Figuring out ‘the tools in my toolbox’ to live with MS

In hindsight, Barry Lynn can spot the warning signs going back at least seven years before his diagnosis.

The time his vision cut out as he drove along the highway. The time at work his legs were suddenly so weak that he had to take the day off.

Then there was the time in 2015 when he left the grocery store with a cartful of food without paying. His wife took him to the emergency department, and the diagnosis was eventually delivered: primary progressive multiple sclerosis. The disease attacks the central nervous system, causing worsening cognitive and physical limitations. Barry was devastated.

Now, nearly eight years later, the 46-year-old dad receives infusions every six months to help manage the disease and is anticipating empty-nest life with his wife, Jamie, whose mother also lives with MS.

“I’m figuring out the tools in my toolbox,” Barry says. “And Jamie helps me realize I have it pretty damn good.”

What have been the most significant challenges of living with multiple sclerosis?

My right side is not as strong as it used to be, and the biggest hindrance I have is the handicap on my right leg, so I don’t drive anymore. That was the hardest part. I can drop stuff — that’s difficult, and I don’t play guitar as much as I used to.

And a lot of distractions, being overwhelmed or having too much going on, can just confuse my brain — burn it out.

I was a construction manager, an assistant superintendent and then a construction superintendent and facility manager. A lot of my jobs were all over Columbus and central Ohio and even down into Washington Court House. Now, I’m on disability at home, unless I’m out on my scooter or with my wife and my kids. But the dogs love it because I’m home all the time.

I ride my scooter to the library or a nearby shopping center, to the bakery, grocery store or other shops, and I use COTA Mainstream bus services to go for MS treatment.

What lifestyle changes have you made to manage symptoms?

Heat is my kryptonite. So, if it’s going to be warm, I carry a cooler bag with ice packs I can put on my wrists and neck. When it gets really hot, I use a vest that has slips for ice packs all the way around. I absolutely have to wear it in the summer because the heat literally cripples me, and once it sets in, it’s hard. We plan ahead for vacations and concerts and if we’re going to things like the fireworks to make sure we have enough ice.

My wife has been beyond supportive, and so has the family.

Why would you recommend Ohio State for multiple sclerosis treatment?

They’re specialized. And the collaboration between doctors makes a big difference, because they have the knowledge to refer me to the right experts. And it’s a learning hospital. It’s nice to have that new information, new techniques, new medicine and the availability of the latest, the greatest and the most innovative treatments.

What advice would you give to someone newly diagnosed with multiple sclerosis?

Be prepared for physical change, not necessarily the way you look, but the way your body reacts. Because physically you’ll look great. It’s one of the hidden diseases — a silent disease. And love your family so much.