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About Inge

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  • Birthday 11/29/1938

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  1. Sleep Problem

    I have a sleeping problem. During the day I fall into a deep sleep where I cannot be awakened. I have slept through breakfast, lunch and dinner, doctor appointments etc. I have slept for 35 hours straight. I feel drugged . I can't prevent it from happening. I hear people trying to get me up but I cannot move or keep my eyes open. I don't get any meds when I am in this deep sleep. I am was taking 2 Rytary [23.75-95mg each] 7 to 8 times a day [every 2 1/2 hrs ] starting at 5 am and ending at 10 pm. I was taking Requip HCL 0.5mg along with the Rytary (7 times a day). A nurse at the NPF suggested it may be the Requip..so I have cut it down to 3x a day. That seems to have helped but i still have the problem. Some days are better than others. I am also experiencing moments of brain fog and have memory loss. I can't remember what day it is or what happened yesterday. AND then there are moments like this. When I feel perfectly normal and am capable of writing this. Is all of this part of the disease? I am very worried about the fact that I cannot be awakened
  2. DBS

    How often should the DBS device settings be changed? Since this is a progressing disease, it seems that the DBS settings would be changed as time goes by
  3. A neurologist I saw many years ago told me that drinking coca-cola when taking Sinemet would speed up its absorption. Recently, I read an article that said to stay away from all caffeinated drinks as they interfere with the absorption of sinemet. Are either one of these statements correct in your opinion? Does chewing sinemet and taking it with orange juice speed up its absorbition?
  4. DBS

    I had DBS surgery, right side only, 2years ago. It helped the unwwanted movements, but made walking much more difficult. I have 2 questions. 1, my neuro wants me to do the other side. Wouldn't that impair walking even more? 2. should the DBS device be fine tuned from time to time since this is an advancing disease?
  5. when i wear ff, i am miserable. depressed, can't breath, feel ill. can't get back unless i take a larger amount if sinemet. then i get dskinesia. i neer stay cofortable for long..is this off phase going to be what the fututr holds?

  6. medical maraijuana

    Thank you so much for the additional comment. I intend to start out with a brand low in THC and CBD. I understand that cannibis in food is not recommend nor is smoking it. It was suggested I use it sublingual. i intend to do a great deal of research before trying it.
  7. medical maraijuana

    if you use medical marijuana, I would be interested in what strains you found most helpful and how you use it.
  8. Medical Marijuana

    I have been researching medical Marijuana for Parkinson's disease. It is legal in my state(Calif). According to what I have read, some Marijuana (cannabinoids) are potent antioxidants. To quote the article: "Cannibnoids could delay or even stop progressive degeneration of brain dopaminergic systems. In combination with currently used drugs, cannabinoids might represent, qualitatively, a new approach to the treatment of PD, making it more effective." My pharmacist said it would help me 'settle down". I would like to know what YOUR thoughts are on medical Marijuana.
  9. What was your threshold for choosing DBS?

    I decided to have DBS surgery when the sinemet was no longer working as it should. My neurologist started me thinking about DBS from the beginning of my visits to her. She said he sooner the better. I felt she was pushing it on me. It was suggested that I switch to another neurologist since the one I was seeing was overcrowded with patients. The second neurologist also pushed DBS surgery. He was confident it would help. It was 11 years before I dedided it was time to do the surgery. He said it would get rid of my dyskinesia. I had one side done (GP). It cured the dyskinesia but worsened my ability to walk. Now, a year and a half later, the dyskinesia is back and my neurologist wants me to have the other side done. I wrote to Dr Okun, asking about a second surgery. Dr Okun wrote Tremor, dyskinesia, off time and fluctuations may (note "MAY') be improved. A second DBS lead will usually not help walking not currently responsive to meds; also many times walking after DBS worsens due to the surgery, but also disease progression. I am NOTsorry I had the first surgery but I am not going to have the second. My thinking was, I believe, impaired by the surgery. I can't afford to take a chance on a second surgery if it will impair my thinking any further. At present I have trouble remembering things and expressing my thoughts. I cannot think of the proper words to use for what I am trying to say. And I was told I may not be able to walk at all after a second surgery. I don't think the DBS surgery helped as much as it could have.
  10. Rytary

    Rytary is Carbidopa/Levodopa extended release. Sinemet CR is Carbidopa/Levodopa extended release What makes Retary different from Sinemet CR? Why is it that I can give up Requip and Amantadine and Azilect if I switch from the regular sinemet to Rytary?
  11. What,is the difference between Rytary and Sinemet cr? They both have the same ingredients

    I had DBS surgery, right side only. (GPi) Before DBS, I could walk. After DBS, I found walking very difficult. Froze a lot, fell a lot. The only benefit was that I no loger swayed (dyskinesa), However, now, 1 1/2 years later, i am swaying again. My meds are no longer working as well as they should. My neurologist wants me to have DBS surgery on the other side. I don't see how that would help. Can you enlighten me?
  13. Dr Okun, I have 2 questions 1. Since I have brittle dyskinesia my neurologist suggested trying the drug Rytary and giving up all the parkinson drugs I am taking now (Sinemet, Ropinirole, Azilect and Amantadine). He told me that it is very difficult finding the correct timing and dosage of Rytary and that I should call him when I pick up the Rytary and before taking it and to ignore the directions on the bottle. He said I may have periods where I could get worse during the time it takes to figure out how much to take and when to take it. This concerns me as my 'off ' periods are difficult for me to handle(feeling that I can't breathe, feeling sick, can't think). What are your experiences with this drug? 2. I have had DBS surgery right side only a year and a half ago. (GP) It helped get rid of my dyskinesa, (which is back) but it worsened my ability to walk. I was hoping that since DBS surgery was supposed to give you back your best 'on' times (my best on times I could walk) that my walking would not get worse. Now my neurologist wants me to have surgery on the other side. I am afraid I won't be able to walk at all if I do that. He said that not being able to walk, is a small price to pay for the benefits surgery could give me. You advised me to be very careful about having the other side done. I don't see how the first surgery had any benefit. It only made things worse. Why should I have the other side done? In what way will having the other side done benefit me?
  14. what does a person do when the sinemet no longer works?

    1. Cece


      Are yo being treated by an MDS?

    2. Cece


      After reading your posts I read you had a a DBS so I asssuming you are being treated by an MDS. I hope your doing better.

  15. Question #1. My neurologist always asks me how much Sinemet I am taking a day. Is there a limit on how much I can take? At present I am taking 1/2 tablet 25/100 every 1 1/2 hours. Question #2. Stem Cell of America is advertising a cure for Parknsons as well as a host of other diseases. I looked them up and it is apparently a sham. (Sounded too good to be true) However, there is research going on with stem cells. Is there any hope? Have they made any progress?