My name is Melissa (aka Dish, Mrs. Dish, Mama Dish), and I'm a 50-year-old, recent widow, mother to 3 college-aged kids, and MS warrior for nearly 30 years. And, no, this is not my dating profile.
I have been in the MS world my entire life. I was a daughter of MS, caregiver, and at just 22, a patient as well. Having lived through my mother's MS journey and ultimate passing at the too-young age of 63, I was determined to do MS differently. From day one, I have been proactive, keeping up with research, pursuing clinical trials, meeting regularly with my team of doctors and specialists. The last 7+ years, I have made an especially concerted effort to maintain my function by religiously participating in neurological and physical therapy weekly. And, it's worked. Between regular PT, diet, and a steady dose of 12 medicines costing insurance $20k per month, I've managed to stave off another major relapse for over 10 years. No small feat.
Up until now, my most significant disability has affected the right side of my body. Foot drop, hypertonicity, spasticity, making walking more and more challenging, and I'm now reliant on a cane, walker, and transport chair to get along outside of the confines of my home. With my husband passing and our children growing up and out of the house, I am in search of new ways to boost my independence. As many of you know, my foray with a mobility scooter was a big bust (literally busted my head open on my first ride in March). There must be another way. And, there is.
With 2022 being a year of healing from loss and injury, 2023 is the year of ME. The Year of the Reboot. (Get it? Year of the Rabbit? Reboot? Uma? Oprah?)
This July, I am headed to Mexico and completely REBOOTING my immune system by method of HSCT.
HSCT or aHSCT stands for hematopoietic stem cell transplantation. It is a chemotherapy-based treatment where various drugs destroy the defective blood and immune cells in your system that caused the disease. The “a” stands for autologous, meaning “of the self”. The cells involved in HSCT used for MS come from your own bone marrow, through the blood, not from another source or donor.
HSCT is a treatment for autoimmune diseases such as Multiple Sclerosis that has proven to halt the disease progression. The aim of the entire HSCT treatment process is to stop the immune system from causing damage of the myelin so that proper electrical conduction within the nervous system is restored. In addition to the halting of the underlying autoimmune disease, the reinstatement of appropriate healthy signaling from nerves to muscles often results in clinical and symptomatic improvement. It's efficacy is much higher than that of the drug modifying therapies I have been working with until now. HSCT has a 70-80% success rate of halting progression. And of those with positive outcomes, 20-30% are seeing a REVERSAL of symptoms within 2 years. People come in a wheelchair and are eventually walking again!
"Why now?" you ask. Because, as much as I hate to admit, MS is at the forefront of my daily life. There isn't a moment when MS and my disabilities aren't factored into everything I do (or don't do which is often the case). The reality is I am a 6 on the MS disability scale (10 being death), and I feel like I'm one bad day away from 6.5, and a new lesion away from wiping out my left side which puts me at a whole new level of disability and quality of life (full-time wheelchair).
I'm not ready for that. I am only 50. I've been thrust into this new life, and forced to start over. This is my time to refresh. Reimagine. Reboot.
This comes at many costs. I have to go off my current medicine regimen starting April to wash out my system, with risk of relapse. I'll be sheering my head and donating my hair in June. I'll be isolated from family and friends for a whole month of July while undergoing treatment in Puebla, Mexico (thank goodness for Netflix and Zoom). And, none of this is covered by insurance, so I'm left to raise $65,000 to cover costs of medical treatment, caregiving, travel/accommodations, out-of-pocket pre- and post-op tests and procedures, with an inability to earn a living wage due to disability's restrictions and a strict SSDI wage cap.
This is intense. This is a lot. And, I couldn't even consider this without the love and support of my amazing community. Your generosity of spirit continues to lift me and my family up each day. Thank you for considering this cause and sharing with those you think can make a difference. You can donate to this GoFundMe or Venmo directly @Melissa-Disharoon. I'm also grateful to receive airline miles, gift cards for meal and grocery delivery, rides to appointments. I'm really leaning into this. I can't do this without you. Any additional funds raised will continue to support my family's living expenses as we navigate this new phase of our lives.
Thank you for your love and prayers. Please keep 'em coming.