Treatment

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.

COTA PILATES

http://www.cotapilates

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.

CORE CENTER

http://www.corecenters.info

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)

http://www.sci-fit.org/

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

http://www.scalpacupuncture.org/

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.

INPATIENT REHABILITATION

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…

Physical Therapy

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

Occupational Therapy

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.

32 thoughts on “Treatment

  1. Hi Arash,
    Erika has kept me updated on your progress and sent me the link to your blog. Your amazing attitude and determination is a demonstration on how all human beings should approach life–whether disabled or not. I am beginning to learn about the power of prayer (following a good dose of Buddhist meditation) and I will pray for your recovery. I wish I could attend your event on December 11th but I won’t be home until the 19th. Would love to come see you if you aren’t too overwhelmed with visitors.

    Keep moving forward–Courtney

  2. When the soccer crew first heard about your injury, we all agreed that if anyone was goin to overcome such devastation, it was you! You are truly an inspiration to all who know you! You will make Dr. Zhu proud! I am honored to know you and look forward to reading more about your recovery! Strength of mind, soul and eventually body my dear friend will get you back on the soccer field again!
    See you in Dec!
    Jean

  3. Arash- I have been reading your blog all morning and really do believe that with you sparkling spirit and joie de vivre, you WILL be walking and reaching your goals in no time. I remember when you interviewed me for Backroads back in the day, I was blown away by how positive and genuine you were. I left Cedar street thinking that if even half the people there were as awesome as you were, that this had to be the best place in the world to work.
    I am so sorry to hear about your accident, but if anyone can conquer this, it’s you Arash! You are and will be an invaluable inspiration to so many! Best wishes and blessings to you on your continued road to recovery.

    • I remember that interview quite well Krista and I appreciate your support and belief in me. I hope that I can continue channeling positive energy to this recovery, even through the challenges and hard times. Wishing you well. -AB

  4. Unfortunately, most insurance companies don’t see it as their job to “encourage.” Their goal seems to be to pay for as little as possible, regardless of how much you’ve paid into them. I wonder how many people receive inadequate treatment and never reach their potential because they are hindered by treatment costs.

  5. I have a friend who had a motorbike accident and was in a coma for a long time. He came out of his coma and could not walk. He was in a wheelchair for a long time and eventually he was able to walk with a frame. I don’t know any of the medical terminology regarding his injuries nor the specific nature, but I don’t see it as a miracle that he walked again – I see it that he put in in the hard yards, had the patience and fortitude to keep bloody trying. And he did it. Just as you will. I am excited to start to follow your blog because I am looking forward to that day where you will tell us you walked again. :)

    • Thank you for sharing your friend’s story with me. I’m so happy to hear that your friend was able to recover little by little. It’s reassuring for me to hear that and it inspires me to know that I can eventually get to my ultimate goal. Best wishes to you and many congrats to your friend -AB

  6. Dear Arash,
    It is so inspiring to learn of the progress you have made since your injury. I am retired from the medical field, having worked in neurophysiologic testing since 1966 where I saw the devastating effects of your type of injury on my patients. At the time I started working there was not much that could be done to restore good function to patients with SCI. It has been so rewarding to me personally to help with some of the progress that has been made in neuroscience for patients with SCI. But, the most of the credit for the progress that has been made should be given to the brave and hard working patients who try all the new ideas and treatments and don’t give in to despair. You are standing on the shoulders of many, many others who were as optimistic and determined as you are to regain strength and function. I will be following your blog with great interest as so many others are. You are a great source of inspiration to others with SCI. Thanks for sharing your energy and enthusiasm.

    • Great to hear from you. I can’t even imagine all the experience you must have with this debilitating injury from all of your years of working with it. I know there have been many others before me without some of the same opportunities, and the same goes for the future. Thank you for reading and hope to stay in touch -AB

  7. Arash–I learned about your story last night on Upworthy…thank you for sharing your story with the world. I’m a big believer we all need more stories of hope. I am currently fundraising on your behalf, and was introduced this morning to a woman who fully recovered from a spinal injury. She didn’t have her first muscle twitch until 16 months into her recovery. She now helps match people with spinal injuries to alternative treatment methodologies. I would love to introduce you two–maybe she could help you on your journey. If you are interested in more information, please contact me (you should be able to view my email address privately in this.) You can also get more information at mymedmatch.com (her website that has just launched…still more information to come!) I hope to hear from you, and wish you many blessings and miracles on your journey!

  8. Arash, i discovered your blog because of the Ekso facebook posting featuring YOU…my son was injured 20 months ago (motorcycle vs suv a block from the house) and you guys have so much in common…he was in the ekso trials down here in LA at a rehab facility in Pasadena…recognize all the guys we met in your photos/footage…Xander is not one to reach out (he is now 22) but I AM…would love to discuss your thoughts on some of your therapies..;.as you noted each persons injury is unique (Xan is T6 complete) but i’d love to get your thoughts on some of the options that lie before him…if you wouldn’t mind…my email is cherylibianchi@roadrunner.com phone 818.495.2449 (live in LA). The two of you share a very similar mind set (as you have probably discovered, not everyone in SCI world is so determined)…have done lots of research and have tried lots of stuff so it would be nice to share what i’ve learned with you.

  9. Yes, absolutely amazing; amaing in your will not to surrender to ‘verdicts’ from “”experts””; you attracted the right souls wanting to bring not only help, not only an opportunity to showcase their superbly engineered gear but with also a curiosity of exploration. ALL, any Doctor, mainly medical, should ask themselves: ‘HOW can I reestablish equilibrium, how do I lead this person back to the path of health.

    Your determination is exemplary and so is your demonstrated discipline.
    I wish you well. For now you confirm that being stubborn and having faith that the body can self-heal given the right people, support, actions. Thank you so much. This inner power is fueled by beliefs. Whatever the beliefs, it seems to be working.

    Keep rising to your own Altitude!

    Andre

    ** I am very glad to be on UPWORTHY list.

    • I am very glad that you’re reading! Thanks for believing in me and my stubbornness. It’s one of the only things I can hold on to in my quest to prove the doctors wrong and fight my fight. -AB

  10. I would be interested to know if anyone is trying neurofeedback or BAUD technology to help counteract the effects of depression and enhance the ability to focus on the difficult physical tasks that patients with SCI have to do. I am currently retired from a long career in neurophysiology technology but have been researching taking training in neurofeedback. From what I have learned about it, the therapy may be beneficial for patients with SCI.

  11. Neurofeedback involves patients looking at their own brain electrical activity through a computer modulated program and actually being able to change their own brain activity patterns with practice. It is painless but usually requires multiple sessions for the patient to learn how to do it. It is used primarily by psychologists to help their patients who suffer from depression, ADHD, compulsive disorders, and for self behavior modification for patients who need to lose weight, stop smoking, and other problems. It is aimed at helping patients develop the ability to focus their minds to a task at hand. It is even used by some athletes to help them improve their concentration skills to improve their games. It has not been reimbursed well by insurance in the past but that is changing, so I expect that it will be used more and more as insurance reimbursement improves. I do not know that much about BAUD yet, having just started researching this. What I have learned is what is on the internet. I do have some personal experience with biofeedback and can see that neurofeedback is likely to be a useful extension of that therapy. If you are interested in learning more about it, you might first see what is on the internet and then find a psychologist in your area who provides this treatment or check with a psychology department at a university for someone who may be doing research in this area.

  12. Hello Arash. You do not know me, but your story has moved me deeply. My husband was involved in a motorcycle accident in Dec. 2011, and has been wheelchair-bound ever since. He used to be almost like an athlete, he’d go jogging, biking, played basketball, volleyball or soccer any chance he got. He just also happened to be 1.85m tall (about 6 foot tall), so this “thing” of now being shorter than most people kind of bugs him, too. Recently we’ve found a video of you going for a test at Ekso Bionics, trying out their bionic robot, and it gave us new hope. We’re now thinking of moving and trying to find a way for him to be able to make use of the array of treatments you Americans have available. Oh yeah, forgot to mention… We’re from Brazil.
    Anyway, I just wanted to congratulate you for your positive attitude, and thank you for posting such detailed and personalized notes about your treatment. For “clueless” people like us, it’s been a tremendous helping hand. You’ve broaden our horizons, and for that, I thank you. Maybe one day our paths will cross and we’ll be able to talk face to face, and we could all become friends. But until then just know that you’re not alone, there are many fighting just like you, and others that, like me, can’t do much but help, support and pray for ALL of you, daily. Once again, thank you, and carry on. :)

    • Great to hear from you and thanks for sharing your husband’s story with me. I hope you’re able to find some more information on other opportunities for him. There are a lot of great resources out there and if you want help looking for other options for your husband, I’m happy to share what I have. Good luck to you and don’t hesitate to stay in touch -AB

  13. Hi Arash! Surfing on the Net yesterday, I came across a company that has develop what it calls ” the robotic mobilisation platform”; the device allow you to stand by yourself and sit down with no assistance at all. The magic, I think, is that it is elctric, small and on weels therefore, allowing you to move around in restricted space and do thinks at eye level with others, great for the soul. The company seems serious and aim at reinventing the wheelchair. You can find their site at: tekrmd.com.
    Maybe you already know of the company but just in case ….
    Have a good day and keep up the good work.
    Thérèse

    • Thanks for sharing Therese. I actually came across a similar product and organization recently and it seems like there is a serious push for this kind of solution, which is great. I hope these companies continue to find success and can come up with effective solutions. Stay in touch -AB

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