My wife with PSP

[Sunnyday68]

Hi everyone .My wife who is 78 was first diagnosed with msa 2years ago.Last month tha5 had changed to PSP.She has slowed down tremendously ,and cannot walk without assistance,and then just a few yards.She coughs a lot especially during drinking times. She has come off her benoldopa pills as was thought no benefit.She is now taking q10 and grape pills.I am not sure with any benefit.She eats well and sits to watch tv all day

[Marie_14]

Hello there. Welcome to the place nobody wants to be! However you have struck lucky as the people on here are so good. Everyone learns from everyone else and there is a lot of knowledge on this site. More than you will get from a doctor unless you are exceptionally lucky!

My husband was told he had PSP with signs of MSA. He was very much like your wife and just wanted to watch TV all day. Until near the end when he just didn't want to know about TV or the radio.

What we always say on here is to get the person moving. I don't know how much of a problem that would be for you? It does appear to be true that exercise helps enormously.

If she is choking when she drinks she needs to have a scan to see how her swallow is. It sounds as though she probably needs thickener in her drinks. If she doesn't see somebody from speech and language therapy (SALT) then she needs to see someone as soon as possible. You should have carers depending on what her needs are. My husband had 2 four times a day.

That's just for starters! Anything else you need to know just ask. By the way what country are you in because that makes an difference too.

Marie x

[Sunnyday68 in reply to Marie_14]

Appreciate your reply.So sorry for your husband.I am tryingliquid thickener with mixes results.Also q10 in liquid form.Its all very challenging,but she does laugh a lot,a sort of mixture of laughing and crying,which must be a good thing I suppose. Anyway thanks for your feedback. Chris. Oh I live in the uk.

[Hidden]

Welcome sunnydays68

It sad to see so many more join our club.

Wealth of first hand knowledge here.Ask away when your ready.I'm a caregiver of my husband who has PSP for 8 plus years.

Dee in BC

[enjoysalud]

Hi, I think that is encouraging that though she is having difficulty drinking she has no trouble eating.

I agree with Marie_14 that a swallowing test would be helpful. The test will give information as to whether what she is taking is NOT going to her lungs. Food/drink that goes to the lungs causes aspiration pneumonia.

Are you the sole caretaker or do you also have help?

I'm glad that this second posting you have taken to heart the suggestions to share more about your situation.

[Sunnyday68 in reply to enjoysalud]

Appreciate your reply.We are due to see the neurologist very soon ,so shall bring the swallowing matter up.Yes I am chief carer thoughI Have help six mornings per wk.My wife laughs a lot in a different way than she used to,so this some relief.nice talking Chris

[Marie_14 in reply to Sunnyday68]

Chris

The laughing/crying is a symptom of PSP. Nothing that can be done about it as far as I know but tell the Neurologist when you go. There are a lot who are on Q10 some say it helps others that it doesn't. I don't think it can cause any harm anyway. Have you got a social worker and an OT? If not you need them. When you see the Neurologist tell him you have no help!

Marie x

[LuisRodicioRodicio]

Hi Sunnyday!,

I am sent by internal-private mail our experiences with PSP hoping could be usefull

Hug.

Luis