Hi Barbis, my email address is [email protected] It would be great to hear from you. Send my an email any time, it would be good to be in touch with someone in the same position right now. Hope to hear from you soon.
Hi I have just joined the forum and dont know much about how it works either but wish Id found it 6 years ago. My husband has bulbar onset, slurred speech when tired began in 2007 along with visits to neurologist. Feel sure he new what the diagnosis would eventually be and like you I had this gut feeling it would be this cruel disease. In 2011 he was diagnosed, but for a couple of years before that refused to go to neurologist. Speech has been non existent for 2 years, has a peg for feeding and a CPAP machine. Uses a wheelchair. Has been along exhausting jouney so far and my heart goes out to you and your family. mariefaye21
mich5.... we are going to U of M this Thursday for reevaluation so hoping to get more info there. We already have gathered everything my husband needs to apply for VA disability which is something we hadn't known about before. Even though my huisband was just diagnosed in Mar. this year I had been reading about his symptoms and had a gut feeling a year ago that he had ALS. I will keep using these forums for more insight and have gleaned quite a bit of info already. It's nice to have people share so one knows what it ahead. It is scary but we are taking it one day at a time. thanks.. barbis1020
Hello, barbis! So sorry you won't be able to visit the ALS organizations I mentioned. But I understand completely. You could call and speak with them. They both have 'outlying' offices which may be closer to you. Speaking with them may help you. ALS of MI is 800-882-5764. ALSA is 248-680-6540 but may be easier to contact by email from their website. Good luck!