So do we have a bad neuro then? We are dealing with the PA (the MD is on sick leave). Before the MD left, he for no reason (that we can tell from his notes, and my mother cannot recall a reason, and the PA doesn't know) bumped up her Sinemet by 33%. Within two weeks after her increase, she started having arm pain, new problems sleeping, etc.
During multiple visits and back and forth and many suffering months, the neuro discounted that the Sinemet was to blame and looked at diet, did new blood tests, prescribed sleeping pills, prescribed amantadine, etc. All of this failed to do anything about the new symptoms and the amantadine made things worse. Then when she had no other option, and at my insistence to do *something* to lower the meds, she ordered to reduce dosage at 50% over 3 weeks.
I asked the neuro about this rate, because the book that you say I should ignore would have me believe this is a very fast rate and potentially dangerous. The PA gave us no indication of any problems to be aware of or any dangers as a result of lowering the medication. The book indicates that people coming off the meds will experience withdrawal, fatigue, new balance issues, etc. The neuro PA did not advise any of this. So I don't care if the rest of the book is nonsense, it seemed to very descriptive of what my mother is experiencing in that regard. When I said that my mother was feeling really awful, and had some very scary moments coming off the drug, the PA just implied that you need to be aggressive to see results so you know what to do. This is always given as justification post facto as necessary to help them formulate their expert opinion. It's a bit scary. What else will they not tell us that will nearly or otherwise potentially kill my mother so that they can continue their fact finding? I think my mom and I will stick with her slow walk thank you.
Sorry to vent a bit. I'm sure these drugs can be beneficial. But I'm not sure they are doing much good for my mom.
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Originally Posted by lindylanka
I tend to agree with Soccertese. I started replying to your other posts several times, and found I could not, because really what you need to be doing is following the advice of a really experienced MDS rather than this e-book.
I have only ever been on sinemet, have an on/off diagnosis like many people do, because PD is hard to diagnose, and am sinemet responsive. I did not find the e-book helpful.
What I did find helpful was the advice of people in this forum, who told me what to expect of medication, and taught me how similar the side effects are to the symptoms of PD, and how to look after myself.
My personal advice to you is either take the neuros advice and give your mom time to settle, because changes do take time, sometimes quite a long time - there are no quick fixes - or get a second opinion from someone experienced.
There are other ways to go, but they are not for the faint-hearted, or in my opinion, the really elderly, as though the are also replacing dopa, they very much do that by trial and error, and take a lot of time.
There is plenty to say that alternatives are helpful, in terms of creating more ease with ones own body, or keeping it moving to help mobility. I have seen little to say that alternatives make a difference to the core problem. Keeping your mom as active as possible is a good way to go, the one constant that I hear is that people improve if they are more mobile. Even a little more mobile helps.
Your real question is does your mom have PD or not. The people who can ascertain that are neurologists, not acupuncturists. On the other hand if you are looking to help your mom feel more comfortable an acupuncturist could possibly be helpful. Reading this e-book is not really an answer or a help. I have to say I went through all the same kind of questions as you after reading it, simply put it made me feel very scared and anxious, without offering me any solutions.
I wish you the best in helping your mom have a better quality of life.
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