Next Sunday Jason, Tony and I will drive to Dallas for our visit for the ARC16 Trial. This will be the final visit in which he is taking the meds. Two weeks later he will go for the last time just for an evaluation to make sure that he is not having difficulty after stopping the drug. I was told that the researchers saw little change or regression in that two week period with other trial participants, so it?s good to know that he probably will be able to maintain his progress for a while.

I am no longer cautiously optimistic about this drug. I am optimistic. Before the trial he fell almost every time that he tried to walk without his walker. Or turned quickly. Now it is common for him to make short little trips without it (from the sink to the fridge, for example). When he first started to venture out without it, his steps were high and exaggerated, sort of out of control. Now they look much more normal. He may have fallen once in the last couple of weeks. I heard a crash and went to check on it. I asked if he fell and he just said that he was clumsy. I just let it go and didn?t learn if he had fallen or had dropped something.

He has never had much problem with confusion or memory. I still use him to remind me to do some task or be someplace at a certain time. I am curious to learn how he will do on the cognitive exams next week.

His speech has concerned him more and more over the last year and had gotten to the point that he was uncomfortable meeting new people or joining in on a discussion with several people. An incident happened yesterday that surprised me. I have a young man who helps me in my greenhouse. Ah, to be 26 again! He had out of town relatives visiting and asked if he could bring them over to show them our orchids. Tony asked what time they were coming but I didn?t expect him to join us since the greenhouse is not really his project. He enjoys the flowers but that is about it.

My helper brought his son, his parents, and his grandparents. Shortly after they arrived Tony came out and joined us. He introduced himself and talked with them. That is five people he had never met and he hasn?t spent much time with the helper. I was really surprised and pleased. That tells me that his self consciousness about his speech is improving; at least in his own mind his speech is better. I have always been able to understand him.

I really dread Tony going off the drug and having to watch him lose the ground that he has gained. HURRY UP FDA. Maggie

While he may blame poor speech on not liking crowds, I think it could also be harder to keep up with those situations. If that were the case then his cognition may be showing improvement.

You're right. I thought of speech because he comments that it is hard for him to get the words out sometimes. He just seems to be doing generally better.

Wow Maggie! That is really awesome, and also good to hear to he may retain this as well, yes, hurry up FDA!

That is wonderful Maggie!! I hope they hurry up,too!!

That's great news, Maggie.

Keep us posted!



jl

Maggie, thanks for the update; wishing you the best.
Still hope to meet with you all during this trip.
Bob

Thanks again Maggie for your posts. I wish you and Tony the best!