steve and psp

[nightmare1]

hi steve my husband has been diagnosed since 17th december 2011 he has been having falls since may 2010 he was in hospital last xmas 2010 for broncial pneumonia that was scary returned in march suspected chest infection steve has problems swallowing ,talking, often falls, has lost 3 stone in weight its just heart breaking watching him and not being able to help at the moment he has been in hospital since 17th decmber for chest infection its there they diagnosed him today he has been transferred to papworth because of his breathing its a lot to come to terms with

[jillannf6]

hi lynn

i have psp being diagnosed in dec 2010

but your steve's progression seems so quick compared with mine

i am falling a lot but am sitll upbeat about my situation given that i know now what is wrong iwth em and what my problems are

BUT you need a lto of support

r u getting help from a social worker ot physio etc as , hopefull, hwen he comes heom he iwlln need some "care" in place

??

read my blogs and those of other son the site - they are informative and u r not alone

love jill

[nightmare1]

hi jill

so sorry to hear your news yes its hard work looking after him now been diagnosed does help alot at least we know what we are dealing with yes i have got advice from alot of people and have contacted a solicitor we have known each other for 4 years and got married in july 2011 as seen in photo i have never wanted an easy life but never thoght it could be that bad never mind when reading other peoples story you realise you are not on your own wishing you all the best x

[kay1]

nothing prepares you for a shock diagnosis like that - at least you know what you are both dealing with, please get all the help that is on offer, you must keep well to care for Steve. Although PSP is rare, there is quite a network of support all round, I find it comforting to know that someone will listen.

x

[SuzieQ]

Sorry to hear your news. All of us on this site are either sufferers or carers affected by this very cruel illness. I rememeber when my hubby was diagnosed just over 18 months ago. It took us some while to come to terms with when we realised just what lay ahead of us. The main thing is that you and your hubby try to retain a sense of humour. Tony and I try to laugh at least once every day - (sometimes engineered by me) as I know it helps Tony to laugh (me too if I'm honest)! You will have days when you can be positive and there will be days when you probably both feel that it is all too much to bear. Everyone on here has experienced these feelings, and with our help and the help that is on offer from Social Services, etc. etc, you will get through it. It's no use pretending it's easy - believe me it gets more difficult, but if you feel down and need any sort of advice, contact your PSP nurse. Ours is Kat Haines and she is a very good listener and very willing to offer help and advice when you are having a bad day.

Keep your chin up, try and stay positive and whatever you do, take care of yourself. Look back at all the happy memories you and your hubby have and try not to look too far into the future. Sadly, until treatment or a cure is found for this heinous disease, we have to carry on the best way we can.

Love and hugs to you both and take care.

God Bless................SuzieQ xxxx

[nightmare1]

thanks for all your kind wishes and info xx

[Kathy]

Hi,

Don't really have a lot to add to the excellent advice the others have offered but just wanted to welcome you to the forum and let you know that we're here for you. Whatever you're going through there is always someone here who will offer advice and support or even just a "virtual" shoulder to cry on! Do join the PSP association because they will give give you a list of local support groups and all sorts of useful printed information about the disease that you can hand out to your husband's Dr's and carers.

You are not alone

Take Care

Love Kathy xxx

[Kathy]

The website for the PSP association is

pspeur.org

It can put you intouch with the PSP nurse in your area (as mentioned by Suzie)

xx

[jillannf6]

hi lynn

i must say also that kat haines i s a superb contact and has lots of good advice and iwll ontact people and get thtngs done!!

love jill

[nightmare1]

ive just got back from papworth he did a sleeping pattern they have given him a bipap to wear every night they are keeping him a couple more days thanks for all your help xxx

[sue2010]

Hi there my dad died of PSP 3 years ago, it was a very tough time and my dad was only diagnosed approx 6months before he died. His condition progressed very rapidly. I found that I put parts of my life on hold whilst my dad was ill. the way in which families live with this illness is very hard and I don't think people understand just how tough it can be. I found it difficult to ever switch off. On the up side since my dad has passed away I have had my second child, a little boy. I miss my dad and know he would be proud of how we have as a family have moved on, but will never forget this terrible illness. hope you can keep ur chin p in these difficult times.

[nightmare1]

thanks sue its some times so very lonely you feel as if you are on your own and as you say you cant switch off i work in a care home 36 hours a week so when steve was here it was like 24 hours a day in a strange way i miss itas you say as well the families dont seem to be there to shoulder you im lucky to have friends out there whom listen and understand me im sorry for your loss your dad must have been young my husband is 52 i will take your advice and keep my chin up xxx

[LesleyB]

Hi there

I haven't been on for a while so just catching up with the blogs. I am so sorry to hear of your news, and my thoughts are with you as I know how difficult this condition is for the person who has it and the loved ones who care for them. Take care of yourself and I send my love to you and your husband

Love

Lesley x

[nightmare1]

thanks lesley i will send him your regards i went to steve at papworth they are trying to sort out his breathing the doctor said it was connected to psp at least they are looking after him im now back at work tonight i work in a care home 36h a lynn

[nightmare1]

hi has anyone experienced trouble breathing my husband does not take enough oxygen in and too much carbon dioxide left he is at papworth they have tried a bi pap but they are struggling to lower one and higher the other he said its connected to psp messages are not sent from the brain to function his lungs normally hi to you all lynn xx