dberbicegirl

hi. i just have to get better at learning how to get around on these forums. i learned how to accept a friend request yesterday and now just saw this. thank you for your interest!

i don't come here often. guess i'm still in denial? just posted yesterday asking a question, but can't find my post. oh well, i guess i'll have to just plan on sitting down for a few hours to learn how to get around.

symptoms are rapidly getting worse after car crash in 12/11. also have severe cervical stenosis and wonder if it's als or the stenosis is causing symptoms of atrophy in left hand first and now the right. hmmmmm going for surgical 2nd opinion end of april.

i'll check back again in a day or 2 to see if u've succeeded in sending this message.

Hello,
I have the Dynavox still if you are interested in it and am open to any offers. I have reduced it to 3,999.

Thanks,
Levi

My Christmas wish for you and your family is to live in Peace Harmony Laughter and Love and know how Beautiful You shine so bright with your Love and Light! I just want you know how much you mean to me ... we have never met in person, but you are known to me and stay in my heart. I feel we have been friends forever ....

You are in my prayers. Kim

Hi Desi. Thank you so much for your kind message, and I apologize for taking so long to respond. It's been a busy summer and I haven't been on the forum much lately - partly because my brother is still doing okay and I'm trying to take one day at a time and not think too much about what's going to happen.
I am so sorry that your brother's illness is progressing quickly.
I imagine some people have an easier time than others accepting the diagnosis. I think my brother will be one of them; he is an inherently positive person and I know that will help him. It is a very difficult thing to accept, and I know the road ahead will be a hard one for everyone involved. It is excruciating to have someone you love be facing this. My heart breaks for my brother and his family. I really empathize with what you're going through. My thoughts are with you on this journey. Please take care.

Hi, just saw your message. Sorry your brother is declining. Here, no speech, no arms/hands, PWC dependent, but thankful to have the help I need to enjoy family and friends daily, get out and about, etc. my iPad is my lifeline. Good luck!
Sue

Thanks for the response and how is your dad doing? My brother did have the stem cell treatment, unfortunately his speech has gotten worse and has lost the ability to use both of his arms. We took a chance and went to Alabama to a doctor we saw on CNN. Was your Dad's treatment effective? Please let me know how long it took and the end result. We are all over the place with this one and surprised at the progression over the past couple of months. Thank you very much.......

Hi, I'm new to this and you are the first person I comment. I'm not sure yet on how to put a new Post for people to comment but I found a post you've opened about a Stem Cell treatment. I have a lot of information I can share, Me my Mom and my Dad went to Mexico to perform StemCell treatment on my DAD. Hopefully I can be of any help to you about this situation, I'll be more than glad to answer all your questions.

My dad started in 06 with slurring, we thought he had a stroke.he was finially diagnosed in 08 and passed on June 15, 09. He had Bulbar Palsy. Dad drove to the day he died but was at 100 lbs and feeding tube ect...Dad went to Hopkins and ended up at Univ. of Md Speciality Hospital on Green Street, Balto. Dr. Russell. These people are incredible. They have machines ect...there before you need them.Has your brother been tested for Lyme disease, there are 2 tests, one for recent exposure and another for exposure in the past. ALot of the syntoms are the same.Maybe take him there and tell him u just want to see if he is right. My dad a machine to speak for him and he wrote 1000's of notes. It sucks. He did not bank his voice by the time he was diagnosed his voice was gone. He used the voice named Paul, I tried to talk him into the mexican voice but he would not go for it. I will never forget the first time he phoned me using the machine. I cried for hours.

Hi! I'm sorry I haven't responsed sooner to you. Our family is so new to this disease that I don't know much about it to give out any advice. I heard that some people have banked their voices and others say there are some applications you can get on your computers to speak for you. Try and get your brother to eat good nutritious meals and trying to get him to drink Ensure to keep the calories on. Feel free to write me anytime. Sorry, I'm not much help though. Kim

Welcome neighbor. I live in Pasadena Md, my dad passed for Bulbar Pasly/ ALS. My dad had some of the best doctors in Md. If you need names and numbers (or a shoulder) you just let me know). This is a rough road and we are all here for you, some of the people on this site are the best...

He needs the BiPap immediately, and he should have a cough assist and suction machine. As for Rilutek, I don't think it makes much of a difference, personally. He does need to get a speech assistive device if possible (Dynavox, Tobi, etc.) That will help him communicate and stay in touch with the world via Internet.

Thank you for your friendship ~! :0)

Sure, what would you like to know?

You can write anything you want. How did the stem cell go? It sounds like he's in semi denial about ALS. He'll have to come to terms with it sooner or later. Facts are facts. You know? I hope you are doing okay!