Living with Parkinson's Disease - Meet others & come say hi

Hello @redkolar and welcome to the PD support group on Mayo Connect. I see that @sillyblone has responded to you and shared her own experience about PD in her family.

I am pleased that your wife is having more testing to rule out other disorders. It is interesting that you mentioned that she has responded to Sinemet. Did the doctor indicate the exact reason for the lumbar puncture?

What are your wife's most difficult symptoms at the current time?

@hopeful33250 Because the MRI Showed white brain matter the neurologist completely ruled out PD wanted to pretty much take her off senemett which gives her movement without it she wold have no movement at all. If she doesn’t have PD what does she have neurologist doesn’t know. The tap is to maybe relieve
pressure and what might be in the spinal fluid At this time she can hardly walk and eat on her own. After 40 years of marriage she can still yell at me since the day we were married. I believe she has PD she has 99 percent of the symptoms responds to senemett and over the years the white matter developed .We meet the neurosurgeon next week to see what he has to say

Thanks for your reply .Her spinal tap is scheduled for next week,I want to see what they might find out only for her but also the genetics for my daughter and grandson. I will keep in mind about a movement disorder specialist.

@redkolar
Unrelated to my personal med problems, my wife had serious movement disorder problems a while ago with me as her caregiver, I could have save us both q lot of grief if I had taken her to a movement disorder doctor earlier. Note that there may be a significant wait time to get in.
Schedule ASAP.

@hkscrush Thanks guys for reaching out. My wife’s new neurologist was probably a teenage when my wife was diagnosed by clinical standards. She said after a year my wife should’ve had an MRI which isn’t used to diagnose PD . I know just because you have all the PD symptoms you may not have PD but what is this look a like disease.I know things have changed over the years but there still isn’t a test or procedure to diagnose PD..

We had an enlightening day ,we first met the neurosurgeon that will be doing the lumbar puncture to remove excess fluid that was seen on the mri.After a few days she should show more movement if no improvement a follow up procedure which is a little more invasive to keep removing the fluid ,The surgeon said we should be able to to get it done by the end of the month.We then met an neurologist that works with the neurosurgeon and told him what my wife’s neurologist treatment were and he was really skeptical of her diagnosis by the MRI alone no DaT scan or a skin sample that is highly accurate for diagnosing PD which he is setting up for my wife .Then we met the Physical Therapist and spent an hour working showing and explaining why her neck is hunched over and what is causing some of her inability . The PT questioned the orthopedic surgeon response theirs nothing can be done I noticed a slight improvement of my wife’s neck tonight after only an hour with this PT. He not only touched on the physical but also how important the mental aspects of physical therapy. All in all I. got more positive information and hope this morning than the last 20 years dealing with with PD . You have to have the right people in your corner .
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@redkolar
I am so glad you are getting good answers and physical therapy for your wife. I was referred for physical therapy shortly after my diagnosis, and it really helped me to move with more confidence. I still practice many of the exercises.

Has a DAT scan been scheduled yet? Will you continue to post with updates?

@janboke
Have any medications been suggested to deal with the tremors?

@hopeful33250 min neurologist put me on AMANTADINE 100 mg capsules. It’s supposedly a light dose for tremor. I was just diagnosed recently. It seems to be helping some.