A rare sight: ME STANDING!! It’s been 4 1/2 months since I joined a new physical therapy program. And the same since I started the Omav treatment for Friedreich’s Ataxia. The differences in my physical strength are little but significant to me ❤

The blog’s cover photos were taken at one of my first PT visits after I finished saying, “It feels like I’m in a baby’s high chair.” Well, I’m here to inform you that this is not a baby’s high chair. It’s actually called a Standing Frame AKA stander, and it helps the blood circulation.

Ironically, I begin with sitting in the stander. Once I’m secured in the seat with velcro straps, my PT will slowly bring me to a standing position using a lever on the device. Although already quite a stretch for my legs, I also exercise my arm and core muscles while in the stander. Using an exercise ball, the pulldown machine, or even just squatting.

Throughout my appointments, the many leg exercises that used to be more difficult gradually became easier for me. I would talk about it with my mom after the visit like, “Hey did you notice that? You think it’s because I’m exercising more? Could it be the FA treatment??”

Before I started Omav, and even still, I hear mixed feelings about it from the FA community. Every FAer is different in terms of their symptoms and level of progression. Some say Omav helps their strength, and some say it doesn’t at all. This made me skeptical, questioning seeing any possible improvement.

It’s no secret that FA makes me fall a lot. So it’s a norm when I sit on the hardwood floor, calling my parents or brother to help me up. I think a couple times did it for me where I had fallen and gotten back up on my own. It takes my entire body strength to stand and I’m exhausted once I get back in my chair. But those times are when I felt deep down that it has to be more than just exercising.

And FYI I still fall at times where I can’t get myself back up. So it’s a slight improvement, not a miracle. Falling still affects me emotionally, but it’s about the times I get up that I choose to look at more. And hey, “Fall Seven Times, Stand Up Eight”… my OG readers know!

Which reminds me, I’m currently walking at PT. 

YES. WALKING… WITH ASSISTANCE. BUT STILL. 

As at the beginning of my appointments, I wasn’t able to take even a few steps. I held onto parallel bars and PTs surrounded me in case I fell. I tried this again at a recent appointment, and I was so shocked at myself for having walked a foot or two.

The next step for me is to try using a walker again. Not gonna lie, I’m really nervous about that because it’s something I haven’t done in 6 years. And who knows, maybe I will be able to, maybe I won’t. Either way, I’m just happy and super grateful for the slight improvement of my physical strength.

Thank you FARA, all the doctors, and trial patients for Omav and any other treatments in the future!!!

One day we will #CUREFA