But the important thing is that Dad always gets to therapy on time and right to work. Lately we've been putting him in a standing frame, which helps him with balance and gets him to bear weight through his legs again. His ankles are extremely tight (the Achilles tendon shortens really easily when someone is off their legs for an extended period of time, imagine pointing your toes), but the standing frame will help stretch them out. Working in the standing frame has also started changing his tone, which is good in some ways, bad in others. Now instead of one leg bent, one straight, they are both very straight. He's also been straightening out his torso, which makes it difficult for him to sit in his wheelchair for longer periods of time. After about an hour he begins straightening his legs and torso and sort of slides out (best analogy would be an unhappy toddler sliding out of his highchair). It's not purposeful, we think as he gets tired, the spastic tone kind of takes over. As frustrating as it is for us, it must be infinitely more frustrating for him. It's like over time he's just getting wound tighter and tighter.
Another source of frustration has been his arms and hands. At this point they are incredibly tight. To put it into perspective, it takes two arms and all of my body weight to straighten his arm at the elbow when he's at his tightest. It's become increasingly difficult to bathe and dress him and there are times I worry I'll dislocate his shoulder. That would be bad...
But the good news is that we have new braces for his elbows and wrists, and when we can get them on him, they seem to be helping. We also got to see this new physiatrist a little early, and he's doubled Dad's dose of muscle relaxer and started him on ambien at night. Honestly sometimes the only time Mom and I have peace of mind is when we've knocked him out with a huge dose of muscle relaxers, ambien and melatonin. I know that sounds bad but he sleeps so soundly. His arms relax down to his sides and sometimes he even snores. Seems almost normal. At least we know he's not in pain or uncomfortable. Makes it much easier to enjoy a nice glass of wine and DWTS (I assume no one reading this lives in a cave so you are familiar with the acronym). Yes, I watch that crap now. And Bristol should have been booted off last week. I was enraged.
As far as Mom and I go, we are doing the best we can. People like to ask what we are doing to take care of ourselves, and although each day the importance of that is more evident, what are we supposed to do? Short of pulling a "Thelma and Louise" in the minivan, I'm at a loss. As of late, the routine goes: tranquilize Dad, crack open a bottle of wine (red for me, white for Mom) and queue the bad TV. A solid sense of humor certainly helps! ;)
*A note for those of you who didn't receive an email:
Send Tom a letter! Mom has started something of a letter writing campaign to Dad. We've noticed that when we read letters and cards to him he pays close attention and seems to really enjoy it. So if you're able, send us a letter that we can read to Dad to keep him updated on what's going on in your life. Even if you don't know him that well, it's always nice for him to hear about people other and me and Mom (we've gotten some cute ones from former students and friends; he really does enjoy it). And by letter I mean email of course. You can send it to me or Mom:
allisoncomstock@gmail.com
acomstock@roadrunner.com
Thanks!
Hi Allie and Tom from Jean Kammerer. When Tom first came to TO we were in the same department at Amgen. Mary Anthony sent me the link to your blog. I've sent it on to Marguerite Hartigan and Marcia Keen.
ReplyDeleteWe're all pulling for Tom and I'm glad to see the updates of his progress.