my story..

[teresa]

(does anyone know what the genetic test is called?)
In 1989 my brother's muscles started wasting, he would be crawling to get up the stairs... within months he dropped from 180lbs to 80lbs (he was 6'1). we never got a definative diagnosis.. they did all the tests. he passed away when he was 20. it was really quick, i never got over that, i don't think i ever will. he was my best friend.

my mom's doctors after complete testing thinks it is als.. her legs started weakening about 8 years ago, currently she is confined to a wheelchair. the muscles around her spine are going, she can hardly pick up anything with her hands... she chokes alot..
my parents are planning to move back to canada and i don't know where to find information or help. i looking for an extremely affordable van to transport my mom, i also need a place for her to stay.. i can't afford to renovate my home(although i would love to) to accomodate her needs. my mom is in her 50's, we have a great relationship, i need her to be close to me and my family. i have 2 kids that need to see what a great, loving and kind soul their grandmother is.

she's accepted the obvious, she doesn't want any tubes or life support of any kind. we have discussions of these types of things more often then i would like, my heart literally rips each time she brings it up. i cry all the time...

i don't expect any replies, it's just good enough being able to let it out and have a good cry

thanks

[brooksea]

Teresa,
I am very sorry your family is going through such a tough time. ALS is a very challenging and devastating disease.

I do not know the name of the test for familial ALS. Maybe someone else can answer that for you.

If your Mom is moving to Canada, please get in touch with www.als.ca as they can be a great help in providing information and help in your time of need.

I don't know where your Mom lives, but I would also advise her to get in touch with her local ALS Association in the mean time.

I think others here on the forum could help out with the Canada thing, as they live there.

[saska]

Hi Teresa,

My heart goes out to you for the struggles and the sorrow you and your family have faced. You will find a lot of practical information here, as well as an incredible amount of support if you want.

Best of luck, and God bless.

Sharon

[Al]

Hi Teresa. Sorry about your mom. Can you tell us which province you live in. It does make a difference because some have more facilities and support than others.
AL.

[edna may]

Originally Posted by teresa

(does anyone know what the genetic test is called?)
In 1989 my brother's muscles started wasting, he would be crawling to get up the stairs... within months he dropped from 180lbs to 80lbs (he was 6'1). we never got a definative diagnosis.. they did all the tests. he passed away when he was 20. it was really quick, i never got over that, i don't think i ever will. he was my best friend.

my mom's doctors after complete testing thinks it is als.. her legs started weakening about 8 years ago, currently she is confined to a wheelchair. the muscles around her spine are going, she can hardly pick up anything with her hands... she chokes alot..
my parents are planning to move back to canada and i don't know where to find information or help. i looking for an extremely affordable van to transport my mom, i also need a place for her to stay.. i can't afford to renovate my home(although i would love to) to accomodate her needs. my mom is in her 50's, we have a great relationship, i need her to be close to me and my family. i have 2 kids that need to see what a great, loving and kind soul their grandmother is.

she's accepted the obvious, she doesn't want any tubes or life support of any kind. we have discussions of these types of things more often then i would like, my heart literally rips each time she brings it up. i cry all the time...

i don't expect any replies, it's just good enough being able to let it out and have a good cry

thanks

Nothing to add just want you to know I care & wish you & your
family the best of luck EM

[teresa]

thank you, for your thoughts... i'm so glad that places like this exists... not very many people can actually relate and know what it feels like. thank you again ..
i live in Bradford, Ontario and i will go to www.als.ca

[Lorie]

Teresa, Please go to this link.


http://www.alsa.org/als/genetics.cfm...TOKEN=49179101


Hope this is helpful.

Lorie

[Al]

Teresa try www.alsont.ca They're in Toronto.
AL.