New to this horrible disease : I am so glad... - PSP Association

PSP Association

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New to this horrible disease

JodiP profile image
13 Replies

I am so glad to have found this support page. My

Father is 79 and has was diagnosed with dementia for the past 3 years. He was living with my sister and left unattended during the day while she and her husband worked. He had a terrible fall and broke several ribs and had a brain bleed. Spent a month between the hospital and rehabilitation center. It was then that I chose to take him in to live with me.

I took him to the neurologist last week where it was confirmed he has PSP. I feel so angry that all the other 3 neurologist he has seen have missed it. He has all the symptoms to a T. He cannot walk without my help and I have to help him eat. He is choking frequently and it is heartbreaking to watch. I feel like I am alone in the world sometimes. Thank you for letting me be here

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JodiP profile image
JodiP
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13 Replies
raincitygirl profile image
raincitygirl

Welcome to the group Jodi :-)

Although so sorry for your dad's dx.

You are definitely not alone here! We know what you're going through and will help with your questions or just give an understanding ear to your rants!

Be sure to check out the historic posts - there are 7 years worth covering every aspect of PSP & CBD experience you could imagine.

Also, you probably know there is no cure and it will get worse - so do start thinking about how to access support when he's too heavy to lift, can't toilet himself, can't eat,etc.

And most important: plan how you will get respite care for him while you get a break for yourself. If you wreck your own health, you can't be of any support to him! I'm sure you know all this - but we do encourage each other to get breaks and respite, however possible.

Good luck and welcome!

Xx. Anne G.

JodiP profile image
JodiP in reply toraincitygirl

Thank you

Dadshelper profile image
Dadshelper

Welcome to the site. Ask questions, read old posts, there is a wealth of info here. I'd suggest, if you haven't, pick someone in the family and get a power of attorney and healthcare in place. I am going to assume, normally bad idea, that there is no spouse for your dad since he lives with you. As a child there will be limitations as to what decisions can be legally made, least in the US.

Ron

Ratcliffe profile image
Ratcliffe

Welcome to the site, albeit unfortunately.

As others have said, ask anything you want on here, no matter how daft it sounds as someone on here will have experienced it as a carer or sufferer.

Tippyleaf profile image
Tippyleaf

Welcome to the site no one wants to join but is a sanity saver.

PSP is really hard to diagnose as the odd symptom in isolation can give many different pictures - it is not until more pieces of the puzzle fall into place a diagnosis can be made.

It is a tough journey so please as others have said get some support in place and carve time out for yourself

Love Tippy

Welcome. I don’t know what I would have done if I hadn’t found this site. Reading all the posts I found out what could possibly happen. No two cases are alike. When something does arise I have usually read about on here already. This place also makes me feel not so alone in dealing with this. Being here you will get emotional support and useful information. As for the doctors not knowing most of us have been through that as well.

Hi JodiP!

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

NHGrace profile image
NHGrace

Welcome indeed! As long as you have DPA/PoA that includes health proxy, you’ll be fine taking on whatever you need in the US.

Doing that now makes later much, much easier.

Try to find things you can still enjoy doing together, because it gets harder as the condition progresses.

And definitely don’t go it alone, we all understand and are here for you for what promises to be a wild rollercoaster of a ride. You can do this!

Inparadise profile image
Inparadise

So sorry to hear about your dad. My husband, age 66, was diagnosed with PSP a few months ago, although he had been presenting numerous symptoms for about the last three to four years in some fashion. We first saw a neurologist that IMO was a quack, and wanted to sell us a bunch of electrical stimulation tests/treatments and supplements. We went elsewhere, and have found a competent and caring neurologist.

I am taking it one day at a time, continuing to prepare healthy meals, and making sure that my husband gets plenty of excersise daily. Exercise is so important in this journey..........

daddyt profile image
daddyt

Welcome to the family...sorry that it's under these circumstances. You'll find plenty of practical advice and support here. If you just want to rant... go ahead, you won't be the first. PSP is a difficult journey, you'll need this group in your corner.

Tim x

JodiP profile image
JodiP in reply todaddyt

Thank you 🙏🏽

Ettavb profile image
Ettavb

Welcome!

Dance1955 profile image
Dance1955

JodiP welcome it’s a lonely place for us carers isn’t it no one understands no support from medical profession at all

We just have this so come on and have a chat on here that’s what we do 👍

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