helplinedonate
  • Announcements

    • ForumAdmin

      Frequently Asked Questions - Step by step guides

      Do you need assistance registering, logging in, posting, etc? Please visit the all new Frequently Asked Question Forum for step-by-step guides. Click the link below to access these helpful guides. Frequently Asked Questions
    • ForumAdmin

      Recursos Nuevos en Español

      http://www.parkinson.org/ayuda   http://www.parkinson.org/espanol    
    • ForumAdmin

      Línea de Ayuda 1-800-473-4636

      Línea de Ayuda 1-800-473-4636   ¿Qué es la línea de ayuda 1-800-4PD-INFO (473-4636) de la Fundación Nacional de Parkinson? Es un número de teléfono gratuito que ayuda a las personas con la enfermedad de Parkinson, sus familiares, amigos y profesionales de salud, a solucionar diferentes inquietudes.   La línea de ayuda ofrece: Información actualizada Apoyo emocional Referidos a profesionales de salud Recursos comunitarios Amplia variedad de publicaciones gratis    

BillBRNC

Members
  • Content count

    128
  • Joined

  • Last visited

  • Days Won

    1

Everything posted by BillBRNC

  1. I started Qigong about two months ago. Love it. Great for body, balance, and mind. I'm 66, but many years ago I used to be 3rd Degree Black Belt in Karate. I stopped due to injuries in tournaments, plus my wife was really pissed about constant broken ribs. Anyway, I have forgotten most of all that stuff, although I'm sure some would come to mind if needed. But aggressive/fighting Tai Chi strikes me as not being good for people like us. We need the calm, peaceful movements of Qigong, at least in my opinion, plus it is something my wife likes to do with me, and that's nice. Although only one class a week, we have several good DVDs, so we use those the rest of the time at home. Yes, I take the meds too for the Parkisonian symptoms associated with my Lewy Body Dementia, which sucks by the way. Good luck to all of us in finding our way thought this strange world.
  2. Now, don't make fun, but like all folks within the AARP age limit, we get in the mail the monthly AARP magazine. This month's has a really nice article about Michael J Fox, with pictures and lots of quotes. I don't ever read AARP, but I wanted to see what Fox had to say. It is a great article. And it contains his 4 or 5 rules, can't recall exact number. When I read them, he is right as rain. The whole article was spot on, worth the read, for new and old timers with PD.
  3. I was late taking a dose of Sinemet and my neck and shoulders, along with just about everything else, got tight and uncomfortable. When I tried to loosen up my neck and shoulders, I ended up actually pulling a muscle due to my efforts. Now, I don't have the normal stiffness and pain because I'm up to dosage on my Sinemet, but I'm left with a painful pulled muscle in my neck. Now, I know this will go away within a day or two, so that's not my inquiry. I'm just curious how common self-induced muscle strains and pulls happen because of trying to loosen up from the Parkinson stiffness and pain. Just wondering.
  4. I can tell you without any qualification that your relationship with your Dad means more to him than anything else in the world. I too have trouble swallowing and my lose my voice whenever it decides to go away. The voice part doesn't really bother me, but the swallowing is downright scary, plus a pain the butt. Good luck, and just be there for your Dad.
  5. Dave, I actually slept fine with a few trips to the bathroom last night. And I was on 50mg. I like the relax and clear the mind part, because clearing the mind is a major problem with me getting back to sleep. Thanks. Bill.
  6. Linda, thanks for the reply. It is looking at if 50mg isn't going to do it. I'm going to stay with it for another couple nights, then if I still can't get to sleep and stay asleep I'm going to go up to 75mg. My neuro has always said that 100mg is probably the range for me, but he too wants me to stay at 50 or 75 if there is any benefit at that dose. Someone wrote that I have a fear of this drug. Yes, I do, as I don't like sleeping medications for many reasons learned the hard way, but I can't survive without sleep so I don't know what else to do. I'm already doing all the non-drug things that I've read about or have been suggested by any of my doctors, so I just hope I can stay at 50, or failing that get a good stable result at 75 and possibly 100. If that doesn't work, I just won't go any higher in dosage. I'll find something else to try, but I just don't what that might be. Thanks again. Bill.
  7. Dave, thanks for the reply, and yes I have a major fear of Trazodone, mostly because of long past experiences with sleeping med. When I read that Trazodone was originally tested for depression, then they realized it was a better sleep aid, and the literature claims to be virtually free of adverse reactions and withdrawal, I decided to ask about it. Last two night have been good on 50 mg, but I fear that I soon will need 100 which my neuro told me was probably about right for me. I just don't want to get to 100 or whatever and keep having to up the dose. Yes, it is just a fear, but I'm feeling better reading all the responses, particularly what you have said. I need something because insomnia has been killing me for more than a year or two, and Trazodone helps me sleep through the night. This morning, I felt great with no drug feeling, and I hope it just keeps up. Thanks. Bill.
  8. Well, last night I couldn't get to sleep with the .25 so I got up around midnight and took the other half. I then slept well until morning, then I was a total mess cognitively and brainwise for the whole morning. My local doctor (my retired family practice wife) suggests just takin a full tablet when I go to bed tonight to see what happens. The neuro who give the original decision told us that I would need to move up to a higher dose, but to start at the bottom. Me, I've never cared for sleeping meds of any kind, never had good experience with them, so I'm bothered about increasing the dose at all. But I will tonight then decide tomorrow whether to stay the course. I just don't want to go up any more, but the fact is that the regular low dose for adults is over 100, which I'll just not go to. I think 50 will be my upper limit. So, that's where things stand with the Trazodone experiment right now. Good luck to all.
  9. I'm taking 1.5 pills (25/100) before each meal. Usually about 20 minutes or so, but sometimes much closer. My doctor said 30 minutes before or an hour after. Anyway, last night was the third time I had to get up and leave a restaurant due to stomach feeling queasy and my entire body feeling terrible and it feeling like I was under a sun lamp burning up and feeling like I was about to pass out. I get home and fall right into bed and don't get up for at least 12 hours. The label says to take with meals. The doctors say whatever they say, then I just do the best I can to do what the doctor says. If I take the pills right as I start dinner then I don't seem to have trouble, or immediately after starting eating. Everything else seems a crap shoot. Any ideas.
  10. Second night it took a little longer to fall asleep, but then I was thinking about some important things. When I got to sleep, I woke up once to bathroom about halfway to morning get up time. I will stop reporting unless this changes.
  11. Just last night, I started trying out Trazodone .25mg, which is half of their baby dose pill. I have had terrible insomnia for a couple of years that's been getting worse for at least a year. It is probably due to my early onset Alzheimer's or Dementia with Lewy Bodies. Anyway, the neuro treating me now suggested that it might help. Trazadone was formulated and went though clinical trials to become a big deal anti-depressant, but it failed terribly at being an anti-depressant. They found out though that it was great as a sleep aid, so that is what it is mostly used for now. I still take Celexa, as Trazadone just help it a little, but doesn't hurt on the anti-depressant front. Trazadone has no real adverse effects, it is not addictive, and my wife the family doctor says she has used it for years as her go-to sleep aid, so she is on board with giving it a try. Last night was my first night, and I went to sleep quickly, stayed asleep for about 5 hours, then slept comfortably on and off for about 3 more. I didn't have a drugged feeling this morning, at least no different than my normal drugged feeling. But it did take me a tad longer to get fully awake. I can see how it would have been easy as pie to just stay in bed another couple hours. And this is on a tiny dosage. I'm not recommending it to anyone, but it might be worth asking your own doctor about. I would be curious what other neuro's think of it. Oh, my main Parkinson med is Sinemet one and one-half 50/150 pills before meals, then I take one 50/150 pill before bed. My leg and hip pain usually drifts back after about 4 hours, but fortunately it isn't too bad yet at night if I take the pill at bedtime. I take a lot of other meds that aren't good for sleep too, but that's the way it is. Good luck.
  12. I had not thought about Sinemet running out could make aspiration worse, but I guess that would be more than possible, maybe probable. I plan to keep that in mind all the time from now on. Thanks for sharing the information.
  13. I'm sure many of you have experienced this, so it probably is not big deal, but it has been for me. I'm 66. When I drink slowly and carefully, I don't have a problem, but when I drink a little quicker particularly water, it goes down the wrong pipe. It is not pleasant, as I'm imagine you know. Is there some type of solution. I already take Sinemet, so what else can I do other than try to drink slowly. I have Dementia with Lewy Bodies, so my brain doesn't work as well to control or remember things I need to do, so this dang problem happens too often for my liking. Any suggestions. Thanks.
  14. FF, thanks for the ideas. I've been experimenting with some similar things, plus reading on Goggle about exercises for swallowing. It all seems to help some, but no a lot. I'm looking forward to seeing someone who knows a little more about it. Thanks again.
  15. I had an idea it would be something like this. I will talk with my neuro when I see him next, which should be in a week or so. Thanks, so now I know it is something to important to have looked at and hopefully mitigated.
  16. I'm sure this has been discussed till the cows come home, but I keep reading that Sinemet loses it's effectiveness after 5 years, thus requiring other things to be added to boost it. I've also read a lot that 5 years or so of using Sinemet will cause bad things to happen to the patient. What is the truth on these point? Thanks Bill.
  17. Yes, I started with one half dose (25/100), taken three times a day. They raised it to one whole pill, then to 1.5 pills. When I raised to 2 pills I ran into a brick wall. Dropped back to 1.5 pills, but have been having on and off issues, but not too bad. I've decided to stick with what I'm doing until I have my next sit-down with my neurologist in a few weeks. And yes I'm getting the crackers.
  18. MY thanks to all. I shall try the saltine cracker idea, as my wife has suggested it before. Seems odd to me that it makes much difference, but I guess lots of people say it.
  19. 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.
  20. Dr. Okun, you have already answered more than I fair share of questions, but I have another one. I'm take Sinemet before meals (3 time per day) and the dosage is 1.5 pills of the 50/150. The pills helped me a great deal at the start and they continue to do so. The pills never got all the painful areas, but most of them. Anyway, my left buttocks and often my right one too seem to always be painful, particularly when I'm sitting down or at night when I'm sleeping. It isn't ruining my life, but it isn't pleasant. I went up to 2 pills 3 times a day, but got quite sick, so I pulled back to 1.5 pills. For several weeks now the 1.5s have been causing no problems, but I continue with the buttocks pain. I'm going to talk with my neuro in a couple of weeks about all of this, but does this sound like I should give going up to 2 pills another try, or try taking something at bedtime? I have Dementia with Lewy Bodies, so the goal seems to be to keep me on the lowest dosage possible. Of course, if I move up to 2 pills, I could just have the same reactions again, but nothing ventured..... Thanks. Bill.
  21. 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.
  22. 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.
  23. Thanks. I'll be checking the early onset board. Also, thanks for the heads up on the Taoist method.
  24. 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.
  25. 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.