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Everything posted by BillBRNC

  1. I'm looking for something that my wife and I can do together, but that will also help hopefully significantly with movement and balance issues. Being able to include my wife and do something with generally normal people seems like a good idea. Of course, my service dog will kind of give me away so to say, but I don't care about that. I also completing the Big program thing, so I'm looking for something longer term. Thanks.
  2. Do you also get exercise doing Tai Chi? My PT and Neuro are big into balance and vigorous exercise. I current ride a exercise bike in morning in front of financial news for about 30 minutes and also take a couple of long walks with my dog. My balance and eyesight are bothered by both the Parkinson stuff and the cognitive end of Dementia with Lewy Bodies, so there isn't a lot more I can do, but Tai Chi seems like something good I can also do with my wife so we will have something to do together.
  3. Lethe, a question for you if you don't mind. Is the class you attend a class for just Parkinson types, or is it regular people class? The classes I have access to are open to the general public and I imagine few if any Parkinson folks would be there. Thanks.
  4. Thanks. I'll be checking the early onset board. Also, thanks for the heads up on the Taoist method.
  5. Do most of you guys engage in regular daily vigorous workouts for improved movement and balance. I don't mean normal working or at work or home. A fairly formal method to state engaged with body and other people? Is this necessary, or can just regular life activities do the trick so long as a person walks and does normal retired stuff on a daily basis. Thanks.
  6. Lad, I might be wrong, but the PWR thing looks very similar to the LVST Big program. Is there a connection you know of. I like what little I just read about PWR, as I'm looking for something that I can incorporate into my daily life to push things to a higher level while living my life at the same time. Am I missing something? Thanks. Bill.
  7. I've been looking at these Trionic things. I don't need one yet, but I like the larger wheels so you can go on grass and off-sidewalk. I'm sure they aren't as great as they are made out to be, but I might be wrong, so I'll keep them in mind.
  8. I start the LSVT Big thing tomorrow at 1 in the afternoon, then M-Th for four weeks. I hope it helps with balance some. I started Sinemet about a month ago with general good results. I'm still getting dosage dialed in properly with meals and such, but the stuff most surely works. I went to high with the dosage, and now I'm pulling back a tad. I don't know if this will mess up the PT person in the Big program. I don't have actual Parkinson's, but Dementia with Lewy Bodies, and the Parkinsonian stuff is really going strong right now. I often wonder if Alzheimer's, Lewy Bodies, and Parkinson's are really just variations of the same thing.
  9. I'm sure glad we can all agree on this, as I for one don't come here to read a bunch of political claptrap.
  10. Sandal, I hope someone who knows more than I do answers your question. You might ask the doctor a question in the other section. I take the same dosage as you. When I went higher, things didn't go so well for me, but I'm ok at current dosage. A MDS would have seen far more of this sort of thing, but that doesn't make him right, but he sure knows more than I do. I wish you good luck.
  11. Roger, I appreciate your comments. Yes, I have very specific views of suicide or better stated would be withholding of food and hydration unless I ask for it and actually feed myself. I have an Advanced Directive that so states, but who knows if my wife will follow it or the hospice folks will follow it. That said, I also understand and appreciate you veiled comment that you disagree with this, and you sure don't need to explain yourself to me. To each, their own. On the other hand, I am becoming more and more of the view that this entire portion of my life is just another challenge to be met and dealt with in a manner more successful than in the past. My main concern is my wife and family and leaving them without resources for the future, although I have plenty, but possible not enough. Bottom line: I agree that is would be best for me to hit this head on and leave the "wow is me" stuff to someone else. Thanks you for your views. Bill.
  12. I'm not sure about the facial mask thing, but my wife is always telling me to try to look happy. Drives me nuts, but she is great at most everything else. I look at myself when I shave and I don't think I look messed up. I have to say, though, that facial mask is one thing I don't give a tinker's damn about.
  13. I upped from one and a half to two a couple days ago, and last night at dinner the bottom fell out. I think I had every adverse reaction listed, but I made it home, to bed, no sleep, felt terrible, wanted to destroy the world, then up this morning and feeling worn out but better. I forced myself to take the prior one and one-half pill dosage per my wife, and I hope this still works. Message to the newly wise is not to push my luck. My wife is calling the neuro today to discuss, but nothing more seems necessary for now. This suck.
  14. Just wondering, is there a point at which increasing the dosage actually ends up increasing the symptoms that had been taken care of by a lower dose? Is the test of how much is enough really just deciding when enough is enough to make life reasonably tolerable? I'm just wondering about this types of simple things right now. Thanks.
  15. Ken, thanks. I figured it would be something like that. Good luck. Bill.
  16. I soon will be taking 2 pills (25/100) 30 minutes prior to the three meals of the day. I have found that I generally wake up with pain in my hips, knees, and ankles, and sometimes other places during the middle of the night. What would be the minimum dosage of Sinemet CR I should think about at bedtime. Of course, I plan to discuss this with my doctor, but I just wanted an idea, and I just assume CR is the best thing for night time, but I could be wrong. Thanks.
  17. Well, I took my first two full pills 25/100 last night before dinner, and like before when I added a half pill, I got totally wiped out and was in bed within 30 minutes. Did not sleep all that much, but I feel fine now. my left leg and hip hurt all night, but the all else fine. All fine this morning an hour or more after morning dose. I intend to talk with doc about sleeping hours. The dang pain wakes me up, but I can live with it rather than mess up everything else that is working ok. We shall see. I like the idea of taking one when I decided I need it when I wake up, but I fear the slippery slope of that one. Anyway, thanks for the info. Seems there is not firm or even general rule on this. Oh, musicman, I know all about the mind not shutting down. Big problem for me, but oddly I mostly end up with the same song going through my brain over an over, which is fine if it is a good tune.
  18. I have Dementia with Lewy Bodies, which includes a lot of the Parkinsonian symptoms. I've been on Celexa 40mg for almost a year. I don't really see any benefit, but my wife (who is a family doctor, but not my doctor) thinks Celexa has helped. I'm going to have a nice chat with my neuro on my next visit in a month or so about the usefulness of Celexa or whether something else or nothing might be more useful. I spend large parts of each day in a dark place, which I can live with, but why bother. I'm not going to do anything, but I do wonder how to break into the light.
  19. I have a solid diagnosis of DLB mixed with Alzheimer's. I'm 66 and 185 pounds, male. I got my diagnosis at a major medical center's memory assessment clinic, but I am seeing a local neurologist for management of medications that were recommended by the center. I'm on Exelon, Celexa, and a bunch of other stuff and some heart medications for stable heart failure. I started Sinemet one-half 25/100 3 times per day a week ago with no problems. My neurologist told my wife (a doctor) to move me on up to one full pill of 25/100 3 time per day. If all goes well, what is the normal next step up. I'm taking these for the Parkinsonian movement, muscle, stiffness, pain stuff. Just trying to get an idea, as my wife won't tell me anything other than see the neuro and go the PT. I'm set to see the neuro in two months, but he will discuss med adjustments with my wife along the way based on what I told my wife. This is a little different I know, but that is kind of how it works where we live. Thanks for any information. I realize you only can make generalized comments and nothing specific for my case.
  20. Dancing Bear, I've had hallucinations going back to before my original diagnosis. Not a huge deal, but more of a curiosity, at least for now. I used to see actual people, animals, and cars, but now I mostly see dark shapes off to the sides or off in the distance. I can't tell any difference since starting Sinemet. I hoping to push on up to 2 pills 25/100 3 times at the end of the week. Currently at one and a half 3 times a day. I think that should just about do the trick for me. My doc wants to wait a month of so to decide about a bedtime dose of something. I do ok at night, but things could be better, but I don't want to mess up the success to date with Sinemet.
  21. Tom, oddly I just ordered a 12" leash yesterday. So telling her to step forward is sufficient? I've never had a freeze, so are you able to speak and know to speak during a freeze like this? Thanks. Oh, I hope the DBS thing works out fine for you. I sure hope I don't need one, and I kind of doubt that I will. Thanks. Bill.
  22. Driving? Yes, the driving thing. A number of docs have suggested I give up my license, because I get all confused in multi-lane traffic, strange places, changing lanes, and just basically driving in strange places period. Even with my wife to help navigate. My current solution is that I don't drive more than 2 miles from my house, which includes grocery store, post office, hardware store, downtown, city park, and most of my favorite restaurants. I live in a town of 1300, no four lane roads, 3 stop light, and top speed in town of 20 mph, so I feel like I'm basically safe here, but I realize it is getting close to time. Of course, just because I drive doesn't mean I'll remember where I'm going or why, but I'm retired so who cares. I didn't know Parkinson people had these problems too. Good luck.
  23. I just ordered a fob from Amazon over the weekend. It attaches to my key ring and it is small. Made of some type of metal. Not expensive, but looks about right.
  24. By the way, the Sinemet I started recently seems to be really helping with the muscle stiffness, joints, and walking stuff.