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
From first symptoms, generally a PSP patient only has about 10 years to live. Instead of fighting the system and trying to prove you don’t have PSP, create an environment you will be happy and comfortable in whether you have PSP or not.
Financially, Socially, Ergonomically, Functionally
No steps inside nor outside your home; you will at some point need wheelchair access throughout your home and to a van out by the street.
A shower a wheelchair can be rolled into.
A toilet with sufficient room to use various types of assistance equipment.
Doors are a hinderance.
No carpets anywhere. Carpets greatly make mobility difficult.
Anti-Fall protection. PSP delays sensory responses. Muscles don’t respond fast enough to maintain balance consistently. Injuries from falls can complicate care significantly. But at the same time you will need to walk as much as practical to stave off muscle atrophy.
Muscle weakness is a progressive problem.
A suction device when eating can help quickly ease the discomfort of not being able to swallow foods and liquids.
Caregivers should not be allowed to lift you, or struggle to prevent you from falling. Your awkward fall can permanently harm their back. They should learn to only help you fall gracefully without slamming to the floor.
Once on the floor, a sling is placed under you by rolling you back and forth. A hoist (hoyer) is then used to mechanically pick you up and place you in a chair or on a bed. Where you can regain a safe and comfortable posture.
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. Philippine Caregivers we hired were exceptional.
Do not make any exception. Do not allow any family of caregivers to visit or provide support. Family comes first in the Philippines, and you may come to support 20 family menbers living in your home. None of them capable of maintaining detailed cleanliness nor home repairs you have come to expect.
Pay too much, and they get lazy and perpetually look for ways to take advantage of you; human nature. Pay just enough and they are grateful and protect their income.
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 the patient. And nursing home caregivers and administrators 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