Psp

[salem16]

My husband been diagnosed over year has slur words vision cataracts few more falls what to expect next?

[NannaB]

Hi Salem 16. I’m sorry your husband is living with this awful condition but welcome to this site. You will receive lots of replies to your question but I suggest you also google PSP and read the information provided. There are so many symptoms as the condition progresses. Not everyone has them all and folk can get them in different orders. 3 years after diagnosis my husband couldn’t climb stairs or walk unaided or talk. 6 years after diagnosis he had to be hoisted, couldn’t wait bare at all, was doubly incontinent and was being PEG fed. This sounds terrible and it was but things were made so much easier by being prepared. If your home is unsuitable for a totally disabled person, think about it now. My husband spent 2 years sleeping on a hospital bed in the dining room and we converted the garage into a wet room but the wet room was ready just before C could no longer get into the shower. Being a carer is very stressful, as you know, but being prepared makes it a lot easier for both the carer and the loved one. Also think about help you will need in the future now. It’s much easier to cope if you can get help in, professionals, friends, family, as many as possible. Don’t turn down offers of help. It’s much easier to cope if you aren’t too tired and stressed.

Sending a big hug and very best wishes.

XxxX

[rriddle]

Hard to know what to expect next since everyone is different. But the big ones are -- dysphagia (swallowing problems) and wheelchair use (for reasons of safety or loss of ability to walk).

Cataracts are not caused by PSP, as you probably know.

[abirke]

Greetings Salem 16.

I believe Nannab said everything and I would add that that your preparations make it clear your husbands wants for his future more complex needs ie tube fed (PEG), (DNR) do not resuscitate, (POA) Power of Attorney. If you live in the UK you do need to start on you govt help now as it seems to take a long time to get it....If you live in America and he is under 54...he can get medicare otherwise he can get medicaide but like the UK it takes forever; unkike the UK it doesn't give you a whole lot....

BIGGEST SUGGESTION I HAVE FOR YOU , BE CONFIDENT IN BEING YOUR HUSBANDS GREATEST ADVOCATE. GET SOME REST GET AWAY FROM PSP A FEW MINUTES EVERYDAY, EXERCISE AND AS YOUR HUSBAND IS PROBABLY ABLE TO DO STUFF....GO DO IT NOW....

Good luck and God bless you and your husband....

He gives power to the faint; and to them that have no might, he increases strength. Isaiah 40:29

Commit your works to the Lord, and your thoughts shall be established. Proverbs 16:3