Support Paul's Journey with PSP

Hi folks. Most of you know that Paul has been dealing with a progressive neurological condition, PSP. It's an atypical type of Parkinson's. Due to the increased number of falls he's had and his balance issues due to this condition, he has progressed from using a walker to now using a wheelchair. His speech and swallowing are also impacted.

His helper, Pam, still helps him walk some outdoors with the walker. It was also recommended that he have a motorized wheelchair, which we received on April 30th this year. His insurance covered most of it, but 20% was left for us to pay. That was almost $3000. We paid our mechanic to add hardware and straps to the van, which was Paul's when he was still working as an electrician until he couldn't anymore. Now we can take the chair with us places. That was $200. I injured my back at the end of January and am still having to be very cautious with helping Paul move from wheelchair to bed, etc, all the things he needs help with.

We're blessed and very grateful to have Pam helping us. She's a lovely, wonderful, and caring person. She helps Paul with showers, grooming, his speech, occupational and physical therapies. She also plays games with him and makes him smile and laugh! When she started in March, we paid her 9 hrs/week, $20/hour out of pocket. Starting in May, we've been receiving funds which we were on a waitlist for since last year. It is a grant, part of the American Rescue Act as a response to COVID. As a result, we were able to increase Pam's hours to 11 per week and just recently to 14 per week. But the grant ends at the end of September and is not going to be renewed. So we will then start paying her out-of-pocket again. I am Paul's 24/7 caregiver and that is my job now, so I am not earning any income.

We're hoping to make a move in the near future to a 2 bedroom apartment because the one bedroom we're in now is very small and difficult for Paul to move the wheelchair around. Plus, having only one bathroom has a few drawbacks.... And if this move happens before next May when our lease renews, and we're hoping to move before then, we will have to pay 2 month's rent if there's more than 2 months left on the lease when we move. Plus there's the additional cost of the move itself.

Asking friends and family for money is something I'm really not comfortable with but believe it has become necessary. Paul and I appreciate your consideration and we love you all and we're very blessed and grateful to have you in our lives.

Suzie and Paul