Patient Knows Best?

Action 4 Ashton > Clinical Trial > Patient Knows Best?

This is totally atypical for Duchenne, very out of the blue and completely unexpected. So this morning started normal. I get Ashton out of bed, rolled into the bathroom, help him get out of his wheelchair and onto the toilet, then leave to give him some privacy. When he is done he calls me back in. I came in to see him trying to put his clean underware on over his feet, I then help him get his clean pair of pants on up to his knees then lift him to standing and he starts saying “At least I know that I will be able to use my arms and hands forever but I still don’t know about my legs.” I had to ask him to explain what he means by that and he says “It is easy for me to move my hands and arms now but it is still hard to use my legs.” Some background information, Ashton has anxiety wondering how he will function in the future when his hands get tired from using the computer or playing his video games for some time now and as of this fall he can only walk with assistance. Now could there possibly be any other explanation at all for this other than he must not be on placebo? He started a double blind clinical trial for an investigation drug back in August and receives a two hour drip infusion every twenty-eight days. I guess we will have to patiently wait and see after he moves on to open label at the end of 24 months to be positive but this sure is some exciting news! Very exciting to think that Ashton actually could be on a drug that will change the outcome of his life with Duchenne!! And on the morning after the 6 year anniversary of getting the your son must have Duchenne phone call yet too. 

 

 

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