More than 25 years into his journey with adrenomyeloneuropathy (AMN), Tim Mathwig has dealt with and adapted to physical, mental, and emotional challenges that accompany chronic health conditions.
Initially diagnosed at age 18, Tim didn’t experience the long diagnostic path that many young men with AMN do when symptoms first present. Tim was tested when he was pre-symptomatic following the identification of AMN in a family member who was injured playing football. For several years following his diagnosis, Tim remained healthy and symptom-free. He started experiencing symptoms, such as problems with his gait, around age 30. Even though he had been diagnosed with AMN earlier in his life, Tim and his doctors didn’t immediately connect his symptoms to AMN given the lack of information available at the time. He visited General Practitioners, Urologists, Endocrinologists, and Neurologists when he first started experiencing symptoms, before eventually realizing they could be attributed to AMN. “It’s the case with most doctors,” says Tim, “where I’m the only one that they’ve ever seen with AMN.”
As the disease progressed it was a struggle for Tim to cope with his frustration at not being able to do ‘easy’ tasks and he had a hard time talking about AMN. He acknowledges now that he felt ashamed of his inability to play sports with his sons and his persistent need for help with tasks that many think of as ordinary—like getting groceries or bringing things in from the car. “I feel like I missed out on doing a lot of activities with my kids,” he says.
For a long time, I hated to ask for help. Needing people to do things for me that I feel like I should be able to do myself is hard. I can ask for help now, but it took a long time, and getting to this point was difficult.
Over the years, Tim went from walking on his own, to using a cane, to using a scooter and occasionally a wheelchair. He and his wife moved into a one-story house to make getting around easier for him. Asking for help was necessary, but very difficult for Tim, who had always been independent and active.
Often he would get choked up talking about AMN but he credits his wife, Dawn, for explaining it to friends and family and for keeping him engaged in life. They take vacations, she encourages him to hunt, and they recently bought another boat. According to Tim, “she doesn’t let me sit around and get lazy.”
Now in his 40s, Tim struggles with intense leg pain daily. With his wife’s help, he tries to stay active but the pain makes it difficult.
“The neuropathy is a constant burning pain from my knees to my feet—I feel like I’m standing in hot lava,” he says, trying to describe the pain. “I’d be able to do so much more if there were a way to stand and move without such searing pain in my feet and legs.”
Tim currently takes hydrocortisone which is a must for his Addison’s disease, a common condition that occurs with AMN. He has tried a series of medicines to alleviate the muscle spasms and pain that keep him up at night, he stretches and does leg exercises to keep them strong and help his balance, and he self-catheterizes before sleeping or sitting for long periods to manage urinary incontinence associated with AMN.
Tim feels that education and resources have come a long way since he was first diagnosed at age 18. He encourages newly diagnosed people to do research and educate themselves on AMN and potential symptoms as well as get involved with a support group.
It can vary widely for everyone, so knowing what’s coming can help manage stress and anxiety.
The support Tim has from his loving wife, family, and his faith help give him the strength to stay positive and hopeful for the future.