It’s been 10 weeks since I last posted. Many of you have written to ask what’s happening now.
Hal continues to make real, though slow progress. Measured day to day it’s not that noticeable, but over a period of weeks and months, there are very real, positive changes. Among the most noticeable, he now can transfer well from wheelchair to chair or from bed to wheelchair with just one assistant to make sure he doesn’t fall; he does most of it himself. See the photo a she prepares to go into the therapy pool. This is a vital step. Now that he can transfer well, in 10 days we will take him to Washtenaw Community College warm water pool where there is a chair lift into the pool, and start regular exercise sessions there 2 or 3 times a week, just Hal, me and one Hal care Team member each session. The aquatic physical therapist has been training a few of us all how to do this and will come with us for the first session. I’ll be sure to take pictures. This is the pool where Hal and I swam together almost daily for many years! He’s very excited about going there. Exercise beyond what he gets in PT will help him grow stronger. Twice a week PT is not enough, but I can’t afford more PT.
He continues to enjoy the Aphasia Friendship circle, looks forward to it and participates more fully. When he comes into the room, he wants to be wheeled to various friends he has made there to say hello. Participation has inspired him. He sees that even post-stroke and with aphasia, he can have fun and a social life of sorts. And he sees others learning to walk and is inspired there too. It’s so good for him to get out of the nursing home and do something that’s fun. These two pictures show Hal and the group singing.
The nursing home staff tell me his language is improving too. This is partly due to the aphasia group, and partly the result of the gift of speech therapy almost weekly from a friend and student who is a very talented speech therapist. She has given so much time and energy very generously. Our goal with his iPad app is to empower him to be able to express his real needs to the staff: pain, thirsty, cold, tired…. Our motto is “verbalize; don’t vocalize”. In other words, even if just one word, can you say it instead of just moaning or crying, He’s learning to do this, especially navigating his aphasia app to find the word and say it along with the app. This is a big step in regaining control of his environment. The app is also allowing him a means to express emotions, something vital to well-being. Hal and I, and other friends too, can now have some meaningful conversations. As he navigates the app - Hal words/ my body or my feelings… and then the word, the app both shows it in print and says it clearly and Hal can say it along with the app. Thus, he becomes more able to find the words on his own, easing great frustration of being trapped in side, unable to express his thoughts and needs.
I’ve being bringing him home or to a park about once every 10 days, aided by a Hal Care Team person. I’m still looking into a bathroom renovation, so Hal has that in the home too, waiting to see what money we’ll have available to do the work.
His interest in the world continues. He watches the news and documentaries, and just received his absentee ballot. His sense of humor remains strong too. See the photo below.
Below is a photo of him at our beloved Gallup park where we used to go often for walks and picnics. He loves coming home; just a simple lunch means the world to him. I still need a care Team person to assist as I cannot push his wheelchair, but the Care Team have become family! Unfortunately, several of our Care Team are graduating at the end of the summer and moving on, so we are looking for new people to train. Please let us know of anyone you think may be interested. These Team members are with him about 35 hours a week and earn $15/ hour. I hope to be able to continue it at that pace as It’s vital to his growth and well-being. Without them he would just lie in bed staring at the ceiling and would deteriorate fast. He cannot be in his wheelchair without someone with him and the physical therapist wants him up like that at least 4 hours a day! The nursing home is not staffed to provide such support.
A reminder. Donations are very welcome to help keep Hal in therapy and supported by the Care Team on a daily basis, and also to help build him a bathroom. Now he's on Medicaid but getting there mean we have literally used up all our accessible savings. I'm living on my SS check. And Medicaid doesn't pay for these supports: Care Team and most therapy, which are so essential to his progress. His nursing home provides only basic care support.
Checks may be sent to us at home, made out to Barbara Rothbart or Barbara Brodsky - 3455 Charing Cross Rd, Ann Arbor MI 48108
or to my paypal account paypal.me/barbarabrodsky
All money goes into an account in Hal's name, for his use. I am happy to provide details on where the donations are going to any who want to see it.
We are in process of setting up a “Go Fund Me” crowd funding site, that will allow a wider group the ability to offer support. We hope to have that ready by September.
Your continued prayers and love are also very much appreciated and sustain us! He loves to hear and read your notes and see pictures.
With love, Barbara and Hal.