I applied for phase 3 trial at Emory university and Mayo Jacksonville, but could not get in either of them after phone interviews.  Neither of them were looking for people with slower progression type.   Applying is very easy and efficient.  Initially you apply online, then you will receive a confirmation by email.  Within a few days, a… Read more

I have been traveling with my manual chair by air, train, ships and cars without too many problems.  I even traveled alone from Texas to Canada a day after I received my chair!
I went to one of John Morris’ travel seminars at an abilities expo right before I got my chair.  He uses a very heavy electric chair and he travels all over the world… Read more

I usually get a wheelchair accessible hotel room, but started bringing my own portable shower stool which collapses to a six-inch-diameter x two-inch-high disc in case they are not equipped with a shower bench. The grab bar sounds like a great addition. I will check in to it.

Hello Mikael,
I live in Austin Texas.
When my genetic test for SOD1 came out positive, I felt like I hit a jackpot as I had been craving for an answer; however, I was told that some patterns of mutations in this gene can be benign by a specialist. I went back for more testing.
I came across several reports which helped me understanding… Read more

Hello Mikael,
Mine started with atrophy in both legs at least ten years ago. At that time I did not have other symptoms and I did not relate with NMD. Then I started having balance issues and hand tremor. When I realised I could not run 6 years ago, I kept ignoring the condition and blamed on ageing (although I was only in mid… Read more

Hello Mikael,
I understand your frustration as I went though a similar experience. My case looked easier as my mother also had the condition, but diagnosed with spinocerebellar ataxia due to lack of genetic testing at the time. My diagnosis went from hypocondriac to ALS to ataxia and back to ALS over four years. I even got a doctor review my… Read more