My Mom

[Cathy]

Hello Noreen
I am very sorry to hear about your mom. The exact same thing happened to my mom, who was diagnosed with ALS and was palliative. My mom did not go to the ALS Clinic, but she did see the ALS specialist who gave us a wealth of information. Things happened so quickly that it was good to have someone we could turn to who would give us relaible, straight answers. It also helped for us to be able to give accurate information to the health care providers, as they had only limited contact with people with ALS.
Please feel free to contact me. I think I am set up to on this discussion group to receive private e-mail.
Take Care of yourself, and of your mom. My thoughts are with you.
Cathy

 

[DebbieD]

Noreen and Cathy, my mom was diagnosed with ALS also. My heart goes out to both of you and your families! My mom was also misdiagnosed for a long time even thought we told her family doctor that her brother and cousin both died of ALS. My mom has had great support at the ALS clinic at Sunnybrook Hospital in Toronto. The staff is wonderful and so helpful! You mention you need something and they find it for you! My mom particpated in a clinical study of a new drug last year for Novartis. They've found that one of the doses used in the study had some success, so my mom is going to be able to receive the drug because of her participation in the study. If either of your mother is offered the opportunity to participate in a study, I'd encourage her to take part. I strongly recomended that my mom take part. My mom also takes riluzol and supplements.