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: helphopelive.org

December 30, 2022

WE ARE BACK! Our 24+hr adventure from Badalona to Pomona started and ended on December 1, and in the one month since arriving so much has changed, for the better.

Arthur was admitted in-patient at Casa Colina Acute Rehabilitation Center. At first we anticipated just a few days to make sure he was stabilized after so much time on a stretcher (admittedly his most comfortable trans-Atlantic crossing to date) but it's turned into a longer plan because his doctor and OT/PT team realize how much potential he has to make even more recovery in a short amount of time with close care. As many of you are aware he was forced to wear a large and restrictive thoracic brace for three months at Guttmann; what we didn't share widely was that his neck stabilizing plates had shifted 7mm (most likely during rehab) at Vall d'Hebron and rather than correct the shift surgically, wearing the brace allowed his body to heal naturally while protected with the brace. This brace inhibited Arthur's movement however and now that it's off, his body is reconnecting and strengthening like never before. It helps that he LOVES the food at Casa Colina and can order as much of it as he wants - the kitchen already knows he's a "double portion" patient.

Here at Casa Colina, working with a new team of physios and on a new drug therapy, he is so much closer to self-transfers, is discovering new sensations in his legs, learning bowel and bladder independence, and has a confirmed muscle contraction in his left thigh! We are ecstatic! It cannot be overstated how amazingly fortunate he was - thanks 100% to your generosity - to have the time at Guttmann to heal and recover while also participating in rigorous therapy and we both feel well-prepared for these next stages. We used 100% of your donations received through GoFundMe to pay for 360 hours of physical therapy and occupational therapy, where Arthur learned to transfer in and out of the chair, practiced sitting upright, stretching, and many exercises including trunk support, bed mobility, strength, chair mobility, motorized bike for legs, hand bike, various hand and arm dexterity exercises to name a few. In addition, the donations also covered 82 days of in-patient care, where we both learned all aspects of self-care outside the gym. Arthur had to relearn how to brush his teeth, eat independently, transfer in and out of bed, put on a shirt and a sweater, and more.

After landing at Casa Colina, Arthur was well prepared to continue on with therapy and we feel incredibly fortunate to have yet another great team of people working with us and who see the possibilities for Arthur's recovery and believe in him as much as we do. For example, he was able to stand in a different piece of equipment without trunk support - even the doctor was high-fiving! We expect his discharge mid-January from acute care and he will enter Casa Colina's Transitional Living Center (TLC) for hopefully a couple of weeks. This center is therapy 24 hours a day; there is a kitchen to practice or relearn food prep, a wood shop for those who want to get back to their skill (lots of accidents happen on construction sites) with a nurse onsite should medical needs arise. Folks at the TLC spend 8hrs a day 5 days a week in OT/PT therapy at the gym and get weekend passes to spend at home with their families, yet another transition that we will learn.

Speaking of home passes, we were so excited to spend Christmas day together with Severine at our new apartment, located only two miles from Casa Colina. It was wonderful - a perfect 80 degrees and sunny, uninterrupted time together, with family, and with the cats! We even got in an afternoon walk through the Claremont Colleges' beautiful campus grounds. Our car transfers go smoothly (transferring in and out of the wheelchair is the most dangerous activity for Arthur right now) as do other basic care transfers and we are feeling so ready to have weekends together outside of a hospital setting, to begin developing our new routines and getting back to our beloved missed routines, mostly revolving around morning coffee in the sun with the cats. What could be better?

Looking ahead, we will be in the Pomona area for the next 5 months, already eyeing a private program called The Perfect Step, a program specializing in paralysis recovery, for when insurance imposes inevitable limits on out-patient therapy at Casa Colina. Arthur is meeting folks through an SCI support group, already learning so much from others who have lived through similar conditions and are thriving. There is also a local support group for "girlfriends and wives of men with SCI" (such a revealing name) that Megan will join now that our housing is secured and life is returning to a more recognizable pace.

We are also incredibly grateful to be surrounded by friends and loved ones and are getting a steady stream of visitors. It was a powerful and emotional reunion with the Alvarez family who arrived in matching Stand With Arthur sweatshirts - the boys even named their basketball teams in Arthur's honor - and we look forward to having time and energy to receive all the love and hugs that are yet to come. It has been a wild ride these last five months and we presume the next five will be less dramatic but still exciting with nonstop learning and changes. Moving forward, we want you to know that all of the donations received on Help Hope Live will be used for anything that the insurance refuses to cover, including equipment and additional therapy, which will undoubtedly be needed. We are so appreciative of all of your positive thoughts, prayers, cares, and support!

With love and gratitude -

A&M

**We've added a few holiday photos in the December highlights folder.**