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.
Written by
Krmaier6896
To view profiles and participate in discussions please or .
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.
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.
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.
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.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
New to the group.
Confused
I'm new here. Where do I start...? Help! 
Just joined the site
hello I am the wife of a newly diagnosed husband joining your lovely supportive group.
