Day 7 10/22/08
October 22nd, 2008
Don’t know how long this will be, as I’m so tired I can’t see straight. That 2 hour nap yesterday kept me up half the night, and I woke up so wiped that PT was really hard. So today I stayed up… so I can sleep tonight(?). I can’t take full advantage of the PT if I’m the walking dead. Can’t burn both ends of the candle like I used to, half age and half ataxia (although the line is blurred a bit.)
After the three therapies, didn’t do much of anything, watched a movie to stay awake, and I spent some time with the kids here. One little boy kept asking me to sit on the floor with him. When I told him I couldn’t, he asked me to pick him up, I had to tell him I couldn’t do that, either. One of the things about this garbage that bothers me the most is my inability to pick up my kids. Well, with a little luck, that will change.
I saw Jim and his wife today, he was hardly using his cane. He’s looking forward to Friday’s stem cell infusion even more than I am. And why not? That’s why we’re here.
So let’s get on with it.
Entry Filed under: Uncategorized
6 Comments Add your own
1. melissa tantillo | October 22nd, 2008 at 11:20 pm
God, isn’t sleep one of those magical, mystical things that we don’t appreciate when we can get it, and then miss and need so much when we can’t? I’m sure that I functioned 1000x better when I pulled an all nighter as a kid, and now when I don’t get a good night’s sleep, I’m just about useless!! What is it that they say, ‘youth is wasted on the young’?!!
Don’t let Jim’s progress trip you up (no pun intended), you said that he was better off in the walking department than you were to begin with. You said that you were feeling better after your 1st infusion, too, and you’ve still got the best part of all this to come. LIke you said, bring it on!! We are all so excited to see your progress and results, and I am so completely certain that it’s going to be remarkable! So, get some sleep and go get ‘em. You have an amazing support system all over the place and unfortunately, you are the one who has to do all the work. But you’re doing it!!!!
Lot’s of love and crazy happy thoughts~ Melissa
2. sylvia | October 23rd, 2008 at 1:40 am
As a person who has not been able to do floor stuff for a long time, let me tell you how I accommodate the lil chil’ens. After you tell them that you can’t pick them up, ask them if they can pick you up instead. When they ask you to get on the floor with them, tell them only if the answer to “can they pick YOU up” was yes. Seriously though…take this opportunity to show them how envious you are of their abilities. The little show-offs will gladly bounce up and down from floor to standing and floor again, all the while saying, “see how easy it is?”.
3. sylvia | October 23rd, 2008 at 1:44 am
..oh!…and congrats to Jim! It’s nice to hear SOMEONE got some sleep. If you are reading this Jim…way to go!
4. Aunt Connie | October 23rd, 2008 at 2:54 am
Mike!
This is the first time I knew there was a name for what has been affecting you. I get occasional bits and pieces of family news, as you might guess, but when Anahid told me you had made this dramatic journey and what had led you to do it, I was thrilled by your extraordinary courage!
There are many areas in which ancient Chinese culture leads – and medicine, I believe, is one of them. And seeing even the early improvement is astonishing and so encouraging. But be careful not to overdo. Slow and steady.
And being alone in addition to the new world of treatment, I’m sure you’re experiencing loneliness and the culture shock. I visited Chengdu and Lhasa, Tibet in February but I was on an adventure and even then, I know you’ll need to hold friends and family close in your mind and heart because sometimes it feels like you’re on the other side of the moon! Fortunately for you, the line of people who love you runs that far!!
So, much love to you. Couraggio! And keep the sweet spirit I remember so well. And, not to overlook the obvious, as Johnny would say, in the words of my favorite Orthodox rock and roller, Phillip Namenworth, one of his tunes goes “there ain’t no harm in prayin’, there ain’t no harm in sayin’ I need help from above…” We’ll all be praying, big guy!.
Big smooch. Love, Aunt Connie
5. Jeff and Leslie Crowe | October 23rd, 2008 at 11:19 am
Mike,
I should have warned you about the IMMEDIATE rush of energy that you get….and the crash that inevitably follows due to over-exertion. LOL PLEASE know that it will get better….I promise.
One more thing. Before I got my treatments, I was unable to pick up my youngest daughter (5), but when I got home, she ran to me and I picked her up with very little effort. People that read this will probably say “big deal,” but you and I KNOW what a “big deal” it is.
I sincerely hope everything continues to go well….
Jeff
ps. If Wendy’s fiance is still around, ask him about the gene therapy they’re doing in Japan. He has the same “disease” as I do (SCA I) and he seems to be very well informed/educated.
6. Jeff and Leslie Crowe | October 23rd, 2008 at 11:54 am
By the way….if anyone reading this gives a damn, check out these videos. I have spino-cerebellar ataxia I.
http://www.youtube.com/watch?v=W1di1IryA5Q
AND
http://www.youtube.com/watch?v=hJG5OebFHAE
pretty cool stuff…..
Jeff
Leave a Comment
Some HTML allowed:
<a href="" title=""> <abbr title=""> <acronym title=""> <b> <blockquote cite=""> <cite> <code> <del datetime=""> <em> <i> <q cite=""> <strike> <strong>
Trackback this post | Subscribe to the comments via RSS Feed