Recantly diagnosed

[allotmentartist]

Feeling really scared my husband was diagnosed with psp but what does that mean for the future help im scared x xxx

[NannaB]

Hi allotmentartist, I'm sorry your husband has received this diagnosis and I can well remember how scared we were when my husband received his. The future will be a bit like a roller coaster with ups, downs, peaks and troughs and times of relative stability. If you haven't already done so, I suggest you contact the PSP association for their literature and Google PSP where you will find a lot of information. It will tell you what to expect in the future but you are not there yet so focus on now, do all those things you have planned for the future now before the condition progresses too much. The diagnosis probably feels like the end but it isn't yet. There can still be good memories to make.

It's a good idea to think now about your living conditions, making adaptions before they are needed if you can in the home you are living in now. You may need to have a hospital bed at ground level with wheelchair access to a wet room and access to the outside via a ramp. if you are in the UK, the GP should put you in touch with the neuro rehab team. The occupational therapist will advise you of equipment and help available when it's needed. Other professionals will be involved as well. It will probably all seem overwhelming now but things do fall into place and there is a lot of help out there. As and when you have particular queries and worries, there are plenty of lovely folk on this site who will share their experiences and lead you in the right direction.

When you tell friends and family of the diagnosis they will probably say if you need help, ask them. I didn't ask at the beginning and some drifted away but I found out they want to be asked and feel helpful as just visiting, some didn't know how to react. So ask away, keep your friends, invite them round for coffee or a meal/takeaway, go out with them and although you won't feel like it now, try and laugh as often as possible.

Sending you a welcome to the site hug.

Nanna B

[allotmentartist in reply to NannaB]

Thank you nanna b I think I just hada wobble ok now

[Amilazy]

Hi allotmentarist sorry to hear your news now begins the struggle. First thing is you will both be confused and down, but you need to get up and start fighting the condition. Unfortunately PSP is a war of attrition which only gets worse and has one outcome.

While he has function, able to read, write and speak you both need to get things in place to help later. Many posts on the site if in U.K. I and Kevin1 have some useful pointers. Here are a few:

Medical professionals: inform your GP get referrals to OT (helps adapt your home or provide aids as needed), physiotherapist (exercises), Speech therapist (often referred to as SALT team), local gov adult social services, district nurse team. They will need information on PSP available from PSPA.

Finance: get your finances sorted. Claim benefits if under 65 get PIP forms are traps so get help from CAB, social services benefit shop. If over 65 Attendance Allowance again get help to claim. When in place you can claim Carers allowance.

Legal: arrange for Power of Attorney both types easier while he is reasonably cognitive and coordinated. Can be arranged now and kept for later as required. Sort out your wills at same time.

Memories: Do things now. forget about the future: exotic holidays, long distance family visits do now get plenty of photos, videos of both of you. Good memories help in the dark days to come.

End of time planning: check out local nursing homes (not residential or care homes) find one you both like and monitor it if they do respite try them (probably won't as nursing beds like hen's teeth). Get GP to refer you to local hospice they will usually provide daycare which gives you respite. Plan his funeral (this is hard but essential as towards end he will not be able to communicate).

Many more but best advice is keep reading this site the community are all going through the same road caring for a PSP fighter.

Good luck to both of you Tim

[allotmentartist]

Thank you for your message ready to deal with whatever comes now

[allotmentartist]

Thank you for your kind words

[doglington]

Its terrifying at first.

This site will be really useful but do remember that you won't experience everything . Its a mixed bag.

Don't panic. Tim's advice spot on. Especially making the best of now.

Let us know more about your situation.

love, Jean x

[Georgepa]

Fear despair ,anger and just a little laughter every now and again ,they will all be there and we will all be here , one huge back up team that will respond whenever you have a need . You will certainly not be alone .

[Katiebow]

It's hard to digest when the diagnosis is broken to you, the neurologist who informed us didn't really explain the condition just said it was progressive. All of the knowledge I have gained has been from the Internet, PSPA and the lovely folk here. My husband was in denial for over a year and that made things difficult as he wouldn't discuss it. We have now talked about his wishes re treatment as the condition progresses. We have just had outside adapted and wet room installed. Psp can make you feel quite isolated so you need to work hard keeping in touch with friends, I have only just started to accept offers of help from friends and glad i have as I know it will be invaluable. Getting the right help from professionals can be tricky and I found the hospice great at getting the ball rolling. You will find inner strength you never thought you had. Try to get out and enjoy yourselves as much as is possible and make memories to cherish. When you read some posts on this site it will worry and upset you but help prepare you for the future, I don't know what I would have done without it. I'm sorry you had to join us here but you will always feel welcomed.

Love Kate xx

[steph02]

I was diagnosed about three years ago and still feel reasonable healthy and quite independent I think that I am quite lucky in some ways because the progression has been so slow so please don't write him off completely. I feel that I have falling a bit too much recently { about 3 times a day )

Although most off these are controlled it is a bit scary for my wife to see and she mentions things like wheelchairs to keep me safe . -no way ?,