Walking very difficult now

[Sfen]

Has anyone found anything that will help with walking. Husband with PSP thinks he wants to go back on Carbadopa/Lapradopa. (sp). (Tried last year). Says he thinks he could move better then.

[Tippyleaf]

Dear Sfen

Some people do find they are less stiff with dopamine based drugs. - worth a discussion with your husband’s clinicians. I believe the other key is exercise- get a physio involved to work out an exercise programme. My husband was still going to a Neuro physio gym until the week before he died. The exercise helped maintain his balance, coordination and enable him ( with help and direction) to get up after a fall. I think it also helped his stiffness and his mood

Love Tippy

[Hidden in reply to Tippyleaf]

Where was your Neuro gym Tippy?

[Tippyleaf in reply to Hidden]

Greetings it is in Peckham Pulse. The GP can refer you get 6 weeks of twice weekly sessions or R did 12 weeks of once per week on a Monday

Hope it helps

Xxx

[Sfen in reply to Tippyleaf]

Don’t know of a Neuro gym here SF Cal.

[Caro2132 in reply to Sfen]

I’m assuming San Francisco is where you are ? Have you tried at the movement disorders clinic in Stanford ?

[SewBears]

Some folks have had success the second time around with Carbadopa Levodopa. I would try again with your doctor on board. If there’s no change after 4 weeks or so he can stop taking it again. In my opinion there’s really nothing to lose by trying it once more.

[daddyt]

Tippyleaf is right about the exercise. I've been on Sinemet for 5 years... it has worked with me. I still have my mobility with walker,cane, walls and furniture. But! Everyone is different. My movement disorders specialist told me that some PSP patients who at first had limited effect with Levo-Carb, had better result the second time around.

[Sfen in reply to daddyt]

What is Sinemet? Have not heard of it

[SewBears in reply to Sfen]

Sinemet is the brand name for Carbidopa/Levodopa and it is to help symptoms of rigidity/stiffness. It can improve quality of life but unfortunately it doesn’t work for everyone.

[Sfen]

Thanks all. Hubby did try the Catb/Lopa twice when first diagnosed a year ago, but I’m wondering about contacting Doc. to try again. He has not been helpful.

[SewBears in reply to Sfen]

I went back and looked at hubby’s notes. When he started Carb/Lopa he slept a lot during the day and all night too. This went on for two to three weeks until his body became adjusted to the medication. I was willing to give the medicine a month to six weeks to determine if it made a difference. It has helped tremendously and I feel very fortunate. I’m just trying to say that if you try Carb/Lopa again, please don’t give up on it too soon.

[Railfan]

If you are having problems speaking with your doctor, you could try palliative care. It's different than hospice in that their focus is on quality of life. The palliative care team can act as the middle man, as it were, between your husband and his doctor to get the quality of life care he needs and deserves.