My Alinker Arrived!

I got an Alinker and joined a study on it and it’s amazing.

It’s a walking bike, a different type of mobility aid. It’s like a walker but you’re supported on a seat the whole time. You’re essentially walking like you used to.

If you go to my A Splendid Mess page on Facebook, you can see a 30ish second video of my first walk with it.

I’ve been really sedentary the last 4.5 years for many reasons. Fear of going out as someone immunosuppressed during a pandemic, then fear of going out as a woman with disability. It makes me a top pick target for an attacker, never mind that I went from being a rescuer to now being most likely to die in any kind of mass casualty incident. I can’t run from an attacker let alone a burning building, a ticking box, a gas leak, or an active shooter. I can’t get out of the way of a speeding vehicle. If I end up in water above my head, I’ll drown. Once upon a time, I was really proud that I was hard to kill.

Now I’m most likely to be a statistic.

It hasn’t encouraged me to go out while I worked through that. Also, I sit a lot because it’s safe (no fall risk) and more importantly, when I’m sitting I don’t feel disabled and I have no visible disability. It’s when I walk I become a fall risk and it’s obvious I have a disability.

But being 44 and sedentary for nearly five years isn’t doing me any favours. I mean, it’s easy for me to die now but I don’t need to make it easier by swan diving to the worst, most unhealthy living ever. My weight has come down a few pounds, but mostly because I’m losing muscle mass. Parts of me that I don’t want skinnier are skinnier, and my torso is thicker. I essentially look like an apple if you stabbed 4 toothpicks into it to represent my limbs and I don’t love it.

I’ve been fairly active in resistance training but cardio…not so much.

The Alinker (it’s tradition to name your Alinker, I dubbed mine the USS Cunterprise) is already making me more active. I’m getting about 3000 steps on a low energy day to 4000 on a normal day. It’s below the ‘recommended’ 10,000 steps but I was averaging about 1200 before I got this mobility aid. One day last week I hit over 6000 because I went for a walk then mowed the yard for the first time in nearly 5 years and did some weeding.

Don’t get too excited.

It was over 20 degrees that day and I had to mow the lawn in 3 phases with long breaks sitting inside in the air conditioning but I’m happy enough I was able to do it at all, even if it took me all day.

I used the USS Cunterprise for the first time on May 9. On May 17, I was on an indoor track wearing my AFO. I stepped off the Alinker to give my sit bones a break (still getting used to the seat) and I walked normally for the first time in nearly 5 years. My pre-MS speed and stride length, unassisted. I could see me walking in the tinted glass at the end of the track, and I was walking normally.

It was splendid.

I could walk normally for about a quarter of the track and then I sat down to rest. When I got up again, the walking miracle was over.

But if it happened that once, doesn’t that mean the neural pathways to walk normally are still there? I just can’t access them regularly. I don’t know why I could access it that day, or if I’ll even be able to access them ever again. It must come down to neuroplasticity. Does walking with seat support strengthen those pathways? Will continued use of the Alinker keep making my walking better?

The Alinker has shown me how limiting walking with a cane is. It’s hard, being cane dependent. It changes your posture, even with a properly measured cane I slouch. It causes tension in your upper back, shoulders, and neck. It’s easy to grip the handle so hard it makes the bones of your hand ache after awhile. Steps are small, almost shuffling. It’s exhausting.

Disempowering.

Yesterday, I was getting back in the truck. I always put my cane in first before I climb in, but I remembered that I wanted to take a picture of something before we left so I left my cane in the truck and walked several feet behind the truck to take the picture. The walking felt pretty good, so I asked my favourite human if he could video me walking. I wished I’d had the presence of mind to ask for video at the indoor track but I was too stunned and caught in the moment of walking like I used to.

I walked back and forth over 3o feet, four times. On the video, I walked quite stiffly for a few moments but overall it was pretty good. I had an odd posture with my shoulders up and my head a little too far forward. I’ll ask my physiotherapist to watch it and help me improve my gait.

If the indoor track walking was 10/10, just like before my brain broke, then yesterday was a 7.5.

The Alinker is infinitely customizable. Height of the seat and handlebars, plus the angles of them are all adjustable. I’ve been making small changes every few days and giving myself time to see how they feel. I think I have the seat angle perfect for my physiology, today I put the seat up a little higher so we’ll try that out for a few days. The handlebars are wrong but I don’t know how they’re wrong yet. I’ll figure it out if I’ve finally got the seat just right.

Maybe I should have named it Goldilocks.

The study is six months long so I’m interested to see what might happen as the months go on. Even if nothing miraculous happens, if I never access that neural pathway again, at least I’m active again on my own two feet. Yeah, I biked for cardio occasionally but honestly? Not enjoyable in the slightest. I was always a walker and being on my feet again to walk without a cane is amazing. I just walk, something I did a lot of for nearly 39 years.

My gait overall seems to be slightly improved almost a month into using it practically daily, so I’m really curious to see what might happen come the fall. The vestibular stimulation study also said I might experience gait improvements as well so who knows if it’s both, one, or neither making the difference.

Speaking of that study, I had my second long assessment today and it went very well. I think it took half the time my first one did, but the gym area we were using was like a sauna then. It was normal temp today so I didn’t need as many rests and it didn’t take me as long to get through the tests. I was impressed at the difference and so was the main researcher, who’d done my first long assessment. I’ll get the results after the study is over, probably some time in July when they’ve had a chance to compile all the data.

Today’s mobility was even more impressive given I’m 2 days post-infusion. That’s usually the day I’m on the couch all day, recovering.

So far, so good. I’m reluctant to be excited because that’s bitten me before and hope is painful. I feel comfortable saying that I’m really interested to see what happens over the next six months, though.