Starting on the journey, what to expect?

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NewbieWife
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Date Joined May 2017
Total Posts : 1
   Posted 5/19/2017 8:01 AM (GMT -6)   
My husband (age 79) has just been given a diagnosis of Parkinson's based on symptoms, history of symptoms, and family history (2 brothers with Parkinson's). He has no tremor, but has been having increasing problems with balance and gait over the past several years; slowed movement; some stiffness on one side (leg, shoulder, hand); and bent over posture. He's also had a lot of night-time waking up, which he attributed to need to urinate; has recently had prostate shrinking surgery which is helping with that. However, he's developed extreme day-time fatigue since having that surgery. Neuro started him on sinemet 25/100 1/2 tablet 3X/day for a week, as of yesterday, up to one tablet 3X/day. I know it may take a while for the sinemet to take effect, to get the right dose, etc., but he's seen absolutely no change at all either in observable symptoms or how he feels. He figures he'll give the full dose a week, then call neuro if still no change. I know sinemet is supposed to be the "gold standard" for Parkinson's and that if it doesn't work, the symptoms may be due to something else. One of his brothers has tremors, and the effects of sinemet were pretty immediate; however, his PD has progressed to the point that he's mainly wheelchair-bound and has had to go into a nursing home as he has no spouse or family. Other brother did not have tremors, but did have a lot of problems with gait, freezing, lost his voice, swallowing difficulties, and ultimately passed away, but sinemet did help in the early years. Husband's neuro has recommended he get genetic testing/counseling, given the family history.

We asked neuro about PT, as I'd read about the specialized training for PD, and he did refer my husband for that (LSVT); husband had first meeting with the PT this week, and it loks pretty encouraging. He'll start the program in a couple of weeks (it's 1 hour/day, 4 days a week for 4 weeks, with homework on the days you don't go in). https://www.lsvtglobal.com/patient-resources/what-is-lsvt-big

It's almost impossible to get a neuro appointment where we live, and family doc had to pull strings and beg to get him in before November. We're thinking that if the sinemet doesn't work, it might be worth trying to get to Lahey Clinic (Boston) for a consult. Both brothers were seen there for a thorough work-up, and had annual visits there with follow up with their local neuro. Has anyone here had any experience with Lahey?

So much to think about. Even though we've suspected PD for a while, it's still hard to get our heads around. Husband is very depressed about it, having seen his brothers, and I'm none too happy.
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