ALS For support and discussion of Amyotrophic lateral sclerosis (ALS), also referred to as "Lou Gehrig's Disease." In memory of BobbyB.


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Old 10-13-2006, 03:36 AM #21
tucker tucker is offline
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Default T U C K E R

tucker, Los Angeles CA
Limb onset (all), Symptoms 2004, dx. 2/2005
i have Stephen Hawking's Desease (everybody wants to call it lou gehrig's but lets face it - he's hardly a good role model - being dead and all)*my limbs aren't that hot - sadly my clever little hands went first - and since i already made my living on the computer,* i saw which way the wind was blowing and got iListen voice recognition,* smartnav headpointing gear and - keystrokes.* Voila!* back to work!* Now if only i could do handspring again!
big love to you all!
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Old 10-16-2006, 12:20 PM #22
mary fran mary fran is offline
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Smile Hello

Mary Fran..dx 1998...PC, Peg, Trache, Vent 2002...progression slowed way down after vent....I pretty much follow the same diet as Rama...I still eat by mouth..using peg for water...can be off vent 1 to 2 hrs....still talking....I have use of hands..limited....recently aquired compression boots ..I love them...
I enjoy everyday....I am so happy to have this web site....Mary
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Old 11-28-2006, 06:14 PM #23
TerrysCals TerrysCals is offline
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Default Terry

tell us your name Terry

where your from Virginia

when you were dx July 15, 2003
About a year before DX, my left hand began to weaken & the arm eventually began to atrophy - that's when I headed to the doctor, they always have bad news, that's why I never went except for emergencies prior to this

progression has been steady and unrelenting, I am now in a wheelchair with little to no leg strength, I can help in transfers a little.

what your doing - living on the side of a mountain doing my best to enjoy what I can
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Old 12-29-2006, 04:22 PM #24
AlmasDaddy AlmasDaddy is offline
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Default Thank you to the administrators and mediators of the site .

My name is Michael
I live in California with my wife and five children. Three of them still live at home , and are as helpful as teenage boys can be. I was diagnosed with both upper and lower motor neuron disease. I was a Master Mechanic, repairing and maintaining emergency standby generators, heavy equipment, police and fire emergency vehicles as well as medium and light duty cars and trucks. I specialized in electronics and fuel systems. For now I spend the majority of my day on the computer, either reading, writing or researching ALS, helping others cope with the disease and studying Bible theology.
Life is good
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Michael


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Last edited by AlmasDaddy; 02-26-2007 at 06:18 PM. Reason: opps...;)
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Old 01-03-2007, 05:08 PM #25
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Default New here.

Hi, my name is Mark Sullivan, and I was dx'd with ALS last March. I knew what I had for several months, but didn't have the guts to face up to it.

Does anyone here remember Kevin or Kassie Sullivan from another chat room. I think it was Steve's, but not sure.

Kevin was my dad, and he passed away, but he also had ALS. I know my mom got to know a lot of great people but I just didn't pay enough attention at the time.

I'm glad I found this place. I looked for the other chat room, but couldn't find it.

See you around.

Mark
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Old 01-04-2007, 04:48 PM #26
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Default Welcome

WELCOME MARK
I KNOW ALOT OF FOLKS ARE STILL AROUND FROM STEVE'S CHATROOM THAT REMEMBER YOUR FAMILY VERY WELL AND WILL BE HAPPY FOR THE UPDATES. SORRY TO HEAR YOU HAVE ALS.. HOW ARE THE GIRLS DOING AND THE LITTLE ONE(SORRY FORGOT HIS NAME)?
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Old 02-28-2007, 11:42 AM #27
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ALS/MND Registry

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Old 03-01-2007, 10:28 AM #28
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Exclamation Here Sir!

Hey, This is Steve in Fayetteville NC, aka swhite.geo, or AFAMMOSteve (USAF+job+Steve), dx'd 7/2002, Permobil Chairman Entra 3 years, PEG 11/06, slow progression, until the last 6 months or so. Also had emergency appendectomy last month, cardiac catheterization a year ago, also malignant melanoma removed the same month as my dx, at age 39.

Anyone tried colonic irrigation? I have an RN that's getting her 2nd of 3 (for price of 2-$150) treatments Friday, after having bowel problems... I'm considering it.

Last Thursday, my next older brother was t-boned at an intersection, driver's side, he had traumatic brain injury, yet to wake up, getting trach today.

Prayers appreciated!!

Thanks Bobby, for your hard work here!

http://steveayse.spaces.live.com
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Old 03-19-2007, 12:08 PM #29
EJW1961 EJW1961 is offline
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Hi,

New to the forums.
I am a 45 yr old female. dx Dec.2007 with ALS
Lower limbs only, cannot walk without cane and braces. Other than that, no other symptoms yet. I am talking various supplements and vitamins, as well as drinking lots of water, which has seemed to have diminished the fasc... "twitching" in my muscles.
I am searching all the various ALS sites for information on this ugly disease.
EJW
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Old 03-25-2007, 11:17 AM #30
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What is glutathione?
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