Psp person

[Debbieann]

Just joined, but been following for a few weeks, my husband got psp, wish we had a psp 'person' somebody, anybody!

[Julieandrog]

welcome! ring the psp association they will let you know what is in your area and if not referred to a neurologist get that done by your gp asap, you will grow in confidence with this vile illness everyone here to help x

[abirke]

I'm so sorry you have had to join this site, but I'm glad you found it. Who was your husband diagnosed by? And if you are in the UK, you might find ppl to help you. There is a site CurePSP.org It is a very good site which has a packet that they will send you with lots of information...you may need this packet for your dr's who may be VERY unfamiliar with this disorder. Please look into that site PSPA is also excellent! How long have you seen strange behavior and when was he diagnosed? Rmemeber that you are not alone. There are three areas that you must keep healthy: 1. naturally the physical ask your dr for good PT, OT and speech therapist....If he is over 50, he might benefit from an internist then. But not only does your husband need support, but so do you. Make sure you get enough rest, it would be good to go to the gym strengthen your core learn how to lift, and both of you keeping physical will be good for the mind...leading me to #2 The mental. Cry if you want to this site is a great place to rant. Remember it is not his fault...nor is it yours....It just is...keep well rested , a tired mind is a miserable mind. rely on others for help which leads me to #3..Spiritual well being. If you are a praying person do so...he can take what you want to yell at Him...He's heard it before...but He will be there for you, give Him a chance...Not everything will be horrible, so go ahead and thank God for the small stuff...that helps your mind too. And though life is no longer normal it is not bad or impossible. You will see how strong both you and your husband are; you will now create a new normal.

Again I'm sorry that you are here, but know that we are hear too to support you!

Take care of yourself,

AVB

The Lord is good, a strong hold in the day of trouble : and He knows them that trust in Him. Nahum 1:7

Weeping may come for a night, but joy comes in the morning

Psalm 30:5

[Amilazy]

Hi Debbieann I agree with the earlier replies as you are in UK contact PSPA who will be able to provide information packs and depending on where you live support group meetings. You are now in for a busy time you need to get your needs sorted

1: medical support - make sure your GP is aware of PSP info from PSPA can be given to them best item is a business card sized summary card to give to all medical social services staff. Your neuro team that confirmed PSP should arrange contact with OT (occupational Therapist), physiotherapist and speech and language team (SALT) if not heard within a fortnight get your GP to chase them up.

2: Financial support you and your husband are entitled to PIP (if under 65) or Attendance Allowance if over 65, carers Allowance once PIP or AA confirmed. Suggest you get assistance in applying, though you can do it yourself the authorities have their own interpretation of information, suggest CAB or Money Advice, they will also support you through any appeal process.

3: home support - your OT will be able to advice on adaptations to your house that will be needed, if you live in a house with stairs PSP affects climbing them and increased risk of falls, it may be time if possible to down size to a bungalow but be advised by OT before doing anything. When needed carers to dress and wash and night sitters can be arranged through your GP but usually only when mobility badly affected. You need time for yourself contact Carers Trust website will give nearest to you they can provide a sitter for a couple of hours a week so you can do the banking, have a coffee meet friends. Used to be called crossroads.

4: Memories - PSP robs the sufferer of so much fairly quickly (a couple of yrs) it is best to do things now that you were planning for retirement, go on the exotic holiday get the good memories for the dark days to come.

Best wishes Good luck keep reading the site and get your hubby to as well.

Tim

[Debbieann in reply to Amilazy]

Thanks, medical support seems non existent, not seen a GP since my husbands initial consultation, we went to the local(23 miles away) support group last month, will have to see if that is any support! Got tha AA and careers, downloaded the form and filled it in!! Was able to do that without required help from medical profession. My husband still early stages( although that bad enough!) it just seems there's no help! We just seem to be fobbed of with physio etc will be in touch but nothing happens,

[Amilazy in reply to Debbieann]

Sorry that is the norm it is up to you to fight for everything, but if your GP is unhelpful or will not understand the demands of PSP you need to find another and quick. Well done getting AA and CA but if turned down you will need help appealing.

Until you get Continuing Health Care CHC you are the coordinator of care for your husband, try and get the Local Authority Social Services to help with getting assistance but be aware you will need to pay for some of it. They may also have day centre for keeping him connected and allowing you time to do your own things.

Try to contact your local Carers Trust they should be able to help or at least an ear to drain into.

You need to be strong, unfortunately your husband will not get better PSP will creep up and take a facility slowly or sometimes overnight. It is cruel not just on him but also on you. Keep safe sorry to be a damp rag but you need to be ready for the times to come. This site is where you can ask questions get answers or just a chat, we are all going down the same road.

Best wishes Tim

[Debbieann in reply to Amilazy]

Yea I know it's going to get just about as bad as it can be, although I don't think my husband does(don't know if that's good or bad) I was going to look into the possibility of a day centre or seething I feel like he needs an interest and to do something other than sit in chair watching TV, I feel that can't be doing any good! But not sure who to ask, again it's the lack of support!

Thanks for your help

Debbie

[Amilazy in reply to Debbieann]

I agree with the interest to keep him active if only mentally, unfortunately with loss of eye movement and hand eye coordination practical things are difficult. A thing which worked for M when bored with TV were audio books only snag is you will probably have to monitor where he finishes and where to restart. I have now downgraded from books to BBC comedy shows such as "Navy Lark" and "Steptoe and Son" easy for M to follow but short 30 min episodes so attention span not stretched. Tried DVDs but really those are for me to catch up with films I missed as M does not the attention span and going to the Cinema is no longer feasible.

Best Wishes Tim

[Heady in reply to Debbieann]

Hi, welcome to the best site on the Net! Here you can ask any question, rant, rave, kick and scream, we will all understand!

I agree with the other posts! Please don't feel you have been "fobbed" off with physio. It is the ONLY thing that helps! My husband goes to a exercise class for people with Parkinson's, they do multi directional movements. I really notice when S hasn't done his exercises. I am positive he would be a lot worse by now, if he wasn't attending these classes. You have to stay as positive as possible, exercise helps you both!

I have yet to find a PSP person, the PSPA can help. Mostly ALL my information has come from the good folk on this page, who deal with PSP on a daily basis. Our doctors surgery has never come across this evil disease and unfortunately have never heard of Google, to find out!!! You will have to learn everything you can about your husbands illness, to be able to teach the professionals looking after him! We will help! Keep in touch

Lots of love

Heady

[Debbieann in reply to Heady]

Then there'll be the getting him to do any excersise they give him, when he finally gets some physio, he's already made up his mind it's not going to help!

Thanks for all the support!

[Heady in reply to Debbieann]

S goes to our local gym, with about 12 other people, all very sociable. He loves it! Now S was NOT the sort of person, you would think get enjoyment from this type of class, spent a lot of his previous life, rock or mountain climbing!!! It's a shame your husband has closed his mind, these multi directional exercises really do help!

Lots of love

Heady

[Debbieann in reply to Heady]

He used to go to gym in younger days, so maybe if something like that, there might be hope it's so good being able to talk to others ! X

[quickjel]

One small addition to Tim's post and that is to contact your local Hospice. I approached ours directly and they sent someone to do an assessment but from reading others on this site it appears you may need a referral from your GP. We found they were very well informed regarding NHS and SS entitlements and provided a welcoming, kind and caring environment during the day time visits. They were an oasis in what had been a desert of despair, not at all what I had associated with the word 'Hospice'. I hope your experience proves similar. Best wishes, Jerry.

[york]

I like you came to this website and watched comments from members for quite some time. You will get lot's of help and advice and picked up when your feeling down

[kgc1]

Hi Debbie,

As others have said, sorry you are here, but this site really is invaluable. We too found everything a battle, was basically diagnosed then sent on our way with a prescription for paracetomol. Even things such as getting hand rails fitted was a fight.

I would highly recommend ringing the psp association, someone suggested it to us and my first thoughts were, what can they do if our own medical team cant help, but I soon took my words back. They know what they are on with and will be of help.

Take Care x

[Debbieann in reply to kgc1]

Hi thanks, we have joined PSPA, I've sorted AA and carers allowanice and blue badge, there the things I could do without any support from NHS or social services. We had a co ordinator visit us April last year, we got her report in December, I got the phone call yesterday re the physio F should have been referred for!! And that was only to see if he was suitable for an assessment to see if he was suitable for physio!!!!!! And that won't be til the end of April this year! Arghhhhhhh I've been asking to be referred to a different hospital, which is also in a different NHS trust, let's see if that helps, our first appointment is in a couple of weeks. We was told last July he would be referred to speech therapist, that's not happened!!!! Sorry to rant I find it all so infuriating, the stress can't be doing me any good!

Thanks

Debbie

[Heady in reply to Debbieann]

Hi Debbie, being referred and assessed, is the only thing that it seems the professionals can do!!!! Providing the actual support/help, is the tricky bit. One bit of advice, DONT let anybody discharge you! They are all good at passing you on to the next person and closing your file, doesn't matter if that person can help!!! So then, if you need to go back to the first person, you have to assessed all over again! Social services have got this off to a tee!!! Drives me insane, when anyone says, we will have to assessed again! I have been rude on more than one occasion!!!! Even the point of refusing to let certain services into the house. Don't worry, they were useless and couldn't help anyway!!!

I am afraid, by the end, even Mike Tyson won't want to mix with you!!! You will have become so good at fighting!!! But remember to learn to breath as well!

Lots of love

Heady

[Debbieann in reply to Heady]

Hi Heady, I think they already passed the buck, neurological team passed him to memory team! I'd like to know what that's got to do with mobility!!!

How are you an hubby

Lots of love xx

[Heady in reply to Debbieann]

Hey ho!!! Might find they know about more PSP than the Neuro team! S's Carer that comes into shower him, knows more than our GP!!!

Lots of love

Heady