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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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10-16-2006, 12:20 PM | #1 | ||
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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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10-05-2006, 03:04 PM | #2 | ||
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Colin
dxd may 2006 bulbar onset may 2003 speech almost gone plus hands and right arm also legs very weak still getting about have quality of life....yahoo... |
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11-28-2006, 06:14 PM | #3 | ||
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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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12-29-2006, 04:22 PM | #4 | ||
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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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02-28-2007, 11:42 AM | #5 | |||
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In Remembrance
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__________________
. ALS/MND Registry . |
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03-01-2007, 10:28 AM | #6 | ||
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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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03-19-2007, 12:08 PM | #7 | ||
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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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07-17-2007, 10:56 AM | #8 | |||
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In Remembrance
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__________________
. ALS/MND Registry . |
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09-28-2007, 09:23 AM | #9 | |||
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In Remembrance
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__________________
. ALS/MND Registry . |
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02-11-2008, 02:30 PM | #10 | ||
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Hello, i'm Cheryl from Salem, OR. 50 yrs
DX sept 06 bulbar onset can't talk eat or walk bipap 10/06 feeding tube 11/06 wheel chair 6/07 |
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"Thanks for this!" says: | BobbyB (02-13-2008) |
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