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Familial ALS

Discussion and support for people whose lives have been touched by familial ALS. Join the discussion to reconnect with friends and acquaintances from across the country, meet new people and find support from others who share the common bond of familial ALS.

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jicaballero
  • By jicaballero · Posted 8:44 am
  • 0 replies
  • Hi, Not sure if you are passing throughout the same thing as me, but finding specialized equipment for an ALS patient is not that easy. If you know any good source please reply. Back to the main question ...

The Pain!

snowball123
  • By snowball123 · New reply November 15, 2009
  • 2 replies
  • for about a year and a half i have been having pain in my lower back, kidney area, i have been to doctors and have had every scan and test done. they gave me an antibiotic, after about 3 months the pain ...

Special Coat Rack

LAW
  • By LAW · New reply October 14, 2009
  • 2 replies
  • Does anyone know of a product that can help with someone that has a hard time raising their arms to get a coat on? We think it would need to be something that you can hang the coat down low and then raise ...

IPLEX

dustycat
  • By dustycat · New reply September 5, 2009
  • 12 replies
  • I don’t know if Familia ALS really applies to what I have to say, but the other topics were not a fit at all. I am new to this website and to the ALS community. I am requesting help from anyone who is ...

What are the odds that I will inherit ALS from my father?

paulandpaul
  • By paulandpaul · New reply August 12, 2009
  • 8 replies
  • My father is 47 and has ALS. I was really sad when the doctor told me this. And I did some research online and found that ALS might be hereditary. Will I get/inherit this disease? Is the chance high ...

I need some advice, please!

juniette
  • By juniette · New reply July 14, 2009
  • 10 replies
  • My brother was diagnosed with ALS November 2008; he lives in El Paso and I live in Dallas. I am torn, I don't know if I should move. In a nutshell - I want to be there for him, but I am a single parent ...

Spiritual Encouragement

WayneLampe
  • By WayneLampe · Posted June 1, 2009
  • 0 replies
  • Hello, Some of you may be familuar with a weeb page Oneplace.com. I invite you to visit as I play a recording from Dec 2006. I disscuss being diagnosed with ALS and depending on Jesuss Christ http://www.oneplace.com/ministries/worsh ...

pesticides and als

eric59nj
  • By eric59nj · New reply May 5, 2009
  • 2 replies
  • I am researching the connection between als and pesticides. I was employed on a terminal for 11 years where imported fruit is fumigated several times a week. I am suspected its how I contracted ALS. Does ...

Please send success stories! How are you fighting/beating ALS?

excelwithkat
  • By excelwithkat · New reply March 27, 2009
  • 10 replies
  • Hi. I was diagnosed 1 month ago after 8 long months of testing for everything from carpul tunnel to osteoarthritis. I need to hear your success stories...how are you slowing or STOPPing the progression ...

Anyone out there with Familial ALS?

jtrump
  • By jtrump · New reply March 18, 2009
  • 28 replies
  • I am looking for other families with Familial ALS who might be able to share information with me. I am curious to know if anyone has heard of any current studies going on that we could possibly be involved ...

ALS living in Shreveport, LA-needs doc

Jennifer05
  • By Jennifer05 · New reply February 28, 2009
  • 3 replies
  • HI all...I'm trying to locate a good ALS doctor for my friend in the Louisiana area. We could make a day trip out of it if you know someone in the surrounding states. I don't live down in that area so ...

limited mobilty

eric59nj
  • By eric59nj · New reply February 26, 2009
  • 2 replies
  • I was diagnosed with ALS at the end of Nov. I have atrophy in my left arm and my legs are weakened . I recently discovered my muscle in my left lung wasnt working. My question is a have a very difficult ...

Help Improve the Americans with Disabilties Act for all!!!

MarkV64
  • By MarkV64 · Posted February 25, 2009
  • 0 replies
  • Hey all! So proud to be a part of this online community! A research team at the Center for Inclusive Design and Environmental Access (IDEA), a research center at the State University of New York’s School ...

alschatroom

Tammie1
  • By Tammie1 · New reply January 22, 2009
  • 4 replies
  • pals trying to find als chat (help ...

Cortical Atrophy

dotdot
  • By dotdot · Posted January 7, 2009
  • 0 replies
  • Does anyone know if Atrophy could cause poor leg coordination and head shaking to the point that speech is choppy or one can't speak at all ...

Patient-led drug trials defy medical establishment

BobbyB
  • By BobbyB · Posted November 27, 2008
  • 0 replies
  • Patient-led drug trials defy medical establishment Associated Press - November 26, 2008 11:24 PM ET CLAREMONT, Calif. (AP) - Dozens of patients suffering from the fatal neurological disorder known as ...

Hello, I am new here, Please help me feel comfortable about opening up

Ladybug4869
  • By Ladybug4869 · New reply October 9, 2008
  • 2 replies
  • My name is Melissa I just recently started looking into projects that might can help my current family. My family looks something like a lot of yours. FALS A4V Sod1 mutation. There have been 7 members ...

How can I get Iplex?

family1
  • By family1 · Posted October 6, 2008
  • 0 replies
  • Does anyone know how one can be a part of the program in Italy so that they can get Iplex ...

Lithium

lamere53
  • By lamere53 · New reply August 8, 2008
  • 9 replies
  • We are a family of four who live in SOUTHERN New Jersey near Philadelphia. Already familiar w/the lithium results in the Italian trials, I am a recently-diagnosed male ALS patient who is DESPERATELY trying ...

sensory symptoms

Gebbie
  • By Gebbie · New reply August 3, 2008
  • 3 replies
  • I've recently been diagnosed with A.L.S. and would like to know if other people experience sensory manifestations. I have a numb feeling in 3 of my toes and across the top of one foot, and get burning ...

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