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  • I am sorry about your borthers diagnosis. Remember there is life after diagnosis. I hope if he is considering stem cells that he is only looking at the FDA approved trials either at Emory University which is sponsored by Neurastem or the Brainstorm trial that is going to take place at one of the hospitals in Massachusets. I have been lucky and have seen positive results but they are still learning and trying to understand the potential of stemcells. My results are atypical and the study at Emory is really focused on safety.

    Please do not allow him to get sucked into the scams that take place mostly in foreign Countries but ocassionally here in the U.S. as well. There are no "approved" stem cell treatments, just trials that are studying yhr impact stemcells can have.

    Good luck and please feel free to reach out any time with questions.
    Hi Desi,
    Doing ok, thanks. Mine started bulbar plus hand. Good advice to have your brother look into getting a G-tube. I got mine in Nov, can still eat soft foods, use tube for about half my calories. Keeping weight on is so important! At this point I have no voice or use of hands, rely on my iPad with a cool headstick my husb and I rigged up, I look like a woodpecker but get by. So glad you're there for your brother, my 3 siblings make a huge difference in how I live with this disease. Attitude is everything! Hang in there,
    Sue
    P.s. I was born in DC, lived there until 15 (NW, near MD line)
    In response to your question we saw a private neurologist (Dr Gary London) who referred us to GW - Dr Byatt. My brother was not convinced even after doing the EMG TEST. We again went to see a Dr Hoke at John Hopkins. They all concluded that it was ALS. He never worked in the USA so he is not entitled to SSDI. He was a pilot for 24 years flying for Guyana Airways Corp. and then started his own business in St Lucia. I did enroll him with the ALS division in Maryland - getting the equipment is one thing, where he lives has no facility for a wheel chair, half of the time they do not have electricity. How will he get the equipment to work.
    By the way, is your brother being seen at Johns Hopkins, George Washington, or NIH? Just curious. And as for the script Ril u tek, most don't bother. Comparing the extra time given versus cost and side effects really isn't worth it. Also, make sure your brother signs up for SSDI right away and contact the M D A and A L S in MD asap. Get the equipment BEFORE he needs it, especially the pwc. I'm still wading through BS trying to get mine. Its been over 7 months. Ridiculous, but true.
    If I can help in any other way, please contact me.
    Sending prayers,
    Toto
    Believe it or not I do. His name is Ted and I believe his profile name is Tedh5. But don't quote me on his profile name. Unfortunately, they only took a handful of people and Ted was the only one to revert back. He still has ALS, but his has become "?dormant?" I'm really unsure of what you could call it. He will be going back soon to have more injections done. I believe if you look under the research threads, you might be able to read about it. Even if it is "closed" you can read it just not post. And of course you could contact Ted yourself. Emory University in GA, is the only place they are doing it, I believe.
    Give your brother time to grasp what is happening to him. Every function lost is similar to a death, he will never be able to do ? ? ? again. When he's ready, please let him know about us. We are all living with ALS.
    Sending prayers,
    Toto
    Hi,
    I just saw that you had posted on Ann's (abbas child). I just wanted to let you know, that Ann passed away last December. When you go to a members page, under their profile name, there is a date which is of their last postings. Now in Ann's case, her husband Phil has used it a few times. Just thought you might like to know for future reference. I also see, that you are from MD. I was born and raised in Anne Arundel County. I don't miss the traffic but I sure do miss my blue crabs.
    Its good to meet you, wished it had been somewhere else.
    Sending prayers,
    Toto
    Hi again ! The site wouldn't let me write anymore. I will let you know what information I find out from my dad's appointment. Have your brother eat well and try to get him to drink a protein drink or Ensure at least once a day. Surround him with positive people and things as much as possible. Take it one day at a time. Write anytime and share more info about yourself. This is a horrible disease but they are making advances in medicine everyday. Take it one day at a time and laugh when you can. Kim
    Hi! I am relatively new to this site as well. My dad who lives normally in the same town as me in Illinois is currently in Dallas, Texas going back/forth from my sister Cindy and brother Paul's homes. He is going to have his first appointment with a ALS specialist tomorrow. I'm sure he has ALS but I wasn't impressed with the neurologist that diagnosed him and hope we get more info tomorrow. My dad is still debating on taking Ritulek or not. Your family sounds like they are in denial which is probally their way of coping. I wouldn't push them too hard yet but share with them information that will help in your brother's care.
    Hey hon, I am sorry about your brother.. You said he is in denial, I would think that's a little normal. Would you not be shocked and maybe not want to believe it, if it were you?? I would. Give him some time, he is going to have so many emotions, from crying, laughing, depression. He is going to have to find a way to work this out. It is good he has you. Just love him, let him know you are going to be there for him. Hopefully you both could get on the forum, I promise you will learn more here than from most doctors. Don't feel bad about asking anything or feelings. WE all have been here. We are here to help.
    As for Rilutek, I don't take it either. It's about 50/50 according to my Neurologist.
    I don't know sweetheart. When friends ask me "Why you?" I ask them "why not me"? It's just life. I understand your sense of bewilderment and confusion. Your brother needs you to be strong so he can be strong. All the denial in the world won't change anything. I prefer to live my life rather than mourn my ALS and I encourage you and your brother to do the same. Contact your local ALS Association. They can help you find resources to help your brother. They also can lend you equipment for as long as you need it. I'll google a link for you so you can contact them. We can do this. There is no time to waste with unhappiness. Help your brother have a good time. There is much to live for Dear One!
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