Fred has acute CIDP. He cannot get in or out of bed without assistance. He needs help with bathing and toileting and has constant medical personnel coming in and out of his home. Insurance does not cover the home health-care workers that he needs.
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When I visited, we had major victories by getting out of the house five of the seven days I was there. Fred hardly saw the world outside of the hospital, assisted living and his home for the previous three months. We went to an outdoor mall, wheeled around the premises, hung around a park and even went to a happy hour. Winning!
My sister-in-law Judi and Cousin Steve, AKA the World's Most Dependable Man, created Fred's GoFundMe about two months ago, and it hasn't reached half of its goal — yet.
I recently returned to California after spending a week with Fred, and I was fortunate to be a part of his best week in the past three months. I played a role in that by insisting on getting him out of the house and doing my best imitation of Gene Hackman in The Royal Tenenbaums by "taking it out and chopping it up."
Fred showed movement in his hands and arms, and that was an excellent step forward. He did physical therapy with a walker and gingerly completed a loop around his living room while being spotted. There were signs of progress, but the problem is that every 11 days, he does necessary infusion treatments. Around that time, his movement gets much, much less.
Acute CIDP is a rare neurological disorder that Fred first showed signs of in Dec. 2018. It got exceptionally difficult in April 2020, when he was basically paralyzed and we didn't know what in the world was happening. But after a lot of rehab and treatment, he dealt with it and got to the point where he was functioning, working, driving and living life in 2021.
Back in April of this year, he fell paralyzed from the neck down, after slowly getting to that point. He had a feeding tube for more than a month, and there was talk of a ventilator, which he never went on, thank God. He spent 27 days in the hospital, 40 other days in an assisted living/rehab facility, and now he's been home for a month.
We went to his office, visited Cousin Steve, drove around downtown Cleveland, went to Shooters in the Flats and had dinner at TownHall on West 25th. Fred also got out to Chippewa Lake, slept over in Brecksville and cooked out with Steve, Krista, Dina, our mom and me. Winning!
Fred and I had a blast. No major issues happened with him out, and at times, I felt like I was Jim Jefferies in the short-lived show Legit, which I enjoyed quite a bit, by the way.
It took me a while to accept this new reality because Fred has always been the picture of health and quite athletic. He was playing fast-pitch baseball until age 49, and when I surprised him by showing up at his 50th birthday party in Cleveland in 2018, his health was all good.
Fred's attitude and approach to his health remains matter of fact and optimistic. He often talks about God, and he has strengthened my spiritual life. I love this guy, my only sibling. Thanks for reading this and thank you for the support!
