Ray Charpentier's Story

What were the steps leading up to your diagnosis?

I had numbness in hands, my balance was off, and my feet went numb. I went for an MRI of my brain that showed no visible lesions. So the spinal tap was next, which showed indications of multiple sclerosis (MS).

After five years of "you may you have MS" from doctors, I requested MRIs of my spine. Sure enough, my first visible MS lesions were in my spine, so I got a diagnosis of MS in 2008.

I have experienced double vision and MS-related fatigue, but have never experienced a severe exacerbation.

What lifestyle changes have you needed to make?

I've had to slow down and focus on my health. I follow a Paleo diet and eliminated dairy. I was introduced to the Paleo diet by Dr. George Jelinek from Australia, who also has MS.

I exercise every day by walking in the pool for a quarter mile, three times per week. I have a recumbent trike that I ride in MS Bike events. As I get stronger, my MS is getting quieter.

This weekend, I am running in my forth MS Muckfest, all while holding hands with one of my MS nurses. I make sure that I rest after all these activities.

Who has been there for you? How?

My wife, Janet, is my care partner. She keeps an eye on me. For example, if I'm not walking right, she asks if I have my balance vest on. She helps me not forget things and understands that my brain doesn't always work like a normal person's. If I try to blame something on MS, she'll call me out on it. She even married me after I was diagnosed and not doing so well.

We don't take anything for granted, and we laugh a lot and try to enjoy life every day. My wife has also helped me run MS-GO which is a tremendous amount of work.

MS is the worst, yet best thing that has ever happened to me. If not for MS, I would not be friends with some of the most incredible people. The MS community has been there for me.

What accomplishment are you proud of?

I founded the MS-GO event calendar which lists every MS-related event, support group, and activity in the United States. Subscribers get a free weekly email containing the events in their state. It is also set up so someone can add an event for free.

We do not sell anything, sell or share anyone's e-mail address so nobody will get spam from us. Our mission is to help people with MS.

What's your advice to someone else living with multiple sclerosis?

You need three things before medication.

The first is a positive mindset. I was once told that "your worst day is equal to someone else's best day." Find something that you can embrace yourself in and focus on that.

The second thing is a healthy diet that works for you.

The third thing is daily exercise. What that entails is up to you. It can be going to the gym daily, like me or just stretching before you get out of bed. Lifting a can of soup while watching television is exercise. They say move it or lose it – so move your muscles every day!

After you figure out these three things specific to you, you need to find a disease-modifying therapy that works for you. There are now fifteen choices that are injections, infusions or pills. Find one that works for you.

Is there anything else we should know?

In 2019, I am embarking on a national awareness and sign the bus tour across the United States for one year.

If you are a person with MS, a care partner or MS professional, you're going to sign the bus! My goal is to have over 250,000 signatures.

We are now raising funds and are looking for sponsors for the tour.