Mark & Dee's story: For better, not worse
Last updated: 22 July 2019
Over the past few weeks our founder and CEO, Sjaak, embarked on a unique journey across the world to meet with patients, families, caregivers, patient organisations, doctors, healthcare professionals, healthcare innovators and medical teams. His fifth city in the tour was Santa Cruz, California, USA. That's where he met a family with a fighting spirit.
Meet Mark and Dee, happily married and fiercely supportive of each other for 33 years. They live in Santa Cruz, California, USA and have two young adult sons, Blair and Chad, who both reside in the San Francisco Bay Area. Before Mark’s early retirement brought on by his ALS diagnosis at age 55, Mark was a spirited entrepreneur running a successful company. His dedicated wife, Dee, was (and still is) passionately involved in social justice and sustainability causes. Blair and Chad visit and assist their parents as often as work allows, and the family is committed to each other as well as others in their ALS community in need of support under such challenging circumstances.
Prior to 2015, Mark began showing random signs of amyotrophic lateral sclerosis (ALS), otherwise called motor neuron disease (MND). While in the gym one morning, Mark’s left arm gave-out while doing push-ups; his body fell abruptly to the ground. Drinking glasses and dinner plates were accidentally dropped from his hand, and Mark’s weekly golf partners began noticing that his swing was slightly 'off'. He started to pay conscious attention to the gradually increasing weakness in his left arm and sought treatment from his family physician. Mark tried muscle ointments, massage, acupuncture and strength training exercises for what was initially thought to be a pinched nerve. Blood tests and x-rays yielded few clues; yet the strength in his left arm continued to deteriorate. Finally, when the muscles in his left arm and shoulder began to visibly atrophy, Mark was referred to a local neurologist for further testing. The initial neurologist ordered an MRI and performed a typical neurological exam. This doctor suspected ALS might be a possible diagnosis, so Mark was referred to another neurologist who was an ALS specialist at UC Davis Medical Center in Sacramento, California.
After undergoing a whole battery of electrical tests to rule out other diseases, Mark was called back in to the ALS Clinic at UC Davis on December 14, 2015 and definitively told 'You have ALS'. Unfortunately, his wife could not be there with him for that appointment as she was at Stanford Hospital with their son, Chad, who was finally released to drive on his own after recovering from a “life & limb” threatening infection that resulted from a severe ankle injury. Chad had endured many operations over a two-year period to get to this point. So, on the day Mark was officially diagnosed with ALS, Mark chose to focus on the gratitude he felt for his son’s long hoped-for health milestone rather than his own grim diagnosis.
Help is available
As the reality of the ALS diagnosis settled in, Mark and his family became acutely aware that there was no cure for this debilitating disease. As an entrepreneur, Mark was used to solving business problems, but there was no solution to this crisis. He began to feel powerless, tense, uncertain and thoroughly drained of energy.
Fortunately, Mark has supportive family members and friends who both kept his spirits up and researched treatment options while he coped with the fall-out. He began attending the respected Forbes Norris ALS Research & Treatment Center in San Francisco (which provided him the added benefit of visiting his Bay Area based sons on clinic days). And, two old college buddies had the savvy to set up a special consultation with a renowned ALS neurologist at Massachusetts General Hospital. She told him about two medications that could help slow down the progression of the disease and advised him to begin treatment as soon as possible. While these medications were not yet available in the US, she was able to connect Mark with a team in Amsterdam who had helped other patients access elsewhere-approved medications, everyone.org.
Treatment options are limited in the ALS world, and timely access to new medications is a continual challenge. So, Mark was elated to learn of a medication source that also provided him much needed hope under otherwise hopeless circumstances. Mark, ever the businessman, finally had a tangible way of confronting this debilitating disease.
Ordering his medications from everyone.org has been a smooth process, and Mark is extremely happy with their support network. In fact, during his interview with Sjaak, Mark said: 'I think you and your team don’t realise how important the work that you do is—not just getting the medication that I need urgently but also by just being there, providing an option to fight the disease and creating hope for people like me.'
Mark and Dee spent an afternoon sharing their ALS journey with Sjaak. Their son, Chad (who had overcome his own health battle and is now working as an inspiring life coach), happened to be visiting that day. At mealtime, Mark began having difficulty gripping his fork and keeping his hand steady. Chad instinctively reached over to guide the fork to Mark’s mouth, joked around with a smile, and gently teased his father about the role reversal. Mark smiled with a sparkle in his eye, fully enjoying the humour and love that surrounded him. As the meal went on Mark needed more and more assistance, but the cheerful mood of the evening continued on as if nothing was out of the ordinary.
The undefeatable spirit of Mark, Dee and their two sons is exceptional. They face life’s challenges with a sense of humour, share their emotions freely, love their family and friends fiercely, and steadfastly focus on the positives. They actively draw upon all available resources to help slow down the progression of Mark’s disease. And, everyone.org is honored to provide at least a little hope in what is otherwise a very difficult journey.