Stürme im Gehirn: Dem Rätsel Parkinson auf der Spur

by Jon Palfreman

A star science journalist with Parkinson's reveals the inner workings of this perplexing disease


Seven million people worldwide suffer from Parkinson's-with sixty thousand new cases diagnosed each year in the U.S. alone-and it remains an enigma, with doctors, researchers, and patients hunting for a cure. In Brain Storms , award-winning journalist Jon Palfreman tells their story, a story that takes on urgency when he is diagnosed with the debilitating illness.
Palfreman chronicles how scientists have labored to crack the mystery of what was once called "the shaking palsy," from the earliest clinical descriptions to the cutting edge of molecular neuroscience. He charts the victories and setbacks of a massive international effort to best the disease, referred to as one of the best windows into the brain itself.
Brain Storms is also a profoundly personal investigation into Palfreman's own struggles and those of others living with Parkinson's. From a professional ballet dancer who "tricks" her body to move freely again, to a "frozen" patient who cannot walk but astounds doctors when he is able to ride a bicycle, Palfreman shines a light on the varied and ingenious ways patients cope with having their bodies steadily taken away from them.
The race is on to discover a means to stop or reverse neurodegenerative conditions like Parkinson's and Alzheimer's. Brain Storms is the long-overdue, riveting detective story of that race, and a passionate, insightful account into the lives of those affected.

Genres: Science, Nonfiction, Medicine, Medical, Health, Neuroscience, Psychology

Hardcover

First published September 15, 2015

Reviews

[Grumpus · Rating 5 out of 5]

If you know someone with Parkinson’s or fear that it may be in your future, this book is for you. The author has Parkinson's and provides a good synopsis of the history, the cause, treatment, likelihood of a cure, his experience as one who has the illness, and the future of this devastating, progressive disease. My father suffers from it and his father had it as well. While environmental factors seem to have a greater influence on the odds of getting the disease than inheritance, I can’t help but be a little nervous.

My grandfather was a janitor at a steel factory and was always cleaning up toxic messes without the proper protection we have today. My dad (his son), was an assistant chemist at the same place when he was in his 20s. Mom said he would always come home with burns in his clothing from the chemicals. Her theory has always been that they both got it from that steel factory. Later I found a statistic that said the city with the highest incidence of Parkinson’s was Pittsburgh (a.k.a. Steel City). So it seems her theory may have some merit.

In the end, this book did give me hope and confidence that new treatments are being developed to maintain a quality of life for those diagnosed today. Regular exercise was stressed as a preventative/delaying factor in the onset of symptoms and ameliorates them once they prevent themselves.

The Michael J. Fox foundation and others are continually researching to better understand the disease and working toward a cure. They are confident that this is a disease that can be beat. Learning of all these efforts has lessened slightly the anxiety I have regarding my own medical future and given me hope that my father’s Parkinson’s is not necessarily my fate.

[Atila Iamarino · Rating 4 out of 5]

Uma ótima explicação sobre o Parkinson. Palfreman tem Parkinson e conta sua trajetória, a descoberta da condição e como se informou sobre ela, ao mesmo tempo que reconta como entendemos e o que entendemos sobre. É um livro bem acessível, discute bem tratamentos controversos ou "não oficiais", falando sobre evidências, testes clínicos e como é complicado desenvolver um tratamento contra a doença.

[Koen Van den Eeckhout · Rating 4 out of 5]

An excellent introduction to the discovery, mechanisms, impact and potential remedies for Parkinson's disease. Perfect balance between scientific explanations, personal experience and interesting anecdotes. Highly recommended!

[Shane Lewis · Rating 5 out of 5]

If you or anyone you know has Parkinson’s you should read this book. Palfreman does an amazing job of explaining the disease and what scientists are doing to find a cure. My mother was diagnosed 20 years ago at a young age and I was able to find hope through the knowledge passed on on this book.

[Greg Giles · Rating 5 out of 5]

Alternating hope and despair, Palfreman gives a no-nonsense view of his life with Parkinson's inter-meshed with the clinical history of PD and the current (2015) advances in treatment and cure.

As a "Parkie" myself, at times I had to put the book down because the emotions were just too strong. That said, it was incredibly informative, helpful, and in the end uplifting.

[Crosby · Rating 2 out of 5]

I read this book to better understand a condition that affected one of my long time friends and colleagues. It is full of information but ultimately it ends with one having the feeling that the "race" in the book's title would be better replaced by the word "marathon". Too many questions still remain to be answered about this and similar type diseases of the brain. The book does a good job of describing advances in our understanding of the disease from many perspectives. Its strongest feature is that because the author is afflicted with Parkinson's, he is able to make personal observations about the topics that he presents. He is also good at writing about science in a manner that is accessible to non-scientists. As a scientist, I enjoyed his discussion of the genetic components of the condition as well as the phage protein based discovery as a possible treatment. Nevertheless, I suspect that many readers will be hoping to find some solid evidence that we are about to find the "cure" for Parkinson's and will be disappointed that this book does not present that. It is, however, a good reminder that research in science is nearly always better described as a marathon rather than a race.

[Cynthia · Rating 4 out of 5]

Always a plus when my curiosity leads to a new book and that new book is so readable. Thank you to the author for tackling Parkinson’s disease and then sharing his investigation and information in a concise manner.

I was informed that PD takes hold decades before a tremor appears. The portion of the brain affected is the substantia nigra. Also did not realize PD is the 6th leading cause of death. There are 5 stages of PD and most patients are not diagnosed until they’ve reached stage 4/5.

[Mary · Rating 4 out of 5]

Well structured and well written. I found it very interesting. Does a good job of explaining the science and the research (past and current) without getting too technical for the lay reader.

[William Nist · Rating 5 out of 5]

A clear and reader friendly explanation of Parkinson's Disease by a individual diagnosed with the disease. Includes a history of the disease, the clinical and etiological nature of the disease, and the milestones in understanding and treating this disease.

I really appreciated the conversational tone of this book, it has been difficult for me to understand what is going in in Neurology generally and with this disease in particular. There is a cautious optimism described as the pathology of the disease is finally understood and treatments to address the causes of the disease are being worked on.

You will learn about Lewy bodies, alpha-synuclein and NPT088. The best news is that a treatment for PD may be the treatment for Alzheimer's and ALS. They are related diseases of protein mis-folding and aggregation.

If you or a family member are touched with this type of Neurological disease, this is a very helpful volume.

[Barbara (Bobby) Title · Rating 4 out of 5]

I am of an age to find every last page in this book interesting. Some technical stuff I didn't understand, but author Palfreman obvious knows that some of his audience will be ordinary folks touched by someone with Parkinsons and he has written his book in a way that we can follow and learn.

It is a hopeful book. Not pie in the sky hopeful but a well-documented, well-sourced story that is exactly what I needed to hear.

[Joanne Kelly · Rating 5 out of 5]

I enjoyed this book. Palfreman does a good job of making complex information understandable and interesting. He also does a good job of combining personal stories with the reams of factual information he gathered. I also appreciated his optimistic tone.

[Tom Fouch · Rating 5 out of 5]

This is the best book I have read on Parkinson's Disease and I have it.

[Chain Reading · Rating 4 out of 5]

The author, who is in the early stages of Parkinson's himself, does a great job of explaining the advances of the last 20 years in this complicated area of research. I have some background in this area, as I work in a somewhat related field and studied some Parkinson's/Alzheimer's research in the 90s, but I am not by any means up to date. With this background, I found the technical explanations included here extremely easy to follow. I also thought that Palfreman did a nice job of showing why some of the promising treatments of the last few years didn't turn out, but how they still established a foundation for other work that might. The book gives a sense of measured hope that seemed right for the circumstances, and is rare in a field where the tendency is to promise miracles. I don't think the book has enough of a narrative drive that I would recommend it to readers who didn't have a reason to want to know about Parkinson's, but it's the best book that I have found if you do want to know about the topic.

[Ann · Rating 5 out of 5]

I have become acquainted with so many friends with Parkinson's that I decided to read this book to become more acquainted with this disease. The author also has Parkinson's disease and he covers the past and recent developments in diagnosis and treatment of this disease along with future studies. ALS, Huntington's and Alzheimer's diseases are also studied in this book but not as much. I also read his footnotes which really add to the whole book. Well written and researched.

[Kathy Heare Watts · Rating 5 out of 5]

A book with some medical history, patient accounts, and insight into Parkinson's Disease.

I won a copy of this book during a Goodreads giveaway and am under no obligation to write a review and do so voluntarily. All thoughts, opinions, and ratings are my own.

I am passing this book along to my father who has a friend with Parkinson's and I am sure he will read and learn from it too.

[Catherine · Rating 4 out of 5]

This was very informative for a primer on the history of PD and the research initiatives for a "cure" and/or symptom relief. A bit heavy on the science, but needs to be in order to communicate the issues with various approaches.

[Pradnya · Rating 5 out of 5]

Good book about the complexities in Parkinson disease. Technical at times yet still interesting for someone who may not know much about the working of the brain.

[Sandra de koning-vd pol · Rating 3 out of 5]

Een emotioneel doorlezen, soms diagonaal soms in een andere taal, vertaald in herkenbaar daar...

[Yasemin · Rating 5 out of 5]

An incredible detailed book about Parkinson. The book was well written. Easy to understand with the explanations when introducing new terms.

[Oscar Romero · Rating 5 out of 5]

This is a super amazing book. Based on this reading, I can safely make this statement, also based on a fact described in a book about Elon Musk and his approach to solving problems. He ordered his design engineers--when designing solar roof tiles--to go and work on installing them too....This was because installers claimed they were pretty hard to install. And guess what? Once design engineers tried installing the tiles themselves, they agreed and went back to re-design them, improving how they were supposed to be installed. If you see that-it sure makes sense. So, how come we do not do that more, in all areas? Management is one of them. Quite easy to give orders to do or make something, when that something is many a times quite difficult if not impossible to do.

I can also see another example: when an actual Doctor has a disease he or she is researching--the end results are usually much better solutions are also usually found faster. Why? Because there is no better incentive than when we experience what other people experience, many times.

This book, by Jon--it offers a completely different perspective--why? Because he now has the same disease he was an expert at researching and talking about before. But now that he has it--it sure changes everything as he is now living it too.

It was the best book about everything that everyone worldwide is currently doing and why they are doing it, to try to understand what causes this disease and what can be done to treat it, measure it, and if possible, prevent it. Written in such a manner--that even I could understand.

Thank you, Jon.

Even if you do not have it or have a loved one who has it--I strongly recommend this book as it opens our eyes to many early tell-tale signs that may help us find out if we are susceptible to getting it later.

[Oscar · Rating 5 out of 5]

This is a super amazing book. Based on this reading, I can safely make this statement, also based on a fact described in a book about Elon Musk and his approach to solving problems. He ordered his design engineers--when designing solar roof tiles--to go and work on installing them too....This was because installers claimed they were pretty hard to install. And guess what? Once design engineers tried installing the tiles themselves, they agreed and went back to re-design them, improving how they were supposed to be installed. If you see that-it sure makes sense. So, how come we do not do that more, in all areas? Management is one of them. Quite easy to give orders to do or make something, when that something is many a times quite difficult if not impossible to do.

I can also see another example: when an actual Doctor has a disease he or she is researching--the end results are usually much better solutions are also usually found faster. Why? Because there is no better incentive than when we experience what other people experience, many times.

This book, by Jon--it offers a completely different perspective--why? Because he now has the same disease he was an expert at researching and talking about before. But now that he has it--it sure changes everything as he is now living it too.

It was the best book about everything that everyone worldwide is currently doing and why they are doing it, to try to understand what causes this disease and what can be done to treat it, measure it, and if possible, prevent it. Written in such a manner--that even I could understand.

Thank you, Jon.

Even if you do not have it or have a loved one who has it--I strongly recommend this book as it opens our eyes to many early tell-tale signs that may help us find out if we are susceptible to getting it later.

[Anson Cassel Mills · Rating 4 out of 5]

In 1986, science writer and professor of journalism Jon Palfreman made a memorable documentary, “The Case of the Frozen Addict,” for the PBS series Nova. San Francisco drug addicts had unwittingly injected themselves with a neurotoxin that froze them into an advanced stage of the neurodegenerative Parkinson’s disease, a personal tragedy that ironically led to significant scientific advance in the study of that disease. Then, defying the laws of probability, Palfreman was himself diagnosed with Parkinson’s in 2011.

Parkinson’s often leads to cognitive deficits and dementia, but this book demonstrates that Palfreman remains at the top of his game. He does not shy from self-reference but wisely directs most of his energy towards providing a concise history of the disease and its treatment, balancing the science with personal experiences of fellow “Parkies.” Palfreman has a firm grip on both the science—some of which is exceptionally abstruse—and the English language, and he provides some masterful explanations for laymen.

Of course, the poignancy of author-as-patient persists in the reader’s consciousness as he makes his way through this fine book; and he will sense some of the author’s frustration that so many promising leads have come to so many dead ends. Even so, Palfreman celebrates triumphs of the human spirit. He even suggests that a major scientific breakthrough may be right around the corner. Finally, few readers, even those who have abandoned God, will be able to view the complexity of the brain with anything but stupefying wonder and say with the Psalmist, we are “fearfully and wonderfully made.”

[Isabella · Rating 2 out of 5]

Jon Palfreman, a Parkinson's patient himself, brought up Parkinson's disease in a new light. Jon Palfreman's "Brain Storms: The Race to Unlock the Mysteries of Parkinson's Disease" discusses the urgency of creating a cure for this progressive neurodegenerative disease. Throughout his book, he brings up the struggles that he has faced as a patient with the disease. He brings up multiple interesting anecdotes, such as the reason why humans are the only animals to develop the disease. He also mentions the possible cures for Parkinson's in the future. He talks about how we, as scientists, patients, doctors, and the community need to work together to find a cure. He believes that there will be a cure one day, but it may not be in his lifetime. I thought that the book was okay. It was informative and I liked that it was written by someone who knows the disease personally and up close. However, out of all the Parkinson's books I have read, this was not my favorite. It was a little dry in parts and it didn't live up to my scientific standards. Although there was a decent level of science in it, it was mostly about the perspective of a patient with Parkinson's. It was also essentially a beginner's guide to understanding Parkinson's. I would not recommend this book to someone who already knows a lot about the disease, but I would recommend it to someone who just wants a basic level of understanding of it. Overall, my rating is 2/5.

[Jami · Rating 4 out of 5]

I've done quite a bit of reading about neurology over the past few years, so this intrigued me. This was a well researched book about Parkinson's and the efforts that have gone into finding a cure for this disease. The focus of this book is on the clinical studies and research into the disease, as well as the various treatments that have been tried, some more successfully than others. I learned quite a bit about Parkinson's in general, and was surprised at how varied the symptoms are. I assumed that everyone had the same tremors associated with Parkinson's, but there are so many more aspects to this disease. There are also some interesting ways people have used to manage the disease, including music therapy and tricking your body. I was also surprised at the "placebo effect" that was shown in some Parkinson's treatment, particularly for how long these effects lasted. I also learned some things in this book that I believe would apply to clinical trials in generals, and I have a better understanding of why some promising leads end up failing during trials. While there is nothing at the moment to cure this disease, all it takes is that one breakthrough; I believe that this will happen and that when it does, it will benefit so many other neurological conditions.

[Elizab · Rating 4 out of 5]

My husband was diagnosed with Parkinson’s Disease about four years ago. At first, we followed the conventional route prescription meds, physical therapy, and regular doctor visits. Unfortunately, despite our efforts, his condition gradually got worse. His memory declined, coordination became a challenge, and daily life was growing increasingly difficult for both of us.About a year ago, feeling like we were out of options, we decided to explore a more natural route. That’s when we came across NaturePath Herbal Clinic. To be honest, we didn’t expect much. But we were surprised within just a few months of starting their herbal program, there were noticeable improvements. His alertness sharpened, his mobility improved, and he seemed to have more strength and energy.Today, he’s more active, confident, and independent than he's been in years. It’s been a transformative journey, and I truly believe this natural approach made a real difference for him. If you or someone you care about is dealing with Parkinson’s, I’d definitely suggest taking a look at what NaturePath offers. Their website is www.naturepathherbalclinic.com
info@naturepathherbalclinic.com

[Joseph Hamilton · Rating 4 out of 5]

Somewhat refreshing to read about Parkinson’s from someone who actually lives with the condition. I don’t think another author could be better situated to discuss the subject, having previous experience with neuroscientists in the field and subsequently being diagnosed with the condition.

Jon takes the reader chronologically through the ups and downs of Parkinson’s Disease, from the initial discovery by James Parkinson to current therapeutic trials. I am glad that he maintains a rather objective stance at points, likely due to a journalistic background, as the impact of research can often be exaggerated. Nonetheless, Jon’s optimism shines through at times.

Provides a good overview of successful (i.e. L-dopa) and unsuccessful clinical ventures, providing enough personal detail to feel invested. I would recommend if you want to learn more about the disease. There is some discussion of the science behind the disease and a lot about people he has met along the way. Good foundation if you want to then read more into the science.

[Kerry Browmans · Rating 5 out of 5]

I have been diagnosed with Parkinson's disease since 2010, by the VA. I found that none of the current medications worked (side effects for me). I currently take pramipexole dihydrochloride three times daily. It isn’t working well neither. I still have some tremors. Was on carbidopa levodopa but only lasted 90 minutes then wore off. Down side of carbidopa is after reaching max dosage it will no longer give relief, nothing was working for me and to make matters worse there has been little if any progress in finding a reliable medical treatment for Parkinson's disease without spending thousands of $, finally this year I was introduced to Health Herbs Clinic and their effective Parkinson’s herbal protocol. This protocol relieved symptoms significantly, even better than the medications I was given.. No case of Parkinson’s, hallucination, weakness, muscle pain or tremors. I’m strong again and able to go about daily activities. Visit Health Herbs Clinic website healthherbsclinic .com

[David Cravens · Rating 5 out of 5]

My wife was diagnosed of Parkinson’s Disease at age 61. She had severe calf pain, muscle pain, tremors, slurred speech, frequent falls, loss of balance, difficulty in getting up from sitting position. She was put on Senemet for 6 months and then Siferol was introduced and replaced the Senemet. During this time span she was also diagnosed with dementia. She started having hallucinations and lost touch with reality. Last year, our family doctor started her on Uine Health Centre PD-5 formula, 2 months into treatment she improved dramatically. At the end of the full treatment course, the disease is totally under control. No case of dementia, hallucination, weakness, muscle pain or tremors. My wife is strong again and has gone on with her daily activities as I share this experience. I’m surprised a lot of PWP haven’t heard of PD-5 formula. we got the treatment from their website uinehealthcentre. com

[Angela Rempel · Rating 4 out of 5]

I was around 58 when my thumb started giving me problems. As time passed, I had other symptoms: hand tremors, restless sleep, muscle weakness, cognitive decline, voice spasms, and a stiff, achy right arm and ankle. At 60 I was diagnosed with PARKINSON’S DISEASE. I was on Carbidopa and Pramipexole for two years; they helped a lot but not for long. As the disease progressed, my symptoms worsened. With my neurologist's guidance, I started on PD-5 treatment from U.H.C. (Uinehealth Centre). The treatment worked very effectively; my severe symptoms, especially the tremors, simply vanished. I feel better now than I have ever felt, and I can feel my strength again. Visit Uinehealthcentre. net. My neurologist was very open when looking at alternative medicines and procedures; this PD-5 treatment is a breakthrough.

[Kristin Smeltzer · Rating 5 out of 5]

My husband was diagnosed with early onset Parkinson's disease at 67. His symptoms were shuffling of feet, slurred speech, low volume speech, degradation of handwriting, horrible driving skills, and his right arm is held at 45 degree angle. He was placed on Sinemet for 7 months and then Sifrol and rotigotine were introduced which replaced the Sinemet but he had to stop due to side effects. We tried every shot available but nothing was working. There has been little if any progress in finding a reliable treatment, I quit my meds due to side effects. Our care provider introduced us to Kycuyu Health Clinic Parkinson’s herbal treatment. The treatment is a miracle. My husband has recovered significantly! Visit kycuyuhealthclinic. co m