Lowell Stewart

I see from the discussion that the stage of speech impairment is critical to this decision. In August 2019 I was still able tor read phrases more or less naturally and I’m glad I did. it’s nice to have my own voice on my SGD. Although I’m still able to talk with varying degrees of intelligibility.

I too face two competing trials. One in Gainesville will test Metformin which is has been shown to slow progression in mice with the C9orf72 mutation. The other is the Healy platform trial which will take place in the New Orleans area. The Healy trial hasn’t started screening while the Gainesville trial has. I consulted with my neurologist and…[Read more]

I was diagnosed in June 2019 and attended my first ALS clinic in July 2019. I then went to the same clinic in October and January and switched clinics in March 2020. I was surprised when the new clinic offered me Nuedexta because it had not been offered to me before. I’m still able to talk and swallow solids and liquids which I attribute to the…[Read more]

My cousin died of ALS in 2013. I first had symptoms in early 2018 and was diagnosed with ALS on June 6, 2019. Through genetic testing I found out I have the C9orf72 mutation. When I spoke to the genetic counselor she thought i was unlikely to fall into the category of familial ALS. After the test results she consider me as fitting into the…[Read more]