PSP: I was eventually diagnosed with PSP... - PSP Association

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Dave-esau profile image

I was eventually diagnosed with PSP this year after 6 years of being diagnosed with Parkinsons. My symptoms have gotten worse in the last two months my speech is poor and I fall a lot more and have difficulty walking

10 Replies

These are my symptoms exactly I was diagnosed about three years ago with psp after five Years of atypical Parkinson's .

I have no tremour and don't take any drugs for my condition

After a bit Of research i actually think I have pure akinisia with FOG which is actually a form of psp but not so hard. I too am falling more often nowadays and have to be very careful when i am trying to walk. but apart from this i lead a fairly normal life.

Welcome, Braemar, though very sorry for your diagnosis. That's a great photograph. You look like a real fighter. Psp is a tough opponent, but you have us in your corner. Good luck, and hang in there. Easterncedar

Look into Great Call or any alert alarm that you can wear when walking. We pay $44 a month for all the monitoring but it will notify whoever you choose if it detects a fall. One does not have to press the button. I feel very safe with it and when I don't feel well I wear it as my greatest fear is that I will fall and Joe can't help me as he can't dial the phone.

God Bless

abirke profile image
abirke in reply to

Huh I ve not heard of the one you don't even have to press a button...is that in the UK?

in reply to abirke

No. USA. Found it in AARP magazine. "Great Call" endorsed by John Walsh. Very easy to set up and wear and charge. I bought extra charger for second home, $20.

Good luck! We love it. They respond immediately.

LynnO profile image
LynnO in reply to

Do you need a land line for that to work?

I forgot to add this: Speech therapy is a must. We started 3 months ago and Joe gets it 3x a week. Much is done now with the IPad and at home. We are blessed to have found Kristine. Medicare is paying for it so far!

Cool Shades....I have read this time and again; diagnosed with one thing usually Parkinsons and finally found to be PSP. I do hope you get to meet the others here who have PSP ...nothing beats a good camaraderie! My husband was showing signs since 2010; diagnosed in 2013 ....And I must say, without me telling dr what it was and then he testing for it, B may have a difft diagnosis as well! But now that you are here, welcome...this is a great place to find and give answers or just be mad and scream and yell or cry.....We have done it all...

So now it's the moving on, where do you go from here....talk to the family, make someone power of attorney....rearrange furniture/ get rid of small rugs so you have more freedom from falls and tumbles, If you're in the UK , your brothers and sisters of PSP there will tell you what to do. and, well, If you've never been very spiritual, this may be the time to ask God for guidance and comfort...praying helps you to communicate with him and help you feel so not alone on those dreary days...Take care of yourself man, eat well exercise with a friend, and sleep well...and remember to take care of your spiritual self as well

Again welcome B51, we are hear for you....

AVB

He giveth power to the faint; and to them that have no might, he increases their strength Isaiah 40:29

Come unto me (the Lord) all those that labor and are heavy laden, and I will give you rest Matthew 11:28

So sorry about your difficulties, but welcome to a very supportive group. One bit of advise for you and your caregiver; do not reject or fight the tools (walkers) that can help and protect you. Get all the help you can get and prepare for the long-term. I am a caregiver for my husband. Hang in there and enjoy the things you can.

I agree with PSPwife, dont dwell on what you can't do, instead think about what you can and move forward. I am new to this group, here you will get the facts, stories and advise no one else can give you...we are all in this together

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