New to the sight but have been following & very helpful

[Krmaier6896]

My partner, Sam, was diagnosed with Parkinson's 6 years ago. After taking him to physical therapy for walking and going thru the "Big" program for gait and speech I still knew something was wrong. I heard of a specialist, that specialized in PSP, in Gainesville, Florida. I had never heard of the disease but all seemed like it was what we dreaded. We walked into the doctor's office and the doctor wanted to know why we were there. I said, "I want to know if Sam has PSP." Within a short period of testing he diagnosed Sam with PSP. It has been the longest 2 years of my life. Many, many falls, visits to the hospital and just recently a 5 day stay with slight aspiration pneumonia and a severe UTI. Just last week we have the best week and with conversation and eating without chocking. But last nite Sam was up & down from bed with hallucinations and not of this world at all. I know it's never going to get better. I do have an aide for at least 5 days per week to give me some relief. Just waiting for the other shoe to drop. Doesn't sound positive but I have read so much, especially on this website, to prepare me for the worse. Thank you to all for helping me get thru this. Obviously, there is a lot more to say, but this is it for now.

Kathy M.

[Kevin_1]

Hi Kathy

Welcome to both of you.

Well, with two years behind you, you must be really quite experienced in this dreadful thing.

You probably know, but its worth saying. The first things to check with hallucinations is UTI and medications. Both of these can cause them. Also peoples sensitivity to meds can change, so they might appear even when there have been no changes in the meds. I think hallucinations are not common, at least until the later stages.

Yes, that choking on food is awful.

Waiving hello to you both.

Kevin

[Ratcliffe]

Hi Kathy, and welcome to the site. I say welcome but of course we never want new members if you see what I mean.

I wish you all the best in your journey through PSP, but we will always be here for you should you need anything.

Hugs

Derek

[raincitygirl]

Hi Kathy,

Likewise from me, a greeting and a hug for support. You have more experience in the "heavy duty" phase than I have, so I don't have any info for you...but I wish you well and hope you get the hallucinations figured out. Do you know that you can access 7+ years of information on everyone's posts here with key words in the search window? Info on choking, food prep, UTIs, hallucinations etc?

Good luck and do keep us posted on how it goes...

XXX

Anne G.

[Hidden]

Welcome Kathy,as said we hate seeing new members.Don't hold back,ask away,rant,cry.There is wealth of information and first hand knowledge here.

Dee in BC

[1941mary]

Welcome Kathy and thank you for sharing your post .

We are a big family full of love and support on this site .

Love

Jude

[Krmaier6896]

Thank you to all & the support feels like a hug. Something amazing happened last night. After visiting Sam’s doc yesterday & asking for Trazadone, thank you Cuttercat, to possibly getting through the night & receiving25 mg to start to give to Sam cause of restless nights......I got 8 hours of sleep. Sam said he was awake all night which I’m not sure but he was calm & quiet all night. Possibly took the edge off. I am very grateful for nights like that. Keep you all posted.

💕to all. Kathy

[Pavaga]

Hi Kathy, can you plase give me the name and phone number of this specialist.

Thanks,

Patty

[Krmaier6896 in reply to Pavaga]

University of Florida. Dr. N McFarland. Dr. Mcfarland does have a lengthy talk on YouTube if you’re interested.

[Krmaier6896 in reply to Pavaga]

Sorry...best of luck to you. You’re very welcomed.

Kathy