Shankopotomas

Thank you Deb and Ladyinn - my apologies for taking so long to respond - having my little girl outside of her mom has made life much more hectic! We did bank her cord blood and cord tissue, and the doctor said he was able to get a significant amount. With the developments going on down at Emory in Atlanta I'm hoping these stem cells might what keeps me around even longer. My progression has been slow, and I'm taking Dexpramipexole, but I'll take any help I can get.

Mike, Ladyinn makes an excellent point about the stem cells. A friend in the medical field had a spinal cord injury that left her paralyzed. With great determination and spirit (also good medical care) she is now walking with a cane. She had her baby's cord frozen so that as the technology improves she may be able to use the stem cells down the road. Please consider this.....Meanwhile hope things are going well for all of you...Deb

Mike, did you ever give any thought to the fact that your baby girl might be coming into your life at just the right time. With all the work being done with stem cells, her umbilical cord could be something you will find helpful in the future. A nurse of mine asked me, when I told her about you, if you had given any consideration to stem cell treatment. Just a thought that I am passing on. Good luck and enjoy that baby girl!

Hi Mike,
Congratulations on the expected addition to your family! My baby (24) lives near Beacon, NY. The photos were from her team. Daughter #2 and I are in GA. Best bet for info is to contact your local branch of the ALS Association or Muscular Dystrophy Association (they have an ALS branch). Make sure you register with both organizations. My girls are on Twitter and follow ALSA on there and "retweet" their info to help spread the word about ALS. You're doing alot by participating in a Clinical Trial. Thanks so much for doing that! I'm in the Ceftriaxon trial and have tried to participate in as many other smaller ones as they come along. Make sure you register with the CDC and take their surveys. The registry is only a year old and hopefully will provide some good data for scientists down the road. Make your growing family a priority, do the things that are important to you. You've found a wonderful place to come for support........Deb

Welcome, we have had some people face a new birth and als dx. You sure will be able to appreciate the good and look past the bad, it is an exciting time. Welcome to the forum..

Mike, I think the Knopp trial is the Dexpramipexole one (which I'm in) see if this link works and scroll down 3/4 of the page down to HappyPhyscian's post...
http://www.alsforums.com/forum/als-drug-trials/16045-np-001-promising-phase-2-clinical-trial.html
Good luck, Helen

I forgot to congratulate you in the baby. Your wife is right. Enjoy today. We are lucky we are in the dexi trial.this is supposed to be a promising drug. Take care
Susan

Thanks Susan - I try to do my best to stay positive for my wife too (as she's really starting to show now - it took until 20 weeks but she finally actually looks like she's pregnant). She's always telling me, be happy for today, and deal with tomorrow tomorrow... I just hope these stubborn motor neurons decide to stick around for a while.

Hi,
Just wanted to say hi and tell you that your not alone in this fight. It's stinks but educate yourself first . This site is a great start. I was numb the first month but it gets better. Don't let this disease take away who you are. I have an 11 year old daughter and a wonderful husband. I can't be down for them.
I know how hard it is but try to stay positive and enjoy each day.
If you have any questions, feel free to message anyone here including myself.. I got answers that even my ALS neuro couldn't answer. Also, get with ALSA in your area. They are very beneficial.
Take care,
Susan