkinson, etc.) or software errors (various forms of befuddlement including liberalism).

        They say a mind is a terrible thing to waste. It’s also terrible to see it waste away. But they all will eventually. We then are left with the intriguing question of what comes next. When one door closes, does another open? Does a sort of Cosmic (or super-Cosmic) coherence kick in, so to speak? Could there be any coherency at all without a Prime example? That is, of course, the normal Judeo-Christian view. Our moral intelligence, for example, although imperfect, is said to exist only because a Higher form of morality exists. We are budding off the main flower.

        None of these philosophical thoughts offer much succor to someone in the ravages of brain destruction. But all temporal things will disintegrate. It is the nature of things. It certainly brings one to wondering about what does last, about what are the essential elements.

      • Anniel says:

        This book was written to be understandable to the layman. The author explains everything very clearly and covers all sorts of neuro-degenerative diseases and how they relate to PD. I took so long to read it because I wanted to understand it thoroughly and square it with what I see in my husband’s struggle with the disease.

        I am going to reread the book as I go along. I want everyone to know the real heroes, both patients and researchers, written about in the book. And the discoveries that have come about in miraculous ways.

  2. Anniel says:

    Bear and I had come to the point where we thought we were up-to-date on everything about PD. Then I got the sample of this book. Two pages in and I was totally hooked.

    The book begins with the history of Dr. Parkinson and his observations in the early 1700’s about what he termed a new disease he called the “shaking palsy.” He went out on the streets and found six people with apparent palsy, and he examined only two of those souls. He wrote a paper listing symptoms that was so prescient that when it was discovered by a French Researcher over 100 years later it was so startling that the value of Parkinson’s work caused him to name the “new disease” for him.

    Before I post further on this book, I need to say that it took me not just days to read, it took me weeks. I would read this until I could hardly see the words, then it would take me several days to digest the new information I had received. Everything in it was fascinating.

    More later.

    • Brad Nelson Brad Nelson says:

      Annie, I’ve just sent myself the free Kindle sample of this book. It’s been a few months since I’ve gobbled down a non-fiction, although it sounds as if this is a slow read (and I’m a slow reader to begin with). I’ll at least give it a try.

      I was thinking about this sort of stuff just the other day. Consider all the various molecules and such that the brain and body use as transmitters. And then consider why and how one transmitter is “pain” and another is “pleasure.” It likely can’t have anything to do with the shape of the molecule or the atoms involved. So how do you “know” to feel something as pain rather than pleasure?

      This is why the strictly materialist conception of the brain and mind is incomplete. I cannot conceive of how any natural or chance arrangements of atoms could signify this type of sense perception instead of that type. It’s like taking 5 blue marbles and 3 red ones, arranging them in a certain way, and then saying “This is the neurotransmitter for pain.” But why are the 6 yellow marbles and 2 blue ones (when arranged in a certain way) the transmitter for pleasure? Is there something inherent to the marbles? It doesn’t seem so.

      One conception of the physical brain (and not one, so far that I can see, that is blasphemous or illogical) is that our brain acts as a means of filtering *out* what otherwise would be sort of a unitary mind. It is, of course, a common religious notion — quite compatible with Christianity but generally spoken more of in Eastern religions — that as one extinguishes the self, one becomes closer to God. And if that filter paradigm is correct, then that is consistent with it. Our brains act like little soap bubbles that capture and cordon off a little bit of reality so that we have some sense of individualism…but are always connected (if unknowingly) to the Prime Soap Bubble. And our little bubbles will inevitably burst, and we will once again be absorbed into the Prime Soap Bubble, although perhaps other paradigms kick in. Maybe we bring something back that has a permanence to it (which I won’t call soap scum, but surely a good analogy exists).

      So as people lose their minds, does something else also assert itself? Certainly from our perspective, we see befuddlement, a loss of ability, and deterioration. We don’t see a gain. But what if?

      • Anniel says:

        Brad, A few times in the book, Dr. Palfreman delves into the results of placebo effect testing. The last one in the book tells of new tests with PET scanning. In that test the patients who received “real” medicine were told it was real, while those who received saline solution, were told so. They were all advanced PD patients. Nothing happened with the ones given saline, it had no effect. The ones who were given the real stuff squirted out dopamine that should not have been there and felt better.
        How to explain that is the question.

        He, very briefly, goes into Big Pharma, but what he says explains a lot of what goes on.

        The place where big things are happening is Israel. If anyone wants to invest some money there are up-and-coming medical research companies and scientists there worth considering.

  3. Anniel says:

    The author of Brain Storms, Dr. Jon Palfreman, won a Top Ten Science Book of 2015, award for this book. Published by Macmillan, available on Kindle.

    Professor Palfreman, PhD, is the KEZI Distinguished Professor of Broadcast Journalism, University of Oregon. He is an Emmy, DuPont, and Peabody Award-winning journalist, and recipient of the Cohn Award for Excellence in Medical Writing. Professor Palfreman himself suffers from Parkinson’s Disease. This book is the history of the disease and of his own journey.

  4. Anniel says:

    Sorry about my earlier mis-typing, Dr. Parkinson wrote his monograph in 1817. He lived in a London neighborhood where he noticed the people who walked stooped over and their steps were shortened. He also noted their tremors were mostly one sided. He wrote his paper based on his examination of two men.

    Many people through history have probably suffered from PD, some of them very famous.

    Today about seven million people worldwide have some form of PD. Most of them are men, except in Japan, where women outnumber men by far. No one knows why. There are some sixty thousand new cases of PD diagnosed in the US each year. Who knows how many people say, “Grandpa has the shakes.”, and never take him to the doctor, so it could be more.

    As a journalist Dr. Palfreman had written articles about PD, and, of course never thought it would happen to him. He developed a slight tremor but thought it was just Benign Essential Tremor. He says he received his PD diagnoses when he was 60 and could not accept it. He tells the stages he went through before accepting and revealing his condition, so for a year he told no one but his wife.

    New research shows that a protein called alpha synuclein goes rogue, develops into toxic sticky aggregates which latch onto brain cells and kills them as it travels. This is the first time I had heard of this misfolded protein.

    So much in this book is brand new info to Bear and me.

  5. Anniel says:

    Every three years people with PD and researchers on all fronts from all over the world meet to share info on what new is happening about the disease. Dr. Palfreman began his journey when the group met in Montreal in 2013.

    The first part of “Brain Storms,” is concerned with what little is known about James Parkinson (d. 1824) and his studies about the six patients he met in England. It then picks up the story of the French physician Jean-Martin Charcot (1825-1893), the second hero who devoted his life to studying the disease.

    Thomas Hobbes and other very famous men had PD and wrote about the intractable nature of their affliction. One aspect I had never heard about is called micrographism, meaning “small writing”. The famous educational reformer, Wilhelm Von Humbolt (1767-1835), wrote long letters to a friend detailing his disease as he degenerated, including his efforts to keep writing in spite of how his sentences would become smaller and smaller no matter how hard he tried to keep them normal.

    I have since met a few people who do have this symptom, although Bear does not, he says he writes larger because his tremors carry his arms in greater arcs.

    One of the truly bizarre aspects of PD is called “gait freezing,” where the PD sufferer cannot walk forwards, step on stairs, or stand on a stool. Our friend, Peter, for instance freezes and then can only walk backwards. Other PD people can follow a line, or step to the side and then go forward, or cannot move until someone touches them. Yet they can ice skate, dance, ride bicycles or rock climb. Bicycle riding at a fast rate is some people’s “drug of choice” for PD.

    Another motor symptom is taking very short steps on the balls of the feet with the body bent forward. I learned from this book that such walking is called “festinating” and is very common.

    By the 1880’s, Dr. Charco had pretty much described at least all of the motor symptoms of PD, and tried some of his own plant based formulas to see if they helped at all.

    The book details some of the observations that riding on a train or buggy
    seemed to help the palsy, and there are photos of contraptions that were tried to simulate the shaking of a train, etc. Very interesting, but they really didn’t help.

    • Kung Fu Zu Kung Fu Zu says:

      Annie,

      There are a number of different types of ataxias besides that associated with PD. There is, for example, a Fragile X ataxia which can manifest itself in carriers of the mutation who are not otherwise afflicted. Only in later life does this appear and until today, it is not uncommon for such ataxia to be mistaken for PD.

      • Timothy Lane says:

        I would be interested in knowing more about his, which sounds very much like the deterioration of the cerebellum that runs in my family. My sister thought she was safe from it, having reached about 60 without developing it — and then it turned up about a decade ago. I’m older than she was, and still with no sign of it, but who knows?

        • Kung Fu Zu Kung Fu Zu says:

          Here is a short bit on Fragile X ataxia.

          http://ghr.nlm.nih.gov/condition/fragile-x-associated-tremor-ataxia-syndrome

          From what I have seen of this, it looks very much like PD.

          • Anniel says:

            KFZ: I know very little about FragileX Syndrome, but someone else suggested I look into it. Thanks for the link on the ataxia.

            • Kung Fu Zu Kung Fu Zu says:

              Annie,

              Below is a link to the Fraxa Research Foundation’s website. Fraxa is ST’s featured charity.

              http://www.fraxa.org/

              The site gives a good explanation of what Fragile X Syndrome is, as well as what is being done to fine a cure. Fraxa has funded over US$25 million in basic scientific research searching for a cure.

        • Anniel says:

          Timothy, Is there an official name for what your family has? I can check it in the notes to see if the book covers it at all. There are geneticists who have been taking DNA samples of many families around the world in hopes that some may help all in the search for real help for Alzheimer’s, PD and other neurological disorders. A magic bullet would be nice.

          Another site that covers a lot of disorders is:
          neuroscientistnews.com.

          There’s always a lot there on PD and related conditions.

          • Timothy Lane says:

            It’s just referred to as deterioration of the cerebellum. I know of no other name for it. I note that Fragile X ataxia can be confused for Parkinson’s, which was the case with my maternal grandfather half a century ago.

  6. Anniel says:

    Last night as I was going over this book again, I found some things of interest that I had even highlighted but had missed the significance of in Bear’s battle.

    Early researchers beginning around 1915 found that in postmortems PD patients had lost the “black stuff” in the substantia negra (which means “black stuff”) near the base of the brain, and that they were also missing a substance called “dopamine.” These losses were the markers for PD for a long time.

    In the 1950’s a useful medicine for 2 dopamine groups, carba-dopa and leva-dopa, was formulated. It helped with the tremors of PD. Under the name Sinemet it is the sole drug-of-choice that most patients wind up taking. Bear has been on it and I knew it gave him relief but didn’t understand that its use comes at a price. The price is that after a period of use it takes more and more to help AND it causes the tremors to become other diskinesias or distonias, or what we refer to as “ratchetings.”

    Other troubling PD symptoms are lack of facial expression, and lack of blinking, which can cause ulcers of the eyes. Both conditions can be disconserting to other people.

    Voice control is also a terrible problem. Too much or too little saliva causes garbled sounds and pitch. Because it is so hard to speak, the effort makes the patient feel like they’re yelling when they can barely be heard.

    Soon after Bear was diagnosed he began saying I was hard of hearing and I really couldn’t understand what he was saying. He finally went to a wonderful speech therapist named Anne Ver Hoef. If we could clone her I would. He took me with him for his second visit and I’m so glad he did because I began to understand how vital this therapy is. For his “graduation” Anne took Bear to a crowded cafeteria and he had to carry on a clearly articulated and loud (on her decibel meter) conversation. And I was no longer going deaf.

    Dr. Palfreman discusses the pros and cons of Deep-Brain-Stimulation (DBS) and other ongoing treatments and research. I would tell you that DBS is a mixed bag. Some people’s lives are given back to them in marvelous ways, others are just helped, and others are not. And the shelf life of DBS is itself limited.

    I think I’m going to have only a few more postings on some new research before I end this. Keep up the hope.

    • Brad Nelson Brad Nelson says:

      Prayers and best wishes to Bear. Keep us abreast of how it’s going, Annie.

      • Anniel says:

        Thanks Brad. One thing I forgot to mention is that Bear would never sing at church because he couldn’t “carry a tune.” One of the things Ann Ver Hoef has her patients do is sing scales up and then down. One day at church I heard Bear sing and realized that he was “carrying the tune.” He was embarrassed to be caught doing it. I laughed at his reaction to being “caught.” No more excuses for not singing. Now I need to get him back practicing.

        BTW, there is a voice decibel reading app that just costs a few dollars.

  7. Anniel says:

    An interesting observation tonight from Bear has made me think about people confronted by disease, probably of any sort. We had a PD Support Group meeting last Saturday and I was commenting on having some new members and hoping they’d keep attending. The last two who got DBS placements have had really good results. They came to a meeting to show everyone, and now we don’t see them anymore. Bear suggested that they might not like looking at people who are the mirror of their probable future, in spite of the help they have received. He’s probably right.

    • Brad Nelson Brad Nelson says:

      Having watched so many episodes of “True Blood” lately, I couldn’t help thinking that what Bear needs to do is drink some vampire blood. That is a magic tonic (at least in this fictional universe) that cures all ills, including gunshot wounds and worse.

      I don’t think there is a person here who wouldn’t give of their blood (if it was that simple) to help Bear. And from afar, it’s hard to express sympathy and respect without sounding de rigueur. But Bear has been a great supporter of this site as have you. And so I have very selfish reasons for the continued good health of the Bear-ster.

      But all that and 5 cents still won’t buy you a cup of coffee. I hope and pray they find a cure for this disease. Short of that, I think Bear is extremely fortunate to have you by his side.

      • Anniel says:

        Thank you, Brad. There are things happening to make some parts of this illness less distressing. One area is in “Repurposing” of existing medications. Bear and I both feel that consenting adults should have the right to participate in any trial of a med or action that doesn’t harm anyone else. But ObamaCare could put an end to medical progress. Just a side effect you understand.

    • Kung Fu Zu Kung Fu Zu says:

      They came to a meeting to show everyone, and now we don’t see them anymore. Bear suggested that they might not like looking at people who are the mirror of their probable future, in spite of the help they have received. He’s probably right.

      I have to agree with Bear.

      One of the things about support groups is that they amplify the particular malady they are formed around. If people are not careful, they can become “moan” groups as opposed to real support groups i.e. negative instead of positive. And while this is quite understandable, it is a reason many people avoid such groups over the long term.

      I also think the mere act of meeting a large group of people with such problems can be something of a shock and distressing, even if one has the same problem. One doesn’t want to have one’s hurt rubbed in one’s face.

      • Anniel says:

        KFZ, So far our group has been able to be a real help to most participants and has helped to mobilize some exercise and dance classes for anyone who wants to attend. We feel that it’s the one place we can go and laugh at our own follies. Sometimes the pity party could overtake everyone but we have enough jokesters to squelch that aspect. Sometimes we even have parties together.

        Hope we can maintain the positive aspects. Any shock about looks, symptoms or discussions seem short lived.

        One other thing that is nice about the group is the frankness with which the discussions are held. One universal symptom of PD is terrible constipation, so we talk about it and any suggestions people have. Maybe new members are shocked how frank we are. A few months ago I told them how our oldest daughter works at a burn center and what they do there. She says to warm 4 ounces of prune juice and add 1 tablespoon of butter. 45 minutes after drinking it the patients have a bowel movement and it always works. I said I didn’t get the butter and one woman who keeps horses said that if a horse is foundering they force oils into it until the animal goes.

        When a firm called LiftLabs came out with an electronic stabilizing spoon our kids bought Bear one and he showed it around and several folks bought them. They also make suggestions to the company for improvements.

  8. Anniel says:

    Over the sixty years from the formulation of Sinemet, another class of drugs called agonists have been tried on neurodegenerative diseases such as PD with mixed results. Agonists, such as Mirapex, are drugs that mimic the first drug, such as Sinemet, to form a new compound and become, hopefully, better than the first. The agonists to Sinemet help some PD sufferers, but make others ill, and one in ten will have a strange side effect called Impulse Control Disorder (ICD).

    I have met one man with ICD. He had suffered PD for several years when he was put on Mirapex. I think no one told his wife about the ICD side effect, so when he took a tumble and hit his head she thought he had had a stroke and took him to his regular doctor. Brain scans showed no stroke but he had became a compulsive gambler and spender, and a sex addict. He also began compulsively “remodeling” their house, buying lumber, paint and what not, but never doing any work. He had gone through their savings and tapped into their 401K before she realized what he was doing. He even sent thousands to a couple of scams in Africa. She had to have people from their church take turns watching him because she was undergoing cancer treatments. And, yes, women were not safe around him, he just knew they found him to be irresistible.

    On the advice of a friend of ours they came to our PD group. He insisted he did not have PD, although he clearly did, and said his wife was jealous because other women wanted him. He didn’t overspend or gamble either.

    Our group leader told the wife to get him back to his neurologist, which she did the next day. The doc took him off the Mirapex immediately and in about a week he told his wife, that he thought he had been acting in an “oddball manner.”

    Dr. Palfreman decided that he needed to see what was actually in store for him as his diseased progressed. He tells us of the people he meets, both researchers and PD victims, and what he learned when he met with them. He gives a history of Michael J. Fox and others who finally used their own battles to start new research. One man in the UK with PD went to a billionaire, who also had PD, and asked him to fund him as he walked counter-clockwise in a complete circle around England to raise money for help with PD publicity. The billionaire called him a “crazy cracker” but gave him 20,000 Euros to pay for his walk. It took him 365 days and he raised over 325,000 Euros. The day after his return the gentleman ran and completed a 5K race. He continues to raise funds for research.

    The heroes in this story are many, but one of the most interesting to me was a famous ballerina who has used her physical training to work around her PD to keep her dancing skills working for her. Fascinating what she has been able to achieve by using her highly trained senses to help herself and others live more normal lives.

    Dr. Palfreman even made arrangements to watch a woman undergo Deep Brain Stimulation (DBS) placement and tuning, and followed her progress for a couple of years. He tells how the docs are not even sure WHY DBS works on some people but not so well on others.

    One warning to consider is to people who try to hide their disease. If they are still working their boss may think they have been drinking and fire them for alcoholism. Under the Americans With Disabilities act they can avoid a lot of complications if they let their condition be known.

    One area being investigated of particular interest to me is fetal tissue and stem cell implants. Because I am fiercely against abortion and know that fetal cells aren’t all they were cracked up to be, I am constantly astounded at the hope that is still invested in them. Even in Neurodegenerative disorders as described by Dr. Palfreman.

    A few years ago our youngest daughter, Cate, began having even worse headaches than her medical condition should have caused. In cold weather she would become incapacitated by the pain over her right eye. Then she noted that the area above her eye was swollen around the transorbital nerve and thought she had trigeminal neuralgia. The doctor looked her over and showed her that she was not swollen, but had actually LOST the tissue and protective fat surrounding the transorbital nerve and had a dent over her eye. He proposed a surgery where he would remove her own fat and stem cells from the area just below the belly button. It has been discovered that every person, no matter how thin, has a pouch of their own stem cells right there ready for harvesting. No fetal tissue required.

    Cate went in one morning, the doc sedated her, sliced her belly button open, removed some of the fatty tissue, mixed it with a sterile formula, made a slit across the dent up at her hairline, and injected the mixture into her forehead to flow down over the nerve. He got her permission to write up the full procedure for a medical journal, let her recover and sent her on her way. He checks up on her fairly regularly and in the winter she wears a ski band or hat to help protect the area, but the worst is over.

    I hope to do only one more posting to bring you up-to-date on Dr. Palfreman’s research.

  9. Anniel says:

    The last portion of Dr. Palfreman’s book is mostly new information that has to be studied in totality if one is interested in what is being done on many neurodegenerative disorders besides PD.

    Several types of inherited PD family groups have been found. The first group was in Italy, with many of their descendants having emigrated to the US. Another family group has been discovered in Brazil and genetic testing has revealed the code for some forms of the disease.

    Other discoveries show that PD is not strictly a movement disorder. The Smorgasbord that is PD means that the symptoms vary from person to person. PD had to be reinvented to include new signs and symptoms. Are some people born with the disease, or a proclivity for it? I know many PD patients who do believe that, including Bear.

    When Robin Williams died it was thought he had PD, but he actually had Lewy Body Dementia. Recent articles indicated that everyone has Lewy Bodies, which are misfolded protein clumps. However new studies at a Neurodegenerative study center in Sun City, Arizona, show by autopsy that Lewy Bodies are THE sure sign that a person actually has PD. No Lewy Bodies, no PD. That leaves lots of other neurodegenerative diseases out there.

    Misfolded Proteins are another new area of study. And a possibility of using alpha-sinuclien to break them up is on the drawing board, if a way to get it to the right part of the brain can be worked out.

    By the time of a PD diagnosis, the person will have had PD for a minimum of 5 years, probably closer to 8 years. Subtle changes have been overlooked or misdiagnosed, perhaps even laughed at by doctors, for years. By the time of diagnosis, the damage is done.

    In 2004, at Tel Aviv University, a leading researcher in Alzheimer’s Disease, Beka Solomon, discovered a special micro-organism from a group called phages. Among the many kinds of viruses, there are some, those phages, that enter and reproduce their genes in bacteria. She found one phage, M-13, whose only job is to enter and reproduce in only one ubiquitous bacteria, e-coli.

    Solomon wanted to see if a human made antibodies could be combined with a phage and delivered through an animal’s (human’s) nasal passages, pass the blood-brain barrier, and dissolve amyloid-beta plaques in the brain. Her work with mice showed that treated Phage M-13 indeed did cause mice bred to develop Alzheimer’s to improve and the plaques to be destroyed.

    One trick is figuring out how to get medications delivered where they need to go. It matters what part of the intestinal tract a substance goes to, because the body turns out to be an exquisitely tuned machine. PD may start in the nose bulb, the intestines or in the brain, or progress in that order. The nose bulb may be why PD patients lose their sense of smell, the intestinal part may be why all sufferers have severe constipation, and then finally comes the destruction of our wonderful brains.

    There are still so many unanswered questions about ALL neurodegenerative diseases, but the curtains are slowly but certainly being drawn back on all of them. What works on one may unlock secrets for all.

    Dr. Palfreman is a great and clear writer. If you want a really good read, if you want to think, if you know someone who has any neurodegenerative disease, this is the book for you.

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