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  1. Today
  2. Speech degradation post DBS can also happen gradually. At first, degradation may be so subtle and you may not even notice it. It takes about 5 years for speech to deteriorate completely and other DBS side effects to fully surface. So be careful about listening to people who just had DBS in the last couple of years. At that point, it's hard to tell if it is the DBS causing the side effects or disease progression. It's easy to blame it on disease progression than DBS and most DBS centers blame it on disease progression. That could be why DBS side effects get overlooked in studies
  3. Hi AndrewE, PD maybe an autoimmune disease,here is a newly found evidence via this link; https://www.newscientist.com/article/mg23431314-900-best-evidence-yet-that-parkinsons-could-be-autoimmune-disease
  4. Yesterday
  5. thank you for your response, I will check with my Dr. on this. thanks again...
  6. Have you talked about adding C/L or Amantadine with your doctor? Are you seeing a MDS? I am taking both of those I mentioned. I have a mixture of meds ans supplements that I use. I don't think there is any "average" in YOPD, but there is a limit to your med. I think it is 8mg, but I am not entirely sure. Amantadine helps with the dyskinesia and some shakiness.
  7. Thanks so much!
  8. I have been reading a lot lately about the human gut biome and how many autoimmune diseases actually start in the gut, particularly Hashimoto. Recently have been reading that this may be the case with PD. Definitely following this.
  9. Hello, This is my first post. I have enjoyed reading and educating myself on here. I was just diganosed in May 2017. I year ago I was diagnosed with Hypo Aldosertonism (rare Kydney disease). For the longest time, I blamed my symptoms on that but my levels were good. I was sent to a nuerologist and after several clinical test and an adnormal Dat scan I was diagnosed with YOPD at 43. I am on Ropinorole extended release, started me out with 2mg for a week, then 4 for a week, now 6 for this week. and 8mg next week. Is this an average dose? what should I expect? My symptoms are: extreme fatique, inconsistent tremor in right hand, slowness on right side, and I also shake upper body-(more on right side) when Yawning, I get extremely sore all over and especially in neck and back. I jerk and shake all night long about every 45 sec or so, resulting in no sleep. I guess what I am trying to ask is what do I look for? Medicene has helped sleep and shakiness some but still have symptoms come and go. Is all of this normal? thanks for you time...Stu
  10. I think there are at least 5 or 6. Call the front desk and ask - hopefully they still exist. Good luck.
  11. Interesting thought - PD being an autoimmune response. My DH has managed Birdshot Chorioretinitis (birdshot inflammation of the retina) for the last 10 years and this is a known autoimmune disease that happens to attack the retina. Our eye specialist is renown for her work with this disease and practices at Johns Hopkins where we are now also now "members" of the movement disorders specialty group. (we should qualify for "group discounts" - ha!). Neither specialist (Thorne the ophthalmologist, nor Mari, the MDS) suggested that either disease was related to the other, but it still makes us curious. Luckily the meds for each condition (so far) don't conflict with one another. Good luck with your journey. LHG
  12. Lonnise: Do you know whether there are a number of guest rooms here at Oak Crest?
  13. Lonnise: This idea has just been getting going since this morning, so we'd eventually find what dates and days of week would be best for everyone if it turns out there is enough interest That might mean a weekend, so if you found it one that would be available for you and Rob, maybe you could come... FYI, everyone else: Lonnise's mom lives a couple of floors down from me! Small world!
  14. It looks like Shepherd's Spring is very close to Martinsburg, which I hear has some interesting places. Both are in a beautiful area.
  15. Hi Linda: Beginning of September I'll be back in school and Rob at work, but we'll be with you in spirit. I think gathering at Oak Crest would be terrific. All the amenities you have - including pools, puzzle tables, libraries, and all those you mentioned. Also, the center has "one-room" rentals you could book if you know the date and need in advance. I've done that when we've gathered at Mom's but overflowed her apartment's accommodations. Have a great gathering and maybe next year Rob and I can join you. Best. Lonnise
  16. Hi, swamper. Thanks very much for your suggestion. I will surely look it up.
  17. Hey, there, Lonnise! I was trying to find one of your prior-mails to me to find your e-mail address, but it took me a number of tries before I could remember how to spell your name. I had wanted to make sure you were aware of our planning to get together. And yes, Pappas Restaurant has wonderful food, and I had never noticed it has a fireplace. Probably because the restaurant is always so crowded. Btw, they are known for their crab cakes, but I wouldn't recommend them unless our blue crabs are in season.
  18. Best of luck David and thanks for having the courage and curiosity to do this. Spinal taps aren't "fun" but I'm sure they've progress in the last 35 years (that's the last time I had one). All the best. Lonnise
  19. Linda: Rob, Mom and I just had lunch at Papas restaurant not far from you at all. This isn't a resort, just a restaurant, but it has great food and a fireplace (but I'm sure the fireplace isn't running during summer). Don't know if that helps or not. Hope you are well. Best, Lonnise
  20. that would be right because it takes me about 20-25 minutes to get to Shrewsbury from my house
  21. Linda: I follow this thread, and wonder about Shepherd's Spring Conference Center near Sharpsburg? DH and I stayed there last June for a Road Scholar trip.. It was lovely.
  22. I'll do a search for a lodge or someplace else not too far away from me that has wood-burning fireplaces. A retreat center may be a good possibility.. In fact that may be the best place to have our get-together
  23. Shrewsbury is 20 minutes from Hunt Valley. .
  24. Re: the fireplace. Perhaps there is a restaurant somewhere that has a real one that we could sit in front of.
  25. Nice, Dianne!!!!!!!!! How very nice it would be to meet you in person.
  26. Sorry I guess I cross over just past shrewsbury, PA....I take 83 the whole way into MD. Takes me 40 minutes to get to Hunt Valley. That help LAD
  27. As long as I can put my Duopa in your refrigerator, Linda, I'm good to go. I forget; are we financing our travels with the Pancake and JB's Maple Syrup food truck? Dianne
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