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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 Vinci5, I am sorry to hear about your recent diagnosis. This must be a really tough time. I am an Occupational Therapist and have worked with many folks with your diagnosis. Have to connected with your local ALS association. I am working with one in Cincinnati. They seem to have some really great resources and support systems. I work in Home Modifications. I would recommend that you find a professional in your area to help you look at making your home accessible for you today and in the future. It can be really helpful for people to make the changes before they need them! Once you NEED them, it can be difficult trying to get things done quickly- if you start now- you will have the time to do some research- talk with peers and make decisions about what you want to do. Marnie Renda

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

 

hi

]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