My inspiration

Understanding brain injury, and worried about my child, I worked hard to stay one or two steps ahead. In the process of helping Sarah, I discovered that during my years of brain injury, I have spent most of my energy masking and concealing what I felt, instead of confronting what I have, as I did not know any better. I began changing these dynamics for my child by coming out to meet the challenge, using the best of science, medicine, research, and education. After her initial years of struggle, we began working together as a team and were able to turn things around, despite the many surprises and setbacks. Now, with this combination of knowledge, experience, and education, I am duty bound to help the next brain injury survivor to get a head start and do better than we did.

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The neurologist pretty much told her that college would be tough, and advised her to reconsider pursuing higher education, period. I remember the look on her face, and how hard those crushing remarks felt for her and for me as well. But Sarah was determined to forge forward with higher education plans – I don’t know what fueled her determination. Nonetheless, I will need to acknowledge that high school and college were full of hard fought battles, with peaks and valleys. But despite all the frequent challenges and setbacks, Sarah has completed her Bachelor degree in Biopsychology, Masters and a PhD in Neuro-Psychology. She also managed to maintain straight A’s, except during those periods of setback. Sarah’s persistence and determination have been an inspiration to us all.

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She thought all her past 30+ surgeries were just the usual consequences of her practice and workout routines, unaware that EDS would factor greatly as the primary cause of most of her surgeries and joint replacements. When her hand surgery and hip replacement surgeries were not successful and required multiple operations to correct, her doctors started to dig deeper. After some testing and lab work, her geneticist diagnosed her with hyper-mobility EDS (hEDS), also known as Hyper-mobility Spectrum Disorder (HSD). The news was hard, but somewhat expected, and over the years we have learned to accept and adapt. Some of those adaptations included finding a special type of South African made crutches that she needed to use (as ordinary crutches destroyed her hands), the multiple hand and finger splints that she wears daily, and the metal hip braces she had to wear, and often slept with, for months at a time. 

While we accepted the reality of her diagnosis, aging brought with it another major problem. She started rapidly losing weight, experiencing gut pain, and other digestive and abdominal issues. Some of those abdominal and digestive issues that were present during childhood were now more severe. Despite following up with specialists and undergoing every test imaginable, the situation deteriorated quickly until she crashed. While physicians and specialists explored the causes of her digestive issues, they were largely unsuccessful in helping with a solution. Meanwhile, I searched the internet, across the USA and Europe, looking for anything that could help. During my research, one thing that popped up a few times, and sounded like a last resort, was the phrase “management by diet”. In retrospect this made sense – she needed foods and fluids to survive, but her body was sensitive and reacting to the foods and fluids that she was consuming. I began breaking down her intake and looking at all sorts of diets and explanations. We started implementing new dietary and hydration changes, and that made a big difference. While this was not a cure (as there is none for hEDS/HSD), it was definitely the next best thing.

Though this has been a difficult journey, today we are managing better, and Diane never slowed down, as an invaluable worker, as a fantastic mother, or as an amazing partner. What an inspiration!

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Trigeminal Neuralgia is regarded as one of the most painful disorders known to medicine. The exact cause is unknown, but believed to be due to compression from a blood vessel against the nerve as it exits the brain stem in the base of the skull. As a child, I witnessed my mother’s screams and collapses from her pain. My father was an amazing caregiver, who searched high and low for relief. Her options of treatment at the time were neurological medications and Stereotactic Surgery. The neurological medications can cause dizziness and brain fog-like effects. The surgery option involved zapping and burning a healthy part of the nerve in the jaw area in order to numb half of the face and stop the pain. This seemed to me like cutting your arm off in order to prevent severe carpal tunnel pain, as an example. In addition to neurological and pain meds, my mother had several Stereotactic surgeries over the years, until the nerve became fray, and now she can only manage with medications alone. Very tough, but she has been managing relatively well. My mother is a talented artist, a painter, a poet, and a writer. Now in her mid 80’s, I am amazed at her enormous production of paintings, poetry, and writings. She published 3 books in her 80’s, and just had a book signing event recently. My mother has been an inspiration to us all.

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I remember my ex-wife driving me to a highly specialized neurologist in another city. During the doctor’s visit, I was writing my answers, as I could not talk from the horrible pain. At the end of the visit with the neurologist, I suddenly had an escalating pain episode that would not stop. Thankfully, the doctor’s office was attached to the hospital. I was admitted, pumped full of pain meds, and scheduled for Stereotactic surgery the next morning, the same surgery my mother had. My ex-wife went home to get some rest so she could return for the morning surgery. That night, I remember laying in bed all drugged up and groggy in a dark room, and through the door, a fuzzy shape of a doctor walked in. He started talking to me, and straight away advised me to do an alternative brain surgery instead, saying “you are young enough to handle it”. I remembered thinking that I just wanted the pain to stop, so I agreed. Microvascular Decompression brain surgery and recovery was not easy. But looking back now, in the long run, I fared much better than my mother. Though there is no cure, there was much relief. I wish that I could have thanked that fuzzy night angel that walked in my room and gave me this great advice, that made a big difference in my life since.

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Their answer was flawed, as they provided me with a long list of activities that I would not be able to do, including riding bicycles, playing tennis, snow skiing, etc. In the 12 months that followed, I was able to understand why I could not do all of these activities, as I was hardly able to do more than walk in the first 2 dysfunctional prostheses. But once I had my first good prosthesis in 1978, and for the next decade or so, I found myself seeking out all these prohibited activities subconsciously. This took much of my time and energy seeking, planning, learning, and trying those activities, until I became good at almost all of them. Then, about a dozen years or so later, it dawned on me that I was seeking most of these activities only to prove something, subconsciously perhaps. Once I became self aware that I was wasting much time and energy doing things that I had no interest in, I started on a corrected course. Going forward, I started to only work on the activities that I like. Here is my point, those of us with short amputations, we have limited daily energy on our feet, which is less than standard size amputations, and certainly much less than what we used to have before losing a leg. So, I started using this limited daily energy wisely by doing the things that I want to do and the things that are meaningful to me. With a few exceptions, I am able to do just about anything that I set my mind to, and I am considered to be a top performer in my amputation and prosthesis class. 

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At the top of the appropriate yellow pages section, I found and called the first place on the list, explaining my case while asking questions. That’s when I hit gold. After talking to the receptionist, she transferred me to one of the owners, who was also an amputee, she said. After explaining my situation and what I was looking for, the man set me up with a quick appointment, and we met in his tiny facility. During our meeting, he listened to me and examined what I was wearing. Then, he shared with me that he is a WWII veteran with a similar short amputation and started to explain the kind of transformation that we were about to go through by building a completely different style prosthesis. I immediately felt relief and excitement at the same time knowing that he would certainly understand my needs. During our visits, I was listening and cooperating, but my expectation was limited to something better than what I had. When it was time to start walking in a test prosthesis, I was very impressed, and when the leg was completed, and I tried it on, I was blown away. I thought, this is like the best artificial leg to have, and it was. I remember having the desire to go dancing, literally. The fitting was near perfect: it walked good, it was slimmer, much lighter, and looked nice. We were having our final session before paying my $850 bill- yes, only $850 ($25,000 today). One thing that was special is how this man took the time to walk me through many important details about my situation and educate me on what I should expect and look for in any prosthesis. This was a valuable lesson that helped my transformations through the years, and I continue to appreciate it to date. This prosthesis and the lesson that came along with it helped set me on a successful course. Although my prosthesis today has evolved in many ways, the essential core fitting concept remains the same. Since then, I have been in action and participated in all sorts of activities, including various sports, fixing my cars, completing my own home projects, and even riding motorcycles again. I don’t know where my life would be today if I did not meet this man. 

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