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[1Kingskid]

My husband was diagnosed with PSP in April 2018. I am his primary caregiver and I work full time. Our adult son lives with us and helps a lot.

[Dadshelper]

Welcome to the site. I'd recommend reading through older posts via the search feature. Ask questions as they arise. It is good you have help in the home as this is a progressive disease.

If you let us know what part of the world you live in, answers can be tailored better in regards to medical and social services.

Ron

[honjen43]

Hi 1Kingskid and welcome! I live in New Zealand. My husband was diagnosed with CBD and died almost 3 years ago, but I still linger here because I feel I can still help - and it helps me! Besides, I have made friends with so many here!

You will find this is a very caring and communicative site. If you have a problem, or a rant or moan, or a panic, there will be a sympathetic and helpful response very quickly.

Yes, use the search feature. There are lots of back posts that offer immediate advice and suggestions.

Keep on keeping on!

Big hug

Jen xxx

[SewBears]

Welcome to your new virtual family but I’m so sorry about the need for you to join.

In the beginning I was full of worry and totally stressed out. Thanks to this website I’ve learned everything from weighted magic blankets, different tests to ask about and types of medications to sleep deprivation and swallowing issues. You name it, it’s probably here.

Whenever in doubt just shout it out and someone will be here to get you through whatever it is. We’ve all been in your shoes so please don’t be shy.

Sending hugs,

Xoxo from I SewBears

[LuisRodicioRodicio]

Hi 1Kingskid!

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´ll send you our particular experiences on PSP-RS that we hope you can find useful.

I am not a phisicyan. The information I am sending you through this private mail is a compilation of our own experiences and of the people who participate in the PSP chat. The information is made with good will and with the best technical criteria that I could contribute, thinking above all in the guidance and support of the caregivers that, with the exception of the help found in the websites and chats of PSP associations, should be face alone this unknown disease.

Hug and luck.

Luis

[Baileyboo]

Hi 1Kingskid

I am so sorry you have had the need to join us but you are very welcome.

I joined this forum the day my husband was diagnosed with PSP and the help and support was invaluable.

Like you I still worked full-time and fortunately our daughter was at home.

You will receive so much support and advice from friends in this form. So please don't be frightened to ask no matter how big, or how small, someone will be able to, hopefully, give you the support you may need or answer your questions.

I hope you will find the support and help I have gained from this forum.

Sending love and hugs

Pat xx

[Hidden]

Welcome.

Start organizing. Things like a will, medical and financial powers of attorneys. Whether he would want a PEG feeding port put into his stomach. A living will with what steps to keep him alive or not at end stage.

Aids for keeping him at home to modify to make it easier for both of you. Hand grips in strategic place in the home and bathroom. Stair lift if it is in a two story home. Lift chair in living area to make it easier to get him up and down. Ramp for access to outside if needed. A visit from an occupational therapist would help to determine things like this.

Physical, speech and occupational therapy. Keeping him active as long as you can.

[nergeshb]

From now on you have ALL of us behind you and beside you! Remember we are here for every tiny or major problem.... here to share it and help to solve it. We are here to hold you, hug you and help you through this journey. Lots of love, Nergesh and the group

[Hidden]

Welcome to a group no one wants to belong to

These are things that may help you if have not already done so.

Please get your health directive in order,DNR ( yes or no) peg feeding ( yes or no) any and all financial matters dealt with.

Do your research,do ask here or use the search bar on this psp site,so many knowledge people here with first hand experience.

Try to stay ahead of this disease, meaning that if your low income look for resources that may help with,shower chairs, wheelchair, hospital bed and even a shower and or location of sleeping area if you are in a two level home.

Ask away.

Dee in BC