“Brain storms” by Jon Palfreman (Year 2)
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Thank you, Kinga. It is a very interesting topic and I think the discussion is going to be intense. I’d like you to be ready to talk about the brain, encephalitis lethargica and the P.D based on “Brain Storms” next Monday.
I’d appreciate it if you didn’t only presented your opinion but also talked more with other people. -
I’ve found this book very informative and interesting. It shows the history of research on the disease, struggles to find the cause and a safe method of treatment. It also gives an insight into Parkies’ daily life with PD, how they try to cope with the symptoms and help each other via their support groups and numerous foundations.
This text was especially interesting to me personally, since my grandmother had been diagonsed with Parkinson’s a few years ago. The story of Pamela Quinn, which Mr. Palfreman brought to light, gave me a lot of hope for my grandma, especially that she is a fierce woman, who don’t give up easily. I belive that with the help of medical treatment and her determination, she will eventually be able to make peace with her diagnosis and learn how to live with it.
Another bit, that I’ve found particularly interesting was about the tragic fate of those so called “Frozen Addicts”. What really stroke me about their story was how it shows that even a small mistake, just a little change in the chemical structure could change somebody’s life forever. Also the fact, that were paralysed and couldn’t communicate with the outside world while being fully aware and consious was pretty terrifying. Nevertheless, it made me curious about the NOVA PBS’s documentary and since I really love this genre I’d love to watch it (which will be even more interesting given Mr. Palfreman’s backstory).-
Hi Joanna, this video should be of interest to you.
How is your grandma doing?-
Oh, thank You so much for the aforementioned documentary I’ll gladly watch it and share my thoughts about it.
As for my grandma, her condition is fairly stable, although the tremors are a real pain in the neck for her. She always used to be quite proud, never to be pushed around by anybody, always independent, doing things by herself. So given her character, she finds it very difficult to ask for help or assistance in carrying daily chores. She just can’t get over the fact, that her life will never be the same. I tried talking to her about it, reassure her, that this condition is nothing to be ashamedforof, that it is perfectly fine to “be a bit selfish and ask for help” (my grandma is convinced that asking for help is and act of selfishness on her part – and I just can’t explain to her that IT ISN’T). Despite all my efforts my grandmother is still unconvinced.. I’ve already told my mother about things I’d learned from the text in hope that she, as her daughter will sound more convincing. -
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It’s really interesting what is inside of people’s brains who struggled with Parkinson’s disease. This is not just a problem with “shaking hands”, but also with tremor all body (especially hands and head), rigidity, slowness of movement and postural imbalance. Through this book I found out that people who struggling with Parkinson they have difficulty with facial expression.In “Brain Storms” author mentioned Birkmayer who gave to the patients L-dopa and they started to perform activities like walking, smiling like a healthy people. Birkmayer documented some of this cases and he presented them before the Medical Society in Vienna, so I decided to find this video, because I wanted to see how this people started walking after this how before they couldn’t. Unfortunately I didn’t find the original video but I came across on other video also with Walther Birkmayer, when he showed his idea how to beat Parkinson. If someone of you is interested, I put a link here:
And I want to add that when I was younger and know that Parkinson’s exists I didn’t realized that this causes death. I found out when my classmate from middle school told me that her grandfather had died because of Parkinson’s. I wonder how many poeple may not know that this disease is fatal.-
Hi Camilla, thank you for the video. You may be also interested in “The Case of the Frozen Addicts” that I gave a link to.
Indeed, P.D. is a fatal disease, but the new medicines may prolong a patient’s life by a decade, two or more. In comparison with other neurodegenerative disease, such as A.D., H.D, or CJ.D, it’s not that dramatic.-
Thank you for the video. I’d love to watch it. And of course you’re right. We are in good place that we have scientists and doctors who really want to help people with neurodegenerative diseases. I hope that one day they will find cure for other diseases. Right now we can be happy that they found this medicine 🙂
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Thank you Kamila for the interesting video!:)
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Hello:)
I read all 4 chapters of the book yesterday and honestly I found them very interesting. I am going to read more, because Parkinson’s disease is broad topic and I would like you get more information about it.
When I was reading it, I was comparing situation of people suffering from Parkinson’s disease with people suffering from encephalitis lethargica whom we saw in the movie “Awekenings”. Both of them experienced the miracle of L-dopa therapy and unfortunately both of them had to lose hope for a perfect cure. The could enjoy efectiveness of L-dopa only for a “honeymoon period” and nextbearsuffer disabling motor side effects.
The most surprising part of book is discription of a dancer with Parkinson’s disease who know how to “trick” her body and brain and even teach others how to deal withdon’tnot working basal ganglia. I think it gives all people with Parkinon’s a lot of optimism and hope for better future.-
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She explained that most of her tricks depend on music. She thinks about moves as dancer’s or fashion model’s moves. She uses other parts of her brain to pull off consciously what a healthy basal ganglia accomplished subconsciously. She have to put more effort to move than people with good-working basal ganglia.
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She could control her body so well she could even bypass the automation of her actions that her basal ganglia could no longer provide using techniques such as mimicking other peoples movement or breaking the process of movement into smaller parts. And all thank to her years of dance training. Truly remarkable skill, I guess we could even call her a Dancing Quinn
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Her advise was walking sideways similar to how penguins walk and then slowly making it back to normal walking
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‘Brain Storms’ by Jon Palfreman is an interesting book which touches the topic of Parkinson’s disease. It gives us a little insight on what the disease was called formerly and why James Parkinson and his essay were so important for future scientific research. We can learn from the book that PD symptoms can range from mild to very severe, when the patient is no longer able to move properly and becomes immobile. I personally didn’t know there are so many various symptoms, like micrographia, and that there is no one specific clinical picture of the disease — for example, some patients may have tremor, others may not.
PD is still a disease there’s much to learn and find out about. It can be disabling and terrifying for how one’s health and mobility can decline, once they contract Parkinson’s. The disease inevitably leads to death because we still haven’t got a proper cure for it. Nevertheless, there’s a big ray of hope for those with PD — medicines like L-dopa can prolong their lives by even decades, and these years can still be very satisfying and fulfilling. What’s more, scientists found out about a chemical called MPTP which can be used on animals for further research. Having an animal model for Parkinson’s, we can learn about the disease, its probable causes and ways to treat it.
The book by Jon Palfreman was a very inspiring, very interesting reading and it made me realise how difficult life with Parkinson’s disease can get, but it also made me hopeful.-
Hello Wiktoria, I myself was surprised that people with advanced symptoms of P.D., who had mobility, postural and other issues are able to gracefully ice skate or ride a bike. Is there any explanation for that?
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Yes, I found it really fascinating myself, too! This phenomenon is sometimes called kinesia paradoxica. Parkies experience this when they are able to do some things, to function normally in certain situations and under other circumstances they are not. For example, they may have trouble walking, but they can ice skate or ride a bike, as you mentioned. There are several concepts why it is possible — some say it may be because one activity is neurologically simpler than another, others may say that some automatic motor programs get activated in specific situations by some external triggers, like visual cues.
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But on the other hand, when you’re performing a motor activity, like walking or riding a bike, you rely most of the time on visual cues, though not only. Let’s take Pamela Quinn, for example. She relied heavily on auditory cues to fit her stride.
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That’s true — there can be a lot of cues and tips on how to move properly and have yourself decide what your next move is going to be. Pamela Quinn listed five things that helped her and, besides visual and auditory cues you mentioned, there were imagery — knowing what you want to do and how to achieve that, heightened body awareness and conscious movement. But she emphasized the role of music and rhythm which are really important while walking, because you can synchronize your walking with the beat of a certain song.
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Hi everybody! I hope you stay healthy and have good time at home 🙂
To be honest what to write here, so maybe I will just share what I have in my mind after reading these 4 chapters.
All kinds of disease, starting from flu, can be frigtening when you don’t have any knowleadge about medicine, your body (for instance: how it reacts to certain drugs), about biology and things like that. When you direct your life energy into sharing panic instead of getting some knowleadge about your case – it will lead you to a worse condition you are know. I appreciated Palfreman’s desire of reliable informations. Of course, he is a journalists, but still this case was very personal for him.
Pamela Quinn’s way of coping with Parkinson’s I assume very noteworthy. She knows her body very well and this formed her way of some kind “healing” herself, at least stoppingtheprogressingprogressive disease.
The more knowleadge about yourself you have, about your case, the more you want to broaden your mind, the less panicky you will be. As it is right now with the coronavirus. Each time somebody starts to share their enormously exaggerated worries with me I show them YouTube films with the latest researchesabout COVID. When you let yourself be swallowed by worries, you can’t think rationally and progress in the process of healing (body or mind).-
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Hi 🙂 I agree with you. Panic is not the best way to deal with problems but sometimes it’s really hard to do not. Especially right now when we should stay at home. Do you know more techniques to deal with the fear that we could use at home?
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Susanna, it is true that people with Parkinson’s are in a better position than e.g. suffering from cancer, becouse Parkies can live really long life. However that disease is still
full of misteriousmysterious so I am not astonished that they are scared.
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Although i knew a lot of basics when it comes to how the PD affects peoples lives i still enjoyed this few chapters. Even though the parts about how the disease was discovered and how ‘the cure’ was being searched for were important, it was highly interesting reading about all the placebo effects. I found this part way more engaging. It’s quite amazing how much PD patients could do when they thought they were given the medicine. The same goes with the story about Pamela Quinn, whose dancer background helped with coping with the disease. Reading this bit reminded me of Ozzy Osbourne, a singer
whichwho I really like, who’s recently admitted that he’s suffering from PD. He still tries to perform, it’s his life. It made me understand more howishe is able to “fight” his problems and how it also depends on our mindset on the matter.
Beside that, I found the part about the ‘frozen addicts’ very informative too. I have never heard about it but I am glad these patients were fully examined which lead to so many new informationsabout PD, such as the importance of the basal ganglia.
All in all, even if we know that this disease is fatal, I like to hold onto the words said by many patients in the book – that you can still live a very long time. I hope more studies are being developed right now and soon we will find out much more about PD. I guess reading the whole book would be a good idea too.-
Hi Julka, I have to agree with you when it comes to the placebo effects and the paradoxes of PD being one of the most interesting parts of the book. I couldn’t comprehend how such things are even possible!
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Yes, this is amazing and really important. Especially now in my opinion a lot of people think their health depends only on the medication they take and that it solves all their problems. When in reality, they could overcome a lot of them just changing the mindset.
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I think those 4 chapters were very intresting. Palfreman has a realy nice way of writing. He makes it easy to read about such complicated subject. I think it’s amazing that after getting diagnosed with Parkinson’s disease he decided to write a book it. It’s so much better reading about his experience too rather than just dry facts.
Althought the facts presented in those 4 chapters were very intresting too. I wouldn’t thought that the disease was discovered after observing just a few people. I found the chapter called “The case of the frozen addicts” the most intresing and perhaps the most saddening. It was shocking how lives of those people were basicaly ruined beacause of a bad decision. On the other hand, it helped in countinuing important research. The last chapter made me fell more hopeful because I’ve never heard about those methods (like following different cues to move better) of helping people with Parkinson’s disease. Pamela Quinn seems like an amazing person.
All in all, Brain Storms is a great book and I actually wish I had more free time to read more of it.-
Hi Iza. What was the ‘bad decision’ people mentioned in the third chapter made?
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Hi, they all took drugs thinking it was heroine while in reality it was a designer drug synthesized from chemicals in a laboratory. It gave them all Parkinson-like symptoms.
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Hello Iza, I think you may find this video interesting as well.
Indeed, Parkinson made his observations on the basis of only 6 people, but Charcot did reserch on hundreds of patients (it was him who relabelled the disease “Parkinson’s disease”).
Can you compare the post-encephalitic patients from “Awakenings” with patients suffering from P.D.?-
As Dr Sayer said, patients in “Awakenings” seemed to be suffering from Parkindon-like symptoms but much stronger. For example people with Parkinson’s disease have trouble with movements that should be partialy automatic like walking but the post-encephalitic patients couldn’t move at all without “borrowing somebody’s will”. And of course in both cases L-Dopa could be used to help them at least for some time. Both groups experienced it’s side effects too. Also, people suffring from P.D. can often live for many years and function in society but the post-encephalitic patients couldn’t do anything without somebody else’s help so they were in a worse situation in my opinion.
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I agree, the patients who contraced encelopathy lethargica were in a much worse situation. Not only because they had been catatonic for years/decades but also because L-Dopa produced in them a short-duration response compared to most people with P.D.
Have you known that Robin Williams suffered from this disease as well?-
Yes, I knew about it but I only heard about it some time ago.
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Hi everybody! For me, Brain storms was a difficult book to read, not only because of the more scientific language and chapters filled with historical facts about the disease, but also because it made me sad that even now there still is no “cure” for Parkinson’s disease. Of course there is L-dopa and dopamine agonists, but as the author said “patients are reclutant to use it”, because of the side effects.
But the thing that shocked me the most are the paradoxes of Parkinson’s disease, for example that drawing a line on the ground can interrupt “gait freezing” or that people too disabled to walk can still ice-skate, ride a bike! It truly made me wonder about the abilities of the human brain.-
Hi Kinga, do you have any explanation for why people with the more advanced stage of P.D. have gait issues but can ride a bike like a healthy person?
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Hello. This phenomenon is called kinesia paradoxica and can be induced by visual or auditory cues – for example drawing a line on the ground, or like in the movie “Awakenings” drawing a checkered pattern on the floor.
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Hey, you mentioned the difficulty in reading “Brain Storms”. I had similar feelings about the scientific language. It was a real challenge but I think these four chapters are really interesting. Personally, I’m interested in biology, so especially fragments about the physiological aspects of the Parkinson’s disease were absorbing for me.
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Oh I think that the way the book is written engages the reader. I mean, the reader receives the book more personally because the author tells his own story from his own perspective, and this engages the recipient emotionally.The reader becomes attached to the narrator, wonders what he felt when he went through the struggle with Parkinson’s disease.
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Hi everyone! In my opinion, the biggest advantage of that book is a double perspective, the journalist and the patient at the same time. Thanks to that, a reader can find out lots of substantive information but also get familiar with emotions that are experienced during life with P.D. John Palfreman, in a chronological way, explains the history of scientists who were connected with P.D, writes about treatment methods, possible pathomechanisms, and breakthroughs. The case of drug addicts and MPTP substance was very valuable for research development.
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Hi Weronika! I found your observations really interesting. I see that you focused your attention on Jon Palfreman. You noticed his „double nature” – not only was he a person who was diagnosed with Parkinson’s disease but also he was a journalist. I wonder – what do you think about L-dopa therapy and Palfreman’s comment that perhaps „you trade a better „now” for a worse „later””?
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Unfortunately, there’s no cure for Parkinson’s disease. Thanks to L-dopa, patients can wake up in the morning and live a normal life but this medicine is not working forever. After the ‘honeymoon period’, side effects (like dyskinesia, hallucinations, agitation, paranoia, confusion) appear. It’s a tough choice and kind of tragic decision to make for Parkies.
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It’s hard to decide who was the most important figure in the history of Parkinson’s disease. My first thought was James Parkinson. This careful observer identified the problem during his walks around London, encourage passers with movement problems to join his studies and in 1817, as a first man, described ‘shaking palsy’ in his book. But it was Jean-Martin Charcot, who made a more complete description (he added micrographia, hypomimia), named the syndrome ‘Parkinson’s disease’ and started treating symptoms like tremors. Blocq and Marinesco, Charcot’s students, connected substantia nigra with P.D., which was a very important discovery. Then Carlsson appreciated the role of the dopamine and conducted experiments on animals. All these achievements were needed to understand P.D. better. I hope that the most important figure will be the scientist who will discover an effective way to defeat this disease.
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A very good response. The major figure is yet to come 🙂
Do you see yourself as a professional who helps people with P.D.?-
Actually, I have some experience with Parkies but not exactly from the neuroscientific/ medicine side. I used to meet with them to make a research about their mental dictionary and general problems with speech (results are in process). Working with them is a pleasure because they are usually motivated and aware of their problems. But there is still not much scientific literature about language and speech in P.D., so creating new speech therapy programs is challenging. I think that I would like to work with Parkies in the future, but only in this language area.
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A mental dictionary is a psycholinguistic construct that is supposed to answer the question how words are activated or stored by each speaker. It develops when we learn new words and changes when we suffer from, e.g. Alzheimer’s disease (problems with recalling, retrieving words). This construct is connected with memory, attention, e.c. My research is about evoking associations to given words. For example, I ask my patient to find as many associations to the word ‘doctor’ as he/she can. The control (healthy) group usually name lots of comprehensive words (hospital, university, medicine, dr House…). Patients with P.D. can name
lessfewer words, usually connected only with their personal experiences (eg. ‘my friend was a doctor, he had gray hair, he died last year’). So, their mental dictionary is probably affected by their illness.
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Hi Weronika, I totally agree — the double perspective on the subject was really insightful and probably it helped Palfreman write the book because he knew what he was writing about. What did you like more — the history of the scientific research on PD and all the neurological stuff or the more practical parts where you could learn about Parkies’ lives and how you can cope when you contract PD, like Pam Quinn’s tips?
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Thanks for the question. 🙂 The part I liked most was the practical one because it shows the real P.D. impact on people and their every day functioning. Last summer, I have spent two weeks with Parkies (as a speech therapist) and have noticed, that they use some tips mentioned by Pam Quinn. For example, they find it helpful to sing(or listen to music) when they need to cover a distance from point A to B. The rhythm is an important part of their rehabilitation, which helps them speak and walk. What’s more, they really can dance or ride a bike, even if they spend almost all day in a wheelchair. They have used to organized dance or karaoke parties almost every evening and they seem like totally healthy people.
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Wow, that sounds amazing and incredibly interesting! I bet it must’ve been really inspiring to see how they cope with the disease, it probably gave you more insight on the subject than just reading about PD in some book. Did you enjoy the time spent with Parkies?
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Yes, that was an incredible experience. Parkies don’t talk about their disease and don’t like to be called ‘patients’. Every day is treated by them as a gift and battlefield at the same time. They participate in such activities like boxing, tango, choir or aerobics, but they have moments of doubts, too. Some of them suffer from depression, others have problems with eating (swallowing difficulties) or sleeping (insomnia). P.D. is a large range of symptoms and they have to struggle with them constantly.
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While reading this book the first thing I thought was “How glad I am that no one of my family has Parkinson’s disease”. The vision of losing control of my body, sometimes in really young age (like Ben Petrick – very talented baseball player who found your illness at 22) scares me the most. However, page after page I started to consider that issue in scientific view and realize how facinating disease it is. After all this years we still do not know about it everything, we still do not find a cure which do not causes that stronge side effects like L-dopa. I did a little reaserch in that topic and I found information about medical marijuana, which apparently can help confront with parkinsonism. As far as I know, unfortunatelly, that idea do knot have support in research yet and that single cases disappearance of symptoms may be just examples of placebo effect. If you interested I send a link
Nonetheless the most interesting issue in Parkinson’s is symptom called kinesia paradoxica. I found it hard to understand that, for ecxample, even if you can not walk you can easily ride a bike!-
It’s so good that no one in your family has P.D. But surely you must know someone with the disease?
You’ve mentioned a young person who contracted it. What about Micheal J.Fox? Does his name ring a bell?
Isn’t it another paradox that Robin Williams who played dr Sayer, based on the character of O.Sacks) in “Awakenings” who administered L-Dopa to his catatonic patients (with symptoms similar to P.D.), suffered from Parkinson’s as well? Unlike Palfreman, unfortunately, he couldn’t come to terms with his condition. -
Hi Sylwia, thanks for the link! 🙂
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When I started to think about people with Parkinson’s in my life the first person which come to my mind is Jan Paweł II. When I was little girl, I remember watching him in TV and seeing his tremor and whole parkinsons’ condition was really scary to me.
I never heard of J.Fox 🙁 And that’s true Robin Williams suffered from Parkinson’s, which is kind of ironic. I know that he had met Oliver Sacks when he practised your role. It is sad that this relationship did not make Williams strong enough for struggling with his disease.-
If you’d like to find out more about M.J.Fox, I recommend one of his pre-Parkinson movies “Back to the Future”. I think you’ll find it very entertining 🙂
When he hadn’t contracted the disease yet, he looked much younger for his age. So even when he was in his late 20s he played the characters of teenagers. Even now, I think he looks younger than he is.-
Thank you so much for movie, it seems to be interesting!
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Brain Storms” is quite insightful and deeply informative book, which gave me a lot to think about. The book focused not only on scientific aspects of the Parkinson’s disease (as it was filled with content that showed how the first cases of patients were discovered; how Parkinson describe the new disease in An Essay on the Shaking Palsy and the importance of this essay; the work of Charcot and his students; the research and attempts to invent/find a cure), but also on people. Even though I’m not really interested in biology and neuroscience, I found the chapters and the history of the disease really intriguing. Reading about L-dopa therapy and the study on the case of the frozen addicts was interesting as I turned out to be a curious reader. But the most gripping part of it (at least for me) was the stories of people – Parkies, as they call themselves. I was captivated by their bravery. The paragraph in which there is described a meeting of one of the support groups was thought-proving. Them sharing their concerns with each other and giving advice… I especially remember the words of the woman who said that she learned how to appreciate her life and her friends after she got Parkinson’s. The incredible positivity and faith that they all are there for a long time – that was heart touching.
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Hi Weronika! Did you find any person (scientist or patient) the most inspiring? Maybe it was James Parkinson (the author of An Essays on the Shaking Palsy), Charcot (who was such a medical celebrity at his times) or Pamela Quinn (who learned to control her body and displayed no sign of tremor or dyskinesia)?
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I felt strongly inspired by the Pamela Quinn. For a dancer – somebody whose career and whole life is determined by the ability to control every aspect of the body movement – the diagnose with Parkinson’s disease must have been shattering. But she did not give up – she decided to use her knowledge to help herself and others. And that was something marvelous.
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Hi Weronika 🙂 I have a different question. If you had P.D would you like to go to support-group like that? Do you think this could be helpful for you?
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What I found really stunning about this few chapters is the fact, that they were written by a science journalist who is a Park himself. Accompanying him on his efforts to thoroughly investigate what is the status of research and drug development in the fight to eventually eliminate Parkinson’s is very emotional and fascinating. It reminds me about the case presented in the book „The Man Who Couldn’t Stop”, because it shows not only some scientific facts but also personal point of view. It was compelling to read about the history of Parkinson’s disease. To be honest I have never heard about Jean-Martin Charcot, the man who gave this disease a widespread recognition, before! Reading about some historical methods of therapy, which might be considered ridiculous these days, really made me laugh (vibrating helmet is my favorite one!).
Oh, and when it comes to medical aspects of the disease, it was really devastating to read about those side effects of medications which can be more troublesome than the disease.
But it also reminded me about the DBS, which was showed us on neuroscience lecture and is an, as I heard, is an alternative method of PD’s treatment. -
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Yeah, sure! I might as well send a very helpful video link, maybe it would be better to visualize the whole procedure: https://www.youtube.com/watch?v=2wvj7XJrQW4 🙂
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At the end we can also see some astonishing effects of this kind of treatment.
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Indeed. Martina, could you compare the post-encephalitic patients from “Awakenings” with people with P.D.?
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Post-enecphalitic patients suffered from Parkinsonian syndrome with catatonia-like stupor, they limbs became weak and numb, they also had limited facial expression, but it was a viral illness. I think that some symptoms were very similar, but the cause is different.
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When I was younger, I had no idea that Parkinson’s disease is such a complex problem, not only for the patients, but also for the researchers. I find this topic very important to talk about publicly because I’m sure that many people might have false beliefs about this disease. I believe that it would help the Parkies feel more comfortable and accepted by society. That’s what bothers the author – he wanted to be treated like a healthy person. He even said: „While I had told all of my friends and family that I had Parkinson’s, I hadn’t told everyone. When I interviewed Parkinson’s researchers on the phone, I presented myself as a journalist and didn’t mention that I was also a patient. My rationale for doing this was that I wanted the honest truth; I didn’t want anyone holding back vital information for fear of disappointing or demoralizing me.”
It’s sad knowing how difficult it is for such people to reconcile themselves with slowly losing their motor skills. Also not many people realise the additional dilemma Parkies have to struggle with – chosing whether they want to take medication that makes them perform better but brings side effects or just let the disorder progress slowly. I can’t imagine what would I do in their position. -
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This book was a pretty good read I could tell that the author is truly motivated to get to the bottom of this considering he suffers from Parlinsons as well. I’m curious about how the search for the cure will develop but I’m even more curious about what happened to those unlucky monkeys who basically got infected with PD for research. Hope they got their share of L-dopa afterwards!
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It is truly tragic that scientists have to do the procedures on animals. I, too, find myself feeling sorry for them and wishing there was an another way of searching for a cure.
Do you think that testing such drugs on animals is ethical, because it benefits the patients in the long run? Or do you feel like it should be illegal?-
No, it’s definitely worth it to save human lives. Maybe in the future there will be better ways to do it but for now… sorry, monkeys.
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There are different ways to test drugs and there are possible to be in common use in near future, because the will probably be cheaper, faster and more relevant to human, for example in vitro testing or computer modeling.
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Thank you so much for the link, I’ve heard a bit about the in vitro testing, but haven’t had the chance to properly research it.
If those options are available, why do you think majority of people don’t know about them? -
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Parkinson’s disease it’ pretty hard topic for me, because my grandmas’ sister had it, and it had great impact on her life, behavior and general comfort of her and her relatives‘ lives
living. I’ve seen heratin her last days, when her symptoms were tragic and her disease was at its worst. I know how cruel PD is.
As it was mantioned before it’s truly sad that this disease is not curable. It’s also sad that all testing procedures are led on animals. I don’t think it should be legal, there must be some kind of alternative.
I am full of admiration for the author who himself suffers from this disease and is very determinedin deepeningto deepen his knowledge about it and research new drugs.-
Hi, Ola, in the message above, Eliza shared a link to the available methods of testing drugs without harming animals. You should definitely check it out if you’re interested!
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Thanks I’ll check it out 🙂
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I found the book to be very informative for me. To be honest, I only knew very basic information about PD before reading the chapters so I got to learn a lot about its history, symptoms (in more detail than I knew before), what we actually know about it today and what needs to be researched more. I really liked the way the author described the neurological side of it as it was very easy to understand even for people with little knowledge about how our brains work. What I found particularly devastating was “The Case of the Frozen Addicts”. They didn’t get the disease gradually but became completely immobile in a very short span of time, which must’ve been very scary for them. I cannot imagine how terrible it must be to suddenly lose control of your body. On the other hand, the story of Pamela Quinn was hopeful and inspiring. Dancing was a part of my life as well so I got especially curious about her methods of dealing with mobility issues. I did a little research, and found a short video about her classes if anyone is interested 🙂
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Thank you for the video! Now we can see for ourselves what the lessons look like. Do you see yourself as a person working with people suffering from P.D. in the future?
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I don’t have a concrete plan yet so I’m definitely open to it! Especially those movement lessons would be interesting.
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I don’t know any person suffering from Parkinson’s disease in person, but I found this few chapters of „Brain Storms” really significant. It gave me a lot of scientific information about the disease and its history and help to understand it more.
What I find the most important though, it’s the fact that even when we know precisely what causes the disease and despite years of research we can’t cure it. Using L-dopa is helping patients, but simultaneously leading them to a „worse tomorrow”. But even despite its disadvantages and side effects, treatment for Parkinson is a chance for a better life for patients. And it’s a chance that most of the neurological patients don’t have because there is no existing treatment.
I think there is one more lesson for me after reading this chapters – how important the way we treat our body is. The dancer could manage the disease because she had connection between her mind and body. And it is small changes in our body that may suggest serious disease – for example not moving arms while walking like in case of Jon Palferman’s.-
Human brain is a mystery. Scientists know very little about it. It’s hard to believe that not so long ago they thought dopamine was of a minor importance. It’s also amazing that we can fool our brains with some tricks to manage P.D.’s symptoms. Are you encouraged to read the whole book?
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Yes, I think whole book would be very educational and I’m willing to read it.
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The book “Brain storms” was difficult to read for me. I enjoyed the parts where author talked about his experiences with the disease: taking part in Parkinson’s world summit of sorts, attending support groups, accepting Parkinson as a part of his life- the “psychological” aspects of the story. The medical terms, descriptions of medications and treatments were sometimes too difficult for me too understand. Overall, i think that the book was incredibly informative and well written, even if understanding it wasn’t that easy for me.
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How about the compensatory skills used to deal with P.D.? Did you find them interesting? I’m talking about the skills that can fool your brain, like walking to the rhythm of a song, or shifting your weight sideways to stop freezing.
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Yes, i was impressed how well Pamela Quinn was dealing with her illness. She did’t give in to the disease, she found a lot of ways to fight it, like the ones you mentioned but also copying the way people around her moved or learning to walk with feet first instead of torso- like a fashion model.
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Hi Renata! I would like to take part in that kind of event. If I was suffering from a disease I think it would help me a lot to see so many people like me and hear about all those new medications and treatments. It’s important not to lose hope during difficult times in life, and that summit was the perfect way to restore hope.
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To be honest, neurological problems aren’t my favourite things to read about. Still, I think a few fragments of this book were really intresting.
For example, I was moved by the idea that Parkies are identifyig themselves by using the time since they have been diagnosed. It’s like they are having two versions of themselves: first, healhty and no longer existing, and the second one. Completely new one. That’s just scary for me.
My favourite part was about Pam. Description of her and her ideas was gorgeous. It’s simply beautiful, how she could work really hard with sickness, to make not only her world, but also others, better. I know that looking for a cure is very important. Maybe the most. But! There are really many of people with Parkinson’s disease, who are struggling every day. So I think it’s also important to help them right now, not only in the future. And it can be done with Pam’s practical “tricks”, which really can work. Pam is giving them an example of how it’s still possible to live normally with Parkinson.-
Hi Monica! Do you remeber exactly what “tricks” helped Pamela Quinn manage her Parkinson’s?
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As far as I remember, they key was that people with Parkinson’s disease have to tell their bodies what to do. It’s no longer obvious to them that, for example, it’s natural to swing hands while walking. Her tricks mainly depends on music, and doing everything in the rhytm of favourite songs.
So, as I said before, the most important thing was that their movement should be conscious. 🙂
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Since I was a child I’ve been interested in neurology but I’ve never got interested in Parkinson’s Disease. These 4 chapters of ‘Brain Storms’ showed me that this malady is incredibly intriguing. Especially kinesia paradoxica. It seems unbelievable that a man who hardy walks can ride a bike just like any healthy person. Bloom explained it by saying: “People with Parkinson’s are able to produce movement where automacity has not been lost”. He tells also that cycling may be simpler task because of perfect synchronization of two legs. In my opinion it is more complex than that. Anyway the most fascinating part of the text for me was about Pamela Quinn – the dancer who explained that you can trick your body with some music and training. I think I should learn this tricks to take control of my tremors too.
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Thank you for the discussion. If you’d like to contribute (more) to it, please do. I will send Wiktoria and Kinga a schedule for the next week. We will discuss a new topic next Monday at 11 o’clock.
This time the session will be organised a bit differently. We will discuss a movie (I haven’t decided which one yet) in two groups, just like in our regular offline 🙂 classes. I will need two moderators, so if anyone wishes to be one, let me know. Don’t forget about your presentations – you can submit them this Sunday at the latest. Don’t forget about the mock exam either – it will be available until the end of March. Next week, I will upload a test on addiction. You will all take it at the same time. I will send you more info about it in the coming days. -
These few chapters of the book “Brain Storms” actually showed me how
lesslittle I know about Parkinson’s disease. I’ve always thought it’s mostly a shaking body. Now I know how important it is to make society aware of this disease. It was said in chapter 2 that people can look at a person with PD, judge her and even call her an alcoholic simply because they don’t know that it’s a sickness.
It’s sad that there is no cure for PD but there is still hope in people like Pamela Quinn. She can be a role model for everyone suffering from PD. She shows that you can always try to overcome appearing obstacles with your mind. It can help at least to adust to the condition.
I also think that the issue of the functioning brain hidden in a ‘frozen’ body is interesting and worth finding more information about it. -
I read the required 4 chapters yesterday and today so the text is fresh to me. I find the lecture very interesting which was surprising to me. I am not keen on neuroscience and yet I learnt many interesting facts about Parkinsosn’s disease, such as a micrographia (shrinking writing), or the fact that people who smoke, suffer less frequently from the PD. MY favourite character of all was Pamela Quinn. The way she coped with the problems accompanying PD, and the ease to provide the techniques to others was very impressive.
In conclusion, I was surprised that I actually had a great time readingthat couplethese couple of chapters of the book and I learnt something interesting from it.Filip Sikora
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‘Brain storm’ was a very interesting read (even though all the medical terms made it quite difficult) and after watching ‘Awakenings’ I feel like I understand the illness significantly better than earlier. I even remembered how, as a teenager, I used to think that the main difficulty coming with the disease was shaking hands and now I realize how extremely wrong I was.
Being able to think, comprehend and understand everything happening around us, but not being able to move and control our bodies the way we want to seems absolutely terrifying, therefore reading about it from a perspective of a person who suffers from Parkinson’s disease was truly eye-opening.
I definitely agree with others mentioning Pamela’s story as one of the most interesting parts. As the dancer said herself, her whole career was based on ability to perfectly control her body, so finding out that from now on, simple tasks might become a challenge, must have been tough. Her willingness to fight with the illness and her dedication are very admirable. Coming up with all these little ‘tricks’ must have taken a lot of time and energy, so the fact that she decided to share them with others and teach them how to overcome some difficulties is even more beautiful. -
Hello! 🙂 Reading the book „Brain storms” was highly interesting, but at the same time awfully bitter. The thought of anyone suffering from a Parkinson disease makes me really sad. I felt compassion to the patients mentioned in the book by Jon Palferman because I can’t imagine being bedridden and not self-reliant. Although the more I was reading the better I understood this disease. I learned that it was better or worse known for a two hundred years now. Fact that at the beginning of seeking for a best cure or treatment, one of the options was a “shaking chair” and portable shaking helmet, was a surprise for me. I also didn’t know how important structure of brain is substantia nigra and it’s role in reward and movement. Story of six young substance abusers was terribly sad. I think about how one single mistake can make someone’s life so more stressing and harder. On the other hand, the description of Pam Quinn “tricking” her body was very inspiring. She overcame her sadness and – using years of experience – thought of a way to not give up on her passion. I didn’t know how important are visual and auditory cues to such simple actions as walking for example. But it’s understandable – healthy basal ganglia is working subconsciously. In a nutshell: reading this book reminded me how complicated and maybe still uncomprehended is human brain.
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I think its is very important that there is some kind of society of people with Parkinson’s disease. I’m so glad that for at least some of them their illness is not anymore a reason to be ashamed but to have sense of community – I am thinking about Parkinson’s world summit of sorts. It is meaningful that this event is not only for scientists but for patients as well. More and more diseases are perceived like that – like it they are part of someone’s life but not his weakness. History about using L-dopa was fastinating, especially because of mentioning Oliver Sack’s patients treatment.
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Brain Storms’ by Jon Palfreman was really interesting book. This literaly change my perspective of being ill. Of course is bad for you, especially with such problematic disease as Parkinson’s one, but maybe,just maybe, your illness may give hope or even cure to thousands of people in the Future. When i was reading about that disease i was even curious for a second – “what if i could have this disease”. Then i asked myself further – “what if i could have been the patient zero, the first one officially diagnosed. Of course – especially now, with covid-19 everywhere around us – no one should think about being ill. This book even detailes how intimidate this disease really is. And even then i wonder, what person with so little control of their very own body ( without L-dopa of course) may think or feel. Maybe this is my confusing logic to argue about how strong impact those chapters have of my analitycal thinking. I am gonna definitely read rest of the book immdiately.
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Hi everybody! Sorry for a delay! I think you guys have already told everything!
I found part about the case of the frozen addicts very interesting. Dr. Langston determined that his patient and five others had all used the same tainted batch of synthetic heroin, inadvertently laced with a toxin (called MPTP) that had destroyed an area of their brains essential to normal movement. This same area, the substantia nigra, slowly deteriorates in Parkinson’s disease. Later the MPTP has been used to study disease models in various animal studies.-
I’d like to add that the history of the frozen addicts strengthened me in belief how important is harm reduction (set of practical strategies and ideas aimed at reducing negative consequences associated with drug use). If mentioned in the book drug users had tested substance before injecting it, they wouldn’t have struck with the symptoms of Parkinson’s disease.
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I have a confession to make: I am in fact Daniel G.
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