After I made it through the lumbar punctures, MRI’s, steroids, and all of the other normal things that people like to do… I was demanding to stand up. I know this is not a surprise to anyone who has had an experience like this, but I was angry. Angry and frustrated and very very scared.

I forced myself to focus on the next thing: I could wiggle a toe, can I move my foot? My foot can wiggle, how about lifting my leg? I sat in my hospital bed and did whatever I could. Once I got to the point where I could (very weakly) wiggle my legs I started trying to stand. Every time my PT or OT came in and asked what I wanted to do, “Let’s try getting up again”

I had a lot of false starts, my PT would throw on the gait belt and basically lift me up. It was good exercise and good practice, but as soon he’d let go I flop right back down. Eventually I was able to hold it for a few seconds, than a few more, than it was a couple minutes. But it all started with the first time I was able to lift myself out of the chair and into my walker.

Needless to say, I immediately started on the next goal, I needed to take some steps.

I was really fortunate to end up with the inpatient physical therapist that I had. He was always down for whatever I wanted to try and would swing through whenever he had a gap in his schedule to hang out and see what we could do next. Normally patients only get an hour or so of dedicated PT time per day, I was lucky that I was definitely getting more than that, even if it was in bite-sized chunks. The consistency and the challenge got me through the early stages of TM.

Once I was able to stand in my walker and hold myself up, we immediately went to the gym. We tried to take steps, but it just wasn’t happening. Dynamic movement resulted in a near-fall every time. I just hadn’t regained the control.

So we worked on those simple dynamic movements. First with stretch bands while standing in my walker and my PT holding on to me and progressed from being able to work in the parallel bars and try the balance board. My PT and I got very well acquainted, I was determined to try anything and he was determined to help. Simple acts like getting on the balance board or even into the bars required him to give me a big ol’ hug and support me in. I’ll be forever grateful to that guy and he was one of the few people from my care team I send occasional updates to.

He didn’t have to do all this for me, he could have been like other caregivers I experienced on my journey and counsel me to ‘learn to accept what I had’. Instead he wanted to see what I could do. A piece of my thinks he was just entertained by this maniac he had as a patient. Jimmy, I’ll never forget you.

All of this culminated in finally taking some clumsy steps with a gang of PT’s holding me up like a stinky marionette:

One thing that complicated every part of my PT was the fact that, like most TM friends, had lost all bowel and bladder function. The care team was very determined to get me to have a BM so in addition to my normal meds I was getting loaded up with laxatives. Needless to say they didn’t work for a while so I was just uncomfortable all day every day. If you’ve ever had a serious case of gut rebellion on a long ride or run, you have an idea what I was feeling while trying to get things sorted. Coupled with the challenges of having a foley catheter in 24hrs/day and I was always having to juggle multiple issues while trying to exercise.

Lastly, something not mentioned enough is how the lack of privacy, lack of sleep, hospital food, and the overall lack of dignity of inpatient life really impact recovery. It was a motivator, for sure, but it was definitely not “healthy” motivation. Having people around that could just act as a support to listen was absolutely critical.

Pretty soon after I started walking with a walker, I was transferred to an acute rehab center, my next stop on my eventual return home.

Thanks for reading!