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dbogler last won the day on May 30 2014

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  1. DBS and CPAP usage

    Last week I had a STN DBS. Next week I am I a scheduled to have the transmitter placed next week. So, I have not been programmed yet. But I am seeing benefits already in my "honey moon" perioid. My tremor has gone away and my bradykinesia has almost all gone away. To my big surprise, however, is the effect on my sleeping. The first night I slept without my CPAP mask to keep from rubing the sore spots on my head. I slept beautifully and only woke up once (as opposed to 3-4 times). SO, the next 3 nights I slept without the CPAP and the same results. Several years ago I had a septoplasty and turbinectomy which opened up my air passage way. I have also lost 65 pounds in the past 5 years. MY CPAP is one of the newer types that automatically tirates the correct pressure. It is set at 4 and can go up to 12. I read the ouput today and it says that my recent AHI is between 1 -3. AHI is the number of times per hour you have an incident of not breathing. Anything less than 5 indicates that there is no sleep apnea I can't wait to get the DBS Plugged in to see my actual results But has anyone else noticed the huge difference DBS has on their sleep quality or CPAP readngs ?
  2. DBS and Rock Steady Boxing - any conflicts ?

    Texas Tom - I couldn't help but laugh at your post. The neighbor kids make jumping rope sooooo simple - but it ain't Good luck
  3. Am currently involved in a non-contact boxing program that has helped my PD symptoms And I am now considering DBS Are there any limitations following DBS surgery (say 3 months post op) that would prohibit me from still participating in Rock Steady Boxing ?
  4. Parkinson's From Pesticides

    OOPS My apology. I googled it and found that there have been articles tying Roundup to Parkinson's I have to say that this surprises me because up until now every thing I have read ties pesticides and not herbicides to PD. Folks use the terms so interchangeably that it is sometimes confusing. Frankly I find this scary as I have never been exposed to pesticides like a lot of people in the farming community have, But as a retired forester I was exposed to a lot of herbicides Very unsettling news
  5. Parkinson's From Pesticides

    Roundup is a herbicide not a pesticide and acts completely different than a pesticide. Somebody - please correct me if I am wrong but I think the connection to PD is exposure to pesticides not herbicides
  6. Am 64. Diagnosed with PD about 6 years ago. Am generally losing weight (on purpose) via diet and exercise. Spend an hour at the Y practically everyday. My question is this. Like most people my weight may fluctuate a couple of pounds one way or the other during the course of the week. And I have noticed that if I am up 2 pounds my PD is worse. If I am down 2 pounds my PD is better. Have others experienced this ?
  7. Boxing lessons and PD

    Let me start off by saying that I am not a picture of health. I am 64 and have had PD for 6 years. I am now in Stage 2 with balance issues being my main problem. I do try to walk 1-2 miles five times a week on an indoor track at the YMCA. I much prefer the indoor track as there is a handrail if I need it and also if I give out I am never very far from a bench that I can sit on. I have tired all sorts of exercises and most are frustrating (basketball), too difficult (racquetball) or too boring (most weight machines) Next let me say that I do not enjoy or condone the sport of boxing That being said I have got to say that I have started taking boxing lessons and I am having a blast. I don't actually hit anyone. And no one hits me. My instructor moves these large paddles around and yells out the numbers. #1 is a left jab, #2 is a right punch, #3 is a left hook, #4 is a right upper cut, etc. He moves around and I follow him or he moves forward forcing me to back up. I pay for an hour lesson but I am wore out in 20 minutes with 30 second rounds being followed by 3 minutes of rest. When I am done I can tell that I used every muscle in my body. Even my legs are sore. But I am having fun and look forward to each lesson. Not only is it good for strength building and cardio I can't help but think it helps my balance problem I had my annual physical today and I mentioned to my Family Doctor that I was taking boxing lessons. And he gave me this weird look at which point I told him that I was getting ready go fight a skinny midget to help me build self esteem. He thought about it then said "You know that may really backfire in case you should loose". We both laughed They say ball room dancing is a good exercise but I figure that I am more likely to hurt someone by stepping on their foot than I am in the boxing ring Ya gotta laugh at yourself every once in awhile
  8. Does anyone have any experience with vibrating wrist watches to remind you it is time to take your meds. It would be nice if I could set it to go off every 4 hours Any information about make and model number would be helpful Thanks
  9. Reaction to increased Levodopa

    My Movement Disorder Specialist just changed my meds from Sinemet 50/200 Controlled Release to regular Sinemet 50/200. The problem I was having with the Controlled Release was that the results were unpredictable As I understand it regular Sinemet is 25-30% more efficient than CR. I am on the same 3x per day schedule that I was on before Well, I am on my first day of the regular SInemet and my tremors have actually gotten worse I was wondering if this could be a reaction to the 25-30% more efficiency ? Has anyone else ever experienced this ? And if so how long does it take for your body to get used to the higher dose ?
  10. Antidepressants and PD

    I am currently taking Wellbutrin 100mg 2x/day to help with the depression that goes along with PD. My new Movement Disorder Specialist told me today that Wellbutrin often makes PD tremors worse. So, I was wondering if there is a particular antidepressant that has proven to be effective in helping with the depression that goes along with PD but has minimum side effects as related to PD
  11. What's best exercise for the PD patient?

    I don't know what is the best but I can tell you what I do. ! am 64 years old and have had PD about 6 years 1. In nice weather I try to walk 2 miles twice a week. For safety reasons (leaning forward and going faster than I can control) I always use a walking stick. Mine is a simple 5 foot stick made out of dogwood 2. I have a recumbent bike at home that I will get on for 30 minutes 3 times a week. From what I have researched a high rpm (70-80) with little or no resistance is better than lower rpm with some resistance. I have mine sitting in front of the tv in the living room 3. In the summer I will swim maybe once a week. And I walk backwards in the pool. If I fall - no big deal 4. I joined a health center and have a personal trainer 2 days a week for an hour. If you are like me when I first started I didn't know how to use the various machines so he was very useful,, The things we do are; A. Moderate weight training. Be careful and not over do it or you will exasperate your PD B. With someone holding me to keep me from falling I try to stand on 1 leg for 1-2 seconds C. Again with someone holding me I walk backwards D. I emphasize those weight training exercises that twist my body E. Again with someone holding me I practice stepping up onto a 8 inch platform and also stepping over it F. Boxing. I have never thrown a punch in my life before but I really like this. My training partner puts on boxing mitts and moves his hands around. And I try to hit his mitts. Not only is it fun and good for your coordination but it is also a good cardio workout. About 10 minutes is all I can do and I am pooped. I tell folks that I am getting ready to cage fight. What a joke. G. And a new exercise I tried yesterday that I really liked is play catch with some one about 8 feet away using a 6 pound ball If I had to just narrow it to 3 it would be walking, recumbent bike and those balance exercises with someone holding me in case I should try and fall. Walking though is hard to beat. I had to relearn how to walk. A 90 year old speed walker showed me how to swing my arms. And since my place where I walk is around a state owned fish hatchery there is usually no one there but me.So sometimes I yell as loud as I can to exercise my vocal chords and if I do run across someone I just pretend that nothing happened. But do make or buy yourself a walking stick I try to get in 30-60 minutes of some kind of exercise at least 5 times a week and some days I will double up
  12. Low Dose of Mirapex

    bjenczyk - that is the exact kind of input I was looking for. 0.125 is such a low dose I was wondering if : A. My perceived benefit was all in my head B. My improvement came about as a result of my body finally becoming used to Sinemet CR after being taken off Stalevo, Thus it would have occurred with or without the Mirapex C. Since all the literature I read refers to 0.125 as a starting dose I didn't know if others actually had benefit at that level or if it was just customary to start at 0.125 the first week, move to 0.25 the second week, 0.5 the 3rd week till you got up to the larger dose that did some good. I know that you used to be able to buy a Mirapex "starter kit" that did just that But you have answered my question that YES you can receive benefit from the initial low dose of 0.125 and YES doctors sometimes prescribe that low of a dose if that is all that is needed at the time Thanks. Your response was most beneficial to me I understand that adding Mirapex sometimes allows for the reduction in SInemet so I can only assume that as my Mirapex dosage went up my SInemet dosage could possibly go down. But because of my concerns about Mirapex I would rather stay at as low a dose as I can SO, I will tell my neurologist that the 0.125 dose is hunky dory and just leave everything as is What I really like about taking Mirapex 0.125 3x/day in addition to Sinemet 50/200 CR 3x/day is that I can take my pills just 3 times a day and don't have to stagger the timing. Plus the SInemet CR seemed to have a mind of its own. It was hard to predict when I would be "off". And the addition of the Mirapex seems to have smoothed the cycle out So I am as happy as a pig in the mud
  13. Low Dose of Mirapex

    I may not have the abbreviations right but by OC I meant Obsessive Compulsive. There are horror stories about people on Mirapex who became addicted to gambling or some other pleasure seeking behavior. I don't gamble. But my personality is sort of obsessive compulsive any way. I don't do anything half way. So Mirapex does raise concerns for me
  14. Diagnosed today

    So sorry. I remember the day I was diagnosed. It sent me into a very deep depression. And I still struggle with it. I would say the 3 things that have helped me the most are: 1. PD doesn't define who you are. Get the best movement disorder specialist you can and follow his advice. But other than that just try to act like you don't have it and go on living 2. Look around at some of the poor crippled folks out here that have smiles on their faces. When I start feeling sorry for myself I go to Walmart and go though a specific check out lane where this guy in a wheelchair with deformed hands checks me out. And he is smiling. Watching him makes me feel like a big sissy. Next thing you know I am not feeling sorry for myself any more 3. Exercise helps not only physically but mentally
  15. Low Dose of Mirapex

    This my first post. And I gotta tell you it is a blessing to be able to talk about PD with other folks who have PD I am 64 years old and showed symptoms 5 1//2 years ago and was diagnosed 4 years ago and retired early. My neurologist started me on Sinemet 25/100 3x/day primarily because I objected to DA because of the awful side effects I had read about. Eventually I was switched to Stalevo 200 3x/day. And everything was pretty much under control. Then my insurance company threw a wrinkle into the equation. Stalevo was no longer covered as of January 1. So I switched to Sinemet 50/200 ER 3x/day. And things went downhill fast I went through an awful 2-3 weeks. Balance problems, leaning forward while walking, hard time putting my cloths on and shaving. And I am not sure if it was the med change or the fact that at about that time I had initiated a vigorous exercise program. Now I had always exercised by walking 2 mile 3-4 times a week and riding my recumbent bike at home. But at about that time I hired a personal trainer and he really gave me a workout. So I don't figure that I will ever know for sure if it was the med change or the increased amount (probably excessive amount) amount of exercise. But things are starting to get a little better - but I still had problems in the morning with tremors and freezing So I went to my neurologist and told him that I would be willing to try a DA. He put me on Mirapex 0.125 3x/day in addition to my SInemet. And I instantly saw some benefit So, my question is have others seen a benefit from Mirapex at such a low dose ? I am inclined to not ask the doctor to raise it one step up to 0.25 3x/day as I have gotten some benefit but with no side effects. Things are not perfect, though. If 0.125 gives me benefit would 0.25 necessarily give me more benefit ? And even if I went up to 0.25 that is still only 0.75 per day. Should I be concened about OC behavior at such a low dose. What would you do ?