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noah

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Everything posted by noah

  1. inhaled levadopa

    i have been off alot and it takes about an hour to regroup. I will be thrilled when this is approved. Any guess how long it will take
  2. speech therapy

    I have had PD 9 years and have had speech pro about a year and am starting to have swallowing problems
  3. Sexual dysfunction

    I havent been able to have sex in months. I have to talk tom my doctor. PD takes everything away!!
  4. Sinemet absorption with applesauce

    If vit c help with absorption would it be helpful to take all our sinemet with oJ
  5. SHARED FAVORITE MUSIC OF THE SEASON--2017

    my favorite song is Mary did you know. I loved the puppets and the rap about Christmas!!
  6. Untreatable Dyskinesia

    where in ny do you live
  7. protein and absorption

    I am really struggling here. I am very sensitive to the effect of protein and medicine. I try to take my meds 1 hr before eating, for the most part it is doable. Supper and erly evening is a huge problem . I am suppose to take some meds @ 5 and then again @7. I have been eating dinner @ 5:45 ( I am 45 min away from when I took the meds and 1 hr before I have to take my next dose) No matter how hard I try it doesnt work i end up off and then i am off for the rest of the night eventho i take sinemt @ 7 Does any one have any suggestions. I have to eat as it is I have lost 10 lb in the past few months. I am at my wits end!!
  8. source of protein

    Is there a difference in the affect of protein on absorption between plant vs animal Is there a liquid form of sinemet which wouldnt interfere with the absorption
  9. protein and absorption

    I am really struggling here. I am very sensitive to the effect of protein and medicine. I try to take my meds 1 hr before eating, for the most part it is doable. Supper and erly evening is a huge problem . I am suppose to take some meds @ 5 and then again @7. I have been eating dinner @ 5:45 ( I am 45 min away from when I took the meds and 1 hr before I have to take my next dose) No matter how hard I try it doesnt work i end up off and then i am off for the rest of the night eventho i take sinemt @ 7 Does any one have any suggestions. I have to eat as it is I have lost 10 lb in the past few months. I am at my wits end!!
  10. nutrition

    Does anyone know how to get in touch with Kathryn??
  11. protein and absorption

    I cant push my 7 dose any later b/c i am off
  12. protein and absorption

    thanks for the tips. What kind of probiotic do you take? So your doc agrees it helps but just doesnt know why?
  13. DBS Update

    I cant believed I am saying this but it wasnt as bad as i thought. My surgeon told me what was going on the entire way. Like when the drilling started that when it gets loud that means it is almost done. The nurses held my hand. I just kept saying the Our Father over and over
  14. 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?
  15. dbs and duopa pump

    The more I think about it I have only had DBS for 2 years. Everytime I turn it up my speech gets bad,. Some of the symptoms I had before the DBS are coming back. I would have thought that I would have gotten more bang for my buck. The people that you have started on the pump that had DBS how many years did they get out of it??
  16. status of new drug

    What is the status of that film you can put under your tongue when you are off? Has it gone to the FDA Any guess when we might see it on the market
  17. exercise and off times

    I always thought that exercise was good for you so i try to do as much as I can. I find on the days I exercise I am off more after I do the exercise. It seems to kinda defeat the purpose i=of exercising if you are going to be off and feel bad for hours after.
  18. planning for the future

    We have a financial planner who takes care of all that. I
  19. planning for the future

    In trying to plan for the future when my husband wont be able to care for me. How does one get the process started for home care ect/? I would like to have an idea so when the time comes he wont feel so overwhelmed. I never thought in a million years that I would be asking this ??
  20. planning for the future

    I dont know anything about it. No I do not have long term care insurance. But my husband has a nice size pension I just dont know how i would get the process started Has anyone else thought about this
  21. rytary and sleep

    I take a combo of rytary and IR sinemet. It seems to work pretty well during the day. I am having an issue with early evening. I am off pretty much every evening. I was taking 1 Sinemet CR , 2 immediate sinemet(5-530). I have found that this only lasts until 730 sometimes earlier. I then will take 2 IR @ 8 (this doesnt seem to kick in at all and when it does it doesnt last very long. My MD suggested replacing the sinemt CR with a rytary. I did that and have found that it keeps me awake. I am still trying to find the right balance of the trazadone i am taking to sleep, so adding the rytary has just made it worse. I had tried rytary @ this time before and had the same issue( the doc said that since I am taking trazadone it shouldnt be a problem, well it is) 1. Is there any way to settle down the early evening using the immediate release sinemet? 2. I know we had talked about the trazadone. My challenge is that 25 is not enough and 50 is too much(feeling groggy the next day ) I had gone on vacation and i didnt want to change anything. I felt I needed t try something so I have been taking 3/4 of a pill . I actually think it was helping a little but then i added back the rytary and now i feel like the trazadone isnt working at all Any thoughts about to settle down the early evening? I think the sleep would be better if i wasnt so off in the evening
  22. rytary and sleep

    I take a combo of rytary and IR sinemet. It seems to work pretty well during the day. I am having an issue with early evening. I am off pretty much every evening. I was taking 1 Sinemet CR , 2 immediate sinemet(5-530). I have found that this only lasts until 730 sometimes earlier. I then will take 2 IR @ 8 (this doesnt seem to kick in at all and when it does it doesnt last very long. My MD suggested replacing the sinemt CR with a rytary. I did that and have found that it keeps me awake. I am still trying to find the right balance of the trazadone i am taking to sleep, so adding the rytary has just made it worse. I had tried rytary @ this time before and had the same issue( the doc said that since I am taking trazadone it shouldnt be a problem, well it is) 1. Is there any way to settle down the early evening using the immediate release sinemet? 2. I know we had talked about the trazadone. My challenge is that 25 is not enough and 50 is too much(feeling groggy the next day ) I had gone on vacation and i didnt want to change anything. I felt I needed t try something so I have been taking 3/4 of a pill . I actually think it was helping a little but then i added back the rytary and now i feel like the trazadone isnt working at all Any thoughts about to settle down the early evening? I think the sleep would be better if i wasnt so off in the evening Thanks for all your help1
  23. rytary and sleep

    What is the max IR sinemet one can take?? I already take 3(along with the rytary) at 530, 2 @ 8
  24. what to do

    I would appreciate any care givers perspective. I am 59 and was dx about 9 yrs First i want to say that I have been blessed with a wonderful husband who has been so good to me since this nightmare began. Hes usually a laid back guy who is not real talkative. But lately I am seeing a side of him I have never seen before and i dont like it. As things tend to get worse he appears to be less understanding than before. The biggest problem is my speech. It is getting hard to understand what I am saying. I have seen speech therapist and try to speak louder but as with everything with PD you have to think about what you are going to do. So where he can speak without thinking about it and at times i forget and i dont speak loud enough or i talk to fast. In addition I forget things like where i put my cell phone. When i tell him i cant find it he'll say well if you put it back in the same place you would know where it was. We just got back from the grand canyon and boy did i see a side i didnt like One day he told me that if i forgot my pills he'd kill me,(not that he would but for him to even say that is totally out of character) then another time he made some dig about the fact that we have to eat at a certain time (i am very sensitive to the interaction between my food and meds) This is totally out of character for him. I have told him many times that i think it would be helpful if he went to see a therapist(i do and it is very helpful) but he wont go. He is a devote Christian as am i so i think that he thinks that is enough. I think God gave us therapist to help us in addition to having faith in him. I really am concerned about the effect this is having on our relationship. I know it is hard for him and i always try to thank him for everything he does, He needs help if we are going to make it through this storm. I want the time we are given to be as happy as possible I would appreciate any input anyone can provide thank you jody
  25. “On” when I should be “off”

    I remember feeling that way.( not any more) Getting up an feeling normal for a few hours. You most likely had stored some dopamine up over night which is why you feel ok in the morning
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