Project Apollo was launched by a group of patients with complex, chronic, undiagnosed or other difficult medical conditions. Sharing our stories is an important part of developing our community. Each of us had overcome significant challenges – with our health and with the healthcare system. We urgently wanted to better understand our conditions and to make the healing path smoother for others. Here are some of our stories.
Although I had a long career supporting early-stage science and technology entrepreneurs, I spent the first half of my life as a professional dancer. My identity is very closely tied to my ability to stand and move in space. In 2007 – literally overnight –my legs seemed to stop working – and I needed to consciously command them just to walk. And, along with a growing list of autoimmune symptoms, the muscles in my lower legs began to soften and shrink.
So I took an early retirement and began a diagnostic odyssey. I saw rheumatologists and neurologists – underwent 4 spinal surgeries, and was privileged to be a patient of muscle specialists at the NIH. Along the way, many possible – and scary – diagnoses were considered, tested and abandoned. As it turns out, although I’m not officially diagnosed, I likely have a form of adult-onset muscular dystrophy, complicated by spinal stenosis. Along the way I discovered I had several genetic mutations as well as some specific blood markers which are implicated in degenerative muscle diseases, but the mutations are not yet well-studied, so there’s a lot that researchers don’t yet know. The biggest challenge during my diagnostic quest was finding doctors who would listen and respect that fact that I really know my own body. I have a great team now, but it took a lot of “selection” to get here.
Through Larry Smarr I was introduced to Dr. Kurisu, and I’m bringing to Precision Healthcare Ecosystem & Project Apollo an eclectic ‘basket of skills,’ includes a career in incubating, launching and managing both non-profit and technology-based companies, and an MBA in Health Services Management. I’ve also learned to navigate our fragmented healthcare system. But having gotten to this point in my life, I very much want to help other patients – the quest for a proper diagnosis should not be this daunting. And as a patient, I’m a work-in-progress, and I am committed to deepening my understanding of my own condition and exploring possible healing options.
After a radiofrequency ablation to relieve chronic pain and migraines, I felt a bolt of lightning go from my neck into my right shoulder. My right arm went completely numb. Suddenly, I couldn’t move my arm and the paralysis spread through the right side of my body.
I was transferred to the ER as a stroke victim. Multiple scans of my head revealed no evidence of a stroke. I knew the problem was in my neck. I kept telling the doctors to scan my neck. I was lucid. I was speaking clearly, but they wouldn’t listen to me. Instead, they repeated the MRI on my brain. After 8 hours of insisting, they scanned my neck. The scan revealed multiple air emboli at C1.
My first thought was, I’m in trouble here, but I knew my diaphragm was intact. I knew I was going to survive
I knew I needed hyperbaric. I immediately said, “You’ve got to get me into a hyperbaric chamber. “How would you know that?” they said. I knew it because I am a certified diver. The way to get rid of emboli is in a hyperbaric chamber.
My daughter, an ICU nurse, asked for a prognosis and was told, “What you see is what you get.”
I felt insulted. He should have said, “I don’t know.” I lay there 24 hours before I was transferred to Hillcrest and into their chamber. The dive treatment worked. From the very beginning and through the first five months of traditional rehab I was told that spinal cord injury victims plateau at 18 month
Then I began seeing Dr. Kurisu for osteopathic treatment. He helped me understand there are no limits to my recovery. I see Dr. Kurisu twice a month. I see Dr. Mignosa twice a month. I see Dr. Anna Halbisen once a week. I go to VIP neuro-rehab twice a week. I am always working on rebuilding myself.
Blessings came from this injury. It helped reunite my family. It brought me into contact with met amazing practitioners. After 8 years of hard work. I’m still regaining strength and sensation. I’m part of Project Apollo because this is where doctors listen and hope resides.
I’m here today to tell you that I’m still standing.
I’m here because I’m Janice’s husband and primary caregiver. We’ve been married for 42 years. We’ve been through the fire together. Surviving together, we are stronger now than we’ve ever been.
In 2009 I had Prostate cancer. Thanks to the incredible skills of Dr. Christopher Kane the robotic surgery was a success. In 2010 I was rebuilding myself when Jan’s spinal cord injury shattered my reality. I was dislocated and lost, but found the focus to care for her and our family.
In 2012, we were coping, Jan was making remarkable progress with Dr. Kurisu, but I was stressed out, overweight, overworked, with my thinking clouded by denial and depression. After months of ignoring all the classic symptoms, I got myself to a cardiologist just in time. During an exploratory angioplasty, I had an MI and received two stents. I spent 3 days in the hospital. I was briefly counseled on health and nutrition. I was given a handout on nutrition to take with me.
One of the doctors told me I was a lucky guy, “You can be healthy again. Diet and exercise and the right medication will bring you back 100%.” I said, “Okay that’s what I’m going to do. I am really going to change.”
One of the doctors, a big man leaning against the wall with his arms crossed, suddenly said, “Bullshit! I know guys like you! You’ll be back in a year for more stents!” At the time I was furious and really motivated to change. I’d show him. But my idea of rehab was pushing a wheelbarrow full of rocks uphill. I was clueless.
Janice, a long-time patient of Dr. Kurisu asked him for help. Mike referred me to Dr. Mimi Guarneri a world-class cardiologist with a passion for prevention and integrative health. I met Mimi and entered her lifestyle change program at Scripps. Thus began my transformation. Dr. Guarneri helped me find post-traumatic growth. (Scripps no longer offers a lifestyle change program. Dr. Guarneri continues her great work at Pacific Pearl in La Jolla. Seeing her remains a joy. )
The lifestyle change program was months long meeting three times a week for in depth work. I put everything I had into the program and it worked so well. It truly changed me for life.
- I learned about integrative medicine.
- I learned to meditate and practice mindfulness-based stress reduction.
- I learned yoga.
- I exercised and lost weight.
- I became a vegetarian.
The program also helped me overcome my denial about cancer. I’d skipped the follow-up treatments for my 2009 surgery. I went for the tests. I learned the cancer was back. I was given 7 years. A remarkable span of time to change, if I took radiation treatments, During those treatments I lived what I’d learned in the lifestyle change program. Meditation, a healthy diet, community support, and exercise helped make the treatments were a complete success. The side effects were minimal. All these years later I’m still living what I learned.
- Today I’m cancer-free.
- Today I stand by the love of my life.
- Today I am part of Project Apollo and working with Precision Healthcare Ecosystem to help others find their way to health.
I am very grateful to be alive!