Starting on the journey, what to expect?

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NewbieWife
New Member


Date Joined May 2017
Total Posts : 2
   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.

lizzy4451
Forum Moderator


Date Joined Jun 2005
Total Posts : 418
   Posted 6/10/2017 12:45 AM (GMT -6)   
NewbieWife, Welcome to Healing Well. Sorry to be so delinquent in replying, but I've been without internet access for a couple of weeks.

You mention Sinemet. Yes, it is the gold standard. Responding positively is a good indicator of PD. A poor response can mean it's not PD, but that's not true for everyone.

You ask about Lahey in Boston. I don't live in that area and not familiar with the program. Hopefully someone else with info will respond.

You mention Lee Silverman Voice Technique (LSVT) and wonder about other PD programs. I think the LSVT folks and BIG and LOUD folks may have combined - not sure. Initially LSVT was voice only and Big and Loud was more body movements/exercise (?). Another exercise program is Rock Steady Boxing (RSB). I have done RSB for 10 years and believe it has slowed my progression. Hopefully others will respond with their experiences.

Finding a cure certainly is the most desired option. Until then improvements in medications and side effects are continuing to happen. People such as yourself who agree to genetic testing provide information about the disease in hopes of improving other's lives.

As you undoubtedly know a movement disorder specialist (MDS) is the best option. An MDS is a neurologist who has specialized in movement disorders like Huntington's and PD. Best of luck finding a new PD medical program and possibly an MDS. I hope the LSVT program works out for you and well.

Best of luck,
lizzy4451

Parkinson's Disease Moderator
Diagnosed with Parkinson's disease 2001. Meds: Requip XL 24mg, Amantadine 200 mg
Life is a dance. Don't sit it out. ---- Jackson H. Brown

NewbieWife
New Member


Date Joined May 2017
Total Posts : 2
   Posted 6/10/2017 10:53 AM (GMT -6)   
Thanks for your response. The neurologist my husband saw, who made the diagnosis, is a movement disorder specialist. The PT who evaluated him said he was a good candidate for the LSVT BIG program, so my husband was encouraged by that as he's always been a very motivated exerciser.

Since my initial posting, my husband has unfortunately had a new development that has suddenly rendered him almost unable to walk, and he therefore has had to postpone the LSVT BIG program he was signed up for. While doing some perhaps too vigorous stretching, he pulled something in his right leg/hip (his "good" side) and now has marked sciatic symptoms--pain, difficulty weight bearing, some numbness in the foot. He did get a lumbar spine MRI and it's not a disk problem. They also did brain MRI to rule of stroke or other more dire neurological cause, and brain looks fine "for his age." (We do know Parkinson's doesn't show on MRI.) Right now, he can barely walk even with a walker and can't do stairs at all. We'll be renting a wheelchair and trying to rent a ramp so he can get out of the house; it's only about 5 steps, but he just cant do it. Before this happened, he was walking a mile a day as recently as 4 weeks ago and doing a lot of in-house exercises.

The neurologist tried upping the sinemet to 2 tablets twice a day and one for the third dose, and it made my husband feel awful, super tired, and still had no effect whatsoever, so he's back down to 1-1-1. Now that we have MRI results, ruling out other things, hopefully the neuro will reevaluate and change meds. Sadly, my husband may be in the 15% not responsive to sinemet. Right now, it really doesn't look as though he has any of the other syndromes that have Parkinsonian symptoms but don't respond to sinemet such as MSA

Our family doc. did get hubby an appointment at Lahey, but the earliest they could get him in was October. However, he's on a cancellation list in case something comes up sooner.

We're hanging in and hoping for better days ahead if this immediate situation with his right leg can get addressed.
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