Sorry that you have the need to find PSP relief here.
established 12/30/2024
I will add resources and useful equipment for supporting PSP patients
What is PSP? Mayo Clinic description
Caregiver Support
We were considering moving to the Philippines and rent a house. Live-in Caregivers are about $150/month and you need 3 of them for 24/7 care. They need rooms to sleep and care for themselves. Philippine law requires providing them with educational support. Not expensive but it takes some of their time.
If you live on social security and do not have significant family support, you may not have another choice. You are becoming paralyzed. Act as soon as practical. It takes efforts to get established.
Nursing Homes require significant research as they can take all of your last 10 years of earnings. No matter who is caring for them. And they can make life uncomfortable. But if you leave, they can refuse taking you back without ANY refund.
Temporary nursing homes can cost $1500/day. Research your choices before being forced to make a last minute decision.
California Programs potentially providing assistance
Sacramento Transit has a door to door handicapped service for $5 per trip. You need to setup in advance and it takes a few weeks of processing.
Medical Transport costs a minimum of $60 one-way
Useful Durable Medical Equipment (DME)
Be frugal. Caregivers are your most significant expense.
Be careful about automatic refill services. We had ordered a type of diaper, but it didn’t work well. We had 8 cartons before we could get company to stop sending us this waste.
https://pspcbdfoundation.org/psp/
PSP Support Groups
Cellphone Group Support
https://www.smartpatients.com/communities/psp-and-cbd
https://www.psp.org/ineedsupport/supportgroups