New York,Canada and Vermont

[dldred]

Hi
My mom was diagnosed with ALS recently and I was wondering how many people in our area also have a MND. I would like to have my mother meet others who have this so they could compare notes and support each other. We live in upstate NY, 10 minutes from the Canadian border. We are 45 minutes from Plattsburgh NY and also 45 minutes from Massena NY. If anyone would be interested in meeting (gosh this is starting to sound like a pick up line) or even a phone call please let me know. I appreciate your input on this.

Thanks
Dana

 

[BethU]

Dana ... have you contacted ALSA (ALS Association) yet? They hold numerous support group meetings all over the country, and I am sure the Canadian ALS society does too. My ALSA case worker has been a godsend, with information, support, loaner equipment, etc. They will surely put you in touch with others in your area.

Take care.

 

[dldred]

Thanks for the info Beth, I just e-mailed them about anything close to our area. I appreciate your help.

Dana

 

[dldred]

Well I haven't heard back from the ALSA yet, so if anyone is interested in sharing any ideas in person or by phone the offer is still open. I just want everyone to know I am not some kind of freak stalking MND patients,( I have been told I am strange but not for that reason) I just thought it would be nice for my mom to be able to meet some people who know what she is going through and they could share their stories.

Thanks everyone
Dana

 

[rose]

Dana,

No, you don't sound like a weird stalker, its a good idea actually. I'm disappointed, even though not surprised, to learn that you've not had a response back from ALSA yet. I did get a welcome type email from them when I joined, but no information concerning local group meetings, or anything along those lines has been sent.

Has your mom been seen a a local ALS clinic yet? They might have contact information about local meetings, although probably cannot violate the HIPPA by giving you actual contact names of those geographically in your area who are PALS.

Although I've not met others locally, I do have a true sense of a support group by being on this forum. I realized a while back that even though Bulbar onset of ALS is pretty uncommon, because of the interaction here I don't feel alone in it.

good luck!

 

[GlenBrittle]

Hi Dana,

If you want to be a weird freak stalker , then by all means , stalk away ! Most people wont admit to being strange , so that gives a head start.

Welcome to the site

Glen

 

[Al]

Hi Dana. Go to www.alsa.org Click on In your Community and then your state or postal code to find groups near you. For Canada, go to www.als.ca and then provinces. I think Quebec is closest to where you are but am not sure.

AL.