What to do next

[Bunkers69]

Hi my name is Shaon, my husband has recently been told he has PSP. He has a hard time walking , I find it difficult at times for myself , I'm scared of this for him

[easterncedar]

Hi, Sharon. It's a scary diagnosis, certainly. I remember how it threw us into a sort of shocked stage at first. I do sympathize. You have come to the right place, though. This is a great community, very supportive and helpful. Where are you? I'm in Maine, in the US, but folks are here from all around the world, so there's usually someone in your time zone to respond. Ask, vent. We are all in this together.

Peace and best wishes,

Sarah

[Nanny857]

Hi Shaon, welcome to your new 'online' family but sorry you had to join us in the first instance. Yes, the news that your lovely husband has PSP is very daunting but here you will help, information and the greatest support and friendship. Have a query, someone here will most likely have been down that road and can help you. Feeling scared, frustrated or even angry, let it out here, nobody will judge you as we have all been there. But the one thing that is important, is that you and your husband do as much as you can now and make lots of lovely memories that you can draw in when times aren't so good. Sending you lots of love Nanny857xx

[aliciamq]

Next is keeping yourselves healthy and safe. No glass vases sitting around. We decided early on to take it easy, one day at a time, and go with the flow of our busy family till we can't any more. After 50 yrs of running around we are home and growing closer than ever. Being home has brought family to our door more than ever, too. We will be turning 70 this fall and have three kids(a son, DIL and a SIL) turning 50 at the same-ish time so look forward to big time celebrating. You didn't mention "falling" ~ that will be your biggest problem and you'll need to fallproof your home.

[Hidden]

Sorry to see so many new members,Glad you found this site,and welcome to a group no one wants to belong to,you will find a wealth of first hand knowledge and experience.Rant cry,scream and ask away.You can do a search by going to the top right hand of the page ,under the more tab.

Dee in BC

[raincitygirl]

Hello Sharon and Welcome

You are probably in the "shocked" stage when you first find out about this disease and can't believe it's happening to you. You (together) wonder "what did I do? why did this happen to me?" There aren't any answers to that one, so just don't waste time worrying! It's a tough trial but you can get through it. We are here to help you. Please feel free to share any details you want about how you found out about the diagnosis. And if you have any questions about how to find information on this site, we'll be happy to help.

Chat soon

Anne G.

[Kevin_1]

Hi Sharon

I echo the welcomes and advice above.

I remember well the trauma of trying to come to terms with the news when we got 'our' diagnosis.

My responses were, heartbreak, how will I cope, what happens now, I will never cope with this and what on earth do I need to do now?

In time I adjusted, learned about services and how to access them and found I could cope. I think my response is fairly typical.

The diagnosis is not the end of good times to be shared.

What country are you in? That makes a big difference to advice you can get here.

Meanwhile, if your not already aware of it, have a read on the PSP Assoc. site. Its very good indeed. The "For professionals" is very readable too. If you are in the U.K. their advice line is superb and you may well find they have a worker in your area who might be able to visit you at home and give advice, support and advocate for you.

pspassociation.org.uk/

Wishing you both the best and I hope you come here as and when you need. The experience here is bar none... and you will have the ears of those who don't judge and who understand.

Best to you both

Kevin

[JantheNana]

I remember when my husband (now deceased) was first diagnosed with PSP after 9 yrs of Parkinson’s diagnosis.I said to the Dr “what difference does it make what it is called?” his answer was “It does make a difference”,but did not explain why.I started reading all I could find about PSP as I had never heard of it.Bottom line is learn all you can about what to expect and take one day at a time.Take care of yourself in the process and love him with all your heart.

[Bunkers69 in reply to JantheNana]

Thank you

[Hidden]

These are things that may help you if have not already done so.

Please get your health directive in order,DNR ( yes or no) peg feeding ( yes or no) any and all financial matters dealt with.

Do your research,do ask here,so many knowledge people here with first hand experience.

Try to stay ahead of this disease, meaning that look for resources that may help with,shower chairs, wheelchair, hospital bed and even a shower and or location of sleeping area if you are in a two level home.

[Bunkers69 in reply to Hidden]

I'm prepared for that, thanks