Update On My Brother

[SharonP]

I want to say thank you to everyone that answered my previous post and just wanted to give an update.

My brother, Tommy, was diagnosed July 7, 2010. At that time he could walk pretty good using a cane. As of yesterday, 9/15/10, he now has a walker and a wheelchair. His left side is weak.

He was taking baclofen, but has tapered off because he said that when he would increase his dose as recommended, his symptoms would get worse. He said that since he started lowering the dose, he isn't as shaky and feels better. He is going to try zanaflex and see if that makes a difference. Has anyone else noticed anything similiar to this?

He has been on the ceftriaxone trial for 5 weeks now and just found out he has gallstones. I have not noticed any difference with the trial. The doctors asked him to stop the medicine for a week or so and then have more tests done.

However, with all this going on, my brother still has a great sense of humor and we make jokes about his condition. Some people might think this is a little morbid or uncaring but my brother says "You can either laugh or cry about it. I prefer to laugh."

Please keep my brother in your prayers. I pray for everyone that has ALS and their family.

 

[dldred]

My mother sounds very much like your brother with the sense of humor. We laugh about some of the most morbid things and people think we are a little warped. (okay maybe we are) But my mom has the best attitude towards all of this. Her saying is " I can't change it so what the hell I might as well have fun"

I will pray for you and your brother.

Dana

 

[halfin]

At least it sounds like he is not getting the placebo in the Ceftriaxone trial. I've heard a lot of people get gallstones. Hope he can get back on it soon.

 

[Phil M]

I take zanaflex with no problems at all.

 

[SharonP]

That is good to hear. I am hoping that he doesn't have any problems either. He did miss his physical theraphy appointment yesterday. He said he was just feeling very week. Is this normal?