Raising awareness, money for MS step by step
SHARPSBURG — Heidi Smith is in her 17th year of living with multiple sclerosis. But she remembers well the days leading up to her diagnosis.
The wife and mother of two from Hagerstown had lost peripheral vision in one eye. It had been that way for months before she couldn’t ignore it any longer. After she saw a doctor, it was another year before she was officially diagnosed in 2000.
“That’s what happens,” Smith said. “It comes and goes, so it’s hard. After three months, my side vision came back, then I saw three spots constantly in the same eye. They had to rule out other things. Then they did an MRI and saw lesions on my brain and said, ‘Oh. That’s multiple sclerosis.’”
At the time, Smith didn’t know much about the disease in which the immune system eats away at the protective covering of the nerves. The idea of living with MS as communicated by her doctor was discouraging.
“He told me, ‘In 10 years, this is going to happen and this is going to happen. And you are going to be in a wheelchair.’ I was determined that that was not going to be me,” she said.
Today, Smith, 55, experiences a lot of pain, especially in the evenings, as well as loss of sensation in her hands and other difficult symptoms. Still, she is thankful that she has mobility and lives a full and functional life. She attributes her success, she said, to God, her family and the support of other people with the disease.
Smith sought out others who were having experiences similar to hers and found connections through local MS support groups and at the annual MS Walk in Hagerstown.
This year’s Walk MS – Hagerstown 2017 is set to take place Saturday, April 22, at Antietam National Battlefield near Sharpsburg. Registration starts at 8 a.m. and the walk begins at 9 a.m. According to the National Multiple Sclerosis Society website at NationalMSSociety.org, last year’s event raised more than $86,000 to fund services and research about MS. Recommended treatments including physical therapy and medications that suppress the immune system can help with symptoms and slow progression, but the disease has no cure.
Smith found out about the MS Walk through a support group. The first year she participated in the event, she walked with her son, Colt Smith.
“Colt and I did the walk, then I wasn’t able to walk for about two days. I was so excited to walk, saying, ‘I am so excited! This is so much fun. This is great!’ We walked (many) miles then seriously, I could not walk for a couple days,” Smith said.
Smith went on to find other ways to participate in the event. Some years, she has served as a volunteer in a booth sponsored by a medication company that tries to provide education to the general public about how it feels to have MS.
“They have different centers. One has people put on mittens and try to do things to see what it feels like to have numb hands,” Smith said. “I think a lot of people were surprised. I think they didn’t realize how hard it was. A lot of young kids did it because one of their parents had MS. I think they were surprised thinking, ‘Wow. This is what my mom goes through. This is what my dad goes through.’”
Smith sometimes burns her fingers because she has lost sensation in them.
“I can’t feel the tips of my fingers. I will pick up things that are hot and I will blister because I didn’t know it was hot. I didn’t know that having pain is a good thing. It’s a weird world,” she said.
Smith also has experienced a phenomenon referred to as MS hugs.
“I had them for about three days. They are not good hugs. The best way I can describe them is that it almost feels like if you exhale as much as you can and then someone duct tapes you, wraps duct tape all around you,” she said.
She reached out to other friends with MS for help to withstand it. They told her how they tolerate the symptoms and about medications they have tried.
The MS Walk is a good place to get to know other people who have MS, and to share her experiences with people who do and do not have the condition, Smith said.
“I like helping people understand what it feels like to have multiple sclerosis,” she said. “I do like volunteering there. I also liked walking and getting to know other people that don’t go to the local groups.”
The mood of the event is fun, Smith said.
“They have pit stops along the way with apples and things like that. It’s a fun time with friends, to get out and do something that you don’t normally do,” she said. “You are out and you are excited and I think most people are there to have fun.”