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Hello
My 44 year old neice was diagnosed on January 10,2010 that she had bulbar palsy (Lou Gehrigs disease). Within 14 days, her diagnosis was changed to Progressive bulbar palsy. At the time of her diagnosis, she was still working but had just a tad wrong with her speech.
Well, after a horrible existance, she passed away on June 27. 2010. She had been being treated at the University of Michigan Neuron Center. They were excellent with her. By the time of her passing, she had a feeding tube inserted in her chest, a cough machine to suction the mucus so she didn't choke on her own mucus, had a cough machine to help her bring up the mucus easier, a Bi Pap machine which became her lifeline to oxygen into her body and expelling the monoxide out, neck brace to hold her head in place and protect her spine, needed a wheelchair, bedside commode and could not move without any help.
The Doctors at University of Michigan Neuron Center stated that this was the youngest person and the fastest progressing ALS that was ever documented at their hospital.
With all due respect to the tests being made in Italy, the United States still recognizes Lithum....do you not think that it could of been "tried" on my neice?
Over 70 years and no country has a known factor as to "why" anyone is attacked by ALS, and no one tiny "tried and true" test for a cure.
It's a shame. My neice spent 8 years in the Air Force as an F-16 Fighter Jet mechanic before she met and married and had 2 daughters.
This disease is horrible and is still incurable.
I am writing this approximately 2 years after the first post. A very good friend of mine, a retired school teacher, was diagnosed with ALS after dealing with some of the symptoms. Mid 2009, he was driving to appointments. February of 2010, he cannot get up or eat on his own. his speech has really slowed down and his breathing is labored. I think it is just a matter of months before the end. So, the lithium has done nothing for him. We were all so excited about the lithium, but the results are nothing.
I am reposting my original post, along with new information. August 21, 2010, my good friend and fellow educator David Rich passed away after a one and a half year battle with ALS. I saw this disease mutate a robust, energetic man who would cook and world renowned chef out of the kitchen into a motionless, speechless, helpless victim. I am glad he does not suffer anymore.
I am reposting my original post, along with new information. August 21, 2010, my good friend and fellow educator David Rich passed away after a one and a half year battle with ALS. I saw this disease mutate a robust, energetic man who would cook and world renowned chef out of the kitchen into a motionless, speechless, helpless victim. I am glad he does not suffer anymore.
There are some Phase-I stem cell human trials finally taking place as Neuralstem Inc. and Brainstorm Cell Theraputics are conducting these currently as well as Advance Cell Technology and Geron Corp are coming out this year with their stem cell lines for human clinical trials.
I truely hope that they show some success in their trials.
Last edited by Six Foot Three; 08-28-2010 at 07:18 AM..
Reason: Changed wording - 6/3
Sure thing Gymbuff ..... and again like i posted a bit earlier as i jumped the gun on reporting about lithium helping those with this terrible disease however i do see the research finally moving forward with all these new stem cells and gene therapies human trials now finally taking place and of course we just never know a loved one or even ourselves could come down with this disease at anytime and so i wish these researchers and patients all the best .
Please we need to draw awareness for the disease it the cure will never be found! what are the ways that we can draw awareness for the cure and possibly get large celebrities to help hence the "Lady Gaga effect?" please register here and draw attention to this, This thread shouldnt be to feel bad it should be a march to the cure.
We just celebrated 4 years of the passing of a loved one to ALS. He was a a loving father of 3 and an active pharmaceutical chemist to the day he left us.
I have mixed feelings about a cure. Excellence overall, but mixed with frustration that it didn't arrive sooner.
I am 18 years old and my loving wonderful father has been diagnosed with a very agressive form of ALS. We just found out 2 days ago. He has can't use his left hand and is starting to lose movement of his right. He doesn't want to spend his life on machines so he is signing a do not recessitate agreement with his lawyer. Will the treatment help at this stage or is it too late? Please help me.
There is no cure, only some treatment to keep people comfortable (not sure what drugs are used). I am very sorry about your father.
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