“Brain storms” by Jon Palfreman (Year 1 Thur.)
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I have learned about neurodegerative diseases on my biology lectures. But it was interesting to learn only about Parkinson’s disease. I have never heard about history of researching this disease. I liked the most the part, which showed how Parkinson got to know more about it asking pepole on the street in London.
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Iga, I totally agree with you. I learnt something about neurodegerative diseases at biology lesson, but reading about researches and how all experiments about those diseases went was something new.
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Yes I agree with you because it’s hard to find such a good history part about this case.
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Do you know anyone with this disease?
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Actually i don’t know but if i do i’ll have a broader perspective on this disease
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I knew my grandma, and i knew many facts about it, but still i could learn something from the text.
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Iza, how did you like your biology classes and what neurodegenerative disorders did you learn about?
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It’s interesting and unbelievable, how a lack of one substance (neurotransmitter or hormone) can destroy your brain. We have learned about Alzheimer’s disease, Kluver- Bucy syndrome and many others but I don’t remember the names ( there are plenty of them).
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This is a truly fascinating branch of neurology and neuropsychology. Have you ever wished to study medicine?
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I wanted to be psychiatrist, but it is hard to get to medical university. Chemistry isn’t my forte. Studying psychology is more interesting I think. I’m interested in the human brain and his thinks??, not much in anatomy. Learning the names of bones in latina is difficult and boring.
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You’re right Iga, the whole process of researching was really interesting. I wonder how many people approached by Parkinson qestioned his sanity
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Honestly, this book was quite difficult for me and it wasn’t easy to understand everything, especially about brain and L-dopa. Despite that, I probably know more about Parkinson after reading “Brain storms”. In my opinion the most interesting chapter is about group therapy. It’s sad that people are afraid to tell their families that they have Parkinson disease. Group therapy is a place where they can express their feelings and thoughts.
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I agree with you. For me also it was the most interesting and surprising chapter.
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I agree with you. It must be very hard to show other people, thaat you need their help. That’s why group therapies are so important – you know you ahve other people’s support and that they undersand what you’re going through
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I think they want to be perceived like people without any diseases. They try to live a normal life and they don’t want compassion from others. Maybe they can’t reconcile themselves
withto the fact/ come to terms with the fact that they are ill so they believe that it will be also difficult for their relatives. -
I don’t have Parkinson and I don’t know anyone who have this disease so it’s hard for me to say. I reckon that it’s hard for them because they might be afraid of people reaction. Maybe they think that family or friends will reject them or change attitude towards them. Also, people with Parkinson disease may think that it’s their “weakness” and they don’t want to show that they are weak.
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Perhaps they don’t want to lose their current states of relationships. Everybody can react in their own way – some of them may get confused or shattered and start to isolate, some may become overprotective – and it can be really difficult, as well as disappointing, to find someone understanding. It’s better to keep the status quo and come out only to those fully trusted.
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I think that the group therapy is really good. You could say your story and everyone know how you feel. I think it is really helpful for people with PD.
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Yeah, and I loved the way they all felt united in the fight. The power of social support is tremendous and it’s uplifting that people in difficulties don’t give up but try to help each other, basing on their experiences. If only those who feel all alone could get reminded about this and encouraged to try to trust others again.
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Patricia, students at your level should expect to receive different types of texts. Some of them may be more challenging than others.
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Yes, that’s true. It was a great occasion to learn new and rarely used medical words. Maybe in futer they will be helpful to describe other diseases.
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I also think that was the most interesting chapter, actually I didn’t realise before that telling about the PD may be such a big problem, now I completely understand it. About the group therapy I’ve seen in before in movies or books, and it also interested me how it works in real life.
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Group therapy is also very intriguing for me. Sometimes I wonder if group therapy is as effective as normal therapy.
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The book has broadened my perspective on neurodegenerative diseases, because I haven’t really learned much about it before. I learnt some new
informationsinformation from this text, for example that shaking hands isn’t the only symptom of Parkinson’s disease. It was also very interesting to read about some researches about Parkinson.-
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I agree, this book was very interesting but sometimes hard to understand. However, I’ve learned new vocabulary.
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yes, there were a lot of difficult medical terms, that sometimes I didn’t even understand in Polish 🙂
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In my opinion the book was a little bit boring. It was quite hard for me to read this book, because of medical terms and vocabulary. However, before reading I knew almost nothing about Parkinson’s disease. This book made me realize that. I didn’t know how different it could be for different people. What positively surprised me was the community around Parkinson’s disease.
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What do you think about meeting with those who had Parkinson disease ?
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I think that it is a very good idea. Thanks to these meetings people could support each other.
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I agree with you, it was hard for me too to read that book, but thanks to that book I know more about Parkinson’s disease
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Exactly, medical terms very really hard to understand in this book.
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It’s amazing how people support each other in difficult times. Positive atmosphere of their meeting gives them hope and thanks to that they don’t give up.
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Yes, exactly. She has a lot of difficulties due to PD for exactly she falls over or breaks glass sometimes but she don’t reconcile that it is caused by illness. She said then for example “I’m so clumsy!”. I think it will be easier for her when she understand that accidents like this will be happend and it isn’t her fault.
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I’m very sorry to hear it, Nataly. How is your grandma doing? Does she belong to any Parkinson’s organisation or movement workshops similar to Pamela Quinn’s labs?
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No, she isn’t. I think there is no such organisation where she lives.
At the beginnig it was really hard because her condition was getting worse and doctor didn’t know what it could be. But when she found the right doctor and she began to take varoius medications her condition is stable. -
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I haven’t known anyone with Parkinson’s, but because it’s quite common disease, I think we should at least recognise its early symptoms.
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I agree with you Agnes but sometimes it can be difficult to recognise syptoms.
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I’ve learned some about neurodegenerative diseases in high school, it’s always been interesting and hard for me to read.This book was very interesting too because it was written by a person who has this serious disease and his perspective, thoughts and so one??.
Also very fascinating part wasI found the history of P.D andthisthe part about walking to the beat of music very interesting. I also thinkalsothat parts with special medical termswaswere a little bit hard to understand.-
I also learned about neurodegenerative diseases in school but those information were very sketchy and I think it is a big problem in our society because if our knowledge is so modest then when we meet somebody that suffer from e. g. PD we don’t know how to behave and even what to say to that person
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I found it also very good thing that this book was written by a someone with Parkinson disease, because it gives us certain that he prepared his book with as many facts and information as he could. It is also about his disease – his life, so he did it also for himself (what he said in the begining of the book).
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Reading this text I was a little bit confused, cause I had a problem with understanding some words. Any way it was very interesting, and I realized how fascinating it is. I always thought the only thing about Parkinson is shaking hands. This book also made me read about Parkinson something else online. The thing that surprised me the most was the experiment with chair and placebo effect. It is always so interesting how we can manage our body to do something..
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I thought the same! only shaking hands. I didn’t know that the people with parkinson’s disease can’t walk or stand up from their beds. Horrible
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I agree with you, this placebo effect is very interesting. Also this picture of this special chair was a very good idea that the author placed it
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I feel the same way. I was also always associating Parkinson disease with shaking hands. Experiment with chair was really surprising and it showed me that placebo might be an effective treatment (of course, not always).
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Kinga, do you know anyone with Parkison’s disease? Or have you ever seen someone with this disease?
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I think so, cause my great-grandmother had this disease, but I don’t remember her that much. The only thing I remember is she thought that my older brother is her grandchild-my uncle.To me it was pretty funny then, cause I was a kind and I haven’t realized why was it happening all the time.
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That’s true. People’s minds are very susceptible to suggestion, Kinga 🙂 You’ve mentioned shaking hands as one of the symptoms of PD. What’s the more technical name for it?
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I guess it is hand tremors
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I didn’t know much about PD disease before and thanks to this book I’m more aware. Now I know that shaking hands are not the only symptom.
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I enjoyed the first four chapters of “Brain Storms” and it for sure has broadened my perspective on on neurodegenerative diseases, especially Parkinson’s disease. Books like this one are my favorite kinds of books – the ones that present some medical issues, but not in a textbook kind of way. The book engrossed me so much, that now I feel the need to read more on this topic. Jon Palfreman’s writing style seemed really enjoyable and despite all of the medical terminology, the book was a pleasant and informative read for me. It made me realise how little I knew about Parkinson’s disease and now I’m very glad that I had a chance to read it. It struck me how differently people experience Parkinson’s and how distinctly it evolves for every case.
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I agree with you. The fact that the autor has Parkinson’s disease made the book’s content more fascinating. It wasn’t simply about the disease, it was about the people with it. Thanks to that a reader has a diffrent aproach.
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You’re right. I also think that without the author’s subjective comments, anecdotes and writing from his perspective this book wouldn’t be so captivating.
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Yes I agree with you it was very suprising how differently people experience Parkinson’s. Also I learnt that it can start even when you are quite young like 30 years.I always thought that it was elderly disease.
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I also used to think that. It’s really surprising and quite terrifying how unpredictable human brain is and how unknown many neurodegenerative diseases are.
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Yes, this book has broadened my perspective on neurodegenerative diseases. I knew about those kinds of illnesses, but I have never read more about them, because I was always interested in other diseases and no one from my family suffered from that. I found in those chapters many new and interesting
inromationsinformation about Parkinsosn’s disease, but the one thing that was really intriguing for me were ideas of new therapies for patients – “shaking chairs”.-
Mary, do you see yourself working with people with PD? What makes you interested in this disease in the first place?
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Yes, I think that I could work with these people, but I would prefer to help people with mental diseases. That’s why I’m study psychology. Anyway, I found really interesting that it is connected with lack od dopamine and that young people can suffer from this disease.
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It definitely broadend my perspective on neuroldegenerative diseases, because I didn’t know much about them. I was very intrested in this lecture – it opened my eyes for how Parkinson’s disease affect peoples life. But for me the fact how they tried to treat them with medicine and how that affected their future was the most shocking thing I have learned.
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I agree with you. The whole aspect of the story about L-dopa, all of its side effects, motor complications and how it affects people’s lives was shocking for me as well. It’s also interesting how L-dopa can be called “advanced” in comparison with other neurodegenerative diseases. Unlike Alzheimer’s, Huntington’s or many other diseases, PD has L-dopa, which is not a cure, but it’s “at least something”.
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Probably everyone knows about Parkinson’s, but few is truly aware of the complications. Life with this disease ia not easy. Often people are too embarrassed to inform about their struggle.
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Yes, it definitely has, because until now I have learnt only about that lack of dopamine is somehow connected with this disease. Now i know that it affects functioning of substantia nigra and then basal ganglia. I did not know also that heroine could cause parkinson’s, but the most interesting to me was the information that smoking and drinking coffe may protect us from coming down with parkinson’s, it was shocking to me, because smoking it is thought to be unhealthy.
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Omg, it shocked me too. My entire life my parents told me to do not drink coffee, and smoke cigarettes, and now it is said to be protection from parkinson
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Well I guess some things are poison for one and medicine for others. Still, I didn’t think that cigarettes are one of them
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I agree, this information about smoking was very surprising. I never thought that cigarettes can have a positive effect on our health.
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It is shocking for me as well, but I think smoking has more disadvantages than advantages, so I’ll stay with drinking coffee from time to time.
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I was shooked too. I always thought that smoking isn’t helthy at all. Despite that, I still think that smoking has more cons than prons.
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Exactly, I’d rather not to risk having lung cancer to protect myself from PD. Drinking coffee seems to be more rational and less harmful.
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I agree that this is information is something unique and change a little bit perspective on smoking cigarettes but in my opinion it still has more disadvantages than advantages.
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I was supprised that this disease can appear even in a person’s 30’s. I always thought it was older people’s problem
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I used to think that too. The only time I saw a young person with this disease was in the movie “Love and other drugs” , but it was just a movie. Have you heard about it?
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No, I haven’t. what is it about? how did it picture the disease?
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It’s about relationship between two totally different people and some difficulties they have to deal with. It’s kind of romantic story. And one of the main characters suffers from this dissease (it’s played by Anne Hathaway). Honestly, I have seen long time ago so I don”t exactly remember how this illness was pictured, but there was showed that she was able to live kind of normal life.
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Have you watched “Back to the Future” with Michael J. Fox? If not, watch it when you have some spare time.
It’s a very entartaining movie. Anyway, Micheal J.Fox might have had PD at the time, even though he was not diagnosed yet. As you probably learnt from the book, an individual may have this disease even for some time before he/she becomes symptomatic.
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The author mentioned even 22 year old young man who has a parkinson’s.
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Me too. I thought Parkinson’s disease affects people around 60 years old.
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Yes, he mentioned the NBA star Brian Grant, who was diagnosed at age of 36, and the Major League Baseball Ben Petrick, who learned his fate at age of 22.
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It is a little bit scary, isn’t? It shows us that everyone should study Parkinson disease a little bit at least, because we do not know when we can become ill.
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Yes, this book has broadened my perspective on neurodegenerative diseases – now I know now more symptoms of Parkinson’s disease. It was really interesting how many studies and experiments were conducted to get the cause of the disease and the treatment.
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I agree. In public space there is, in my opinion, not enough information about this disease. Most of us know only a few difficulties that people with PD face but there are mamy more and I think that mass media should talk about it more and more often
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I agree with you. I enjoy all these experiments. It shows us that people realy care about Parkies and try hard to find a Cure.
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Before reading this book I had just basic knowledge about neurodegenerative diseases. I knew that PD existed but this book opened my eyes on problems which people with Parkinson have. The most surprising for me was history of the young group of people, who got PD because of a bad batch of designer heroin.
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I agree with you. Fact that a bad batch of designer heroin can have such consequences was really surprising. I didn’t know that drugs can cause such illness like PD.
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It is suprising for me as well that a bad batch of designer heroin can cause Parkinson’s disease. I knew that it has a lot of bad consequences, but I didn’t about that particularly.
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I already knew bits and pieces about PD but it wasn’t much until i read that book. Now I know that it is caused by black stuff dead (neurons dying) and because of that is causing lack of dopamine (a brain chemical) – unfortunately we don’t know what is the cause of this. I also didn’t know that patients can help themselves with PD through dancing and it really amazes me. I started to think even more that we need to find the cure for this, because it is one of the most destructive diseases.
The most interesting information was the therapy through vibrations and it was confirmed that it was only placebo, but what interested me was the thinking behind this. Doctors they invented the armchair which was vibrating and it was supposed to help them with PD and they came to that invention by observing that patients feel better when they are in train or riding a horse.-
This dancing part of the text shocked me too! That’s amazing how we can control our brain
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And when I watched the video about Pamela it was visible that she was so passionate about helping people with PD because she is also suffering from it. I agree with you! I didn’t even know we can control our bodies that much.
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I also was quite suprised when I learnt that dancing and music could help. Then I thought that the case of disembodied lady was kind of familliar. She also had to think strongly about doing things like hand lifting to really do it with her body.
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Yes, I agree. I was also very interested in the ‘placebo’, which plays a big role in Parkinson’s disease.
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I think that the placebo effect is interesting. We are not sure how it works because one day you can respond to it and the other you don’t feel anything changing.
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I was amazed about the part of this ‘dancing therapy’, it is interesting how people can manged with theirs difficulties
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I’ve learned a lot from “Brain storms”. I’m honestly suprised with the lack of knowledge I had in Parkinson’s disease topic. Now I know about more Parkinson’s symptoms than just shaky hands, I also know more about medical background of the disease. What suprised me the most was the fact that even a teenager can have Parkinson’s disease and that it can be a conseqence of a mistake in producing drugs.
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yes, I was really surprised that not only elderly people have suffer from this disease but also really young people
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Yes, I also was very surprised that young people can have this diseaese. I didn’t know that drugs can cause PD
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This book definitely broadened my perspective on neurodegenerative diseases. To be honest, my prior knowledge of prakinson was not very wide. I was most interested in chapter 3: “The case of the frozen adicts”. I didn’t know that specific toxins contained for example in drugs can cause symptoms similar to those of parkinson’s disease. I think the case of George Carillo’s is very interesting. It must be awful feeling to lose control of your body and feel like frozen.
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I would say that George was a prisoner of his body, because it was certainly a trap. People must have been thinking that he is not able to think or feel. He must have been thinking that no one can help him.
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Chapter 3 was really interesting. It is shocking how one chemical can ruin your life. I agree that it must be awful to lose control over your body.
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I think the worst thing is that it happened so fast and was so unexpected, he had no time to prepare for it at all
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Do you think that if it wasn’t so unexpected, he could prepare for it somehow?
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I don’t think anyone could fully prepare for something like this, but maybe with some more time given he would kind of prepare mentally for some aspects of his new life. I cannot imagine how hard it was for him
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I don’t think we can prepare for all situations in life. Unfortunately, diseases often surprise people suddenly and change their reality. However George Carillo contributed to his situation because he took drugs. It’s irresponsible. Nevertheless, it is sad that he had to pay such a high price for his youthful mistakes.
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I think you’re right. He brought this on himself, yet I can’t hep but feel sorry for him
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Exactly. It must be very difficult to get used to the new situation when we are so suddenly losing the life functions we have enjoyed throughout our lives.
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This book has broadened my perspective on neurodegenerative diseases a lot. I learned a lot of new interesting things about people who suffer from such diseases. The most surprising information for me was the fact about those young people addicted to drugs, that their minds did function properly but they were unable to use and control their bodies. It was really moving that they was in the full bloom of their youth and they couldn’t benefit by their lives. Some of them died at so young age, it’s extremely horrifying in my opinion
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I agree. This story taught us much why taking drugs is so dangerous.
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This part of taking drugs was schocking how one decission can changed whole life so dramatlly
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In my opinion the book was hard to focus on and I had difficulties with some words but overall it showed me how little did I know about Parkinson’s symptoms. I didn’t know that dancing can help to control PD, so I found it really interesting and surprising.
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Wiktoria, how dancing helps people with Parkinson’s disease?
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It was said that dancing helps control our bodies, it’s really important for people with PD because they get to know their bodies and have better balance. What is more I think those dance classes are much more than only physical activities, all of the participants have this disease, including the choreographer, so I’m sure they are bonding there because they understand each other.
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I agree with You. For me the problem with this book was that I’m not very nterested in Parkinson disease and that’s why sometimes while reading it I was somewhere else. I find more interesting for example Korsakoff’s syndrome but all in all it wasn’t that bad.
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To be honest this book really hard to understand because of a lot of medical terms which I’m not really familiar with even in Polish. This forced me to focus on trying to understand all those vocabulary not on enjoying the story. But it does open my eyes to a different perspective of discovering an illness. I’ve always thought that people write about a disease about its symptoms and some time later, someone just come up with an idea of how to treat it. This book showed me that it’s not that easy. It takes time to fully understand the disease and finding the right treatment is a trial and error method.
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Right, the medical vocabulary was quite difficult, but beside it I think the story was interesting. It’s unbelievable that 200 years after discovering Parkinson’s, people still don’t have a cure without side effects.
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Yes and it is so hard for those afflicted with PD to make a decision: “should I take those medicines? Those pharmaceuticals may help me now but no one really knows how my organism will act in the future after taking them. But if I don’t try, I will never know.”
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I only knew that people with Parkinson’s have problem with trembling hands. My perspective has been broadened by the book, becuase I’ve learnt more about this disease. The story of Parkinson’s disease is quite intriguing, I didn’t know about the cures and their side effects.
The very interesting thing is that people can “fool” the brain and be able to function quite normally.-
When I read it I thought that side effects it’s something that occurred in the past and as the medicine moved forward there are no side effects anymore. I was so shocked when I realized that there is still no simple medicine without side effects for this disease.
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Agnieszka, I was also strucked by the fact that people are able to control automatic motions due to consciousness. It makes me wonder what mechanism hides behind and whether we will ever figure it out, because after all both conscious of unsonscious processes happens in one organ, the brain.
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Thanks to this book I boardened my knowledge about Parkinson’s disease. Now I am more aware about the symptoms. Also, „Brain Storms” helps me understand problems that people with PD experience in their daily life. I was surprised and moved by the passage about group therapy, when patients said that they had been ashamed or scared to tell their friends, family and employers about their disease.
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Yeah, this part was really moving. They were afraid of how other people would react to their disease.
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This also shows how difficult this disease must be, if people are scared to tell about it even their relatives.
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i think that one of the reasons why they are scared to tell even their families about their disease is that they aren’t reconciled with this tough situation and they don’t want to be treated differently e. g. like disabled
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The book showed me some characteristics of neurodegenerative diseases. I did not know much about them before. I have always connected Parkinson’s disease primarily with shaking hands so it broadened my picture of this disease. What suprised me was that the surveys about Parkinson’s disease started a really long time ago. Also, the treatment methods like shaking chair, vibration helmet or a role of placebo.
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I also used to think that Parkinson’s disease is mainly connected with shaking hands. I learned more about Parkinson’s symptoms when I watched “The Good Wife” in which Michael J. Fox played an attorney who suffers from this condition. Do you know any famous people who have Parkinson’s?
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Yes, I heard about Michael J. Fox too. Also, I know that Pope John Paul II had Parkinson’s disease. There are couple of names in the book and I remember astronaut Rich Clifford.
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In my opinion, this book was a little bit boring. I have never been eager to learn biology because it is difficult to learn for me. On the other hand I learnt some news thinghs about Parkinson. For example that this disease is associated with a lack of dopamine. What is more, all these experiments with animals and humans remind me a psychology a little, because in psychology making a experiment is a common thing.
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When I was in high school I always hated biology classes so I have never learned about any neurodegenerative diseases. At collage I had to learnt about the brain but still this book was very instructiv. For me the most suprising was situation in which fifty- eight year old male Parkinson patient was cycling. It was very bizarre because he had troubles with walking and then after a few minutes he was riding a bike. Now I know that people with Parkinson are able to produce movements where automaticity hasn’t been lost. Their dilemma about L-dopa traetment was also very interesting and hard. Is it worth to take it and be able to do most of actions without trembling and other symptoms with a cost of “on and off effect” or confusion, paranoia etc.
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I find it also interesting and shocking that people with Parkinson’s disease have troubles with some actions, but some of them, for example cycling, are not a problem.
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I agree with you, Zosia. It was shocking for me that some patients could smoothly ride a bike, but couldn’t really walk normally. Human brain is so mysterious and uncanny in so many ways.
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Yes and now I’m starting to appreciate that my brain have the ability to do things uncounsciously. Like it’s amazing that I can talk and cook at the same time without making an effort.
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Above all, the book showed me Parkinson’s from its humane side. The author’s remarks and recollections enabled me to empathize with people suffering from this disorder and I found out there is a way to get used even to something so worrisome as neurodegenerative illness. But perhaps it is possible due to gradual Parkinson’s development.
The other thing were the symptoms. I haven’t realised the course of the disease may differ so much from person to person, as well as the age of getting ill or the survival. Also, I was impressed by the ease to diagnose the illness. Before I thought it is far more complex, and besides it appeared to me to occur less often in the society.-
Julia, I also liked the book’s perspective. A disease is not only symptoms and statistics. People have to lead a life like everybody else and deal with difficulties associated with the disease. They are very brave trying to not give up hope.
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I love your sympathetic way of looking at being ill and totally agree that a disease is not symptoms or statistics – these are only facilities to deal with the illness at the social level, but unfortunately it is too often forgotten.
Yes, they are very brave, like ordinary heroes. Human life despite the difficulties is worth living, because it seems even a disease is not a sufficient reason to lose hope.
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The book has broadened my perspective and knowledge about neurodegenerative diseases, in particular PD. Frankly, I have never been interested in this disease and I have never looked for informations. Due to the book, I am now more aware.
I find Pamela Quinn’s case the most interesting. She used her dancer’s wisdom to help herself and others. Quinn became more aware of her body. It is extraordinary that people find different ways to deal with the disease.-
I think she is very inspiring. Her dance training gives her a unique position in fight with disease. Thanks to her, many people can improve their mobility.
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Book “Brain Storms” broadened my perspective on Parkinson disease but I already had some knowledge about this from life, books, school. The most interesting that I’v learnt from this book were history of discovering this disease. I like reading about people and how they got to something new, for example inventions or thoughts.
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I also am interested in discovering something new. Inventions can show us how people was thinking in the past.
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It is fascinating how many researchers were engaged in the process of finding reasons why people come down with parkinson’s and also finding solutions how to cure this disease. Because in parkies is still hope that this condition can be cured.
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Drooling is a symptom of advanced Parkinson’s disease
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The main symptoms of PD are tremor, slowed movement called bradykinesia, speech changes, rigid muscles, writing changes.
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The most common are tremor, problems with speech, balance and movement.
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The symptoms are: tremor, rigidity, slowness of movement, postural inbalance also it is small handwriting and hypomimia (the facial expression is lost or diminished).
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I think it was called micrographia.
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There are many symptoms such as: tremours,postural imbalance, slow down movements, rigidity, hypomimia, small hand writing.
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Symptoms of Parkinson disease are: hand tremor, shuffling, stooped posture, expressionless face, speech changes.
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Most common symptoms are tremor, impaired posture and balance and bradykinesia
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but also speech and writing changes
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I read that because of the problem with controling muscle tension, people tend to have a hard time writing properly – this causes them to write smaller and indistinct letters
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Some of the symptoms are tremors, rigidity, slowed movements, loss of automatic movements and speech changes.
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Four main symptoms are tremor, poverty of movement, rigidity and postural instability, there is also small handwriting and facial masking
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Even though I already knew some things about Parkinson’s disease the book broadened your perspective on it still. For me the movie was more interesting than book (probably because of the language), but i learned more information from book. This book helped me understand more about the disease and how hard it is to live with it.
I didn’t know that dancing can help patients and it was very nice to watch how Pamela Quinn helped others and danced with them. -
In most cases – tremor, postural instability, speeach changes
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The symptoms of PD are tremor, rigidity, slowness of movement, postural imbalance, small handwriting, and loss of facial expression.
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My favorite part of the book is definitely Pam’s history. I love music and I am interested in art theraphy so I was amazed how dance helped her. Also, I have so much respect for Pam becouse of her work for other people with this disorder. It must be so hard to teach someone while struggling with the same problems. It is like double fight with this disease.
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I agree. This part is my favorite too, and Pam is really strong woman.
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Symptoms of PD are slowed movement, imparied posture and balance, writing and speech changes
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Symptoms of PD are movement changes, changes in writing, changes when speaking and tremor
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Despite difficulties in understanding story caused by medical terms, this book broadened my perspective on neurodegenarative diseases a lot. Before reading this book, I didn’t know much about Parkinson’s disease. For instanse I wasn’t aware that there are so many symptomps and that different people can have different symptoms, not in the same time. One people can have mild symptoms for 8 years or more and other can’t function after 3 years of a diagnosis. The most surprising I’ve learnt is that L- dopa which supossed to treat, can also cause many side effects like motor impairments or hallucinations.
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I agree with you. It shows us that a road to cure is very difficult.
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Yes and the story of Pamela Quinn was very interesting. She has been suffered from PD for 18 years, but her hard work helped her maintain wellness
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It’s so interesting that there are people that have PD a short time and have really advanced symptoms and some that struggle with the disease for a long time can have mild symptoms. And in my opinion, the fact that people have different responses for the treatment can make it harder to cure the disease.
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I agree with you, L-dopa is really controversial cure. I think that having Parkinson’s disease must be even harder than it seems if those people decide to take such a dangerous medicine
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I agree with you Irmina. I think that there aren’t a lot of types of medicine to cure PD. That’s why poeple take such a dangerous medicine. They prefer to get better for a while despite the awareness of side effects.
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I feel so sorry for them, I cannot imagine making this kind of decision. There is no such thing as good choice in Parkinson’s disease. All you can do is choose path that in your opinion is less painful
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Beautifully said Irmina. The worst part about this disease is that even if you choose a path that is less painful, you still have PD. It’s sad that there is no medicine that would cure this disease entirely.
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People affected by Parkinson’s disease are slowed down. They experience muscle stiffness, and their finger, hand or limb shakes.
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There are a lot of various symptoms of PD but it could be for example: tremor, loss of automatic movements, speech and writing changes.
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Major symptoms are tremors, rigidity, slowed movements, loss of automatic movements and speech changes. It is really a scary for me to think that some people have to live with it. I can only imagine how live has to be difficult during the final stage of PD.
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It must be a real challenge for them to cope with all this difficulties and trying to live normally
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What scares me the most is that other people can tell something is wrong but they think this person is an alcoholic
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The most common symptoms of PD are tremor, slowed movement, speech changes, writing changes and loss of automatic movements
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There are many symptoms of this disease. Most people only know about tremors and I was one of them before reading “Brain storms”. Slowed movement, impaired posture and speech changes are also symptoms of P.D.
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As you said there are a lot of symptoms of PD, but most of us knows only a few. In my opinion it is essential to teach people about such diseases because as one of the members of the support group said: sometimes people may perceive those ill ones as drunken or under influence of drugs
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The thing that shocks many people is the paradoxes of Parkinson’s disease. What are these paradoxes?
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That they are not able to walk, but still can ride a bike or ice skate.
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People with PD can ride a bike even if the are not able to walk.
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They can’t walk but they can ride a bike. For me paradoxical was also when Bonnie said that she is much happier than she was before, but I’m not sure if it’s common or if it was just one case.
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To me the most striking paradox was that despite the malfunctions of more primal brain structures – that are basal ganglia – can be skipped or maybe rather compensated by the conscious activity of cortex and the automatic body signals can be broken down. The power of humane consciousness is a mystery, but unfortunately we all know how much mental effort it demands – what is visible especially while learning new things.
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For example they have difficulties in walking but they can ride a bike
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It’s difficult to understand how it works because walking seems easier than riding a bike or running.
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Yes for me it’s really intriguing as well. I thought that cycling is neurologically harder because you have to e. g keep balance while sitting on a vehicle with just two wheels so it’s really easy to fall over, but it’s seems that I was wrong 🙂
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It is probably the fact that some people affected by PD can run, ride a bike but they aren’t able to just walk.
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One of the paradoxes is a fact that for people with PD walking seems to be harder than cycling
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In the book explanation is that cycling is neurologically simpler task than walking. In riding the bike you have the same movement in both legs. When person is walking its easier to lost synchronization of movements, you have to move your legs in different directions.
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The paradox is that people with PD are often not able to walk but they can do things that they learned really well and come to them automatically like ice-skating, riding a bike, or running.
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It’s quite amazing that the people have problem with walking, but when they think about dance, it makes walking easier.
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Fact that they can’t walk but they can ride a bike shocked me
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What was the “Case of the Frozen Addict” and how was it related to MPTP?
http://openvault.wgbh.org/catalog/V_474CF2C8A20B4173988486AC4C605A3C – You may want to watch it 🙂
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“Case of the Frozen Addict” is third chapter of the book “Brain Storms” we read. MPTP is a is a powerful neurotoxin which could induce Parkinson’s.Barry Kidston was making his own drugs and he wanted to make MPPP (Demerol) but by accident he made MPTP. This case was related to the MPTP because it was in the heroin that these adicts took and it induced Parkinson’s. On the other hand, for researchers, it was really helpful in
researchtheir study on PD. -
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MPTP is a chemical compound wich causes irreversible symptoms of Parkinson’s disease. Toxins in drugs go to the brain and make people “frozen”.
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That’s the fact that people with PD often can’t walk, but they can ride a bike or skate.
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MPTP causes permanent symptoms of Parkinson’s, because it destroys dopaminergic neurons in the substantia nigra of the brain. The group of young people, who were drug addicts, could not move or talk, their faces was expressionless after taking MPTP.
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This was a case of a few addicted people who were taking heroin and then had symptoms of Parkinson’s disease. And MPTP was the contaminant in the heroin.
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One day, they stopped moving and talking, they were stiff – like made of wax, their faces were expressionless, and the doctors didn’t know what was wrong with them.
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It’s like being frozen by taking drugs. The book describes George Carillo’s case. He could see people and hear noises, but he could not say anything or move his head. The neurologists thought it was a psychiatric disorder. It was a neurological problem anyway. The symptoms were similar to those of Parkinson’s disease.
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What suprised me is that for a long time both neurologists and psychatrists tried to prove it’s not a case in their field, I thought it’s gonna be the opposite way
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They wanted to make MPPP, but by accident they made MPTP. After taking it, they started to have symptoms of Parkinson’s.
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Case of the Frozen Addict is a story about people who bought drugs which were of uncertain origin. It came out that the
substationsubstance which was supposed to beanMPPP was in fact MPTP. MPTP was thenwasa suspect for being the cause of Parkinson’s symptoms which “the frozen addict” have experienced. -
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I think that movement lab is a very graet idea and also is another way to explore to help people with PD. She gave them opportunity to controle they movement with the music. It’s very good idea and maybe it should be a subject to testing.
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Pamela Quinn used music to deal with her own dyskinesia and help others with it. She was more expirienced with controlling her body so she decided to help others. She said that people with PD should treat their brains like muscles and make them flexible and because of this they could control their movement more and deal with dyskinesia better.
I think Parkinson’s Movement Lab is really good idea because it shows other people with PD that they are not alone with their disease.
It is really useful to learn those techniques because they can, at least, reclaim a bit of control over their body. They can learn to live with PD. -
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Pamela Quinn is an extraordinary case because she is an ex-dancer. It means that she can control her body and movement better than an average person. It was probably very difficult for her when she realised that she has P.D. Fortunately, she didn’t give up and she runs Parkinson’s Movement Lab. I reckon that this is a fantastic idea to help other disabled people, especially when you know how they feel. Rehabilitation and mental support is very important.
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She said that many of her tricks depend on music. For example she made a piece of music, which fits her stride when she’s outside. And when she steps over the lines on the sidewalk—she uses that as a visual cuing system to help keep her stride.
I think that the Parkinson’s Movement Lab she runs helps other people get used to the thought that they are not alone in this disease, that they have support. I think that her techniques can be useful to others, which doesn’t exclude the fact that everyone can learn their own ones.-
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I think that everyone should make this decision on its own, but I would recommend her lab to people suffering from Parkinson’s disease, because it could be a really good and helpful experience for them.
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Is it more about movement techniques or rather being in the company of other people with PD? Or maybe both? Another thing, could people in more advanced stages of PD benefit from her workshops?
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I think both. Learning new movement techniques can improve the comfort of their everyday lives and being with people with PD can help them socialize. People in more advanced stages of PD, for example those who don’t walk, won’t have benefits from the workshops like others, so probably group therapy would be better for them.
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Yes, you’re right. Besides we have to remember that PD starts as a – generally speaking – movement disorder. It ends as a movement and cognitive disorder. In the last stages people with parkinsonims develop dementia whose symptoms are similar to those of Alzheimer’s disease. It’s obvious that at this point they can’t participate in any workshops.
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It is use as a treatment oy people with P.D, but the use of increasing doses causing side effects, it also can pass through the blood-brain barrier.
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L-dopa is a medicine for PD but it has side effects, even worse that the disease alone, for example: dyskinesias, confusion, agitation, paranoia, and hallucinations. L-dopa can cross the blood-brain barier. This medicine gives people
taking it, normal present but not as good future because of the side effects.
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I’ve learned that it can cross blood-brain barrier, and it’s a huge challenge for scientist to accomplish in many substances that would be helpful in a fight with different mental disorders. However, there is a lot of side effects, like paranoia and hallucinations
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I think it was Jon Palfreman who wrote “the cure was even worse than the disease.” At the time the he was writing the book, he was on a dopamine agonist not or L-dopa. Why?
Also, you should remember that L-dopa once it crossed blood-bariers was converted into dopamine.
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Scientists disovered that after a “honeymoon period” patients displayed new, worse side effects like involuntary writhing movements of the arms, legs, or head called dyskinesias, confusion, agitation, paranoia, and hallucinations. And over time the drug became less and less therapeutic and had to be taken in higher doses and more frequently. Almost all patients taking L-dopa were sentenced to future disabling motor complications. So I think that’s why Jon Palfreman wrote that’the cure was even worse than the disease’.
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Yes, a sad thing about L-dopa is that it stops working. Can you image a person who got better thanks to it, so they are full of expectations and hope and then after some time (be it days, weeks or months) they not only relapse but their conditon becomes even more disabling. So it’s kind of trade between a better today and a worse tommorow.
That’s why Palfreman wasn’t taking L-dopa at the time he was writing the book.
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L-dopa is a substance that slides through the blood-brain barrier and produces anti-parkinsonian effects. But it has also side effects like high blood pressure or nausea.
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Dear All,
thank you for the discussion. I’ve linked two videos in this topic: one about P.Quinn’s workshops and the other about the “frozen” addicts. Some of you may want to watch it.
The topic stays open so that you can follow up with more posts, not only about PD but any other neurodegenerative disorder. As always, I’ll come back later to catch up with what you have written.Talk to you later!
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