lizzie11957

I miss your blog, can we get another one? Hope you are doing well.

Thanks so much for posting. I didn't know that we would be seen more frequently if he were in a study. I talked to the rep for MDA and she said we should be going to the Clinic for PT. I told her that we have a PT evaluation set up with the VA on 6/24th but she emailing Nicole. I was glad to talk to someone about his care.

Hi Lizzie
I saw that you are in Centerville. We also see Dr. Glass, my husband was diagnosed in April at Emory and I see that you're in one of the trials. He hasn't signed up to participate in any of the studies but I think I will encourage him to do that at some point. We've gone to the Mountain Park Pool on Tuesday for the water movement class for the past two weeks and it seems to be helpful. This has been a whirlwind of emotions and doctor appointments during the past six months. Hard to believe how fast our life in retirement has changed.
Georgia Peach

Hi Lizzie! I hope you're having a good day. Keep on dancing!!
Love,
Marta

I love your saying I'm putting my umbrella away and putting my dancing shoes on. lol

Got through my first screening for participation in the Ceftriaxone Drug trial at Emory. Friday, they will do an ultrasound of my gallbladder. As long as the GB is healthy, I'm officially in the trial. I'm excited, but also a little frightened. Not of the meds, I'm a little afraid of the catheter placement. That whole "juguler" vein thing is scary. Anyway, I know I'm doing this for all the right reasons. As a teacher, I feel obligated to help these brilliant doctors try to figure this disease out and put a stop to it. Would love to communicate with anyone else in this study - just for support and someone to problemsolve with. - I'm still dancing in the rain ;-}

Dr Glass is very trustworthy. He can give you some good advice. Thanks for your prayers. I will pray for you as well. Good luck!

Hey Lizzie...Thank You for your kind words. I chose the stem cell surgery for several reasons. 1) High Risk but High Reard...while the risk is high you can't win the lottery if you do not buy a ticket. 2) With the Ceftrixone their is a 1/3 chance of getting a placebo. 3) It seems to me the ceftrixone is already being used by hundreds of people, I am not saying the possibility of it helping doesn't exist but if it would stop the progression it would seem somehow we would have heard already. 4) Finally I felt a moral obligation to do everything I can to help advance the science to find a cure for ALS. So if they need Guinea Pigs then I will do my part.

All that being said if I would not have qualified for the Stem cell surgery I definitely would have done the ceftrixone trial. After all I feel that trying something is better then doing nothing at all.

I hope you are doing well! Stay strong & Keep the faith!

Hi, today's post by Rose, What ALS can't take, inspired me to write a new blog. Thank you Rose! You made me realize that there really isn't much it can take away. Please take a moment and read my blog and let me know what you think. I'd start a blog on here, but I can't figure it out ;-( dumb I guess.