Lilian Learns to Walk (Again)

As many of you know, I had a severe hemorrhagic stroke in 2013 (on January 13, at what we imagine, triskaidekaphobically, was 13:13 – it was about quarter after 1 PM.)  Since that time there have been a very few really fun things I could do. The best, though, involved going to Seattle to try out for a clinical trial of Cyberdine’s exoskeleton HAL, a robotic device currently used (and FDA approved) by people with spinal cord injuries.  The clinical trial aims to see if HAL can also improve the walking of people who suffer from stroke or have MS, so I qualified on both counts. Wonderfully, I was accepted.

So suddenly, Ron (my indomitable husband and caregiver) and I want to spend four months in Seattle, where the study is being conducted.  The four months begin on March 1, 2019, which is practically right away and my part in the trial should end, for the most part, in June. Having gone the 3,000 miles to Seattle for the try outs, we now need to go there again for the trial itself. (We will also have to return twice after the study for follow-ups. Each trip costs us about $2,000.) We were shocked to find out how expensive monthly rents in Seattle are, but pleased to learn that short term rentals are fairly common.  Once we find a rental, we will have to buy a used car that can handle my wheelchair so we can get to and from the study every day, and then park it once we are there.  Though the hospital the clinic is part of has a garage, they certainly don't cut you any breaks, even for being a regular user.

I could go on, but I won’t. What I will say is how very hopeful and excited I am about the HAL study.  For six years I have fought the debilitating consequences of my stroke and MS, and feel I have made some good progress.  But still, I do not feel I have reached the zenith of my battle, because I still cannot walk even a little bit on my own.  Though HAL might not completely solve this in four months, they have seen remarkable success in Europe and Japan. 

I have been wanting to get into a clinical trial of this particular exoskeleton for years, ever since I first saw it on the internet.  Now that I am finally in, I am asking for your help so I can participate.  I cannot even begin to say how much your help will mean to me, how much less I will have to worry about this selfish desire I have to learn to walk again.

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