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Appala

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Everything posted by Appala

  1. Levodopa not really working

    Many people believe that Sinemet (C/L) stops tremor & other symptoms. That's only true for some people, not all. I had a terrible tremor & took C/L & it did not help my tremor & in fact did very little for me, except it sometimes gave me a bit more energy, better mood, helped with sleep. Unfortunately, It also gave me dystonia after only 1 year. I was diagnosed 2007 & was doing pretty well for several years, except for the big tremor. Finally had DBS 2 years ago, which totally took away the tremor. Unfortunately, it also gave me some serious speech & language problems as well as balance problems causing falls, and now I also have severe hip/back pain (not sure yet if mechanical or PD). However, the tremor is gone, so DBS was well worth it. I wouldn't worry about PD+ based on what you said. Talk to your MDS.
  2. Of course, I don't kknow if he has Parkinson's Disease or Parkinsonism, but I'd like to say, in hopes that it will provide some reassurance, that I have had Parkinson's (not Parkinsonism) for 10 years, but my very strong tremor never did respond well to Carbidopa/Levodopa. So I'm certainly glad that my MDS did not take that as a sign that I had Parkinsonism, which usually is scarier than PD. C/L seemed to help somewhat with other symptoms, like slowness, energy, & mood, but never did much for the tremor. A couple of years after diagnosis I started using a small dose, but within a year I developed dyskinesia/dystonia, and if I took a larger dose, I suffered bad dystonia which made my leg muscles curl up to the point that I could not walk. I had DBS a couple of years ago, which totally got rid of the tremor. Unfortunately, I'm starting to have other problems with DBS, but hope better programming will help. Good luck.
  3. DBS, Hip/leg Pain

    Dr. Okun, I had DBS (STN, bilateral, Vercise study) almost 2 years ago. No tremor since, which is a huge improvement because I had the worst tremor of anyone I know (and I know dozens of Parkies through my active PD groups). However, it has very negatively affected my previously very robust speech & language, and now I also have terrible walking problems due to excruciating pain in my hips & legs. Pain is chronic, a deep ache but sharper when weight bearing, and is always there to some extent, even when lying down. It seems to be in bone, joint, & muscle & is so bad I can barely walk, have to climb upstairs on all fours. Is it possible this is DBS related & might be improved with better programming, or is it more likely spinal stenosis sciatica related? I had stenosis surgery over 3 years ago, but the symptoms seem different. Is this just advancing PD (I was diagnosed 10 years ago), or can anything be done? I'm nearing despair as I am all but lame at this point & having difficulty keeping fit. Is this something that happens eventually with PD? Is that why we often end up in wheelchairs? Any advice much appreciated. Thank you.
  4. DBS Benefits & Un-Benefits

    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!
  5. DBS Benefits & Un-Benefits

    As the one who started this topic, I was interested to see that it's mostly evolved into a debate about whether & how much speech & language declines after DBS. Based on my own experience, readings, & observations, I'd say it is indeed a very common problem, and if you're considering DBS, it's best if you recognize this beforehand. My surgeon said adverse events of the surgery itself were thought to be low (under 5%--10%, which seems to be what RNwithPD refers to in one of his posts), but that no really reliable, well-researched, comprehensive stats were available. Stats about side-effects after the surgery are a different matter from stats about the surgery itself. Speech & language are addressed in the 2012 study that RNwithPD refers to above. It states under Highlights: Although 34% of the individuals whose speech was affected by DBS indicated that they experienced improvement in speech symptoms following DBS, 66% of the DBS participants perceive that their speech got worse due to DBS therapy. 50% of the participants whose speech got worse following DBS reported that the worsening of speech following DBS was unexpected. Of the participants whose speech improved following the adjustment to DBS settings, 20% reported that other symptoms got worse; thus, there was a trade off for some individuals. 94% of the participants indicated that they are satisfied with the outcome of their DBS therapy based on the symptom improvement received from DBS, even in the context of having some side effects. Despite speech disturbance following DBS, 97% of the participants reported that DBS has improved their overall quality of life... Speech difficulties that may ensue may manifest in isolated speech symptoms and functional communication deficits, thereby adversely impacting socialization and quality of life. This was what I said about my experience: speech unexpectedly worsened (and is getting worse as time goes on), and this has had a terrible effect on my social life, but I'm still glad I did it because overall my quality of life is better due to relief from horrible tremor & dystonia. But you should be aware: "66% of the DBS participants perceive that their speech got worse due to DBS therapy." Although my neurologist (like others in the PD field) likes to say that perhaps it was due to disease progression, I know it was not. I had no speech & language problems before DBS & suddenly big problems immediately after DBS. Again, I say: it's all a trade-off. Just go in with your eyes open.
  6. 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.
  7. 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)!
  8. RLS & Iron

    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.
  9. Advanced Parkinson's Meds Not Working?

    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.
  10. Swallowing Problems

    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.
  11. Swallowing Problems

    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?
  12. Swallowing Problems

    Thank you!
  13. Essential tremor and DBS

    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.
  14. Hyperactive after DBS

    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!
  15. Fixed Dystonia

    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).
  16. New Medtronics Web Site

    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.
  17. New Medtronics Web Site

    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
  18. 4-Year DBS Follow-up

    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.
  19. DBS Study Surgery

    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.
  20. Pain

    Pain, a topic I know too well. Once I read a doctor's article which said he has learned that if he sees a middle-aged female patient with otherwise unexplained persistent chronic shoulder pain on one side (describes me), she often turns up with PD diagnosis later on. I also read an article (a Sunnyvale PD CA doctor?) that said pain is definitely a little-recognized part of Parkinson's for many if not all patients. Yet my neurologists have told me it's unrelated & that (for example) the horrendous chronic pain under my right shoulder blade that went away as soon as I was diagnosed & put on Sinemet was unrelated, not PD, & just a coincidence that it went away. Bull. If docs & researchers listened more carefully to patients perhaps we'd make some progress.
  21. Pre PD Surgeries w/anesthesia ??

    I do believe there is a connection between surgery & PD, based on my own experience & that of friends with PD. The NPF "Aware in Care" kit is designed to minimize problems potentially caused by certain types of surgery meds, etc. Definitely worth checking out. Order the kit here: http://www.parkinson.org/find-help/aware-in-care-kit Some people think it's just stress of any kind, not specifically surgery, but even if true, surgery is an awful big stress in my book!
  22. You've helped me before with scheduling & optimizing my PD meds (thank you!), but my older sister was diagnosed a couple of years ago with PD as well. I'm hoping you might do the same for her. She's on the following meds and complains of chronic serious nausea, confusion, etc. Any comments greatly appreciated. Citalopram (2mg X 1/day), pravastatin (1/day), lodosyn (25 mg X 2 X 4/day), benztropine (1 mg X 3/day), sinemet (25/100 X 4/day) Another sister had a very bad time on statins (muscle problems, etc.) and was taken off them. Wondering if that's related?
  23. My DBS was done in 2 stages, first DBS surgery (Left side lead placement) was done in December, 2nd one 3 weeks ago, in January (Right side lead placement & device implantation). Just had my sutures removed today. First 24-48 hours after stimulation were amazing, tremor gone, great muscle control, almost like I had NO Parkinson's symptoms at all. Felt great for a while, but within 2-3 days all symptoms were back. Since then, I've been highly variable, with some symptoms better, some symptoms worse, some symptoms totally new, all symptoms changing day to day, usually less tremor than usual & unusual energy (almost a bit manic), better mood, but also mild nausea, dystonia, new dyskinesia, disturbed sleep patterns, dizzy, balance problems, walking is terrible. I'm worried that something is wrong. I don't feel like myself, and it is scary. Called my doctor, who doesn't seem concerned, says don't worry, wait until next scheduled visit on March 2nd. But it's very hard to wait in the face of such wildly changing & sometimes disturbing symptoms, including grave danger of falling. Is it normal for some people to go through this type of variation in symptoms until possible effects of surgery have resolved (brain swelling)? Or, is it something worse, possibly brain bleed or infection, or problems with lead placement? Any input much appreciated. I'm assuming if something needs attention, better now than later! I'm hoping you can relieve my worried mind. Thank you!
  24. Sister's Meds & Nausea

    Thank you, very helpful as usual. I've also read that Cogentin type meds aren't usually prescribed for older people due to the side effects, and since she is 80, what do you think?
  25. Surgery and PD

    Take a look at NPF's Aware in Care site! There's definitely a connection with surgery, GA, & worsening symptoms. No coincidence. http://www.awareincare.org/
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