Reflections

[Peter3]

It is about a year ago my husband came home on leave from the USA. He was already receiving treatment for depression and had had some neurological investigations which had been inconclusive at this stage.

When I picked him up at the airport, just one look told me he was not going back to work. He had lost weight, was very disheveled and totally disinterested in anything. Four months later we received the diagnosis of psp.

A year on there has been a continual decline, which sadly recently has speeded up. Over the last month he has gone from being relatively able to feed, wash and dress himself to requiring help with all of these activities although his abilities vary from day to day.

He has also become far more irascible than previously and this makes life at home quite difficult for everyone. He can be very rude at times to people, but I know this is not my real husband, it is the psp talking.

We have been fortunate in that we do have a supportive continuing care team and we have what is required to meet my husband's needs at the moment. However, the future fills me with dread both for my husband and my family. Celebrating the New Year for us was good, but it also marked the end of his first year of being home with psp, albeit we think he has had psp at least 3-4 years. Psp really does take over doesn't it?

Best wishes to you all for 2012 and may we all find respite at times.

Peter3.

[jennifer-nind]

I am not sure what area you are in, have you joined the PSPA? They are a great support and have support groups etc.

Yes, PSP really does take over your life! Been there, know what you mean and how you are feeling.

Have you posted any comments on the PSP forum site, that is a good place to let off steam and ask questions etc.

Jenni

[Peter3]

Thanks Jenni for your comments. I live in the South West and have joined the PSPA and been to one group meeting so far. Good advice as I found both very helpful. Thank you.

In the early days I use to blog quite a bit, but recently have been quite quiet. I must get back into the blogging habit!

Peter3

[dorothy-thompson]

My husband was diagnosed with PSP in October 2010 but has probably had it for over 5 years. His neurologist at St Thomas' London told us last year that there was nothing the NHS could do for him. He is on a drugs trial for Davenutide, nearly 4 months into it - no obvious signs of relief apart from a stronger voice at times. I am his sole carer and the only other "help" we get is his Blue Badge so I am at a loss to understand where everyone else gets their help and support from!

I am happy for you and wish you well as "every little helps" as they say.

dorothy-thompson

[jillannf6]

hi dorothy

i applied )twice) and finally got DLA (equiv woudl be ATTENDANCE ALLOW IF YOUR HSUBADND IS OVER 65)

IT enables me ot hav ae a carer comign in more and more as i fall less when she is around

she take sme to appts etc as i can no longe drive

My friend and partner IAN will be movign in wiht me into the ground floor flat when that happens but he will nto be my sole carer - he will be a support 24 /7 but notin a practical wy

I have had 2 re refer myhysel to SALTS/. OT/ PHYSIO SOCIAL WORKER all of which wer usggested by the neurologsit who gave me hte diagnosis

and i find the PSP nurse isi great at gettign things done fo rme

And i kknow ht elocal councils r so shrot of funds htat everything is cut back

especilaly i n htis part of hte world NW England

so ther eis help out ther for u AND your husband

respite care ? you do seem to need it as 1 person siad the onlyh person who cannot ge tit it si the patient

true

but smile

love jill

[Peter3 in reply to jillannf6]

Dorothy, I am sorry to hear you have had difficulty getting help. What I found very ueful was attending the PSP conference and then following the advice from the OT, Physiotherapist and the medic who spoke. They all emphasised the need to ask early for assessments.

Another piece of advice was to ensure that when filling out forms for DLA and any other benefits you or your husband maybe entitled to, was to describe the worse days not the better ones.

My husband's GP was very receptive to our requests for referrals to the other professionals. We did have to have 3 referrals before the OT came and did an assessment, but the hand rails and rails for the bed arrived the following week and were fixed.

My mantra now is to ask and keep asking, the worst that can happen is to receive a no.

My husband had also been put forward for the davenutide trial, but 24 hours before we were due to travel to Brighton we were informed enough people had been recruited to it. That was just another blow one of many for last year.

I hope your husband benefits from the trial. Do keep trying for any help you can receive. Although I talk of family, in reality I am my husband's sole carer and he refuses to have anyone else apart from our daughter when she is at home.

best wishes

Peter3 (Mary)