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Benyamin

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Benyamin last won the day on December 3 2016

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About Benyamin

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    Advanced Member
  • Birthday 08/08/1984

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    Shanghai, China

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  1. https://tmrwedition.com/2017/04/30/a-journey-round-my-brain/
  2. I'm actually wondering if anyone has heard of any device that mimics Parkinson's tremors, allowing other people to experience what it is like to have Parkinson's tremors. Anyone hear of anything like that? I think it could be a great way to raise awareness.
  3. Put together a list of treatments that may be available in the future... https://tmrwedition.com/2017/03/23/the-future-of-parkinsons-disease-therapies/ Anybody know any I missed?
  4. Next stops, Washington D.C.(21st to 26th) and San Diego(26th to 1st), anyone around?
  5. Update: Had an awesome time in Austin with Tom and his fellow combatants at The Rock Steady Class. It was my first rock steady class and I was definitely impressed, if anybody has one close to them I would definitely encourage you to attend. From there I went to Vancouver and spent a full day at the Centre For Brain Health at UBC. I've visited a lot of different clinics but I think this one did the best job of ensuring the interdisciplinary approach that treatment of this disease requires. Next stop on the tour will likely be the Boston area towards the end of this month, if anyone is in the area and would like to meet up please let me know. Mihai, I may include a stop in Cleveland on this trip, I will be sure to let you know if I do. Sunbird, interesting finding, another thing to add to the ever-growing list of things I probably should be doing
  6. Sunbird, never really heard of that before, where can I learn more? Texas Tom, a Rocksteady class in Austin would be perfect!
  7. Greetings forum community, My name is Benjamin, I am an independent science and tech researcher as well as a Parkinson's disease patient advocate. I have recently been touring some of the top labs in the world looking into the latest developments in PD research among other things and writing about my experiences. I also try and meet with as many PD people as I can along the way. You can find my story here... https://tmrwedition.com/my-pd-journey/ I will be continuing my tour throughout 2017, I don't have a detailed schedule, I like to keep things loose, but I will post here as it comes and if anybody is in any of the places I will be going and would like to meet up I would be happy to see you. I'm based in Toronto but will be in Austin, Texas from the 26th to the 31st of January and Vancouver from the 31st to the 7th of February. If you prefer you can send me an email at benjaminstecher@gmail.com More places and dates to come Hope to hear from you soon, Take care, Ben
  8. Don't try to forget it, that's impossible, accept it for what it is and move on to the next thing.
  9. Thanks Linda, appreciate the support. Papa57, nutrition is definitely an important piece of the puzzle, unfortunately it is incredibly complex and not entirely well understood. I don't think anyone can say anything definitive about exactly what you should or should not eat but I think the best rule of thumb is keep a balanced diet and whenever possible stay away from processed foods, eat plenty fresh vegetables and limit sugar intake. Dan, agree with everything you said, focusing on what you can do and not what limits you seems to be key to getting over just about any of the difficulties life may throw at you.
  10. https://tmrwedition.com/my-pd-journey/
  11. There are all sorts of voice to text apps and tools, Google assistant is a big help. Of course it doesn't help with everything, particularly when you have to take hand written notes or type, but it definitely helps with text messaging, emails, and basically anything you use your phone for.
  12. Have you tried asmr? If not wait till you are tired, go to bed, get comfortable and go on youtube and type in asmr then scroll down until you find one that might suit you, could save you all the hassle of going to see a sleep MD. Here is one I would recommend... Seems a little strange at first but give it a few minutes and see if it helps.
  13. Hey piiinkrose, you can some genetic testing to find out if you have any of the known variants associated with PD. I also feel the need to copy a post I made in another thread here, Rarely does a week go by without someone bringing to my attention an article or a new study claiming some new link between X and PD. My takeaway is simple, medical science just hasn't progressed to the point where we can say anything definitive as to what causes PD. Don't listen to anybody who claims to know why you have it or how to cure it, science just isn't there yet, we've made great progress and there is a lot of reason to be hopeful, but we still have a long way to go.
  14. I believe that calling what we in the PD community have one disease is wrong. It is not one disease as no two people have it exactly the same way. As I'm sure you have seen, no two people have exactly the same symptoms and there are reasons for that. Each one of us has had different amounts of neurons die in different parts of the brain and because of that each of us will need a solution tailored specifically to each of us. Thankfully we are entering the age of personalized medicine where one day each of us will get personalized care, too bad drug companies are still too eager to find a one size fits all off-the-shelf solution. From what I can see that solution will be a combination of gene modification therapy, stem cell transplantation, some kind of alpha-synuclein disaggregator, enzyme replacement therapy and possibly neuromodulation through a variety of brain machine interfaces. Most of these therapies are still in their infancy but over time will prove effective.
  15. Rarely does a week go by without someone bringing to my attention an article or a new study claiming some new link between X and PD. My takeaway is simple, medical science just hasn't progressed to the point where we can say anything definitive in regards to many of the diseases society still faces, we've made great progress and there is a lot of reason to be hopeful, but we still have a long way to go. That said, even if it doesn't directly impact PD, there are enough reasons out there to take your gut microbiome seriously. Probiotics are a good start but more than anything just try to pay attention to how the various things you eat effect your energy levels, your PD symptoms, your overall mood, and yes your poop. Side note: I actually just returned from speaking with a prominent neurologist at Yale, he glibly told me he doesn't bother reading any science article with the words 'may', 'maybe', or 'might' in the headline because all it means is that whoever wrote it doesn't know themselves.