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Appala

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Appala last won the day on October 26

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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

    Shower fall!

    Although I don't have the problem of falling in the shower, and I do use a shower chair at least part of the time, I do want to say I've found the loofah type bath mats made by Mayshine on Amazon to be very helpful. They are wonderful, cushy, very stable, feel great on my feet. Makes all the difference for me!
  2. Appala

    Gum Enlargement

    Thanks again. I'll try the Listerine. I believe my dentist says I don't have a plaque problem (my husband does, both teeth & arterial!). I apparently have the other type of dental issue, problems with many cavities, lost teeth, implants, toothaches, etc., all my life. Dentist says you tend tohave one or the other type based on mouth chemistry, perhaps inherited. I do have a nightguard & wear it every night.
  3. Appala

    Gum Enlargement

    Thank you for your response. I'll talk it over with my doctor & dentist. I do use the electronic toothbrush & the plastic flossers.
  4. Appala

    Gum Enlargement

    My dentist says I have overgrowth of gum tissue & he suspects it is a side effect of one of my meds, possibly Isradipine or Metformin (for diabetes). Isradipine was prescribed for HBP, but really my blood pressure isn't very high and I requested that one because of its possibly beneficial effects on PD. Other drugs I take: Levothyroxine, modafinil, and very small doses of Sinemet & Requip. I had DBS 2 years ago & need only small amounts of these last 2 now. What do you think it might be & what should I do about it? Switch drugs or discontinue? I'm still hoping the Isradipine will be beneficial for PD, so I hate to give it up. Also, since DBS I've gained weight (a known issue for DBS) & my A1C has increased, so I need the Metformin now more than ever to help control it. Any advice greatly appreciated.
  5. 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.
  6. 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.
  7. 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?
  8. 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!
  9. Appala

    Tongue Biting After DBS

    Yes. Awaiting response.
  10. 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!
  11. 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?
  12. 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?
  13. 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.
  14. 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!
  15. 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.
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