Tuesday, November 17, 2009

11/17 The Fate of Many TBI Survivors

I visited two facilities today that specialize in outpatient care to TBI survivors. The first was a clubhouse in Akron where TBI folks gather, take meals together, garden and attend support meetings. I heard tales of people who are largely abandonned over time by friends and then family. Tales of people with little to no opportunity to progress.

The second, Hattie Larlham, opened a facility this year for a TBI back to work program, but is closing its doors already for lack of funding.

Insurance coverage and medical supports for TBI rehab are truly in the dark ages. There are uncounted thousands staring at walls all day, lying in netbeds or otherwise not finding assistance in the day to day work of re-emergence.

I am so grateful grateful grateful for Chuck's loving and patient disposition and the experience of being genuinely loved and supported by a wise partner on a strange and difficult journey. We feel lucky and blessed.

Johnny continues to stretch Chuck's entire body every day and to work with him on weights. I am seeing Chuck's body subtly begin to straighten out and his gait becoming more steady. He regularly reads instructions and fills out worksheets now doing his own writing and his speaking is improving. I am impressed with Johnny's commitment and the staff at Gilcrest's willingness to be flexible and make room for Chuck's particular regimen.

We now have volunteer drivers taking Chuck to various therapies. Chuck tells me he and Elizabeth Wilson had a grand time today going to the Anna Dean rehab in Barberton and that he enjoyed the company of Homer. "It was fun," he says.

Look for changes soon to the format of this blog. De-de Mulligan, Chuck's friend from Hudson Clocktower Rotary, is going to partner with Christy to get this thing geared up for our December fundraising campaign. We're looking, once again, for fun or special stories and pictures people might have of Chuck. Please send to newdays18@aol.com More later on these developments.

Today was the first "perfect" day in my opinion for Chuck, with the right balance of training and rest, cognitive therapy, friendship, family time and down time. He was so happy with the roast I made him tonight, he called my mother to brag about me.

A: You always brag to my mother when I do some old-school wife thing well.
C: Well you shine easily the wife on the light. (or something effusive)
A:We're doing this TBI thing all wrong, you know. We have no business being happy.
C: Yeah, it's terrible. We'll have to do better.

1 comment:

  1. I am so happy that Chuck is progressing. I hope his ears were burning because he was mentioned several times today in our Rotary meeting.

    God Bless Chuck and Auburn!