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About Appala

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    SF Bay Area, California

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  1. I've been a member of this forum for a long time, but not usually a very active poster, esp. in recent years. But I've been thinking for a while that I should contribute what I have to say in hopes that it may be helpful to someone. I was diagnosed with PD in 2007, but believe I had some of the symptoms for many years before. My worst symptoms were a huge tremor & an unusual & painful dyskinesia that drew my right leg upwards, leg muscle spasms so bad that at times I could not walk nor stand for more than a few minutes. Sinemet never did much for me & caused muscle spasms/dyskinesia, even at very low doses, within a year or so of taking it. I had to use a walker, stopped driving, & withdrew from my usual local PD group activities & classes (a mistake, of course), because I felt I had to focus on figuring out what in the world to do about my situation. Over a year ago, I had bilateral STN DBS, in study for new Boston Scientific Vercise device, not Medtronic. Since then, I've had some very good moments, but also some very bad. We constantly struggle to get the device settings properly programmed, or maybe they actually are but the PD has just progressed, or maybe the surgery itself caused some problems. Would I do it again? Yes, because my extreme tremor & dyskinesia have both disappeared, and they really were intolerable. But the side effects are really bad, too: weight gain leading to serious diabetes problems, severe speech & language & swallowing problems, serious balance & walking problems, plus some possible cognitive effects, including word retrieval & fluency, all of which were excellent as tested before DBS. Negative effects on social functioning are very significant. From my experience, I would have to say that DBS can be wonderful, but at this point in its development (it may improve in future), you should only consider it once your symptoms have become so bad that you can no longer tolerate them. You must decide that possible DBS side effects will not be even worse. Unfortunately, it's often a trade-off, you may lose some old symptoms & gain some new ones. If you decide it's still worth it, pick a good experienced surgeon, make sure there are good experienced programmers readily available to you, and remember that DBS works best for certain symptoms & not much or not at all for others. And remember: Exercise! I'm doing Rock Steady Boxing, learning to jump rope, & planning to resume PD yoga & dance. Good luck to us all!
  2. Question: I've read that some studies suggest there is a connection between taking Valium (or Ativan & other benzos) and dementia. Valium has been prescribed for me in the past for anxiety, MRI claustrophobia, & for plane rides (flying phobia). Works well & in fact relieves PD symptoms. Do you know where the research on this stands? I don't want to do anything that increases risk for dementia (so far so good)!
  3. I had successful Vercise DBS last year (Boston Scientific study) no tremor or dyskinesia now, but still hoping programming may improve balance, speech, energy. I am on very low dose of C/L (only 2.5 pills daily). I have RLS & am wondering about the RLS & iron connection I've read about. Will it help to take Iron supplements, or will that change only blood levels not brain levels? May worsen PD? Any news to share on this front? Many thanks.
  4. Thank you Dr. Okun. That's what I thought. Sounds as if there are some confusing communication issues between her doctors & her family. Her daughter has since clarified: " Parkinson's issues are getting unbearable for her. O2 levels going down when she has attacks, nausea, sweating, confusion, very little sleep, pain. They are still going to treat the symptoms of Parkinson's. Her Parkinson's has progressed and meds are not working properly. It was made clear from the get go the meds can stop working." Actually, I think she is on too many meds (not all for PD) & they need to be reviewed for side effects & interactions.
  5. Dr. Okun, my older sister, age 81, has PD, like me. Today her daughter reported the following: "University of Kentucky, Lexington, Medical team has told momma her Parkinson's is progressing and her meds are not working ( Carbidopa-Levodopa ). The plan now is they are going give her meds to keep her comfortable. Humm not the news we real wanted to hear. " This has me really alarmed, both for her & for me. She's only been diagnosed for about 4 years (me for 10) and suffers neck pain, anxiety, insomnia, sleepwalking, digestive problems, cognitive issues, etc., & is on a lot of meds. What does UK's comment mean? Do Parkies reach a point where nothing more can be done, and am I headed that way in a few years? What can/should be done now? Thank you for any advice or help.
  6. I asked her daughter & she said "We had swallow test done twice. It seems to happen now when she is going thru a bad spell & she has to wait until meds work. They went in to widen the area down her throat." Any comment?
  7. Thank you!
  8. My older sister (age 80) has Parkinson's, as do I. She is starting to have serious problems with swallowing food and has lost a lot of weight. She says it's very scary when "the food doesn't want to go on down." Is this something she will just have to live with, or do you have any suggestions to improve? Many thanks.
  9. Lamppost. I've posted a few times on this forum & on Neurotalk about my DBS experiences. They would probably be useful for you to read. But as to your question: I'm retired & didn't have to face the issue of how long you'd need off work. But I would say it varies depending on the person, the type of surgery (awake or asleep), how many surgeries (can be 1, 2, or 3), whether there are any complications (infections, stroke, etc.), and how many sessions are needed to get you optimally programmed (hard to predict), and your type of work. In my case, I had 2 awake surgeries in December 2015 & January 2016, with the battery installed while asleep at end of 2nd surgery, had no complications, stayed in hospital overnight and felt physically fantastic & euphoric & like I was 20 again the next day, apparently due to effects of the surgery lesioning itself, not DBS, since I hadn't even been "turned on" (activated) yet. So in theory, one could go back to work soon, but programming may take you through many changes over several weeks or months, some not so good. Also, my surgeon told me to wait several weeks before doing anything strenuous, like exercise, lifting, etc., to allow healing & avoid brain bleeds & other complications. Just remember: Like PD, DBS experiences & outcomes are different for everyone. I'm very glad I did it, but it took awhile to program it correctly and still isn't perfect. Some things got better, some things got worse. But overall, definitely worth it for me. If you want to read my other DBS forum posts, let me know & I'll give you the links. Best of luck.
  10. Sounds like these are all good changes, esp. if your mother thinks things are fine. However, if she thinks the hyperactivity is a problem, or if others think she seems strange, you should report it to her DBS programmer and her doctor. Maybe the programmer can adjust the settings so she still has the improvements but without the extra hyperactivity. After my DBS last winter, one of the first programming sessions left me hyperactive & it was definitely a big problem that both I & others could see. My head & limbs darted around emphatically as if possessed & sometimes the movements were actually disorienting & dangerous. I looked & acted like a crazy woman on drugs. I reported it & at the next session he fixed the problem. Otherwise, if there's really no problem, just enjoy the wonderful new energy!
  11. Very interesting. Live & learn. I never heard before that different mutations affect DBS outcome. On my 23andMe report I had no LRRK risk but more of PARKIN, which taken together cancelled each other out & meant that I had no more total risk than average. I've had DBS with good response, very good for motor symptoms (still being programmed).
  12. Kim, thanks so much. On Friday he finally got in touch with his DBS surgeon (at my urging), who has already replied with some ideas on how to proceed, so things look more hopeful now. I'll send this info on to him as well and hopefully the problems will get resolved soon one way or another.
  13. Kim, as I recall, you offered to pass on DBS questions to your Medtronics rep or programmer? Where was that thread? I can't seem to find it now. I had DBS surgery a few months ago & am satisfied with the outcome, tho still working to fine-tune it. Unfortunately a friend had DBS a few weeks before me in the SF Bay Area and is having big problems that only started after the DBS: a "runaway" jerky left leg that is out of control & now seizure-like episodes. He says his programmer has said she can't do anything more for him. He has gotten quite desperate & needs help. Can you please pass this on to your Medtronics rep & see if he has any suggestions? How can my friend find a really expert programmer in SF Bay Area? Many thanks, Appala
  14. Dave, just curious about your post, since I'm in a 5-year study for the Boston Scientific DBS, which isn't available in the U.S. yet but is currently in the study phase here. So no one would have it here yet except people in the study, and the study provides all equipment free. So were these people who needed BS remote replacements from other countries, or their remotes were for other types of pacemakers, not DBS? Any idea how much they were charged? I'm pretty sure my Kaiser policy would cover most or all of replacement cost after study is over in 5 years, but wanted to check on this anyway. Thanks.
  15. I posted this on another forum (Neurotalk, Parkinson's section) & thought it might be good to post here as well. I just had DBS, done in 2 surgeries, one in Dec. & one in Jan. Both were "awake" surgeries, though you get some sedation type meds to help you through it, and you are put completely under briefly for the chest device implantation. Being awake for the drilling into the skull was the hardest for me (not painful, just LOUD), and having to wait in hospital bed for the surgical team to arrive while off meds, because I was extremely & uncomfortably wiggly (would have been fine if allowed to walk around while waiting). I did the neuro-psych testing a couple of weeks before that, no problem, kinda fun. Since I'm participating in a "blinded" study for a new device, the wait to know for sure that I've been turned on (maximally activated) & properly programmed has also been very difficult (a very slow anxious 12 weeks, still 4 more to go). But I did get a brief preview of the way things could be, possibly due to post-surgical brain swelling or a brief "honeymoon" effect, and it was unbelievably wonderful! Hope I can get back there soon. I should add that I was considered a very good candidate for DBS: tremor dominant, never responded well to PD meds, good cognition & neuro-psych test scores, few other symptoms, good health, age 70.