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About Appala

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  1. Tongue Biting After DBS

    Thank you, Oakman. Programming did eliminate my tremor, almost. No matter how we've tried to re-program since, I have very little tremor but huge problems with gait, balance, speech & language, choking, swallowing, ruined voice, etc. Tradeoffs are hard but my tremor, unlike yours, was very bad & I couldn't live with it. Good luck!
  2. Tongue Biting After DBS

    Yes. Awaiting response.
  3. Tongue Biting After DBS

    I posted this originally in the Open Forum but just now realized I should put it here since it involves DBS. I had DBS a couple of years ago. It has all but eliminated my really awful tremor but now I have several bad new symptoms, among them tongue biting. My tongue seems to list toward the right side & I bite it a lot esp. during talking. This makes me slur my words & is also painful. My right jaw muscles seem to be very tight & sore. I've had several re-programming sessions, but every time I get something improved, something else gets worse! It's all a tradeoff. Has anyone else experienced this tongue biting problem? Many thanks!
  4. Tongue Biting After DBS

    I had DBS a couple of years ago. Within the last few months I am biting my tongue on the right side a lot. Makes talking difficult, painful & I slur my words like a drunk. Jaw muscles are tight. Any ideas on why & also whether anything can be done to help?
  5. Tongue Biting After DBS

    Does anyone else have this symptom? I bite the right side of my tongue a lot these days while talking. It seems to be hanging to the right after DBS a couple of years ago. I also bite my lip a lot on both sides. Any thoughts?
  6. Early PD and vigorous exercise

    Thanks, Texas Tom. I found your post about RSB very interesting. I tried them last year for several weeks, and the good news is it was very effective. I felt more fit than I had in a long time & got a better workout there than at other types of activities I had tried. I was able to start jumping rope for the first time in a long time. It was great fun & I felt like a kid again! Unfortunately, the bad news is I fell a lot--having balance problems since DBS 2 years ago---and I think those hard jolts were too much for me, even though the floor & walls were padded. I had to stop going to RSB because I started having serious pain in my back, hips, & knees. The coaches were lovely people, but not knowledgeable enough about PD, & there was no tier program based on ability, as you describe in other gyms. There was little effort made to tailor activities to an individual. I was encouraged to do everything, always pushing harder. I think if you try RSB, be careful! Pay attention to your own body & stop right away if there are early warning signs. And try to pick a gym with a tier program for different stages/abilities of PD, along with PD-experienced staff.
  7. boxing

    I attended Rock Steady Boxing classes 2 X week for several months last year. Loved it, lots of fun, enjoyed the camaraderie, felt great, became very fit. I even learned to jump rope, which made me feel age 10 again! Unfortunately I had to stop going because I started having severe hip pain, knee pain, & back pain. I have developed serious balance issues since DBS 2 years ago, so I fell down a lot & even though the floors & walls were padded, the jolt was too much for me. I believe it caused the joint pain. So I would have to say boxing is great for some people, not so much for others. Also, I've been told that some RSB places perhaps devote more time & effort to insure that activities are more suited for individuals. Just be careful if you do it!
  8. Evening restlessness

    Although I said above that I haven't found a fix, here's what helps my RLS somewhat, sometimes. My neurologist prescribed Requip for RLS, which sometimes helps. One pill half an hour before bedtime, 1/2 pill late afternoon, which seems to also make me sleepy. Also, I sit on my large exercise ball rather than a stationary chair while watching TV so that I can roll back & forth & keep in motion, or sit on my walker so I can roll around, back & forth, do some stretches with it. If you must move, make it as easy & as much fun as possible. Hope this helps someone.
  9. Evening restlessness

    This sounds like Restless Legs Syndrome (RLS) to me, which frequently accompanies PD. I have it & have not found a fix. From what I can tell from my doctors & online research, there is no fix. They don't understand what causes it nor how to treat it. It's a miserable condition. Comes on end of day or at bedtime, just when you want to relax, and nothing helps except moving & that's the last thing you want to do then.
  10. 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.
  11. 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.
  12. 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.
  13. 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.
  14. 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!
  15. 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)!