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noah last won the day on December 29 2015

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  1. dbs and duopa pump

    Have you seen any pts that have both DBS and the pump? I had DBS sugery 2 years ago and for the most part it has really helped. My dystonia was so bad I could hardly walk. The DBS has really helped. Lately my speech has been getting worse and some of my symptoms have come back. I am hesitate to increase my voltage as my speech is bad enough. In addition I take 28 pills per day and I still have off times for no apparent reason. I am very sensitive to the relationship between the food and absorption of the meds. Do you think that the pump would be helpful?
  2. traveling with pd

    Nashville is on my list too.
  3. traveling with pd

    That would be awesome if you could hike at the canyon. There are so many places to choose from. I was able to hike a few with the help of my walking sticks and help from my husband and daughter. i have DBS implants and was pleasantly surprised how easy it was. My biggest concern was falling came close a few times but didnt fall. So it was a good timed!!
  4. traveling with pd

    well i survived my trip. I went to Arizona to see the grand canon. It was breath taking if you ever get a chance to go do it. I did pretty well our plane left @ 600 am (from Boston)so I was up @ 430 usually I get up at 630 so I had to take my meds earlier. I was good to go until around 2pm was off and had o take more sinemet. Luckly my husband was driving so i didnt have to worry about shaking in public(one of my fears)Then the following AM I started my reg schedule. The flight home we left @ 12:45. I stuck to the schedule I had been doing and was really off @ 3. I took extra sinemet and was good until 2 AM(we had a 5 hr drive to get home) I didnt fall (had a few close calls but never fell) So all in all it was a great trip thanks to our lord jJesus Christ!!
  5. Weight Loss

    I dont think there is a certain age limit but they take that into account when doing the assessment, I think the younger the better. My doc told me I was the poster patient for DBS I was young(not feeling so young these days) 53, good health I really wanted to hold off longer but I could barely walk so I had to do something. I have been walking much better since Linda what are all those meds you listed for sleep???
  6. Weight Loss

    i have been doing all the usual stuff, no caffeine, no tv or computers sleep in cold room , dont nap during the day ect I have a good mattress and am comfortable just cant fall asleep . I will admit that times I cant shut my brain down but not every night. I am only sleepy when I dont sleep. I am playing around with the timing I take the trazadone At first I was taking it right at bedtime now I am playing around to see if I take it an hr before bed if that will help I have always been one of those who needed a lot of sleep so this is really hard
  7. Weight Loss

    Thank you linda I can use all the help I can get. I am also trying to fine tune some meds to help me sleep. I have been trying tranodone the challenge is the 25 isnt enough and the 50 makes my groggy in the AM. So basically I feel like I am between a rock and a hard place when it comes to my meds and sleep I am just so frustrated nothing seems to help!
  8. Weight Loss

    I am not sure if the DBS wears off or not. My problem as far as the wt loss is 2 fold 1. M y pills interact with my food which m,ans I have to be careful what and when I eat 2. The dyskenia at night I am sure I burn alot of calories
  9. Weight Loss

    I have actually lost 10 lb in the last few months. My weight loss is from the dyskensia I have in the early evening. I havent been able to fine tune my meds so I am off starting At 8 pm. I wiggle around so much that my shirt is soaked with sweat. I bet I burn 1000 cal a day just doing that. I am trying to work with my md. The challenge is that I cant tolerate any long lasting (CR, Rytary) after 3 because it keeps me Awake,(I have trouble sleeping as it is!) And adding reg sinemet it just adds to my dyskensia. The same thing happened before I had DBS surgery in 2015 after the surgery the dysensia went away and I was able to gain wgt So I am between a rock and a hard place
  10. trazadone

    So you would suggest first getting rid of the melatonin and try 25 mg 1 hr before bed first? You are such a great resource it would have taken me days to get feed back from my doc Thank you
  11. trazadone

    should I expect any kind of withdrawl symptoms if I stop the melatonin? What about the valeria is there withdrawl symptoms with that
  12. trazadone

    The schedule I have outlined above is helping but as you would expect I am drowsey the next day. When I was on 25 mg trazadon I never tried to play around with the timing b/c nobody suggested it. I always took it right before bed. Now that i can see the changing the time can make a big difference. I wonder if I had done that with the 25mg if it would have worked better. I hate taking all this medicine. What do you think the changes are I would be successful with the 25 mg if I took it earlier than right before bed. Do you think it is worth a try??
  13. trazadone

    There was someone on this thread who saidthat he takes it an hour before bed and he falls asleep fine. If he takes it any sooner he doesnt fall asleep as quickly. Is that safe?? What I have been doing.. is with a goal of going to bed @945 I take the valeriia @ 9 the trazadone @9:15 and the melatinin @ 9:30 Does this timing seem ok
  14. Balance

    is there any way to order the videos? I didnt see any place you could place an order
  15. Balance

    I just finished the big and loud program which was very good. The challenge continues to be that you still have to remember to use your loud voice and to walk big. Unlike people with out PD everything is not on automatic pilot so I have to think about how I talk, walk ect. Thats what I hate