“Brain storms” by Jon Palfreman (Year 1 Wed.)
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The book was quite interesting. In my opinion the most valid thing about it was that the book was written by a person who suffered from Parkinson’s disease. That give really important view on living with this disease. For me was educational and the most major information about the Parkinson’s becouse we all can read some scientific information in internet or some book but we can’t really see how to live with it.
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I agree with you, I enjoyed it as well. Which part or anecdote was the most interesting in your opinion?
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I didn’t really like this book. I’m very happy that I found out something about Parkinson’s disease, for example now I know that shaking hand isn’t the only symptom. But for me, the book itself was a little boring. It was really hard for me to focus on it. I didn’t have this problem with other books we’ve been talking about. And I had problem with medical vocabulary. I couldn’t understand many words, which made focusing on text even harder.
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I have similar opinion that the book was a little bit boring. The worst part of me was the chapter of history of the Parkinson’s disease.
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I totally agree, when I’ve read a prologue I thought “well, it’s not that bad”, but first chapter was so hard to get through for me…
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Yeah, for me too. For me, because of the general biology things, terms. I hate biology and learning it always is impossible in my case. But trying to find some positive things about this book, I must say that it was an opportunity to get to know much about this disease. I haven’t known much about it before reading it, probably because my interests don’t include biology.
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To be honest it was quite hard for me to read this book due to the medical vocabulary. Before I read the book I didn’t know much about the treatment of Parkinson’s disease. I found it interesting how L-dopa can both treat and impair. Also I admire Pamela Quinn for how she managed to control her body and overcome difficulties caused by the disease.
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Patients with Parkinsosn’s disease have dopamine deficiency. L-dopa is able to pass through the blood-brain barrier and as it enters the brain it is converted to dopamine.
ForIn the short term, symptoms of Parkinson’s disease decline. But taking L-dopa for longer time may lead to side effects like motor impairments, paranoia, hallucinations.
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I agree with you Asia. Some parts was boring for me too. I don’t like part about history of Parkinson’s disease. This part was full of medical terminology and boring facts that wasn’t really important for me
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Still, what did you learn about the history of PD? Who in your opinion was the greatest figure in the history of research on PD?
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In my opinion the greatest figure was Jean Martin Charcot who was the French physician. He realized how important to the scientific world Parkinson’s observations was. Parkinson wasn’t famous and Charcot popularised and extended his research
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Firstly Parkinson named this disease Shaking Palsy but Charcot realized that not every patient has this symptom. He thought that name Shaking Palsy can be problematic and misleading so he proposed name Parkinson’s disease and it’s become official
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Yes, that was the worst part for me too. Unfortunately, I’m not really good in all those brain parts, so even if I translated some of them, it didn’t get any easier.
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Well, get used to it. In Year 2, we will be talking about the brain, its main structures and functions.
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I can’t wait!
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I really like anecdotes about how scientists or doctors came up with an idea or observed and described new phenomena and diseases (maybe just shorter that this one in the book). Unfortunately, it is completely different to read about the disease when someone in our close surroundings suffers from it. On the other hand, it is easier to imagine the symptoms when you have the opportunity to observe them and compare with those described. However, the description of the disease and its negative consequences is simply sad when we know that it concerns someone very close to us.
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Unfortunately my dad suffers from this. It is extremely hard for us, because he has always been very physically active and practiced many different sports. Unfortunately, the first symptoms overlapped with his oncological treatment, so it was much more difficult to capture them. So it is not easy to look at his struggles with Parkinson’s symptoms, especially being aware that he will never fully recover.
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Oh, I’m very sorry! Does he belong to any Parkie organisation? It’s often very useful meeting and talking with people with the same condition. Some people go to conferences and take part in movement workshops, like in the one run by Pamela Quinn.
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In our small town there are no special activities for people with PD. I am also quite sure that he is not this kind of person who can find some value in talking with others about his feelings and experiences. Fortunately, he can play football in the yard with his grandchildren, so this is the best form of therapy for him 🙂
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I overall enjoyed the book, I thought I knew some things about Parkinson’s disease, but it really made me realize that I barely knew the surface of it. I didn’t know how different it evolves for some people, I just thought it all starts the same with shaky hands and tremors and gradually gets worse and worse. But there were some people who had mild symptoms for 10 years and there also were people who were unable to function after just 2-3 years of the diagnosis. The most interesting I found the quotes and struggles of every day life of people at the congress and personal additions made by the author, I think it made the book easier to read, even when there was a lot of science and medics vocabulary to it.
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I think it mostly varies on the person, but mostly slowed down movements or even some form of being paralyzed, frozen in extreme cases. Also people struggling with PD have big trouble balancing and synchronizing (they even “forget” to swing their arms when walking) and struggle with mild speech impairments.
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Yes, of course. There is also bradykinesia, rigidity, postural imbalance, hypomimia (reduction in the expression of the face), micrographia (shrinking handwriting) and many more.
The good thing about PD in comparison with other neurogenerative disorders is that dementia occurs in the final stages, so for a long time it’s not a mind-robbing disease.
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I found the book to be very interesting, despite the challenging language that was used. With learning more about Parkinson’s disease I had a chance to memorize some new phrases and words that are used in the medical field. I heard before about this disease, but not in much detail. I didn’t know about all of the symptoms and reading those chapters gave me a better insight into this aspect. Something that also stood out for me was the fact how many people in mass culture have Parkinson’s. It struck me how those people manage to live their lives and how the disease can impact on it.
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Medical vocabulary can be very hard, so I’m pleased that you found it useful. You mentioned people in mass culture suffering from PD. Can you give us some names?
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The ones that I remember are Robin Williams, Muhammad Ali, and Michael J. Fox.
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Yes, his name was definitely the most surprising one to see on the list, as I have seen the trilogy he starred in. I think it’s amazing how he is still acting despite having Parkinson’s.
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I found the book interesting but also hard to read at some parts. To be honest, I’ve never knew much about Parkinson’s disease so reading these few first chapters opened my eyes to what the condition actually is and how much it effects our body and mind. With how people usually associate it only with tremors, it’s importnat to know that it’s more than just that and that tremors can not even be present in some cases. Other than that I liked the history background that was given in the book but I also found the more medical centred parts hard to read.
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I would be surprised if you hadn’t found the medical vocabulary hard, because it is 🙂 But when you want to have “an intelligent” conversation about PD you must know the right vocabulary. What did you learn about L-dopa?
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It’s a medecine that was seen as revolutionary in studies on PD. After experimenting with antipsychotic drug reserpine on rabbits and noticing that their reaction to it resembles Parkinson’s disease, scientist Arvid Carlsson decided to try treating them with L-dopa which turned out to be a success. If I understood it corectly, it coverts into dopamine, which can disappear due to PD.
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But as someone said (perhaps Palfreman himself) “the cure was even worse than the disease.” Why is L-dopa considered worse than PD? And why do patients take it?
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At first l-dopa seemed almost like miracle with how it could make a previously unable to move freely patient, regain that ability but after what could be called a “honeymoon phase” it had some pretty heavy side effects. It caused dyskinesia as well as something called “on-off effect”. Other than that patients often suffered from hallucinations, paranoia and confusion. With time the drug had to also be taken in bigger doses and more fequently.
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While reading a part of the “Brain storms” I realised how little I know about Parkinson’s disease. It made me realise how common the disease is and how much more common it’ll become with growing percent of eldery people I find it fascinating that some examples trace back to twelve century B.C. or ancient Indian Ayurvedic. I’m glad that I got educated about the variety of symptomps (ex. micrographia) that can develop. What made me really happy is the community around Parkinson’s disease. Pamela Quinn Parkinson’s Movement Lab is a very good example here. The fact that she was a professional dancer and is able to use that to conduct classes is really amazing.
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What I found suprising is the fact that PD is less common in smokers and coffee drinkers. As it appears, smoking and coffee have their benefits.
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Yes, that shocked me too. I had to read that part a few times just be sure I understood it right.
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In comparison to other texts we’ve read so far, this one was honestly the most hard to understand and to stayed focused on. As I mentioned up, it’s nice that I could read a little about a disease I had poor knowledge of. This dancer’s example was the most interesting for me. Probably because my interests fix on motivational things, inspirations, just positive things in life.
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Like some of the girls above me mention, this book was really hard to read because of medical vocabulary. I felt bored, because it took me long time and much attention to finish this chapters. For sure it wasn’t nice bedside book 🙂 But after all I have to admit that before reading this book, I had very little knowledge of Pakinson’s disease and now it changed. In my opinion main advantage of this book was the fact that autor suffers from disease he wrote about, so we had ability to look at Parkinson’s disease from the perspective of a sick person.
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I generally didn’t enjoy this book, too. I’m not really into that kind of books. I’m not interested in history of medicine and diseases. Of course, I got to know something about PD, like the way it begins, the treatments, a life with it. I think I would never read about it by myself. But despite that, it was hard to read it, also because of all medical words and expressions that were used in that book.
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The only person he told was his wife. He mentioned questioning the diagnosis and being in denial. After more neurologists confirmed he had parkinsonims he isolated himself and couldn’t accept he had the same condition that the patient he had dealt with.
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First there was denial in his behaviour. He was shocked. He couldn’t believe and questioned the diagnosis. He consulted other neurologists but their confirmation made him self-pity.
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From what we know people struggled to come out to their close ones because of the idea of possible pity, trouble with employment and self-denial as well, when they would talk about it it would become real, but actually coming out could do more good for them like their behavior wouldn’t be misinterpreted, they can ask for help easily and be understood because of their condition, and their jobs would be protected because they can’t be fired because of a disease.
Palfreman’s first reaction was shocked, cause he was expecting the diagnosis his mom had about just a tremor, he took more than a year to adjust to it. He was first in denial, he didn’t tell anyone besides his wife, he tried escaping the disease by not accepting it. With time he did a full 180 turn and started reading and researching it as much as possible, decided to embrace the disease.
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Do you know anyone/Have you heard of anyone with a serious disease (doesn’t have to be a neurodegenerative one) who has come to terms with it?
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I do, actually a lot of people in my environment struggle with different kind of diseases and they, after some time, have accepted it and are doing a good job on living their day-to-day lives with them.
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I think they have problems with coming out, because they don’t want their dearest ones to worry. They also don’t want to be considered as help-needing and vulnerable, they don’t want to be a burden for anyone.
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They are afraid that they will be fired. But on the other hand, if boss doesn’t know about person’s disease, they may misinterpret their unusual behaviour – for example, they may think that sick person is lazy or drunk.
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At first the only person he told about his condition was his wife. He was very shocked with the diagnosis and couldn’t believe it. It took him about a year to procces the news during which he mentioned isolating himself and engaging in some coping strategies.
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I think that they’re scared of being treated like vulnerable old people who can’t do anything on their own – it’s the stereotypical image of a person with PD and with no additional knowledge a lot of misconceptions can be made.
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Jon Palfreman after diagnosis was in a state of shock. He wrote that it took him more than year to process it. He was denialing it. As I remember he also couldn’t believe in diagnosis, so he tried to contact with other doctors. He also attended support group meetings.
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It’s hard to tell close ones about any disease. People don’t want to be seen as weak especially that often they can’t accept their own illness. Some hate pity because it just reminds them of not so normal life they have.
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At first he was denying it. He told only his wife about it. Then, after the diagnose, he joined a support group. People affected by the disease might hide it because they fear being fired from a job or that others will treat them in special way. I think that they are also afraid of changing their lives, and they may fear being seen by strangers as weird, as there’s still many people who don’t know about these kind of diseases.
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Jon kept the diagnosis
insecret. He rejected the diagnosis and looked for other solutions. He just denied the disease. People don’t want to believe that the disease is happening to them. They want to think it’s a mistake because they are afraid of the consequences. It’s hard to accept that something bad is happening to our body and mind, something that we may not be able to control. There are also characterological changes in parkinsonism, the disease not only affects our movement, but also how we feel and how we behave. When dealing with a disease, we often don’t want to be asked about our condition, we don’t want to explain to others how we feel. I think that’s why patients may initially avoid meeting friends. They want to cope with their condition on their own first. -
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I think pthey don’t want to come out because they don’t want to be treated differently by others or be perceived as weak and vulnerable people who need to be taken care of.
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At first I thought I I won’t enjoy reading the book – the language seemed quite difficult and, like others, I don’t really know a lot about brain structure and anatomy yet. But while reading about PD I realised I don’t really know much about it – in my mind I just had this image of an old person struggling to eat something because they’re hands were shaking. It was great to learn more about the disease and how differently it affects different people.
I’m also a big film fan, and I watched „Awakenings” with Robin Williams and Robert De Niro few years ago – I’m happy that I could read about the true story behind it.-
Oh, I wanted alll of you to watch the movie for the next lesson. Hopefully, you watched it a long time ago and don’t remember it very well 🙂
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It’s a beautiful movie and it will be interesting to watch it again with some actual knowledge about the case ?
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In my opinion book was interesting, although it was hard to me to understand the parts with medical language. I enjoyed rather the parts that told the story of people, rather than medical details. I’ve never been interested in Parkinson’s disease, and I’ve learnt a lot from this text. I think it is very important to be aware of symptoms of such a disease, not only for yourself, but also for the other people you know or meet.
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I found this book very interesting even though it was quite hard to understand some of the vocabulary wich made it difficult for me to focus on the text. Despite that I found out a lot about this disease because before reading these few chapters I barely knew anything about this illness. Now I’m aware of many symptoms of this disease and how it affects people.
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I didn’t really enjoy reading this book. It was hard with all that medical language but I found historical parts pretty interesting. I knew nothing about James Parkinson. When it comes to the disease I don’t think I learned a lot since my grandma suffers from it so I’ve seen some symptoms myself.
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The one paradox I remember is that patients who suffer from Parkinson’s disease and are disabled to walk can still ice-skate or ride a bike. But I’m not sure if I misunderstood something.
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Yes. I believe is called kinesia paradoxica. It shows that a brain can function in some situations and not in others.
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Some people affected by disease can run, ride a bike, although they can’t just walk (which reminds me of a singer, Scatman John, who could sing, but couldn’t talk because of stutter). People with advanced Parkinson’s disease sometimes are “glued” to the ground and can’t move, but they are able to move as soon as someone draws a line in front of them.
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I also remember the example of running, but I’m not sure if not only after taking these drugs with dopamine
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I think that it was written that even without L-dopa they are able to run.
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Some people who are affected by PD can still do things like riding a bike etc. and it’s caused by something called kinesia paradoxica. If i understood it correctly it works by using different inputs than usual to cause movement.
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I think a treatment with L-dopa is also quite a paradox considering PD. It let the patient, who couldn’t even sit, stand up and walk immediately. But it helps only temporarily and then condition gets worse, even worse than it was before this treatment.
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It referred to six, young drug users that had symptoms of Parkinson’s disease. It was revealed that they were injected with a neurotoxic contaminant called MPTP, that induced parkinsonism in them. This case gave the researchers insight into Parkinson’s disease e.g. why the cells die and so on.
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MPTP was a contaminant in the heroin that the drug addicts took.
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It is the name of a documentry about six young people that were struck with Parkinson’s disease syndromes after drug abuse. Although it usually affects the eldery. Their case had a big role in Parkinson’s disease research.
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Yes, indeed. Why did they contract PD? After all, these were young people and PD affects mainly geriatric population.
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Bill Langston and his colleagues found out that those six young people had injected a bad batch of synthetic “designer” heroin that was actually neurotoxic contaminant called MPTP. After some more studying on animals it actually proved that MPTP can induce parkinsonism.
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Thanks to MPTP it turned out that Parkinson’s could be caused also in monkeys. And then researchers could test new treatments.
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It’s a case of six young people who, after taking drugs, got PD-like symptoms and froze/got paralyzed. They thought they were taking heroin or something similar, but they were really taking MPTP, so it was like a designer drug, cause they were trying to get MPPP. Their symptoms were very drastic and even after taking L-dopa, they would be worse anyway. At the time the book was written only 2 managed to live with the symptoms, one of them after undergoing a brain surgery, if I remember correctly.
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Yes, you’re right. A careless chemist was trying to produce MPPP but he made a mistake, the same mistake Barry Kidstone made in the 1970s. What he launched into the market was MPTP, a contaminant.
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If you’d like to watch “The Case of the Frozen Addict”, here it is:
http://openvault.wgbh.org/catalog/V_474CF2C8A20B4173988486AC4C605A3C
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It’s a case of six young people who due to drug abuse developed some Parkinson’s disease syndromes. The drug in question was MPTP which was contaminated in heroin used by them
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She has some tricks which depend on music. For instance, walking with tempo, rhythm of music and this way legs sync up with the beat. Using eyes – visual cuing with music are the most important tricks for her.
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‘Always feet first’ she says. She also says that in situation like this it is important to shift a weight sideways because then taking the weight off one foot allows to move forward. She gives an example of a penguin walking side to side and after a while changing to a quite normal walk.
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Her advice is very practical and people with all stages of PD may find it beneficial. And yet, some are reluctant to go outside and face their limitations.
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Yes. It is really crucial for all people with PD. These patients or students of her, as they are called in that video, speak up very positively about Pamela’s help and they seem to be happy being able to have this kind of help.
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She was listening to the music while walking, and synchronizing her walk with the musics beat. She also was walking along the lines of sidewalk and using it as visual cues.
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I think it may be useful for regural people affected by the disease. They might be trained to do so, I think it’s something that everybody can learn. That advice actually reminds me of a movie “Baby Driver”. The main character had an hearing impairment, but he was an excellent driver, who synchronized his maneuvers with the music he was listening on his MP3 player, and he was also making his own mixtapes.
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She uses music and its beat to help her walk by syncing her movements to it. She also uses lines on a sidewalk as a visual cue.
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I find her
advicesadvice very interesting. Especially the ones on what to do when you “freeze” in the middle of walking. I never would have thought that something as simple as drawing a line on a road with some chalk, someone putting a foot in front of you or even shifting your weight could help in a situation like that. -
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She uses a technic of walking with a song in her head. The rhythm helps people with parkinsonims walk more gracefully and further. All of the movements take mental focus so having some rhythm or melody in their head helps remember better.
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