Help Justin Battle Advanced Multiple Sclerosis

I first met Justin in 2001. He was quiet, handsome…a friend of friends who sort of hung in the background, tall and broad shouldered, and with a smile that was absolutely devastating. Over time we became close. But still just friends. Until 2002, when a kiss changed everything and there was no going back. We were in love.

It was a year later, in 2003, at the age of 23, that Justin felt a change in his left eye. A doctor visit later, we learned it was optic neuritis, which led to a heartbreaking diagnosis of Multiple Sclerosis. MS is a progressive auto-immune disease that eats away at the myelin sheath that protects the nerves, leading to disability. It is a brutal diagnosis and there is no cure. And it affects people differently.

For Justin, 21 years later, at the age of 44, he has gone from Relapsing-Remitting MS to advanced Secondary Progressive MS, and is rated with a score of 8.5 on the Expanded Disability Status Scale. Justin spends his life in a wheelchair, while I am his caregiver, helping him 24/7. Over time, his symptoms have come to include extreme fatigue, clonus (shaking of the legs), partial use of his left hand and arm, little to no use of his legs, severe nerve pain, numbness in the limbs, dysphagia (trouble swallowing), nystagmus (shaking of the eyes), spasticity (not able to move limbs—like a rubber band gone stiff), atrophy in both eyes making him legally blind (though still some limited vision), vertigo, slurred speech at times, depression, and a fall resulting in a broken hip. There’s more I can add, but we’ll leave it at that.

Justin’s current therapy is an annual infusion of Rituxan (a chemotherapy drug) and some daily meds to help manage the symptoms. But there is no curing anything, and no stopping the progression. And since Justin is beyond the inflammation stage—where stem-cell therapy may have once been an option, had it been more available back then—the damage is considered permanent. The best we can do is hope for a medical breakthrough.

For Justin, his times of playing video games and building 3-D models, and having a dream to be a video game designer, are gone. Instead, he watches movies and YouTube videos, listens to audiobooks, fiddles around on his computer…rests.

Through it all, we’ve done what we can to live our best lives. And while we have plenty to be grateful for, we struggle financially, as many do when living with severe disability. Family does what they can to help, but with Justin on limited Disability income, and me his full-time caregiver who moonlights as a part-time indie author, just paying the bills is a major challenge. A while ago, a friend suggested doing a GoFundMe page, but we were uncomfortable with the idea and have put it off for years. But our struggles, both physically and financially, have progressed along with the disease, so here we are, humbly asking for help.

For those of you who are willing and have the resources to contribute in any way, it would be with deep appreciation in our hearts that we would accept your kindness. Our starting goal is to raise $8,000 to help cover the balance on our wheelchair van, backed up medical bills and things we’ve had to put on credit just to get by. But anything close to that would be a miracle and any amount is appreciated.

So there it is.

Thank you for reading.

Thank you for letting me share Justin’s story, which I hope you will consider sharing with others.

And thank you for your time.

From the bottom of our hearts, we wish you health, happiness, and most of all, love.