Last post Thu, Jun 19 2008 7:05 PM by Saydrah. 21 replies.
Hi
I am looking for others who have ALS or have just been diagnosed with ALS! I cannot find any chat rooms for persons with this disease!
I need to talk to others who have this disease!
Thanks vinci5
Hi Vinci5 and welcome, I'm sorry to hear of your recent diagnosis.. I don't have Amyotrophic Lateral Sclerosis (Lou Gehrig's disease) but you've come to the right place to look. Stick around and keep asking questions and I'm sure you'll find some support. There are chat rooms and search engines here that might give you a start. Good luck and look forward to hearing more from you.
Hi Vince and everyone...
There is a group for those living with ALS with almost 3000 members...
http://health.groups.yahoo.com/group/living-with-als/
This group is very active... it has really helped me... I have ALS too... I have been living with it for 12 years...
vinci5,
Welcome to Disaboom and I hope you can find the guidance that you are looking for.
Dave
hi
im katrina how are you
]hello how are you im katrina this is my email add
katrinamendez90@yahoo.com
Hello and welcome. I do not have ALS, but at one time the best friend of my husband and I did. This is probably a very hard time for you, as several people have said, and I would like to second a couple of suggestions: firstly, if you stay around, you will probably find some who share your or a somewhat similar disorder. Secondly, if there is a local or state organization, it would be a good idea to contact them for information and support. Thirdly, the OT suggestion of preparing your home now for possible changes, while potentially possibly a little scary at the moment, is really helpful. While there is a chance you may not need those preparations, it's a little like living in Florida and keeping the hurricane supplies ready during season.
Please feel free to send me a personal contact or email if you want to have a talk. I spent a lot of time with my friend during the period he endured this illness, and I am quite familiar with the issues, symptoms, and ramifications.
You have my warmest support now and in the future. You have come to one of the best places to work with your diagnosis, and find some friends. Regards, Bonnie
Hey there, my name is Jennifer71 and was diagnosed in Aug. 2007 with ALS. Needless to say I am devastated. I am only 36 and a single mom with 2 small children. This has been very tragic for myself and my children as well as friends and family. I would love to talk. I have not wanted to accept the diagnosis, but am realizing it is true and trying to deal with it as bestas one can. I would love to talk to other individuals with the same diagnosis. Please feel free to talk anytime. We all need to pull together in such a sad time.
Hi Katrina, my name is Jennifer and I too have been diagnosed with ALS. I am 36 with 2 children. I would ove to talk and listen to another individual going through the same as me. My email is seeblueeyes1108@yahoo.com. Would love to talk to you.
Hey Katrina, I have been better. How are you? How long have you been living with ALS?
Hi Vinci5,
My sister was diagnosed in Jan 07. You are not alone. I would like to talk to you if you would like.
I don't know how much I can help but I can listen.
liszler
I can't imagine what you are going through right now. All the best to you.
I recently saw a big gathering of people with ALS on a site called PatientsLikeMe. Many are tracking their disease progression on charts. It may be helpful to you, who knows.
We just started a mucsular dystrophy group. ALS is part of the MDA'S research and service programs. There are not too many members yet, but you can probably get some questions answered.
Brad
Hi, my name is Pammy and in Jan 08 my mom passed from ALS...I was her primary caregiver for 6 years...I would be happy to talk about it and share any info I can, as the experience has taught me quite a bit about the disease and resources...
