Next up in our series of inspirational stories is Arash Bayatmakou. You can only be inspired by his dedication and the huge strides he has taken. Reading his answers gave us a tingly feeling of awesomeness! Go Arash!
Can you tell us when and how you were injured, your level of injury and the initial diagnosis?
I fell off the balcony of a third story apartment onto concrete and shattered my C5 and C6 vertebra. I was initially diagnosed as C7 ASIA B.
Can you briefly outline your experience from the point of injury to the point of returning to a home environment?
I had the operation where they fused my C4 through C7 vertebra and after a few days in the ICU and acute rehab, I spent the next five weeks in an inpatient rehab unit where I did 2 hours of psychical therapy and 1 hour of occupational therapy 5 days a week (I asked for the same on weekends but they didn’t provide it). They then decided that I was “ready” to go “back” home and leave the hospital, even though my family and I thought that I still needed more time to recover and improve. I was very weak and had little function in my arms and almost none below, and I couldn’t do my bladder or bowel activities myself but regardless, they discharged me and sent me home.
The quality of the care I received in the seven weeks I was in the hospital was great but overall I was disappointed with the negativity that was so pervasive among all the medical staff and the lack of encouragement or support that they gave to any ideas of recovery. They didn’t believe that I could improve much, they didn’t encourage me to work hard and try and see what would happen, they were very opposed to any outside therapies or approaches. They pretty much just said “this is the situation, get used to it, adapt, and try to be happy.” They had no idea what fire they ignited within me.
As a result, I believe that the American healthcare system is absolutely unprepared and outdated with how they treat SCI.
What are the hardest parts of having a spinal cord injury that most people do not see?
There are so many. Honestly, pretty much everything has been impacted in my body and made life very difficult. But I will point out two in particular. One is being so short and having to look up at people, especially in parties or crowded places. I’m not particularly tall (just under six feet) but sitting down all the time is demoralizing and frustrating.
Another one that many people (even others with SCI) don’t know about is body temperature regulation. It was much worse at the beginning and while it’s gotten better, I still struggle with getting too cold and not being able to warm up (or the opposite). It has changed my wardrobe and I always have to be mindful of having extra clothes with me.
Many medical professionals say that improvements in sensation or movement will plateau after 12, 18 or 24 months. Can you describe improvements you have had after 24 months, if any?
Pardon my language but that is absolute crap. It frustrates me to no end that these professionals refuse to change their outdated way of thinking and accept that this is completely untrue. Why on earth would the clock strike a certain time and then all of a sudden our bodies would just decide to give up? No way. My theory is if YOU believe that it will stop at that point, then it will probably will.
I have made the most improvements in my recovery AFTER two years. It was after that two year mark when I was able to start bridging, doing squats, standing up with my own power (with the assistance of a walker), major improvements with body temperature regulation, and continued improvements with sexual function. I regained much of my bowel control after 3 years. My sexual function improved dramatically between years 3 and 4. I’ve made the biggest improvements in standing and gait exercises after the 4 year mark and especially in the last 4 months (I’m 4.5 years out of my injury now).
No one should accept this ridiculous paradigm that medical professionals keep sticking to. The challenge is in being comfortable defying what they are telling you and not just accepting it as fact.
What type of exercises, equipment or therapy do you use to optimise your recovery, and, in your opinion, which of these has yielded the best results?
The greatest results have come with a very unique method called Neurokinetic Pilates, which is the brainchild of a woman who lives in Maui and has developed this system which combines Pilates equipment and with a number of other beliefs and approaches to allow people to use neuroplasticity to rewire their damaged neurological condition. To this day, I have committed the most to using this system for my recovery.
Additionally, I use the Galileo vibration platform, which has helped me maintain strength and endurance and I do a lot in the swimming pool. The water is my happy place where I’m able to do a whole host of rehab (many of these I do by myself now) as well as swim laps and actually burn calories and do aerobic activity, which is something I really miss otherwise.
What is your long-term rehabilitation goal and, realistically, how do you think you will achieve it?
My goal was, is and remains the same: to walk. Simple as that. I realize that it will likely involve walkers, crutches, or other assistive devices and I don’t mind that one bit. I just want to not have to rely on the wheelchair for my entire ambulation. I will achieve my goal by continuing to do what I’ve done thus far: to listen to my body, have faith in my abilities, commit myself fully, work harder than I could imagine, and remain diligent and confident with my efforts, even when improvements occur slowly.
What have you achieved so far in your rehabilitation?
Wow. Considering I had very little when I started, and I was told that I would regain very little and that I should just accept that very little function I had, I have made huge improvements.
I regained sensation everywhere. My hands have improved a lot. They’re not nearly what they were (I still can’t play guitar) but I can cook and do everything I need for my own hygiene and daily needs. Bowel, bladder and sexual function have all improved dramatically, some later than others (see my response above). I am able to stand with a walker and remain upright for up to 10-20 minutes. If I take breaks, I can stay standing for close to an hour. I can do a bunch of movements in standing using quads, calves, glutes and hips that I can’t do sitting down. My core went from having zero connection to now having a decent activation. I went from literally collapsing and not being able to do anything the first few times I was in a swimming pool, and now I swim and do water therapy four times a week and recently set and completed a goal to swim over 8 kilometers around a mountain lake at over 2,000 meters elevation.
In an average week, how many hours of therapy do you undertake, and do you believe this is necessary to make gains?
I spend approximately 30-40 hours a week working on my recovery, sometimes more. It may seem crazy but that’s what I’ve done since the beginning of my injury and I feel that this is absolutely necessary to make gains.
Of course every person’s injury is different and some may have it easier or harder to regain function, but for me to continue to work towards my personal goals, this has been the necessary commitment, if not more.
Read more about Arash’s journey over on his blog.