Updates: 01.27.2007


I have been getting a lot of questions about the experimental medication, so thought it was about time for another update. Jin’s persistence paid off. We ran into a few stumbling blocks since the original person at CytRx Jin was talking with resigned to take another job, but he found another contact who was willing to take over where the other man left off. They sent a six-month supply to Dr. Drexinger who is the neurologist sponsoring me on this medication, so I started on the Arimoclomol about three weeks ago. The only side effect that Jin has seen so far is drowsiness. Personally, I feel as though I’ve been “drowsy” since about midway through my pregnancy :-). Besides symptoms that I might experience, they are most worried about effects on the kidneys. Emory checked that out at last week’s appointment, though, and so far everything looks fine. I have not really seen a difference in how I feel or how my body has been behaving, but it is still early. Right now, I’m just glad I haven’t had a horrible reaction. That’s the first step!

Luke is still doing great. He starting to become a professional crawler and will climb on anything put in his path. He has also been pulling himself up to standing on couches, coffee tables, air filters, toy boxes, and anything else he can possibly get his hands on. Since he’s almost faster than I am and I still feel wobbly on the stairs, we have decided to get some help during the day. Ellen is a friend of ours that used to be a nanny in a former life. She became available to help right when we decided it would be a good idea for someone else to be around during the day, so I took that as a good sign. Right now, she’s coming three times a week from 10 to 7 and Luke has really taken to her. I think she is still trying to figure out if this is what she wants to do for the foreseeable future, but we are hoping she decides to commit for awhile.

As for me, I’ve noticed a few more things that have me a little worried. My right hand and arm have started to twitch and I’m starting to see a little bit of atrophy and a curling in of that hand as well. The dexterity still seems to be okay, which is great, but I am noticing less strength. This makes dressing Luke a little tricky, since he is turning into a very squirmy kid. Now that he has crawling down and can get from one point to another, he does not like being held still :-). The only other thing that is different is my speech. Jin says that when I get tired, I’m almost incomprehensible. I have to really concentrate on not slurring as well, so please tell me if I’m ever talking to you and I get “mush mouth” as Jin and I call it. I would much rather you tell me so I can concentrate on talking more clearly, because a lot of the time I may hear myself talking clearly even though I’m not. It’s a strange little phenomenon.

Jin is keeping busy at work and has also been spending a lot of time taking care of the house details. I think the majority of the house projects are almost finished. I’m pretty excited about not having contractors around every week, but shortly after they leave, we will probably be starting construction on the enclosure for the elevator. I don’t think we’re going to have the house to ourselves anytime soon…

I also wanted to let you guys know that I’ll probably be better about responding to e-mails now. Typing on the keyboard had become difficult, so it would take me a very long time to type anything. This was rather frustrating since I used to be very fast. But last week, someone from the ALS association came by and installed NaturallySpeaking, which is a computer program that allows me to speak and types for me. So that’s what I’m using right now. It makes some mistakes, but it’s pretty good. I’m starting to play catch up on some of the older e-mails, so I’ll get there eventually.

I hope everyone had a wonderful Christmas and that the New Year has been a good one so far!