Caring for a male with PSP

[mfratto]

Looking for tips on the care of a male with PSP. Looking for way to ease his day promote healthy living .

[abirke]

Greetings Mfratto. I am sorry that you have to be on this site and glad you found it. It will be a wealth of information. But better yet it's a great place to rant rave scream cry vent...cuz we've all gone through or are going through the same stuff.

My husband was diagnosed back in '13. He showed signs 4 or 5 years prior.

The thing I would suggest to you, is if he is a friend or a loved one with whom you spend alot of time, and if he is still capable of joining in in activities, then you should start packing in things you've wanted to do and start doing them....there's no day like today have fun enjoy your loved one and let him have "PSP free" moments. If he can, travel. I found that airlines were very respectful of the needs of those who needed help ie the disabled.

Next, I would get a gym membership and start working out. My husband lifted weights all our married life (and before) and this was easy for us to do. If this is not for you then you might find some other daily activity such as walking or even swimming if he has a physical therapist with him in the pool....You might ask dr if there are senior centers that can accommodate your husbands needs. Note the word "daily" you both need a routine that creates a new normal (one of many new normals you will start experiencing) By the way , physical therapy is sort of a must. It will not stop or even slow the progression of the disease but it will help you learn how to walk with him; how to get him up if he falls; teach him how to sit down; how to use the walker; how to stabilize him using a gate belt and even HOW to fall....etc...ask your dr for a home-health specialist. Occupational and speech therapy may also be offered. This is strange, but many of us, and you might have (have had ) the need to yell at him.....I used to get all upset and tell him he's just doing this on purpose cuz he's mad at me .... It took me a good year to figure out how wrong I was ....took me that long to stop feeling guilty. So don't yell at him...come here and yell at us....we may yell back but most likely we'll just give you a big hug....

One of the biggest ways to help your PSP patient is by keeping yourself healthy. Not just physically (and that's a biggy) but mentally and spiritually. Take time out to be PSP free. That may mean that you need to get away...let him hang out with somebody else for a day or a week...He'll be ok....if you are ok, he'll be ok....and if and when you're not ok then reach up to someone more powerful than you; I'm speaking about God. Pray to him often asking for guidance. He will be there for you. Miracles of healing PSP may not happen, but miracles of getting through all of it will ...strength.....a word SO often used...so I will leave you with a couple of scriptures and a reminder, we are hear for you, He is hear for you. find daily activity that makes you both happy; take that trip you've always wanted or are just now thinking about. Get help from the medical community oh yah YOU ARE going to have to be this man's GREATEST ADVOCATE! Be forewarned most drs don't even know what PSP is! Take time out to be PSP free! take care of yourself!

At the end of my husband's wonderful life, the last words that he could get out was, "Do Well" he would say this when the kids or others were leaving to go to their house. So now I try to remember those words because not only does it remind me of my beloved, it reminds me that if we strive to do well, we must be doing our best ! What more can we ask for

Do Well

AVB

The Lord will give strength to his people; The Lord will bless His people with peace. Psalm 29:11

Fear not for I am with you; be not dismayed for I am your God; I will strengthen you, yes, I will help you; yes I will uphold you with the right hand of my righteousness. Isaiah 41:10

......pray (always) , and do not faint. Luke 18:!

[MtnMolly in reply to abirke]

What a wonderful response you sent...Amen!

[raincitygirl]

Well I simply can't improve on AVB's response

I echo her suggestions. If your man is not mobile, let us know more specifics and we'll give you more ideas.

Welcome and keep in touch!

Anne G.

[LuisRodicioRodicio]

Hi mfratto!

Very much in agreement with the comments of "abirke" and "raincitygirl".

I send my experiences on PSP by personal mail in case they are useful.

Luck and courage.

A big hug.

Luis