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Appala

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Everything posted by Appala

  1. Appala

    Is DBS being oversold?

    I believe it is being oversold in some cases. I had DBS 2 years ago. Outcome has been mixed (serious speech & language, gait & balance problems, with serious psychosocial consequences), but I'm still glad I did it because my very bad tremor is gone. So I'd say only agree to DBS if you are satisfied that there is more to gain than to lose. Will you be better off with it, even if you have serious side effects? Do you have the type of symptoms that are likely to be improved? Try to inform yourself as well as possible by reading up on it from various sources & talking to your doctor. Also, a good programmer can make all the difference, but how do you know a good one from a bad one? No sure-fire answers, but you must try to advocate for yourself.
  2. Since my bilateral STN DBS (Vercise study) last year, my weight has gone way up & along with it my diabetes numbers have soared. I had kept it under control for years before the DBS, but as soon as I had the DBS the numbers started climbing rapidly. Seems to be nothing I can do to lose weight or control the A1C numbers. I attend Rock Steady boxing for 2 90-minute sessions each week, plus walking, etc., & also eat carefully (vegetarian + fish). Any comment or suggestions? Does Sinemet or Requip or other PD meds affect blood sugar? I am glad the DBS greatly improved the very big tremor I had & bothersome dyskinesia, but the side effects are horrible (bad gait, balance, swallowing, speech, weight gain & diabetes our of control) & getting worse, and programming hasn't helped. I'm starting to feel real despair.
  3. Appala

    DBS what is reasonable to expect ?

    May I add, I was one of those for whom the DBS worked very well for tremor. I could have been a model for one of those videos! Had a big bad huge tremor before DBS, totally gone after (with a few rare minor exceptions occasionally when stressed, etc.) However, DBS has had many serious undesirable side effects: speech & language, gait & balance, falls, tongue biting, some drooling, etc. People judge me based on my bad speech & think I'm drunk or stupid. Has a huge social cost. Still worth it to me because of alleviation of the tremor, but be aware & only do it if you think the possible trade-offs are worth it.
  4. Appala

    DBS Weight Gain & Diabetes

    Thanks, Dr. Okun. I had just about given up on you! Fortunately, I'm still interested, so better late than never, and I have an update. It's been nearly a year since I asked my question & it looked like NPF no longer had a DBS section. So I attacked the problem myself with diet improvements, more boxing, seeing a therapist, etc. I had become quite depressed having to deal with both PD & diabetes, and what I have usually done in the past to improve my mood is to eat something sweet! I seem to crave it. I think eventually researchers will find that PD brains are sugar deficient. Anyway not easy but I actually lost over 20 pounds & felt good. Unfortunately, since the holidays the weight has been climbing again & I had to quit boxing because I fell too many times & hurt my back & hip. So I'm starting the battle all over again. But now I've bought a tricycle on Craigslist & am riding it all over town! I have high hopes! Highly recommend trikes to others. BTW I'm reluctant to discontinue the agonist. I only take 1 Requip at bedtime. Helps RLS & sleep. Is that amount probably okay?
  5. Appala

    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. Appala

    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!
  7. Appala

    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!
  8. Appala

    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?
  9. Appala

    Tongue Biting After DBS

    Yes. Awaiting response.
  10. Appala

    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.
  11. Appala

    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!
  12. Appala

    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.
  13. Appala

    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.
  14. Appala

    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.
  15. 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.
  16. Appala

    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.
  17. Appala

    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.
  18. Appala

    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!
  19. 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.
  20. 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)!
  21. Appala

    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.
  22. Appala

    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.
  23. Appala

    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.
  24. Appala

    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?
  25. Appala

    Swallowing Problems

    Thank you!
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