First Post: My wife was diagnosed two years... - PSP Association

PSP Association

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tettakali
tettakali

My wife was diagnosed two years ago. We had been managing just about but a recent fall and resulting hip fracture has brought home the reality of what we are dealing with. So we are glad to hear from others in the same situation and look forward to finding help together. Personally I am now preparing for her homecoming and a very different way of life as we get used to what may be her reduced mobility and issues with her balance

8 Replies

This site has been a literal life and sanity saver for me. It's good you found it! Good luck with the transition. It's hard, but there can be sweetness, too.

Peace,

Easterncedar

Thank you...that is just what I am finding out each day and if I could go back in time , I wish I had done what our GP advised when we had the diagnosis which was....join the PSPA!

Took me a while, too. Not much of a joiner. I've changed a bit.

Welcome- sorry you have had to join us but this is a fantastic site for support and practical information. Hope you have some support set up for when your wife comes home.

It can be tough but there are still happy times - hope there will be for you too

Love Tippy

As always so sorry you had to find the site but welcome.

There's more practical info here in the form of back posts and just asking questions then anyplace I've found. Never be worried that a question may seem foolish, more then likely someone has been through that issue and can help.

Ron

Welcome to this wonderful forum, it's by far the most supportive and informative place to come for advice and a sense of belonging. My husband also broke his hip and was in hospital for 13 weeks, he wasn't allowed out until everything was in place at home. It was when we started to have careers in to help as I knew I wouldn't be able to manage it all on my own. Get all the help that is available to you, it's hard at first but it just becomes a way of life and is essential for your health to.

Take care of yourself

Love Kate xxx

Welcome Tettakali,

You'll find great support here: So many experienced members! And as you may know, we have access to 7 years of historic posts covering every aspect of this disease you could imagine. If you need any help finding history let us lnow.

Meanwhile, if you haven't already, begin to get yourself in the mindset of taking care of yourself. It is a tough journey being a primary caregiver- physically, emorionally and psycologically, and while ypu may be energetic enough now, you'll need to prepare yourself for getting others' help or arranging respite breaks etc. It's not just the logistics of such things, but getting yourself into the mindset that it's ok, yourwife will be fine and you must do this for YOUR health!

Meanwhile, best wishers to you both :-)

Anne G.

I'm in the USA, and have no idea about the health system in the UK.

For those who fall a great deal there is a device called a Hoyer Lift. Think if it as a lift that is used to pick up a car engine and allow moving it to where it needs to be. The difference is a Hoyer lift is designed for people, and moving them safely and without causing any pain. The Hoyer lift is only as good as the sling you use with the lift. Most insurance companies will provide the cheapest sling they can. It's up to you to demand the sling that works best. I provide all of the information you need in order to get the best one. I will explain more further down this post.

Another item I want to talk about is a walker. A standard walker requires one to squeeze the levers to apply the brakes, The walker best for those with PSP is called the U-Step 2 Walker. Unlike a standard walker, the U-Step 2 Walker is always in brake mode. When one with PSP gets into a problem, the last thing that they can't do, is to think of applying the brakes. With a standard walker the user is unable to apply the brakes, and about always ends in a fall! If you live in the USA and your loved one is on Medicare, or has insurance, you need to understand that if your doctor has requested a walker for your spouse within the last 14 months, you can't get another one until you have had the original walker for 14 months. Out of pocket this new walker will cost you $575.

As many members of this group can tell you, I'm just a caregiver who has a wife that has PSP, and I have put up a website for our local support group here is Arizona. The web address is supportpsp.com There is no cost for anything on the site - we never ask for money nor do we accept advertising. The site just contains information. Most of the information isn't country related, but if you live in the USA, I even cover how your loved one can get Social Security Disability benefits automatically if your doctor has given your loved one a diagnosis of PSP.

I understand how you feel, as I too walk the same path as you do. I have been a caregiver for over 3 years, and I know your pain, as we all are in the same boat. Some of what your will learn from my website may not be what you want to hear. The main purpose of the site is information. The one thing I will promise is most of what is covered on the website will make both you and your loved one's life better. Hang in there, you are not alone.

My name is Andy and if you have any questions I'm here. You will find the people on this site are very caring. They understand because we are living with exactly what you are going through. I have made it my mission to providing the best information as I learn about it. I will leave you with one last thought. Get as much help as you can. Get help from family, friends, hired caregivers, and even people like those on this site. Being a caregiver has been the hardest job I have ever had. If you don't get help you will burn out. Without you, what does your loved one do?

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