by Melinda Lang, Rph, Upstate NY CMT facilitator
Amy’s mother worried something was wrong with her when she was just 3 years old. “My mother said I began throwing my right leg out when I was 3. My right leg would go out from under me, and my gait was off,” said Amy. Amy’s parents took her to the local hospital in Albany, NY to be evaluated. However, it wasn’t until after she began showing more symptoms, like frequently spraining her ankles, that her family traveled to Child’s Hospital in Boston, where she was diagnosed with Charcot-Marie-Tooth disease (CMT) at age 7.
At first her family wondered if her symptoms may have come from the polio shots she received at the local Town Hall. However, her brother was given the same vaccine and did not show any symptoms.
Although CMT is primarily hereditary, Amy is the only member of her family diagnosed with CMT. She has three older sisters Pam, Debbie, and Kim, and two brothers, Ricky and Mark, who are all very supportive. Her younger brother, Ricky has shared an apartment with her for the last 6 years. Amy lights up when talking about her niece, Brooke and her Great niece, Ava.
Amy had to wear metal braces as a child, “with only one pair of shoes that fit,” and could not stand people staring at her. “I hate having CMT. I always wanted to be like everyone else. I would try to hide it when I was younger. I wish I could be normal for a day. It took me a long time to cope with my CMT.
It wasn’t until 1984 when we decided to go to Disney World, and I was not comfortable wearing jeans because it was so hot. So, I said to hell with it. I’m wearing shorts. I’m going to be comfortable.”
As she was being wheeled around worried about being handicapped, Amy realized, “I’m just like anyone else with similar problem in wheel chairs.” She no longer cared about people staring at her, “It was more important to be comfortable,” showing her leg braces.
Amy has enjoyed a long career, working for the New York State Tech Services Division. She has worked as a file clerk and sorting mail for the past 32 years. “Some of the files are too high to reach from my wheel chair, and I can’t reach the low files either because the chair’s too high.” She relies on a coworker to stop by to assist her with the out of reach files. She also needs a coworker to help her get out of the building during fire drills. “I have to go to the lobby and wait for someone to help me out”
She looks forward to retiring in four years. Although she worries a little after coworkers asked her “What will you do with your time when you retire? Won’t you be bored?” However, she has many hobbies to keep her busy. She enjoys reading, eating out, swimming, going to the movies, shopping, watching TV. She, also plans to keep busy by volunteering. Mostly, she is looking forward to sleeping late and not being woken up by the alarm.
Additionally, she enjoys traveling. On her most recent trip, for her fiftieth birthday, Amy wanted to go to Martha’s vineyard and Nantucket. However, “My sister said there’s not that much to do there.” So, they all had a great time in Atlantic City.
For two years, Amy participated in swim therapy at the Bone and Joint center. Then, “My sister noticed that the floor was wet and was afraid I might fall. The instructor agreed with her that the wet floor was dangerous for me.” At the same time, she was having more difficulty getting in and out of the pool. So, she took a break from pool therapy for a while. Then her physical therapy office opened a new pool, where she exercised until the lift broke. Because of the expense, the lift has not been replaced yet. However, Amy is continuing with her physical therapy. She also sees a nutritionist and a massage therapist.
Amy said she can never forget the day, Oct 4th, 2004, when at the age of 46, she was diagnosed with breast cancer. Radiation treatment followed, “The first treatment was on my birthday and my doctor wasn’t there. He went on vacation.” After her 9 months of radiation, her CMT worsened, and she needed to use a walker. The effects of chemotherapy and radiation seemed to intensify her CMT symptoms, although her neurologist indicated it may just be the normal progression of her disease.
After recuperating somewhat from radiation, she went on a cruise with her three sisters on the Caribbean Princess, wit stops in the Bahamas, Bermuda and St. Maarten. While on the cruise she exercised by walking down the ship’s hallways, which was just wide enough for her walker.
When Amy was 48, she fell in the bathroom with her walker, breaking her foot. So, she spent her 49 th birthday in the hospital rehabilitation facility, where a nurse said, “I’m surprised you’re still walking at your age with CMT.”
Then, four years ago, she needed to give up driving, and now relies on family to take her grocery shopping, and to her appointments. Her mother, sister and bother recently joined Amy at the Upstate NY CMT’s Awareness dinner. Her sisters also frequently attend support group meetings with her. “I missed some meetings I would have liked to have gone to but couldn’t. I like listening to someone else’s story for once.”
Amy said she always dreamed about having a husband. When she was in her twenties, she and her boyfriend, talked about what life might be like if they were to marry. She warned him, “If we get married, I want to wait four years before having children.”
Now, she wants people to know that she is “single and does not want to be.” She was insulted, when a coworker suggested, “You should look for men in wheel chairs to find a boyfriend.” Amy does not discriminate and would consider an able-bodied suitor.
- Guest Post for Medical Mystery: “Funny Name….Serious Disorder” (cmtnyus.wordpress.com)