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May I ask why you lost confidence in GWU clinic? I didn't know Georgetown U had an ALS clinic.

Thanks, unfortunately he is not a candidate for Dr Floeter's study due to another condition he has.

Thanks BillBell. I have seen your summary or symptom progression for bulbar onset PLS and it seems my husband is in a similar progression. I'm not sure my goals either. Just looking for more support I guess, as things are starting to get a lot harder for him. Also maybe to find people who...

Hi, my husband with PLS-bulbar onset for about 4 years now has symptoms that are worsening. I'm trying to convince him to attend an ALS clinic although he's not sure it would be useful. He has a neurologist (who diagnosed him early on) whom he really likes, but I feel more consultation with...

I spent some time learning about the TTY service this week. Really it is called TRS (Telephone Relay Service) Basic infomation here: Telecommunications Relay Service (TRS) | FCC.gov I think it will help us here at home and possibly at my husband's work. TTY is something that deaf people...

Yeah, since I've learned more, I realize how rare this is. I'm a bit nervous about posting too much information about my husband, seeing as how identifiable he would be, just out of respect for his privacy. But we were supposed to go see his neurologist last week, and I wanted to push for...

Bill -- do you use a TTY service on the phone? The kids they set up for deaf/speech impaired people? I've been looking into that.

Hi Bill and thank you for responding! I had read some of your story elsewhere and thought your progression sounded similar to my husband's. Wow... only 14 people a YEAR with Bulbar PLS? I said earlier, we *think* my husband has PLS. His symptoms started probably 4 years ago -- 2010? Just...

Right now he can keyboard just fine but slow. I was hoping for something more low tech. Cued speech or ASL both seem more natural than talking to your kids through synthesized speech or texting them, is all. I was hoping cued speech would be a good solution, but I tried doing it today and...

I think we are too late for voice banking. I don't think there'd be a point. You really can't understand what my husband is saying half the time.