Help HOPE Live for Arthur Martinot

October 28, 2024

Hello everyone!I am finally taking the time to write a long overdue update, not for lack of trying. It is beginning to feel like we are in a much better place than we have been; perhaps I needed this time to process and gain perspective. We are now living in Pomona. We are renting a house not far from our last place and still close to the paralysis recovery center - TPS. A previous owner was a wheelchair user and had widened all the doors and built a concrete ramp over the single step to the front door. The bathrooms are small but we were able to purchase a shower chair with sliding seat. The kitchen is somewhat more spacious than the last but I still can’t really access the sink to help with dishes, or reach the cabinets over the counters. One of the next few projects will involve building a pull-out counter for me to glide under, intended on allowing me to participate in food prep. It’s now been over two years since the accident and the emotional and mental recovery is outpacing the physical one, and the practice of reconciling the two has been my main focus. I have not stopped working out and rehabbing; almost every day I take time to use the standing frame, stretch, hand cycle on the machine, go out and push and of course attend TPS 4 hours a week, to help continue the neurological recovery effort. I continue to gain strength and control in my core, increase my breathing capacity, and control my low blood pressure, which has felt like having a 20lb weight tightly strapped around my torso since the beginning of the recovery. Although it is unlikely I’ll ever walk again, my goal to stand independently remains. It is also crucial for me to continue exercising in order to try to avoid serious complications in the future. I’m now three times more likely to die of a heart attack or suffer a stroke and I’m fighting off osteoporosis, to name a few. I’m sober for over two years now and feel much more aware physically and mentally. I need all the advantages I can get, so cutting out alcohol wasn’t even a question. I feel like this sudden forced change has given me the opportunity to stop and listen, to be more present, which is gradually reframing what is important in life. I’m learning to deprogram the constant want and should, and be at peace with much less, all the while realizing that I truly don’t need that much. All that to say that we are adapting. It has been and continues to be difficult, but we are, for the most part, ok. We sold our house in July, which was quite difficult emotionally. When I was still in the hospital, I had this idea that I would soon walk up the steps to our home and begin the process of reclaiming our old lives. As time passed and that possibility faded, we decided to let go. I also dissolved my business and decided I would pick a new venture when the time came. I knew when I was still healthy that if I ever got injured, it would most likely mean the end of my current profession. Surely enough, this became true beyond what I could imagine. I still have no movement in the fingers. I can pick up a fork in order to eat, by balancing it between two fingers. I can pick up a few things by flicking my wrists back, but I have no grasping strength. Megan has been my hands for almost everything, including personal care and especially preparing food but she’s also become adept at using a number of tools, to fix or adjust my wheelchair for example. We also still work with caregivers every day of the week to help with daily routine and food prep. On a more exciting note, we sold our old 4wd camper van and bought a used Sprinter cargo van. We had a power 6-way transfer seat base installed, which allows me to hop into the driver seat from my wheelchair. I board the vehicle with the help of a crane arm which hoists me up in my wheelchair. We also had hand controls installed so that I could drive. There’s a bench in the back that converts to a bed and soon we will hit the road to camp and get back into nature. Additionally I’m working on putting together a full-suspension off-road hiking power chair, which could maybe become a prototype for a new product line. I also got a new daily chair, with the help of a donation from a fellow TPS client. This chair is smaller and much lighter, better fitted to my body, and much easier to push. Slowly we are finding ways to better adapt to our new lives. As we continue to make progress and start reintegrating into the world, I want to thank you for thinking of us, for being a part of our lives, for being there for us and for being patient. I know it’s taken time for us to say hello- know that we are thinking of you too.Arthur

June 25, 2023

Hello everyone!

I realize this is a long overdue update, but I wanted to continue to keep everyone informed.

After four months of outpatient rehabilitation at Casa Colina, the insurance company finally said no more. I am continuing rehabilitation at The Perfect Step twice a week, whose approach to physical therapy and rehabilitation is a bit different from the traditional PT and OT. I am able to focus more on activating my legs and core, whereas Casa Colina was really preparing me more for living my life in a wheelchair.

As far as progress goes, I do have limited ability to press down with my legs, which is very slowly increasing each week. I am still very far from standing on my own, let alone taking steps, but continue each day to work toward that goal. There are small flickers in my fingers but, nothing really resembling full voluntary motion yet. The core area has been improving much more than the rest. I am able to take a full deep breath, I’m able to twist from side to side, much more than before, and there are some muscles contracting in my lower back and abdominal region. This all continues to give me great hope, and is a very promising sign of additional progress to come.

That said, I am realizing that my hope of walking may be further off than I originally anticipated, and I am now shifting my focus slightly on finding ways to start living my life again. I’m not entirely sure what that means personally and professionally yet, but I am excited at the prospect of rebuilding from a completely new perspective.

I also wanted to share with you and bring awareness to the complications associated with a spinal cord injury. I think it’s easy to assume that becoming paralyzed only means no longer being able to move or have sensitivity in the paralyzed limbs. Unfortunately, it does not end there. Having a spinal cord injury is absolutely devastating to the nervous system.

The most common complications start with neurogenic bladder and bowel, which basically means that they no longer work properly.

I wear a condom catheter and leg bag 24/7. I find it safer and less invasive than an intermittent catheter. I am able to schedule a bowel program once a day that require laxatives, so aside from a long time sitting on the toilet, this part is relatively ok.

I also have a bit of spasticity, which luckily is not as bad as it could be. I just have to be careful at times as my muscles can contract rapidly and throw me out of the chair or off the commode, or can keep me up at night. There’s also sexual dysfunction, but I’m not gonna get into that one, kind of speaks for itself.

Orthostatic hypotension is another complication, for which I’m taking vasoconstrictors three times a day. Muscle atrophy is also a pretty demoralizing side effect. I do what I can to try and maintain as much muscle in my legs as possible, but losing that battle. My arms have lost about 50% of their muscle mass as half of the muscles are not innervated. Next is Neuropathic pain. I feel very lucky that I have very little of this type of complication. I do feel a near constant buzzing in my legs and intermittent pulses, moving down to my toes, which kind of feel like shockwaves, and the occasional burning sensation, but from what I hear that’s very minimal compared to what some other people are feeling.

Autonomic dysreflexia is a bit complicated to explain, but basically any time the body is feeling something that it cannot fully communicate to the brain, the body reacts in various ways. When I’m about to get sick, or when I twist my knee or my foot or crack my elbow, my body starts shaking uncontrollably and I feel freezing cold. Sometimes people get headaches or nausea or migraines as well.

I’ve also lost the ability to regulate my body temperature. So I can get really cold easily or overheat really easily, and cannot thermoregulate on my own without external help. I also have to be really careful with pressure ulcers. Lately I’ve been struggling with these on my ankles.

Decreased bone density is also something I need to watch, I do have early signs of osteopenia, which is the beginning of osteoporosis. I’m working towards acquiring a standing frame, which is a contraption that I sit into and holds my back straight, then it pushes my knees straight into a standing position, to put weight on my spine, hips, legs, feet and minimize loss of bone density.

Coughing and sneezing are also quite compromised as I don’t have the lung power I used to have.

UTIs will send me to the emergency room, so I do everything I can to minimize that risk (condom catheter versus intermittent catheter, vitamin C, cranberry, pumpkin seed, oil, etc.).

So far, that’s the bulk of it, and I hope things don’t get any worse lol.

In summary, I have a completely different body!

I’m not sharing this to complain or for pity or encouragement. I strongly believe that it is important for me to share this with you, to bring awareness for a better understanding of spinal cord injuries in general.

Thank you for reading and thank you for your continued support, for your prayers and your positive energy.

*************

From Megan:

Six months have passed and it certainly doesn’t feel possible, but here we are on the first day of summer, enjoying some long-awaited sunshine and a little bit of down-time. Arthur spent all of December and the first half of January in-patient at Casa Colina, building upper-body strength, developing different self-care routines better suited to life at home, and establishing relationships with doctors and therapists. On January 14, 2023, he was discharged and came home to live with me in our temporary 1-bedroom apartment a couple miles from the hospital. It was a BIG learning curve for us both, to say the least! From mid-January to early April he then attended the Casa Colina Day Treatment (a spot never opened up for the Transitional Living Center as we had expected) three days a week, supplementing the two off-days with private rehab-therapy at a wonderful place called The Perfect Step right next door, also in Pomona. The three months at the Day Treatment provided Arthur with the necessary OT and PT he needed to adapt to life outside of the hospital, and since it was a full-day program, it also provided me with some time to work and take care of myself a little bit. It was quite devastating when insurance denied him more time there… I now have a new trigger phrase, “not medically necessary” – it is so inhumane and more evidence of how our medical system here in the US doesn’t actually put the needs of people first but instead prioritizes dollars. Since losing the consistency of daily therapy through Casa Colina, we have been working to put alternatives into place, with little success to date. As we were forewarned, services for private pay are really the best way to get what we need but even with the financial generosity of so many, the cost is prohibitive. We are incredibly grateful for the team at The Perfect Step and Arthur’s continued ability to attend twice a week. The folks there are also really well-connected and are helping us navigate this difficult period of adapting to a totally different reality. We started looking for a new, more permanent place to live in April as well, and are finally hoping to sign a lease this coming week, after many many rejections. We stopped revealing Arthur’s disability because we felt it was part of why we were denied so often, which is an absolutely terrible thing to feel, say, and act on, but again, part of learning this new reality where discrimination based on ability (or how you might bang up walls with a wheelchair) is real. We push each other constantly to remain positive and forward-looking, and we are grateful for the continued support of our extended network of family, friends, and friends of friends through visits, calls, messages, prayers, and the like. As we move into a more settled space, we are looking forward to building a home gym/therapy room, getting Arthur driving, and figuring out how to camp in Larry le Van (our off-road camper van) again!

I also have giant THANK YOUs to highlight: firstly to April and Martin and family, for providing the time and care for Arthur which allowed me to go to New York City for three days. I was able to attend a birthday event of a dear friend who himself recovered from a serious health issue, as well as meet Arthur’s aunt Claude for the first time. Despite coming home with Covid (for real?!) it was a restorative trip for me and a great opportunity for Arthur and I to begin to learn how to be apart. We are also grateful to my parents, uncle Dan, and sister Natalie for helping us renovate our bathroom, pack up our LA house, and empty it out so we could get tenants - a great success and we could not have managed without them! Lastly, we are thankful for the support of Arthur’s parents from afar, helping us find a new place to live where we can finally unpack and rebuild our lives… we left June 23, 2022 on our epic European vacation and we are ready – oh so ready - to be “home”!

On a final note, our interview with Help Hope Live was featured in their Voices of Hope, May campaign – you can read the entire interview here: https://helphopelive.org/first-year-after-spinal-cord-injury/