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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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#21 | ||
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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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#22 | ||
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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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#23 | ||
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New Member
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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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#24 | ||
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Junior Member
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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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Walking by faith , Michael . Last edited by AlmasDaddy; 02-26-2007 at 06:18 PM. Reason: opps...;) |
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#25 | ||
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New Member
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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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#26 | ||
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New Member
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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.. ![]() ![]() |
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#27 | |||
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In Remembrance
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. ALS/MND Registry . |
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#28 | ||
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New Member
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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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#29 | ||
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New Member
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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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#30 | ||
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New Member
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What is glutathione?
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