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About Inge

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  • Birthday 11/29/1938

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    San Diego

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  1. You had swaying with c/l and I’m reading everything I can about that on the forum. Did you get it is soon as you started taking the c/l? It doesn’t bother me too badly since it only happens when I’m standing still. I can take half a pill twice a day. I just keep moving! How did it progress for you? I guess it must’ve got pretty bad since you had surgery to stop unwanted movements. 

  2. Inge

    nite meds?

    Do I need to take Carbodopa/Levodopa during the night? Will the Parkinsons Meds lose their ability to work eventually
  3. . Can I substitute one Rytary 48.75mg195mg capsule with two Rytary 23. 75-95mg capsules?
  4. I take one 48.75-195 mg Rytary capsule and one Ropinirole HCL tablet 0.5 mg every 2 hours starting approximately 6 am until 10 pm [ 9 times a day] I was taking it every 2 1/2 hours a day but found i was wearing off before the 2 1/2 hours were up. i have several questions regarding the medication schedule and the medication: 1. What do you suggest i do when i wear off to get back 'ON’? At present I take a Carbidopa -Levodopa 25-100 one half hour after taking the Retary and the Ropinirole if there are no signs of getting back 'On'. That usually works. If not, I take another Retary and another Ropinirole which usually works. I realize this is rather drastic but I become desperate. There has to be better way. Do you have any suggestions? 2. What should I do if I wake up in the middle of the night wearing off? I have a choice of the Retary and the Ropnirole or the Carbidopa-Levodopa 25-100. Do you have any suggestions? 3. Can I substitute one Rytary 48.75mg195mg capsule with two Rytary 23. 75-95mg capsules? 4. Can I substitute one Ropinirole HCL 0.5mg tablet with two Ropiniole HCL 0.25mg tablets? 5. I have had Parkinson’s for 15 years. Am coming the point where the medication will no longer work?. 6. I have had DBS on the right side only. Before the operation I could walk. Now I can't. I'm afraid have the other side done for fear of getting worse I read an article that stated Amantadine is a medication used to help motor symptom problems. Do you think it could improve my ability to walk ?
  5. Inge

    Sleep Problem

    I have a problem getting to sleep, staying asleep and also CANNOT BE AWAKENED when I do fall asleep, whether day or night, causing me to miss appointments, meals, medication, etc. This is very worrisome.
  6. Inge

    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
  7. Inge


    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
  8. 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?
  9. Inge


    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?
  10. 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?

  11. Inge

    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.
  12. Inge

    medical maraijuana

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

    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.
  14. Inge

    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.
  15. Inge


    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?