My sister's doctor (MDS) has said she doesn't know what to offer her. Meds all make her dreadfully nauseous. She's tried ginger, anti-nausea medication, toast, etc. Nothing helps. She has to lay still for 30-45 minutes before it gets better. Then her on time is ever shorter.......30-80 minutes. She's trying to do Rock Steady Boxing when she can make it to the gym. She aches, frequently has leg cramps, her head is "heavy", it bobs incessantly for a good part of the day. She can't sleep more than 2 hours at a time. She's terrified of future health care cuts.
Any suggestions for any of the above? Especially the mouth quivering/ head bobbing? So hard to watch when I can't offer any ideas.
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bibsie
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Keep her going to Rock Steady. There are people that you can hire to transport her if needed. It's a good support system as well as exercise program & she'll meet people that will have similar problems & suggestions. What meds is she taking? I'm surprised the doctor can't give more suggestions. Is the doctor sure it's Parkinson's? You may want to get a 2nd opinion.
Yes, her doctor said she was an ideal candidate and she was anxious to do it. Then she went for all the preliminary tests and when she went for the cognitive/emotional tests she arrived after not having slept, just recovering from the nausea induced by meds and a two hour car ride, almost at the end of her "on" stage, and the psych evaluator didn't tell her how long the process would be. She was tense and unnerved. The therapist had told her initially that she would need to talk to someone who had known her for a long time so I was home waiting for the call. Upon arrival this same therapist said no call would be necessary. Bottom line: she just sort of froze under the pressure and at some point gave up and said she didn't want to proceed any further.
Her MDS (movement disorders specialist) told her not to worry. Then told her that her test scores were too low. Then told her she couldn't take the test again for six months because she might remember too much. Then passed her on to another MDS who took her she was on the first committee and she was in favor of a retest. Then received a call from that Neuro saying she'd discussed the case with the committee and no longer felt a retest would be appropriate. She insisted she'd like a retest but she'd like a new evaluator. Dr. said that was impossible.... She'd have to have the same person. Bottom line: she can't get anyone to help her get a new opportunity. She's in CA and is destitute which doesn't help things. I'm afraid so much time has elapsed (2 years now) that I don't if she will be a candidate.
I have the same ongoing problem with severe ongoing nausea. both my doctor and neurologist are out of ideas. I have been referred to a gastro clinic in case it is not PD related. It is getting worse and have lost a stone in the last month or so.
Sounds pretty grim. I know everyone has a hundred different supplement suggestions, but has she tried magnesium before bed? It might help with the leg cramps and help her get some sleep. She can't hope to function with only 2hrs at a time.
I go to UCSF. Doc told me to increase the amount of carbodopa in relation to l-dopa. Carbodopa can be prescribed separately. Helped me with nausea from l-dopa.
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