Grateful for more than the gobble gobble

I started writing this blog just over three years ago today, on the eve of this all-encompassing American holiday, and now I look back to the third blog post I wrote, just before Thanksgiving where I listed the reasons why I was thankful despite the horrific nature of my situation and being only four months out from my spinal cord injury. Fortunately, every reason for gratitude I listed on that day still applies to my life today, with some notable additions of course, and it makes for a good opportunity for me to recognize one particular thing for which I’m recently very grateful.

I’ve shared my experiences at length about the unique therapy I’ve done in Maui and its incredible contribution to my recovery but one of the biggest challenges I always had after coming back home from Maui was the struggle to find ways to continue doing that Pilates-based therapy. I always felt like I would make these huge gains in Maui, only to return and have that momentum of improvement stall. Luckily, that isn’t an issue anymore.

Absolute Center is a busy, successful and well-regarded Pilates studio a short drive from where I live and in recent months, it has become my primary place for rehab and wellness. When I met the owners of the studio, I don’t think any of us expected our encounter to lead to the establishment of a legitimate program geared towards people with spinal cord injuries completely different from their usual offerings, but that’s what has happened. There are scores of Pilates studios all around the country and the world but it took the curiosity, progressiveness, and forward thinking of the studio owners to recognize that there was an opportunity to provide this population with a viable option for this kind of Pilates based therapy.

My last few months of training and being able to continue working with the same principles and techniques that I learned in Maui have been invaluable for my recovery. I’ve seen greater gains in a short amount of time by virtue of being able to consistently train in a supportive environment and amongst talented and knowledgable people who are committed to help me reach my short and long-term goals. Additionally, a number of other people with spinal cord injuries have been training there too and as a result, alternative and creative approaches to spinal cord injury recovery are being explored and pursued.

I am grateful for meeting these people and having the opportunity to maximize my recovery efforts and I’m excited see how a more persistent commitment to this therapy will show itself with the improvements in my body by the time I go back to Maui again.

While I must admit that I don’t love turkey or a lot of typical Thanksgiving fare (which is why we make a somewhat less traditional feast!), what I do love about this holiday is the notion of taking a moment to be grateful. Happy Thanksgiving to everyone.

 

On cures

There have been some innovative and very high profile developments in the last few months when it comes to treatments for Spinal Cord Injury (SCI). Scientists, researchers, and advocates have demonstrated that creative approaches can lead to exciting and potentially groundbreaking results in treating this oh so complex injury, which no one seems to really, truly understand.

I’m often asked how excited I am about these breakthroughs and what they could mean to my own recovery and although my usual, quick answer is, “Yeah, it’s pretty cool. Lots of interesting things happening these days,” I figured I’d use this blog post to expand and clarify my true feelings.

If you have no idea what I’m talking about, I’ll quickly outline and link to the three major developments that have come out just this year.

1) Epidural Stimulation – By implanting a small device over the protective coating of the spinal cord, and sending varying electrical currents to activate nerve circuits, four initial participants (all having suffered severe SCI’s) were able to achieve some motor control in their lower body as well as regain some other essential bodily functions.

2) Olfactory Stem Cell Implants – Scientists in Poland and the UK removed a man’s olfactory ensheathing cells (specialist cells from his nose that form part of the sense of smell), grew them and then injected them into his spinal cord to repair the damaged nerve fibers. Six months after surgery and with hundreds of hours of exercise and therapy, he slowly regained the ability to walk with braces.

3) Proteoglycan Drug – A neuroscience professor in Ohio developed a drug that releases nerve fibers that have become trapped in scar tissue after a spinal cord injury, thus bridging the damaged cord and restoring some function. The study was conducted on rats but they’re quickly planning on trying it on humans.

Now that we’re all caught up and on the same page, I’ll explain my thoughts on these developments starting with the big positives and reasons I’m excited, but then also sharing why I’m cautious and skeptical.

First of all, I’m thrilled that more people are paying enough attention to this injury to come up with long-term projects to address it. A scientist behind the second story I mentioned above was quoted as saying that this development was “more impressive than man walking on the moon”. I couldn’t agree more.

Secondly, the fact that these three developments all used different methods gets me excited. If they were all stories about stem cells or a medicine of some kind, I would be more skeptical of having all the eggs in one basket. Then, if something negative or ineffective came out about that one approach, the whole thing could come crumbling down. Three different methods means that the damage to the spinal cord is being treated with three individual approaches that each have their advantages and shortcomings, but they’re all leading to results, which is incredible.

On a similar note, the diversity of approaches means that there could be a potential to combine solutions in the future. Maybe with some people the stem cell treatment is less effective but the Proteoglycan drug picks up the slack. Maybe none of the treatments on their own lead to dramatic improvements, but in combination with each other (and whatever new technologies arise) a person can bounce back nearly 100%! How amazing would that be??!

My final reason for excitement is because this topic is, for lack of a better term, sexy. Curing paralysis is a BIG DEAL. Getting people out of wheelchairs and back on their feet is truly earth-shattering. As someone who would give ANYTHING to regain function the way I had it before my injury, I can honestly say that no other medical breakthrough gets me as fired up as this. I’m obviously biased, but I embrace it.

Now for my reasons for caution:

The time frame for any of these treatments to reach the masses is loooong. The first study was conducted on four people. The second, on one. The third was on rats. I know technology moves at a frighteningly and often surprisingly fast pace these days, but even by the most optimistic estimates, these treatments are a few years away from being available to the millions of people worldwide who would benefit from them.

The financial costs, both for developing these treatments and for receiving them in the future, are huge. As I mentioned above, curing paralysis is truly groundbreaking news, but unfortunately, there hasn’t been nearly enough investment in finding ways to do this. The reality is that SCI doesn’t affect as many people as cancer or diabetes or AIDS and while I wish I could say that it’s not a numbers game, everything I’ve read proves that it absolutely is a numbers game. When the Christopher Reeve Center (with millions of dollars of its own, which has been the dominant driving force in treating SCI) has to launch a big PR campaign (see the epidural stimulation link above) to raise funds in order to continue research, it shows just how underfunded and under-recognized treating SCI is.

On top of that, we have to assume that at least initially, any potential cure will likely have a high financial cost to the user, which will automatically limit the ubiquity of the treatment. At least in the US, where medical insurance is always trying to find ways NOT to pay for anything, I’m not hopeful that insurance companies would be on the cutting edge of promoting and paying for a splashy yet expensive cure, even for an issue as sexy and exciting as this one.

I’m not trying to be a Debbie downer about all of this, I truly am thrilled to see what the future holds, but I’m a pragmatist and realist at heart. The future is very exciting, but for someone like me, who suffers through day after day of frustration at not having a fully functional body, I don’t have tons of patience to just look forward to the future. I want to do something now. I don’t plan on sitting around and waiting for someone else to solve my problem and I’m way too Type A and motivated to stand by and accept complacency or the status quo. For that reason, none of these developments changes a thing in my day to day routine. I’m still going to work as hard as I have been to recover through my own hard work and will.

The one thing that all of these scientific developments prove to me more than anything else, is that the existing paradigm and approach for treating SCI is outdated and just plain wrong. These ideas show that the antiquated yet predominant way of thinking, of taking away hope from someone, of telling them they’ll “never do this or that again” has to change. It was only a few years ago when no one in the medical community believed in neuroplasticity, or the ability for the brain or nervous system to repair or change itself. Now people are changing their minds faster than ever and accepting that as arrogant and all-knowing as we human beings think we are, we don’t always know the answers. That way we remain open to solutions as they come, and I’m fully confident that in treating SCI, the solutions will indeed come…

SCI Survey: Results and Summary

A couple of months ago, I wrote about my interest in finding out of the situation of other people who have suffered a Spinal Cord Injury and learning about their respective challenges as compared to mine by creating the SCI Survivors Survey. Thanks to a tremendous commitment of time and dedication by two friends (Laura and David, I’m so grateful for your help!), we were able to obtain incredible results from people’s experiences.

We’ve written a summary of the results and I wanted to share it here to continue the conversation and to highlight this too often underrepresented injury to those who may not know much about SCI. Thank you to everyone who openly and honestly responded to the survey and provided such an incredible wealth of information. And many thanks to everyone who helped in the process. I hope this can lead to some significant changes in how we deal with SCI.

SCI Survey Summary 

 As her fellow athletes recover from realizing their Olympic dreams, skier Maria Komissarova has just begun the hardest challenge of her life. The 23-year-old crashed during a practice run in Sochi[1], suffering a fractured spine that has paralyzed her from the waist down.

Komissarova now faces hardships unlike any she has ever faced. When the shock subsides, she will have to learn how to live day-to-day in her new condition while navigating a complex set of medical options. Her coach will be replaced by a spine specialist, her trainer by a physical therapist, her fame by a long and painful recovery that will be every bit as grueling as her Olympic training. State sports bodies and the Russian federation paid for her initial treatment but the federation says that the skier’s recovery may take a long time and extra money will be needed.

If an Olympic athlete needs to raise extra money for her recovery, what happens to people with a lesser public profile, who suffer similar devastating and life-altering Spinal Cord Injuries (SCIs)?

While Komissarova’s story has received press attention around the world, countless other SCI survivors (500,000 global cases a year[2]) struggle in anonymity to find answers to the physical, emotional, and financial struggles that now dominate their lives. Even though 12,000 people suffer SCIs each year in the United States alone[3], all too often, little is known about their plight.

Arash Bayatmakou wants answers. In 2012, the then 30-year-old San Francisco resident endured a horrific fall from a third floor balcony that shattered two cervical vertebrae and paralyzed him from the chest down. Despite being told by medical experts that significant recovery was unlikely and that he should accept his condition and adapt to life in a wheelchair, Arash remained determined to walk again and decided to make recovery, in his words, his “full-time job.”

The results have come slowly but steadily—improved hand and arm strength and dexterity, core strength, even a wiggling toe. Recently, Arash stood on his own for the first time since the accident. After proving the “impossible” to be possible several times on his road to recovery, Arash wants good information both for him and other SCI survivors.

How similar is his predicament to that of other SCI survivors? How many SCI survivors have been given little or no hope of recovery? How many are forced to pay out of pocket for necessities as fundamental as a wheelchair due to poor insurance? What are their experiences and how do they deal with this life-altering condition?

To find out, Arash, David Nihill and Laura Bekes put together the SCI Survivors Survey and the results show that his case is by no means the exception. While the severity of each injury is unique based on the extent of damage to the spinal cord (which controls all neural communication from the brain to the rest of the body), the potential effects are devastating as paralysis of the upper and/or lower body is almost always a result of the injury. In addition, some of the lesser-known, yet hugely significant, effects of SCI include impaired circulation and blood flow, loss of bladder and bowel function, changes in blood pressure, body temperature regulation, depression and a variety of other physical and psychological challenges.

With an injury as debilitating as this, the impacts are severe and detrimental to many aspects of the survivors’ lives, and many struggle to identify and access the resources they need to give themselves a chance at recovery.

There were 61 responses to the survey nationwide, with respondents of all ages (18-69 years old) and with injuries suffered as long ago as the 1970’s to as recently as 2013. Respondents were asked questions about their injuries, interactions with doctors and medical professionals, prognoses, attitudes and approaches to their recovery, experiences in and out of the hospital and rehabilitation centers, continuing therapy, financial impacts of the injury, and their current state.

To summarize the survey findings as briefly as possible: 1) It is very difficult to predict outcomes for people who have suffered an SCI; 2) Few people with SCIs feel they are receiving sufficient coverage from their health insurance for modern day therapy that could potentially improve their condition and help realize their recovery potential and; 3) Despite facing such difficult odds, the will to recover has led many people to challenge the expectations of their doctors and prove their prognoses wrong.

To begin with, almost everyone (83%) was given a prognosis of some sort, from an inconsistent variety of people including neurosurgeons, rehab doctors, nurses and physical therapists. The prognoses were given very shortly after their injury and/or surgery and the overwhelming majority (83%) were told that the possibility of walking was unlikely or impossible. This left few people hopeful for their chances of regaining function or improving their condition.

While the challenges that come with this injury are many (physical, emotional, financial, professional, etc.), one of the clearer findings from the survey was that many people reported doing better than what the original prognosis suggested would be achievable or possible. The degree of improvement ranged dramatically from some respondents claiming smaller yet significant physical changes (i.e. better upper body function, improved circulation, more stamina) to others who had major gains in lifestyle (i.e. increased independence, driving a car, maintaining a professional career, improved family and personal lives) to even those who had regained the ability to walk.

Struggles with insurance and the ensuing financial impacts were a common finding for many respondents. Specifically, despite facing an injury that leaves people unable to walk and paralyzed from chest or waist down, 18% did not have any of the cost for their wheelchair covered by their insurance. Upon leaving the hospital, 87% needed to make costly alterations to their home, 83% did not have help from insurance to cover additional at home costs/supplies (median of $3,600/year) incurred by the injury, and 44% had to turn to fundraising to help with expenses.

“They haven’t done anything more than the BARE minimum, they didn’t even pay for the wheelchair that they wanted me to spend the rest of my life in. They’re horrible, irresponsible, inconsiderate and inefficient. They should know that caring for me now and getting me better now would save them money in the long run but their approach to SCI is so antiquated and backwards.”

“I don’t think insurance companies understand the benefits… The true benefits… Of ongoing physical therapies for spinal cord injury survivors.”

“At the end of my stay (in hospital) I began to recover function of my legs. The rehab hospital requested more time from my insurance but was denied.”

The attitudes and approaches of doctors and medical professionals were often reported to be defeating and demoralizing. In fact, 67% of respondents said that their initial interactions with doctors did not leave them feeling hopeful for their chances of any kind of recovery. 63% of respondents were told to focus more on adapting to their injury than recovering from it.

“I told them I wanted to walk again and recover and they mostly laughed at me, dodged my question, didn’t give me answers and tried to just get me to focus on adaptation.”

“My prognosis doesn’t mean anything to me now as I know how flawed it was when they told me.”

 “I have recovered more than I ever thought. I can walk independently with [braces] and a walker. I was told I did not have enough function to ever do so.”

“Not going to ever walk again was my diagnosis, I am now walking.”

Despite the overwhelming physical challenges, the often less than optimistic prognoses, and the inconsistent attitudes and approaches encountered with medical professionals, the survey found that many respondents refused to give up hope for their chances for regaining function. 80% took part in some kind of ongoing rehab or therapy beyond initial inpatient rehab even though 74% did not have this therapy paid for by their insurance. 100% found this therapy to be beneficial (in a number of ways) including 51% who said that this therapy had reduced or eliminated their need for medication and 57% who reported that ongoing rehab or therapy had helped improve secondary conditions that come with SCI (e.g. blood pressure, bowel/bladder function, and Autonomic Dysreflexia).

“I needed much more therapy for many hours at a time. It wasn’t even close to giving me what I needed. I feel like my insurance pretty much gave up on me.”

“I have gone from wheelchair with no movement against gravity to standing, to walking with a walker (5 months), to forearm crutches (8 months), to unassisted (18 months). My rehab has helped me get stronger and push my life on my feet which has lead to more improvement.”

The survey confirmed a significant finding from previous research conducted by the National Spinal Cord Injury Association[4] in which a majority of respondents were told to exercise by their physicians but did not have access to a trained therapist and did not receive specific instructions regarding the kind of exercise to engage in or how often.

Overall, the SCI Survivors Survey provides some valuable information about what people go through following this life-changing injury, but it also raises a number of questions that are especially relevant now, with so much of the national conversation centered on healthcare.

Why is treatment of SCI not utilizing newer, more progressive treatment options more often? Even though the number of people who regain the ability to walk is small yet significant, why do medical professionals consistently frame the prognosis in a negative way and choose to tell people that they won’t get back on their feet? Why don’t they admit that they simply can’t predict outcomes and encourage people to work hard to try to reach their potential? Why are insurance companies not stepping up to the plate in providing better therapy options that can minimize secondary complications and prevent future hospital visits, and the exorbitant costs associated with them? Why does insurance appear to pay for continuing medication but all too often refuses to pay for more exercise or therapy that can reduce or eliminate the need for medication? How are people meant to deal with the financial impact of the injury if something as fundamental and necessary as a wheelchair is often not paid for by insurance?

The survey results suggest that the entire system of treating SCI is insufficient for helping SCI survivors maximize their chances for recovery, and in need of significant change. Because of the many complications and health needs that arise from a Spinal Cord Injury, SCI survivors develop a number of continuing medical needs from their respective healthcare providers. In a time where healthcare is a primary issue for many people, it’s important to think about how to help people who suffer this injury to live healthy and productive lives, with access to a healthcare system that is balanced in providing necessary and effective services while maintaining an efficient and financially sound system.

Arash, like so many other SCI survivors refuses to give up hope, drawing inspiration from the many people who have recovered to levels greater than anticipated. Like a number of respondents in the survey, he has to rely on sources and support outside of what his insurance has provided him in order to maintain his aggressive therapy schedule and to achieve his ultimate goal, to get back on his feet.

On March 20th, Comedy for a Spinal Cause will be hosting a standup comedy show in San Francisco showcasing local comedians with all proceeds benefitting Arash and his recovery. Find out more and purchase tickets here.


[3] U.S. Centers for Disease Control and Prevention

http://www.cdc.gov/traumaticbraininjury/scifacts.html

A word on nutrition

I recently found an old memento from my early days in the hospital last year. Less than a week after massive spinal surgery, I was completely immobile, laying in bed and the nurse brought me my lunch tray. On it was this:

"Health" shake

I was too weak to take a deep enough breath to laugh, yet I couldn’t help but smile, cringe and awkwardly chuckle to myself. “This? Am I really meant to drink THIS?” I know picking on hospital food is an easy target as no one expects it to be tasty, and to be totally fair, most of the actual food was not as bad as I expected. There were plenty of somewhat healthy options and they gave me a choice of what to eat instead of just arbitrarily shoving microwave hamburgers and canned peaches in my face. But this was surprising to me, especially given the circumstances.

….

Health Shake 2

Once I read the ingredient list, I couldn’t help but wonder….Aren’t I in a hospital, where I’m meant to get better? Shouldn’t I be avoiding a bunch of chemicals and synthetic additives? Isn’t it counterintuitive to ingest a bunch of processed artificialness when I’m in such a volatile state and my body only needs what’s essential and healthy? And that’s when I had an epiphanic moment and the reason why I asked my mom not to throw this carton away. I wanted to hang onto it because I knew this moment now would come and I could look back at the sardonic tragedy of this glimpse into our healthcare system.

It also seemed strangely comedic that I was being given no less than five different laxatives and medicines to help move things through my body (due to the fact that I was laying in bed for ten days) yet the food I was being served contained probably a quarter of the amount of daily fiber that a normal person would need. Why not ease up on the laxatives and feed me some extra broccoli or kale? Wouldn’t a fruit smoothie replace the need for all that medicine, not to mention that it would taste a lot better than this “fortified” strangeness?

I can laugh about this now because these days, I have the fortune of being able to eat a healthy diet of my choosing, but the reality of this paradox in our healthcare system still saddens me. We make all these gains, research and develop incredible technologies that improve the health of many, yet amidst this vast knowledge, hospitals are still serving synthetic chocolate milkshakes with “health” on the front, that look like they’re straight out of the 60’s?!

Utah Rehab Update – The Lokomat

I wanted to send out a quick update on the rehab I’ve been doing here in Utah. I’ve had a great time here so far, meeting the inspirational founder of this facility and a fantastic group of physical therapists who are some of the most knowledgable and experienced professionals in the field of Spinal Cord Injury Rehab. It’s also been great to meet some other SCI patients, all at various stages of recovery and some even on their feet, walking independently.

I always said that I didn’t care if I never met anyone else with my level of injury who had recovered, because I would still push myself endlessly to reach my goal, but I must admit that it’s relieving, motivating and inspiring to meet other people who broke the same vertebrae as me and are back on their feet. That said, one of the things I’ve learned here is that no two SCI patients are the same. Even though I’ve met a number of people here with the “same” injury as me, there are many unexplained phenomena in terms of each person’s respective challenges and their prospective recoveries.

Ok so let’s get right to the fun stuff. I’ve been able to do some new exercises and use state of the art equipment that I had not previously tried which has been pretty fun.

You ever wonder what one $350,000 piece of equipment looks like??? Well let me introduce you to the Lokomat:

This is a revolutionary machine for SCI rehab as it’s adjusted to the exact length and size of my legs not to mention that everything – from the amount of weight I’m bearing through my legs to sensing how much effort and movement I’m giving to the walking – is precisely measured and captured in a computer. Nearly everything can be adjusted and tweaked to suit the particular person and well, it’s just pretty damn cool. Yes I do look a bit like Robocop walking but it feels amazing to stand upright and have such a natural stepping feeling for the first time since my accident.

One more video, just to show you a different perspective. Here you can see two important things: 1) the screen in front of me which is basically a virtual reality depiction of me walking and my movement is reflected in the digital game 2) the mirror below the screen, showing my legs walking:

There are only a handful of these Lokomats throughout the US so I’m very fortunate to have access to this one while I’m here in Utah. Stay tuned for another update soon…

FES Bike Riding

I LOVE riding bikes. Before my accident, I rode my durable street bike to and from work and all over town since it was my primary source of transportation. Having worked as a bike tour leader for over five years, I also appreciated the joys of recreational bike riding and would spend many weekend days on my speedy little road bike, cycling up and down and over and through so many of the most scenic locations in the Bay Area. One of the things I miss the most about my current physical challenges is the ability to have that freedom of walking out the door, hopping on a bike and zooming around on two wheels all with the strength of my own legs.

So I was pretty excited when I first learned about using an FES bike and its benefits for treating Spinal Cord Injury. FES (Functional Electrical Stimulation) involves placing electrodes on legs, arms, abs, back, glute, or any other muscles that are not functioning 100% and then applying electric pulses to those muscles and “forcing” them to work. It can be used in a lot of ways in rehab but the bike is one of the most common ways for treating lower extremities. The idea is that the electrodes plug into a sophisticated machine (with software that can be programmed specifically to each person’s needs) while the legs and feet are strapped into a stationary bike, and the electrical stimulation being sent to the muscles makes them engage and actually pedal the bike. The whole machine costs close to $18,000 so I only have access to it twice a week when I go to SCI-FIT to work out, but after an hour on the bike, my legs tingle and fatigue and feel worn out (in an amazing way) because those quads and calves and hamstring muscles were actually used.

It’s certainly no replacement for riding outdoors with hills and climbs and descents and curves and sweat and all the other goodness of riding an actual bike, but it’s a great indication that my muscles remember what pedaling feels like and that the muscle memory from all those miles I biked before my accident will help my legs come back to life.

Riding the FES Bike

Riding the FES Bike

My story on the Huffington Post

I’m frequently overwhelmed with the amount of information that we have access to these days. Countless websites, social media sources, plus 1s, “likes”, reviews, surveys, posts, tweets, tags, and beyond. But there are moments, like now, when I feel so lucky to live in a time with so much connectivity and communication with others around the world. I was recently contacted by another blogger Arthur (link to his blog) who has written a book and deals with his own recovery and medical challenges. After a few back and forth emails sharing our respective stories, he mentioned the chance of getting our frustrations with the US medical system out to mass media. Thanks to his contact at the Huffington Post, they wrote an article about the shortcomings of healthcare and sited my story and his in the article.

http://www.huffingtonpost.com/gregory-g-allen/its-time-congress-stands-_b_2563497.html

I am just one of thousands – if not millions – of Americans who feel abandoned and shortchanged by the inadequacies of profit based insurance companies that run healthcare in the US. I would be honored if you can read the article and share with your respective communities. Thank you in advance, and to Arthur in particular.