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 01-03-2007, 07:44 PM #1
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BobbyB BobbyB is offline
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Thumbs up hello mark,,,sully

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

hi mark, i do belive i remember your mom n dad from steve hollys chatroom.
thats been awhile ago.
there still a few of us from steves room around here are a few links to the chatroom now and patientslikeme site.
PLM
http://www.patientslikeme.com/patients

ALS CHAT
http://client1.sigmachat.com/sc.php?id=144320

I KNOW barb, rama, jeannie, kurt and dave from the oldroom hang out there.

and please sign on the als registry we started for awareness and cure.
http://www.patientslikeme.com/registry

this forum for pals is nice.
http://www.patientslikeme.com/patients

later mark
bobby
dx/94
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Old 01-04-2007, 09:42 AM #2
DaveWv DaveWv is offline
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Mark,
I remember your parents and family well. I'm not good with names but I remember two sets of twins and Jackson. I remember jack and shelby. Did they marry? You really should join plm!,
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Old 01-04-2007, 11:05 AM #3
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In Remembrance - NeuroTalk CommunitiesBunny Hoffman Kevin Sullivan George J. Jelniker Wendy Blais

kevins name is in the remembrance thread mark.

sorry you have to join us as a pals.
bb
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Old 01-04-2007, 12:17 PM #4
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Quote:
Originally Posted by DaveWv View Post
Mark,
I remember your parents and family well. I'm not good with names but I remember two sets of twins and Jackson. I remember jack and shelby. Did they marry? You really should join plm!,

Hi Dave. Are you the guy who used a furn dolly to transfer? I loved that!
I have a twin brother Mike, twin sisters Lucy and Ann, and brothers Sam and Jackson. Shelby and Jack did marry, but Jack passed away last summer. Shelby is a great person. She is like a sister to us all. They had moved back to Washington but we keep in touch.

What is plm? I will join.

I know my mom got to know a lot of ppl and she thought a lot of all of you. I never thought I would ever be seeking an ALS place ever again. After my dad died I wanted to never think about it again, but someone had other plans for me. All I worry about now is my little brothers getting it too. Or Mike or the girls.

Thanks for writing, Dave. See you later.
Mark
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Old 01-04-2007, 12:24 PM #5
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Thank you for the welcome Bobby. It looks like you put a lot of work into this site.

I'm grateful for the link to my dad's memory. Did you know my mom passed away also? She didn't have ALS tho. But she was the worlds best CAL. I know all CALS are great, but I saw her in action, and know what she did for my dad and for our friend Jack who came to live with us for a while.

I think knowing what to expect is in some ways harder to deal with things, but I guess everyone is different too, so I'm trying not to waste a lot of time stressing. I have my stressing down to 23 1/2 hours a day now, so I;m doing good huh?

Thanks for being around.

Mark
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Old 01-04-2007, 03:40 PM #6
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PatientsLikeMe is a privately funded company dedicated to making a difference in the lives of patients diagnosed with life-changing diseases. Our personal experiences with ALS (Lou Gehrig's disease) inspired us to create a community of patients, doctors, and organizations that inspires, informs, and empowers individuals. We're committed to providing patients with access to the tools, information, and experiences that they need to take control of their disease.

Every year patients spend billions of dollars trying to manage their diseases. They make decision about which treatments, products and doctors to choose. Unfortunately, these decisions are made with limited data and inadequate evaluations of doctors, services and medical equipment. We know, because we have been there ourselves.

--------------------------------------------------------------------------------
Our Story
In 1998, a young carpenter named Stephen Heywood was diagnosed with ALS. The Heywood family began taking charge of Stephen's care, searching the world over for ideas that would extend his life and improve the way he lived. This set in motion a series of events that have lead to PatientsLikeMe, a new system of medicine by patients for patients.

Our Promise
PatientsLikeMe is committed to providing a better, more effective way to capture valuable results and share them with patients and the healthcare professionals and industry that are trying to treat the disease.

http://www.patientslikeme.com/

A new system of medical care by patients, for patientsDiscover better ways to manage your disease.
Benefit and learn from shared experiences.
Connect to those making a difference in your disease.


PatientsLikeMe is currently growing our ALS community. Not an ALS patient? Let us know how we can help you.


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Learn With UsGet answers from the collective experiences of patients like you. Discover how.
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