Once my foot drop started to worsen, the SaeboStep was no longer doing it for me. It still functioned to keep my toes lifted. It still kept me from tripping over my own feet. However, the tension required on the device to do those things left me with a sore, numb foot. I knew it was time to investigate other options. I spoke with my neurologist who set up a referral with an orthotist.

Meeting Jaimie, my new orthotist, set me at ease. She was sweet and caring and I fell in love with her immediately. Our first meeting went as all first meetings with new healthcare providers go. I had to sit and tell her why I was there. Our first encounter occurred only a few months after my diagnosis. I was an emotional and psychological wreck. I cried and told her my story. I told her I loved long-distance hiking and spending hours on my bikes. I told her how I was able to do those things less and less. For the first time, my healthcare provider sat across from me and cried with me.

For most of the first year, my multiple sclerosis was nonexistent unless I physically exerted myself. I was walking into appointments all over town complaining about not being able to walk. I was asymptomatic for the first mile, then my mobility would slowly diminish the further I went. After two miles, I would not be able to lift my foot off the ground. This is something I could only tell my doctors and nurses about but never show them. There were times I felt like I was not getting the care I needed and debated if I needed to start faking my symptoms at my appointments to receive treatments.

Jaimie was not like my other healthcare providers. She needed to do an assessment yet I sat across from her perfectly able-bodied. She asked if the heat was a factor for me. I told her it was. Heat and humidity accelerate and worsen my symptoms. It was a miserable, muggy day outside. She asked if I would mind running laps around the parking lot. I was ecstatic. This was the first person on my healthcare team I had met since my diagnosis that was committed to seeing my disabilities. She was so committed she was willing to have me run laps on a ninety-degree day to throw me into a pseudo-flare. I loved her. I knew if anyone was going to be able to help me, it would be her.

She watched as my mobility slowly began deteriorating. She watched as I went from lifting my foot off the ground to dragging my toes underneath through every step. She stopped me. She had seen enough, plus she was concerned I might fall and was worried for my personal safety.

We went back inside the airconditioned office to work on a game plan. She felt, with the right AFO, I could restart doing some of the activities I was giving up on. She had a specific AFO in mind she wanted me to try but did not have one in the office. I would return in a week to pick it up and wear it for two weeks to see what I thought about it.

I hated it. I hated it and every other AFO I trialed. It was like clockwork. I would go to the office, pick up a new device, wear it for two weeks, take it back and tell Jaimie why I did not like it. She was calm and always listened. I was irritated and losing patience.

One AFO inexplicably worsened my symptoms. I attempted a walk around the neighborhood and ended up in tears. My knee was buckling with every step. It took everything in me to lift my foot from the ground. I barely made it around the block. I got home and cursed the object for existing. Nevertheless, I did not have an appointment to return it for two weeks. I gave it one more try and the result was the same. Jaimie was puzzled since the actual design should mean more knee support.

Another AFO made my foot go numb within moments of putting it on. It was not the tolerable numbness that you can put up with for short periods of time. It was the painfully numb feeling of having frostbite on your foot and plunging it into a tub of boiling water. It hurt. Jaimie suggested trying different shoe inserts. That did not help. Then she suggested a larger shoe. Still no relief. I returned that AFO to try again.

The next AFO was simply painful. My foot was hurting in the office just trying it on. Jaimie still suggested I take it home and try it with different inserts and shoe sizes. I did. I even attempted to walk around the block but had to stop and sit on the sidewalk to remove it. The next week, I encountered another equally painful device. I always tried to make it work. I wanted it to work so bad.

By this point, I am frustrated. I am worried I am never going to find a suitable AFO. Jaimie is worried I may be too picky. She explained there would always be some degree of discomfort when wearing an AFO. It was not a perfect device. She was not losing patience with me. She wanted me to find the one that worked and was willing to keep trialing AFOs until we had exhausted all options. Unfortunately, I was not as patient.

I gave up. MS was new to me and I was still reeling through emotions and thoughts I had never had to deal with before. Adding in the frustration and constant letdowns of searching for an AFO was too much.

I eventually rallied and tried again. I emailed Jaimie. I explained that my symptoms had significantly worsened since I had last seen her a few months ago. I was no longer able to run at all and my hikes had been reduced to infrequent meanderings. I had adopted a dog, Wallace. He became the love of my life and I wanted to be able to take him on long walks. That was my motivation now.

Jaimie had the Allard Ypsilon ready for me to take home and try. I am not going to say it was love at first sight, but it worked. I had finally found the right healthcare provider and AFO. I’ll tell you all about the Allard Ypsilon in my next post.