Paul: How did you make the decision to have HSCT?
Dave: Hi, my name’s Dave Bexfield and I run the website ActiveMSers.org, to help people with this disease stay active physically, intellectually and socially. And I started it ten years ago.
Paul: Great. So the reason we’re talking to you today is because you have been on HSCT treatment, so my first question would be, how did you make the decision to have HSCT?
Dave Bexfield: I didn’t really make the decision to have it, I was kind of forced into it. About eight years ago, it was actually in the spring of 2009 when my MS was just burbling along fine, I wasn’t too disabled, a friend sent me an email and she had this clinical trial on HSCT and I said no, you’re crazy, you’re batshit crazy.
And six months later I couldn’t walk across my living room floor, I was using a walker, I was incredibly disabled and I needed an emergency treatment and I needed it right away. So it was, it was really a must-do at that time, and I tried to get into a clinical trial on Lemtrada, and I failed that, and this trial was the one thing that could save my life.
Paul: So would you say then the anxiety associated with what might come with the treatment sort of overcame the potential benefits you saw in the treatment?
Dave: Yeah, I mean the risks were substantial but I felt at the time I didn’t really have a choice. It was intense. I mean I couldn’t use my underarm deodorant, which really bothered me, because I couldn’t do the squeezy thing to spray under my arms and I was too weak.
It was challenging to stand, I couldn’t tie my shoes, I signed my name almost using my fist, it was that bad. When I had to sign consent forms, I just put a pen in there and I just kind of barely was able to initial. My MS had just ramped up in an incredibly fast manner.
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