I’ve been unsure of what was wrong with me, just knew something wasn’t
right. Had a CAT scan late 2021 which didn’t reveal anything and had an MRI
Summer 2022 again didn’t show any major anomalies.
Finally diagnosed in November 2022 by consultant neurologist at Perth
Infirmary who confirmed I had PSP which I now know is a rare condition.
welcome to this forum. I hope you find it useful. Do take time to look at older posts as there’s lots of information. There are both people with PSP or CBD and carers here.
Hello,
Welcome to the forum that no one wants to be a part of but we are all so very glad to have found it because the information here is invaluable.
My husband is starting his 6 th year of PSP. Like you we knew something was wrong and it took a long time and a lot of different Drs to finally figure it out. I suggest you read all you can about this rare disease because knowledge is power. Also I have found that being proactive in getting everything in place BEFORE you need it is very helpful.
A walker, in house medical transport chair, a lightweight collapsible wheelchair for outside trips, (Drive Viper Plus) grab bars and a seat in the shower, and later a shower chair that sits over the commode and slides on rails over the shower lip into the shower, (Eagle Health on Amazon) , rails on the bed, a wireless CallToU call system (bought on Amazon). These are all things that have made our life easier. I am my husbands sole caregiver. You will need assistance, so if you have someone that is great. Otherwise assisted living facility might be an option.
I wish you all the very best and strength to make the best of your situation. We are all here for you so ask anything you need help with. ❤️
succumbed with guilt and what if….
At your request Amanda.. Adventures in China
Goodbye my dear husband
Palliative/Hospice Care Part 2 The Disaster.
My Husband Lost his battle with PSP
