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noah

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Everything posted by noah

  1. 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
  2. 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.
  3. planning for the future

    We have a financial planner who takes care of all that. I
  4. 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 ??
  5. 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
  6. 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
  7. 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?
  8. 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
  9. rytary and sleep

    What is the max IR sinemet one can take?? I already take 3(along with the rytary) at 530, 2 @ 8
  10. 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
  11. “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
  12. It is Seven Months Today

    i was denied long term health insurance b/c of the pd
  13. dbs and duopa pump

    Is there still an issue with nausea with the pump. I have a terrible time such that i have to take extra carbidopa each time i take sinemet. Is there still an issue with the meds not being absorbed due to protein. Thats another big challenge for me. I have to be very careful to space out the food and meds other wise the medication isnt absorbed. since the pump goes into the intestine are these problems not an issue??
  14. now that would be a study I would volunteer for!
  15. traveling with pd

    I am going out to Arizona in few weeks(6 hr ride) Does anyone have any tips that have worked for them
  16. traveling with pd

    Nashville is on my list too.
  17. 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!!
  18. 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!!
  19. 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???
  20. 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
  21. 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!
  22. 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
  23. 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
  24. trazadone

    You may or may not remember that I have been having difficulty falling asleep. After trying a few things the doc gave me trazadone 25 mg to start. I had been using 10 ml of 2.5 mg melatonin and .5 ml of valerian root(she told me I could continue with them in addition to the trazadone) I have been following the instructions for each one.. Valderian root about 30 minutes before bed, the melatonin about 15 minutes before bed and the 25 mg of the trazadone right at b ed I usually take the valerian root and the melatoin in the spare bedroom and try to settle myself down before going to bed . What I am finding is that by the time I am reading to moved into the bedroom I am feeling a liitle fuzzy, I go into my room and take the 25 mg of the trazadone a nd shortly after that I feel groggy and am laying there waiting to fall sleep but after about 15 minutes the feeling is gone Does this mean I should talk to my doc about upping the dose. It has only been 4 n ights. Should the timing I take the meds be different? Would appreciate your input Thank you
  25. 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
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