Hi everyone I'm at a loss what to do next with my Dad, he was miss diagnosed with Parkinson's but now saying its CBD and since been on the new medication he has deteriorated rapidly. He can't speak to even communicate when he is in pain and keeps falling all the time, which has resulted in him breaking his back in 2 places. I just need advice off people going through the same thing in any alternative treatments as not getting very far here

9 Replies

  • Hi, Niomie. So sorry about your father. There have been many discussions about alternative treatments here, and some folks have said they have had good results. Everything is temporary, I'm afraid. It's possible that the new medication could be contributing to his downturn. There are medications that are prescribed for parkinson's that make psp and cbd worse. Do you know what your father is taking?The archives here are very helpful. If you use the search box at the top of the page, you can find lots of good information.

    I do sympathize. It's awful to know someone you love is in pain, and it's worse when he can't speak to tell you about it. Hang on. Love and peace, Easterncedar

  • Can u tell me which Meds you consider makes PSP worse

  • Oh, I'm sorry to have seemed to know more than I do. I only know what I have read here! Some folks have discussed side effects, especially muscle spasms, from the the levidopa-caridopa drugs that are often prescribed for parkinson's.

  • Dont apologise I do understand .

    I ask because my husband generally seem to be worse for three or for hours after taking Sinemet . He gets Dystonia . At least it's the only way I can describe it . His muscle tone collapses I can see it happening . His face his head neck drops forward and twists . His knuckles twist and become rigid. He goes into a ball .

    Because of this after many years we are reducing the dose to see if it will help ..OR NOT .

  • oh dear, that sounds awful. I just got my guy off selegiline, and the awful swelling of his feet has all but vanished. I finally read the drug information papers that listed edema as a side effect and asked the doctor if we could get him off it several weeks ago. It took a while for his feet and legs to regain their normal size and shape, but oh how lovely it is to see them again. I had assumed it was just something he had to live with, as a result of his sedentary life. The skin was in bad shape and cuts weren't healing. We never really saw any benefit from it, anyway. Or from Sinemet or amantadine or any of the other things we tried. Such a gamble it all is!

  • When I stopped John high BPMeds his swellings went down and night choking eased a lot after stopping the patch .

  • Hi. My husband has CBD and is on Sinemet and Azilect. The Sinemet used to help with the hand tremor and personality. The other has no affect at all. F has been pain free up till recently when he has been mostly in bed and his joints ache. I don't recognize your experience at all. It may not be the drugs themselves but a combination of things. Some of the Neuro drugs can have strange effects when taken with certain foods. Check out on line or the pill leaflet.

  • Hellebore, The doctors are saying that my husband might not have PSP also. We go to the MSA doctor in September. I wish that I knew how they really know the differences in CBD, MSA, and PSP. It is so frustrating. His eyes are not fixed looking up like most PSP patients. He has had it for at least 4 years. It will be 7 months between the neurologist visits before we see the MSA doctor to see if he has it. How long has your husband been diagnosed with CBD?

  • Hi. My husband's first signs were a dodgy ankle and changes in personality about 5 yrs ago. As far as I can tell a diagnosis is done mostly by ticking of the symptoms of other conditions that they don't have. F doesn't have the inability to gaze up but is starting with eyes not closing. He had a CT scan last yr and two months ago the neurologist finally decided from analysing that and his gradual paralysis on one side that it was CBD.

    From reading other posts I have got a feel for what is and isn't. PSP, MSA,CBD and their variants all have some similarities. Some people say having a label doesn't matter in the end. In the end its probably true but now it help s. I have found that doctors, physio s and nurses like to be able to fill out the form properly. They become much more receptive and helpful when they can have a medical term to get their heads around. Although F has been bad physically for the last 18 months, and a physio last year said there was no more to be done, now we have a definite name I've had everything thrown at me. Today I saw the Nuero physio for my area, never heard of her before.

    The Neurologist hasn't really helped but doctor tends to defer to him. It seems a very long time for you to wait until Sept particularly with MSA. Take control, be empowered and seek an earlier appt.

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