PSP

[Roram]

MY WIFE WAS DIAGNOSED AS HAVING PD 4 YEARS AGO. SHE'S BEEN TAKING ROPINOROLE .5 MG TWICE A DAY AMANTADINE 100 MG ONCE A DAY AND FOLIC ACID ONCE A DAY FOR THE PAST 2 YEARS. HER WORST SYMPTOMS HAVE BEEN GAIT, BALANCE AND HER VOICE HAS DECREASED CONSIDERABLY, NO TREMORS. RECENTLY SHE HAS TROUBLE EXPRESSING HERSELF. IN THE LAST COUPLE OF MONTHS THINGS HAVE GOTTEN WORSE AND I NOTICED THAT SHE HAS BEEN HAVING TROUBLE READING AND SEEING(FOCUSING) . WE DECIDED TO SEE A NEW NEUROLOGIST THIS PAST WEEK. TO OUR SHOCKING SURPRISE HE DIAGNOSED HER WITH PSP,Progressive supranuclear palsy, PSP’s symptoms often mimic Parkinson’s disease, but the two conditions are separate. The progression of progressive supranuclear palsy can lead to vision problems. They will begin to develop difficulties controlling the muscles in their eyes, along with their eye movement, which can lead to blurred and unfocused vision. A loss of balance can be an indication of one of the numerous neurological disorders, but eye problems tend to offer the first diagnostic clue pointing to PSP. Patients with progressive supranuclear palsy might have abnormally slow eye movements. In particular, they tend to experience trouble shifting their gaze up and down. So now our lives have sunk to a different level.

[Icequeen10]

Oh my, I am sorry to learn of her changing diagnosis. It's been hard to accept what they think I have.,., it's almost every day that I learn more, especially about things worse than PD.

[Roram in reply to Icequeen10]

yes it's very disheartening.

[Juliegrace]

I believe there is a PSP group on HU. They might be a good source of information and support.

[Roram in reply to Juliegrace]

thank you

[Hidden]

I hope that you will have use for the following link in case you have not already been there!

healthunlocked.com/psp/about

Art

[Hidden]

Here is a recent abstract that you may find interesting regarding PSP.

ncbi.nlm.nih.gov/pubmed/305...

en.wikipedia.org/wiki/Scyll...

Art

[Roram in reply to Hidden]

thank you.

[Cbgs]

No diagnosis is easy.

Daily, I need to tell myself .... I’m here for a reason.... I’m going thru this for a reason....

I def don’t like it , but here I am

So I may as well act as if I chose it & make the best of it.

Pls know I’m not this positive every day and by no means am I dismissing your struggles...

But ya just gotta stay strong , love , trust & help each other thru

Be well

C!

[Roram in reply to Cbgs]

Thank you your kind words, a little sunshine

[aliciamq]

Don't sink!!!

[SCT25]

Roram - I have only been on this forum for a few months. One thing is for sure...there is a wealth of information out there about PD. I was diagnosed over 14 years ago at the age of 38. I was on active duty in the USAF, and in the athletic prime of my life, or so I thought. I could bench press 365lbs, run a sub 6 minute mile, and had been to the US Armed Forces World Championship of softball the last 4 years. Plus I was on the fast track to promotion to Chief Master Sergeant, the highest enlisted rank. I had just finished my 7th deployment post 9/11. I was a warrior, serving in Bahrain, Uzbekistan, Afghanistan, Kuwait, Qatar (twice), and Iraq. My neurologist was the Director of neurology at the USAF Academy in Colorado Springs. They had been running tests for almost three weeks, then one day my doctor told me I had PD. It was the first time that I had heard anything about PD. I walked outside and thru up in the parking lot. Almost 15 years later I wake up everyday and just try to be normal. Needless to say my life has changed considerably. My best advice is exercise, exercise, and then exercise some more. It is the best medicine you will ever find. And in the words of basketball coach Jim Valvono...Don't give up. Don't ever give up. Sorry for rambling.

[Roram]

Thank you for your advice and service.