Mum just been diagnosed with PSP

[corkywool]

Hi all my mum 83 was diagnosed with PSP 2 weeks ago. She was initially told she had Parkinson's (this is common from what I've read) 3 years ago, she has been falling and has been unsteady on her feet for at least 5 years . My husband and I moved her in with us 18 months ago , since then she has rapidly declined , in fact she has declined in the last two weeks since her diagnosis. She has gone from being constipated to having constant diarrhea she wont eat and is very weak and unsteady. I'm going through mixed emotions at the moment , I'm scared of the future for us all and I am finding myself very short tempered. I have contacted social services for help but they are not interested. Is there any help out there or do we just have to plod on and cope ourselves?

[Dadshelper]

Welcome to the site. Letting us know what part of the world your in will help tailor answers to your questions, especially about healthcare and related services. I can say you are not alone, there is a wealth of info here in past posts plus just asking questions.

Constipation and diarrhea are not uncommon, unfortunately it's a fine line to walk at times to control them.

Feeling anger, frustration and short tempered is common. We all want what's best, a cure, and as of yet there is none. You've been at this for a while and I'd suggest you look at getting help, even if you have to privately hire an aide to come in for a few hours. You have to get a break or you could very well end up with caregiver burnout, then your ability to helo is diminished.

Ron

[corkywool in reply to Dadshelper]

Hi I'm in the UK.

[Dadshelper in reply to corkywool]

I am in the US and our health system is different but from reading old posts you should be able to present a case to the NHS or sub-entity about getting help. Someone from the UK will give you better instructions then I.

Ron

[corkywool in reply to Dadshelper]

Thanks Ron.

[Hidden]

This is an old response to CHC help from Kevin_1. There is help available in the UK.

This is an NHS arms length advocacy service.

beaconchc.co.uk/how-it-works/

Their help pages are superb.

If you look to the right of the page you will see that by registering you can download their 'Tool kit'. That and the pages on the site will tell you everything you need to know.

A word of warning: It can sometimes be quite a struggle to get CHC. Budgets are tight and folk are often pushed across to the Social Services means tested service. Doing your homework and preparing for the assessments is essential.

The assessments are evidence based. Saying, "my wife falls at times" is not good evidence. Saying, "She fell four times this week on these days..." is good evidence. If you get my drift.

[Tippyleaf]

Welcome - sorry you have had to join us but you will find lots of helpful info here.

You need to go to your Mothers GP armed with a list of things you need. I would start with OT, physio & speech therapy referrals district nurse and referral to local hospice. There is help out there but you have to ask.

In terms of funding CHC funding should be the way forward- be warned every

GP District nurse denied its existence to me and said we needed a social services referral for means testing.

Would also suggest you join the PSPAssociation - they have local support groups and great resources which you can share with healthcare professionals who in my experience do not have a clue about PSP!

Ask away we are all here to help each other

Please look after yourself too

Love Tippy

[AnneandChris]

Hello there

Tippy, again has hit the nail on the head. Your GP, Community nurses, Physio, OT should all be on board to help you. They will then refer you to additional services such as wheelchair assessment, orthoctics.

Where in the UK are you as I know some counties are better served than others.

So keep on keeping on, you're not on your own. This site has a wealth of experience and love.

Hugs

Anne

[LuisRodicioRodicio]

Hi corkywool!

I'm sorry PSP has entered your family.

The suggestions of my "chat" colleagues are wise and based on their different experiences. In my case they have been very helpful.

This disease manifests itself in a similar but different way in each patient. The participants in chats like this offer practices and solutions to learn from, and through the "trial and error" method, achieve a quality of life with interesting moments despite everything.

By private mail I send you our particular experiences on PSP-RS that we hope you can find useful.

Hug and luck.

Luis