Recommended questions for neurologist?

[carlam]

I'm taking my 92 year-old dad to his neurologist today. Last time the neurologist had told me that my dad's flavor of Parkinsonism might be PSP-- I think because my dad can't look up. I will ask if PSP can be confirmed. Is there anything new in medication or treatment I should ask about? He's already on Carbidopa-Levodopa and newly on Amantadine which has really helped. He's wheelchair bound with legs virtually permanently crossed. He can still eat regular food--tends to choke when taking a pill with water, though we usually grind up pills and give in applesauce. He is unable to say what he means much of the time and speaks so softly that it's hard to hear him. Any suggestions for questions for the doctor?

[Kevin_1]

A diagnosis is a good thing to have.

If one rules out some of the trial medications there is no treatment for PSP itself.

However referrals to a Urologist might help if there are problems of incontenance.

Also to an ENT specialist if there are swallowing problems.

Treatment of symptoms might make life very much more comfortable for your Dad.

Good luck.

[carlam in reply to Kevin_1]

Thanks Kevin. Unfortunately, my dad can't stand to use the toilet or sit on the toilet. It's one of the worst indignities he faces. When he says he has to pee or poop, not remembering that he can't stand and that he wears a protective brief, the best we can do is a difficult transfer to the bed and then clean up and change the brief. If anyone has a solution for this, I'd love to hear it!

[Kevin_1 in reply to carlam]

I'm sorry I can't help with that one.

We have not got there yet.

 it's tough, wishing you well.

[easterncedar]

Just wondering how the amantadine has helped? My guy was given everything in sequence in the first two years or so after his diagnosis, but nothing made the slightest difference that we could see, including amantadine and carbidopa-l. People have at times suggested here that some of the parkinson's medication may cause legs and arms to seize up, so I'm wondering also if you might want to ask your neurologist about your Dad's legs; maybe the meds are a problem? 

[Hidden in reply to easterncedar]

I agree. Ask about the levodopa medication. There well may be a complication with this. 

[carlam]

My dad took carbidopa-l at several different stages of his disease over the past 8-10 years. We could never see any benefit until started another round last year. His legs were already frozen and he was wheelchair bound by then. In this late stage, carbidopa-l helped with his cognition, but not with movement. When he started the Amantadine, he was almost completely non-verbal and his voice was so soft you could barely hear him. He was also drooling. On starting the Amantadine he stopped drooling immediately and became much more verbal, awake and alert. We can't always understand what he says and he doesn't alway say what he means, but it's a huge improvement. I wonder if we should trying getting him off the carbidopa-l at this point and just go with the Amantadine. I hate to rock the boat, but I will ask. Thanks! 

[easterncedar in reply to carlam]

Interesting. I don't mean to suggest I know anything about the side effects. Just that being so locked up must feel terrible. I hope your neuro can help. Good luck, love, ec

[carlam in reply to easterncedar]

We had a good visit with Dr. P. The doctor said he's never seen any bad side effects from the carbidopa-l at this late stage and actually recommended we slightly increase the low dose my dad is on to see if that would help unfreeze the right leg from crossing the left. He did say to watch for skin cancer--melanoma. He said we could increase the Amantadine, but it might cause prostate issues so didn't want to do that. He also recommended artificial tears for my dad's eye irritation due to not blinking. 

I asked about the PSP diagnosis and he said it was because my dad had falls and dizziness early in the disease and had a possibly wrong diagnosis back then of Menieres. 

[mthteach in reply to carlam]

Our doctor said that some PSP patients are misdiagnosed. My man has no eye movement problems other than watering all the time. He is being checked by another doctor to see if he has MSA and not PSP.