Patty Johnson of Tupelo doesn’t let multiple sclerosis keep her out of the hunt. “I feel I best manage my MS by not letting it get to me,” said Johnson, who was diagnosed with MS in 2007. The 52-year-old has continued to deer hunt with her husband, Larry, and daughters Allison, 22, and Claire, 20, and to work as a mortgage loan officer.
“I just don’t quit,” Johnson said. “I have children to finish raising, a husband and a job.”
Johnson and other MS advocates are inviting the Northeast Mississippi community to help improve the lives of people fighting MS. On April 2, Walk MS, benefiting the National Multiple Sclerosis Society, will start at 9 a.m. at Ballard Park in Tupelo.
Multiple sclerosis is an unpredictable autoimmune disease that varies greatly in symptoms, severity and progression. There is no cure, but new developments in medications are helping many slow the progression of the disease.
The Walk MS event will help fund local client services to meet the needs of those living with MS and help fund research. The services the society offers include education programs and publications, referrals to health professionals, financial assistance, home modifications, support groups like those in Tupelo and Oxford, and equipment assistance programs.
“The MS support group is helpful,” Johnson said. “We want to encourage other people to come.”
Most people associate MS with wheelchairs, but that isn’t the whole picture.
“Well, you don’t look like you have MS,” Johnson said people will sometimes tell her. But people with MS look like everyone else.
Johnson follows her doctors orders, takes her medicine and a number of precautions, but there are no guarantees her MS will continue to cooperate.
“It’s very unpredictable,” Johnson said.
Multiple sclerosis is an autoimmune disorder where the body’s immune system attacks the myelin sheath that protects nerve cells. The sheaths function in the same way the rubber casing of an electrical cord protects the wiring inside.
At the points where the myelin sheath is degraded – called lesions – the body can’t send messages as
efficiently. In some cases, the loss of the sheath can result in an electrical short, where the message doesn’t go through at all.
Although the underlying condition is the same, people with MS have different symptoms and severity depending on where the lesions occur.
There have been tremendous gains in treating MS, said Tupelo neurologist Dr. Rhodemarie Maron.
One of the newest agents is Tysabri, a monoclonal antibody, given by infusions.
It’s designed to hamper movement of the potentially damaging immune cells from the bloodstream, across the ‘blood-brain barrier’ into the brain and spinal cord, Maron said.
Traditionally, MS has been treated using injections and intravenous infusions. In September, a new oral medication, Gilenya, was approved by the FDA. It is part of a new class of drugs that targets a type of white blood cells – lymphocytes – and keeps them in the lymph nodes, preventing them from crossing into the central nervous system.
“The thought is that the lymphocytes … cause damage to the myelin,” Maron said.
Researchers believe one possible cause for MS is that lymphocytes mistake the myelin for a virus the person was previously exposed to, Maron said.
Organizations like the National MS Society are very important in promoting research into new medications and resources for people fighting MS.
In addition, physicians are more aggressively treating symptoms like depression, cognitive slowing and fatigue that were traditionally recognized as associated with MS.
For Johnson, MS came with the holidays in 2007.
“At the Christmas parade, my feet went numb and stayed numb,” Johnson said.
The following Monday morning, she went to her family doctor who, after conducting some blood tests, sent her for an MRI because she suspected a neurological cause for the symptoms.
“Because of her aggressiveness, I knew by Thursday,” Johnson said. “I was scared to death when I learned what was happening.”
A stay in the hospital put her symptoms into remission.
“I was very fortunate I was diagnosed very quickly,” Johnson said
Johnson has a battery of blood tests twice a year to monitor the disease and watch for side effects of the medications. She has an MRI once a year to check the progression of the disease.
“I’ve only had one more lesion in four years,” Johnson said. “… But that could change.”
Johnson hasn’t let MS keep her from the things she loves – hunting and nature photography.
“I enjoy deer hunting the most, not just for the hunting, but for being out in nature,” Johnson said. “We enjoy it as a family.”
The trick to hunting with or without MS is to pack well for the day. She makes sure she has the hunting necessities – license and ammo – along with snacks, her camera, puzzle books and cellphone to make the outing enjoyable.
She has made changes to work around the MS.
“I gave up the tree-climbing stand,” said Johnson, who now typically uses a ground tent.
She also focuses on the outdoor hobbies during the cooler months and has taken up new hobbies, like flower arranging, for the summer. She had to let go of things like horseback riding and water-skiing.
“When I get hot, I feel weak, especially in the legs,” Johnson said. Heat sensitivity is a common denominator among people with MS.
She has restructured other things she loves to do like fishing, swimming and yard work.
“I avoid the heat of the day,” Johnson said.
She dons a cooling vest when she’s out doing yard work.
“I wish I had one 30 years ago,” Johnson said.
She plays games and puzzles to keep her mind well exercised.
This summer, she’s planning on delving into the art of making T-shirt quilts.
“It’s my first big sewing project,” Johnson said.
Through it all, she works hardest to stay positive.
“My attitude is the best medicine I could have,” she said.
– What: Walk MS, a 3-mile walk benefiting the National Multiple Sclerosis Society
– When: 9 a.m. April 2
– Where: Ballard Park in Tupelo
– Registration: 8 a.m. the day of the walk; donation of $25 is suggested
– Extra: The three-mile walk includes door prizes and snacks. Walker who raise $100 or more will receive a T-shirt.
– Volunteers: The local group of organizers needs volunteers to help them put on the event. To participate
or volunteer, visit www.walkmsmississippi.org or contact Angie Jackson at (601) 856-5831 or
– MS is a chronic, unpredictable neurological disease that affects the central nervous system.
– Different people are likely to experience very different symptoms.
– MS is not contagious and is not directly inherited.
– Most people with MS have a normal or near-normal life expectancy.
– The majority of people with MS do not become severely disabled.
– There are now FDA-approved medications that have been shown to reduce the number of
relapses and “modify” or slow down the underlying course of MS.
Source: National Multiple Sclerosis Society
Michaela Gibson Morris/NEMS Daily Journal