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Appala

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About Appala

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    Female
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    SF Bay Area, California

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  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. 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.
  3. 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?
  4. 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!
  5. Appala

    Tongue Biting After DBS

    Yes. Awaiting response.
  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

    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?
  8. 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?
  9. 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.
  10. 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!
  11. 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.
  12. 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.
  13. 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.
  14. 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.
  15. 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.
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