Multiple sclerosis (MS) is a chronic disease that often strikes in the prime of life (ages 20-40), impacts nearly 1 million people in the U.S., and has no cure. Nearly 1 million people in the U.S., and 2.3 million people globally are living with MS. Napa resident Kevin Reid (46) was diagnosed with MS in 2002 when he was just 27 years old in the prime of his life. When he was diagnosed, Kevin knew very little about MS and had to learn how to operate day-to-day life in a wheelchair. But he did not let his MS stand in his way and he knew he had to take control of his health. Today, Kevin has become an active member of his MS community and co-founded CRUSH MS, a network of wineries dedicated to raising funds and awareness of MS. On behalf of a loved one with a recent MS diagnosis, we reached out to Kevin to find out more about crushing MS.
What has surprised you the most since being diagnosed?
I was surprised at how advocacy work became such a big part of my life. Since starting CRUSH MS, it has basically become my job. And while it does stem from unfortunate circumstances, it has become a good, positive part of my identity. There is a danger in doing that because you don’t want to let your disease define you, but I’ve truly found an incredible community that supports my MS journey in a big way.
What is the single best piece of advice that you have been given since being diagnosed?
Remember that you’re not alone in this. I’ve received that advice and I continue to give it to other people now as well. Remember to also treat yourself with kindness, and to listen to your body. Staying in tune with your body’s needs/signals is super important in navigating life with MS.
Is psychotherapy helpful in dealing with the diagnosis of MS and handling symptoms?
Definitely! I’m a big advocate of therapy regardless of what someone may be going through in life – It’s a great resource for understanding yourself better and reinforcing a healthy mindset. I’ve been engaged in psychotherapy on and off over the years and wish that I had been more consistent with it. I encourage everyone to explore talk therapy because I’ve personally found it to be super beneficial.
Out of all your symptoms, which specific one was/is the hardest for you to deal/cope with?
Losing my ability to drive was tough to grasp because it takes a toll on your independence and sense of self-sufficiency. When I temporarily went blind in my right eye in 2002, I had to come to terms with new limitations. It can be scary and overwhelming when things like that happen, which is another reason I recommend therapy because it can help to have someone to talk to about it all.
Over the years, have you developed new symptoms?
Much of the reality of living with MS is symptom management, so symptoms come and go over time. I experienced more new symptoms in the earlier years following my diagnosis, but the hope is that these don’t progress over time if you’re on good treatment. I’m thankful that being on Ocrevus has helped limit my disease progression.
Do you have any tips & tricks when it comes to energy preservation?
Let yourself rest when you need to rest. Fatigue is such a prevalent symptom with MS, so listen to your body and what it’s telling you it needs. It’s also important to remember that mental stress is a component of that as well; being able to quiet your mind is a big part of allowing yourself to fully rest, sometimes more so than the physical aspects.
Any thoughts on how to manage the inevitable feeling of being a burden on loved ones?
Above all, try to treat yourself with compassion. If you have someone that’s able to help you, then that’s amazing, but don’t be too hard on yourself. Steer yourself away from the thought that you are burdening others and utilize positive self-talk. Nobody wants to be a burden on someone else, but more importantly, you want to make sure you aren’t burdening yourself with negative thoughts and feelings about yourself.
What would you consider to be your greatest accomplishment since being diagnosed?
Being able to stay positive while dealing with something horrible is an accomplishment that I’m very proud of. I know that’s a bit cliche, but it truly is something that I give myself praise for because it makes a world of a difference to go through life with MS with a positive attitude. Being able to connect with people and build an uplifting community that focuses on exciting goals, like finding a cure, is a great feeling.
What do you believe is the biggest hurdle in the education of MS?
It can be a challenge for people to understand what MS truly is because it can manifest so differently from person to person. The hard part is defining what MS is to people who don’t have any experience with it. The big takeaways are making sure that people know it’s not fatal, that it’s very individualistic, and how common it is even if they’ve never heard of it. All those things are really helpful to know, especially for newly diagnosed people who are trying to understand what their experience may look like.
What are you most excited about in your continued efforts to help find a cure for MS?
I truly feel like we are just around the corner from figuring out a cure and that is incredibly exciting. I would love to be able to walk again and my neurologist and I discuss how that may soon be a possibility. I’m grateful for the money that we’ve been able to donate through CRUSH MS to people who are making progress in finding a cure, including a study at Stanford we’ve helped fund. I’m excited that we’ve really been able to hone in on where we can put our donations to do the most good.