Thanks to the generosity and support of an incredible community of friends and family from near and far, I’ve had the opportunity to engage in a number of different treatment options. If it weren’t for this support, I would not have the privilege of trying these different treatment options and for this reason, I could not be more grateful to my community.
Unlike many other injuries, treatment for Spinal Cord Injury (SCI) is not universal. There is no simple, “take the following steps and you’ll be fine” approach. Since the injury is so individual to each person (no two SCI’s are the same), treatment and recovery partially rely on some measurable aspects of the person – i.e. age, level of injury, and time elapsed between the accident and surgery – but greatly rely on some unmeasurable aspects such as the person’s will, motivation, health, propensity to recover and heal, attitude, work ethic, and social support system. As a result, many prognoses (“you will never walk again”) have often proven to be wrong because of people’s abilities to channel those unmeasurable aspects within themselves and push themselves to recovery.
I’ve laid out these various therapies in reverse chronological order in order to explain what I’m doing at the most present time.
Located in a picturesque and calm corner of Maui, away from the resorts and hotels, this studio just oozes healing energy. Alejandra doesn’t waste any time and pushes all of her clients to the absolute max, but she does it with positivity, encouragement and lots of smiles and laugh. She has created her own method that she calls Neurokinetic Pilates and uses a lot of Pilates machines, principles and exercises to target fascia: the connective tissue that runs through the entire body, covering and linking all the muscles and carrying its own neural connections. Although she works with a variety of clients with different needs, she has a lot of experience with SCI and understand the inside and out of this complicated injury.
I’ve mentioned Aaron Baker quite a bit on this blog, and for good reason. After suffering a C4 Complete SCI and being told that he would have a one in a million chance of ever feeding himself again, Aaron decided to push his limits to the max, work hard and by virtue of teaming with an incredible person who believed in his potential for recovery and came up with a comprehensive rehab plan for him, Aaron got back on his feet, and his bike! Now, Aaron, his mother Laquita and his trainer Taylor started CORE Center with the intention of helping as many other SCI survivors as possible. Located in a nondescript strip mall in the northern suburbs of LA, this center is having a tremendous impact on the lives of so many people who seek hope, support, and effective treatment and exercise to improve their quality of life.
SCI-FIT (Spinal Cord Injury Functional Integrated Therapy)
This place is an athlete’s dream. With music blasting, motivational slogans on the wall, and its attentive staff of trainers, this fully-equipped gym in a quiet strip mall in Bay Area suburbia is just bursting with energy. If it weren’t for the empty wheelchairs sitting around (all exercises are done outside of the wheelchair), it would be hard to tell that this place is designed for people with Spinal Cord Injury.
Like most patients, I do a 2-hour workout during which I’m given almost no breaks or rests. Working one-on-one with a trainer, I’m literally carried from machine to machine and given a strenuous and unique workout that any able-bodied person would find challenging, to say the least. I’m able to use some of the most cutting-edge (and not to mention expensive) equipment and methods that are in use anywhere in the treatment of SCI. While the workouts are heavily focused on physical exertion, and lack some of the mental and visualization emphasis that I get at Dr. Zhu, I finish each session feeling happily exhausted with endorphins and adrenaline pounding through my body. After the two hours with the trainers, I sit on an FES bike (an $18,000 piece of equipment) for another hour and using electrical stimulation on six places on my legs, I push the pedals on the bike and try to connect my mind to the activity in my lower body.
DR. ZHU’S NEURO-ACUPUNCTURE CENTER
Following the advice of a number of people with knowledge of SCI, including a friend who had an injury similar to mine, I signed up with Dr. Zhu for his intensive therapy. Dr. Zhu is a prolific, world-reknown acupuncturist who created one of only four scalp acupuncture mapping systems in the world. While he treats a variety of conditions, he has shown phenomenal, against-all-odds success with treating victims of SCI and Stroke. Patients who had been told by doctors that they would never walk again had worked with Dr. Zhu and proven their doctors wrong. People who were told to abandon their desire to use their legs again have been given hope by this treatment. When I called to inquire, Dr. Zhu warned that if I were to work with him it would be extremely intense and that I would have to make a significant commitment. I knew I had to try…
“You want to walk, then stand up! Stand up!!” said Dr. Zhu wearing his immutable smile and in his thickly accented English. “You exercise here, you go home, more exercise! 25 hours a day exercise!” were the first things he told me when I entered his small yet vibrant clinic in an unassuming office park next to the San Jose airport. My 4-hour routine was simple: 1) receive scalp needles; 2) spend the next 3+ hours doing intensive exercise including standing in a frame; 3) receive body needles and let the acupuncture take me to a transcendent state of relaxation. This has been my regimen four times a week as I embark on this journey to be Dr. Zhu’s next success story.
What I love most about Dr. Zhu’s clinic is the palpable positive energy and their determination to work with those parts of my body that are not working (LEGS!!). As a contrast, my medical insurance’s approach until now has been painfully passive. I understand they don’t want to give anyone false hope but they also don’t encourage me very much to hope to get on my feet. In fact, since leaving the hospital they gave me just one hour of physical therapy per week only for a few weeks. In a sense, it feels as if they’ve given up on me since, realistically, how much could I really improve with only one hour a week? They tell me to learn to be “as independent as possible with what I have” and wait for the recovery to come as it will. To which I say: THE HELL I WILL.
I am NOT a “sit around and wait” person, especially when it comes to my ability to walk, run and do all of the many things I used to enjoy. Therefore, Dr. Zhu has been a breath of fresh air as they have told me that within a year, if not sooner, I should be walking in some capacity. They have empowered me and as a lifelong athlete, I want nothing more than to have a physical goal, a regimen and believe that with my hard work, I will get better and reach my objective.
I know the psychological boost and confidence I’ve gained from Dr. Zhu is invaluable. I am grateful for that already.
A week after getting cut open in two places on my neck and undergoing massive spinal surgery, the spine specialist came to my bedside and told me that it was time to get me moving. There would be no benefits to have me just laying in bed all day and the sooner I started exercising the better. Three days later, I was back in an ambulance on the way to rehab at the Kaiser Vallejo facility which is known for its expertise and treatment of SCI.
My schedule for the next five weeks was simple: two hours of Physical Therapy and one hour of Occupational Therapy six days a week. They dropped off my wheelchair, handed me a laminated card with my schedule, and wrote down the names of my therapists I would meet the next day.
It felt like the first day of school…
The goal of rehab PT was to train my still functioning body parts to get me as mobile as possible. Although I had varying degrees of sensation throughout my body, I was still paralyzed from the chest down and my hands and fingers were incredibly weak (I could barely hold a fork or cup of water). Luckily, I had an amazing team of four PT’s who would work with me everyday to get me better. Armed with my cumbersome 24 hour a day neck brace, I set to work…
My main accomplishments during my five weeks of Inpatient PT were:
- Wheelchair transfers – moving in and out of my wheelchair to another surface (i.e. bed, toilet, car, etc.)
- Upper body strength – my arms and shoulders would be my lifeline so I strengthened them consistently
- Bed mobility – moving around while laying down, sitting up, rolling to the side, moving my legs and body off the bed
- Standing – despite the challenges of getting extremely dizzy from low blood pressure, I stood in a standing frame machine everyday, which helps with bone density, digestion, circulation and just not sitting all the time!
- Stretching – keeping my legs and trunk flexible
Everyone asked me, “what is OT exactly?” For me, OT was all about strengthening my hands and fingers. Breaking those bones so high up on my spine meant that the nerves controlling my hands were badly damaged so I had to work hard just to be able to eat, put on clothes or brush my teeth.
Everyday, I would dunk my hands in ice water to shock and relax the muscles (not to mention torture myself) and then my hands would be hooked up, one at a time, to the “E-Stim” machine that would electrically stimulate my muscles to contract and extend and force my hand muscles into action. Simultaneously, I would do an activity with my free hand like screwing in pegs or picking up and sorting out coins. I know it sounds easy but these hand exercises were some of the most difficult things I would do.