The last thing a parent ever wants to hear is that something is wrong with their child. That’s what happened to Kathy when her daughter Jaclyn was diagnosed with MS at the age of 10. Here, Kathy shares her thoughts on dealing with her daughter’s illness.Below: Jacyln, apple of her mother's eye.
Jaclyn’s symptoms included slurred speech, headaches, numbness in her face, her gait was off, she lost vision in her left eye, developed double vision and later, had difficulty with her motor skills. It was very upsetting to see a cute, smart 10- year-old look and feel so sick. Also it was so sudden!! She just woke up one day with an earache and headache.
One of the saddest parts of all of this was to see her on steroids, to see an 85-pound girl blow up from the affects of the medicine. Because of the steroids her bones weakened and she broke the T7 bone in her back. Now she had to wear a full cast body brace for three months. Her attitude was always so outstanding and bright. She continued to go to school, even though she was losing friends and kids were making fun of her appearance. She wanted to learn and be at school. She didn't like it when she had an endless number of doctor and hospital visits and stays.
We had decided not to go public with MS, only to notify close family and friends at the time. It was so overwhelming to us as the parents that we had to deal with this disease first. We needed to get enough information about it first. I researched all I could to better outstand this disease. The sad part is that MS in children is rare so that most information is on adults with the disease. Even the medicines are only tested on adults. We do not know the long-term effects the medicine will have on children, because they were never tested for them. Jaclyn felt the timing is right to go public with MS. She is older now and better understands the disease and she feels comfortable at 14 to talk to her friends now. She wants them to know about MS and she is no different than the other teenagers in her class. This disease has made her stronger and given her courage to fight for a cure for MS. She now wants to help Montel and the foundation bring awareness to the public that MS is affecting her and other children just like her and we need to help fight for a cure.
“We learned our marriage was stronger than the disease”—Len and Cheryl Chatman in The Art of Living With Multiple Sclerosis
MS stole Cheryl Chatman’s sight more than 15 years ago. One morning she could see; that same evening she could not. Unlike many of her peers, her agony with the unknown was brief. Within two weeks she had a conclusive diagnosis of MS, and the world she had become accustomed to seeing had vanished.
Cheryl was only 25 and a military wife when she was dealt this devastating blow. Len was in the Navy on deployment status and they had two small children. “I was stunned and scared. I thought I was going to end up on a telethon as one of Jerry’s kids. Then I asked the doctor if I was going to die. He just hung his head down,” Cheryl says quietly.
In one very low moment, she found herself wading in a sea of insecurities: “How will I raise my kids, will my husband jump ship and leave me?” Cheryl decided that “You cannot be pitiful and powerful at the same time.” With quiet determination, she chose to be powerful.
Len and their sons Len Jr. and Jarred are Cheryl’s chief cheerleaders. The young men began pitching in around the house from an early age, and credit their parents for setting a stellar example for family unity. .
Len and Cheryl, now full-time Marriage and Family Enrichment Specialists, have been traveling the country for the past seven years facilitating workshops called The Art of Living With Multiple Sclerosis. They have reached out to thousands of people around the country faced with MS’s many challenges. “This has been one of our highest highs, helping people on a national level manage MS,” Len says.
To bring their message of managing MS to those who are unable to attend the workshops, the Chatmans wrote the book The Art of Living With Multiple Sclerosis: Six Secrets for Managing MS as a Team, a must-read for families managing a chronic illness.
For more information about The Art of Living With Multiple Sclerosis, please visit www.alwms.org or contact Two Hearts Publishing Inc. at (904) 493-6493 in Jacksonville, Florida. The book is available for $15.95 in the U.S. and $18.87 in Canada.
Finding Your Strength in Weights
By Lisa Powell as told to Friends and Family
I was diagnosed with MS in 2001 after experiencing symptoms for over a year. It was like the room was spinning and I had to hold on to the wall to walk. Twice I was misdiagnosed with middle-ear infections and given antibiotics. When I lost the feeling in my hands and feet, I was misdiagnosed with nerve root infraction and given anti-inflammatories.
I eventually lost my sight, and was diagnosed with nystagmus. A neurologist confirmed that I had MS, and told me that if I had continued to be misdiagnosed for three more months, I would have ended up in a wheelchair. I didn’t work for months following this episode.
Once I started taking the right medications and my condition stabilized, I got a part- time job. But I still had balance problems and it was difficult getting around. I didn’t tell my coworkers at first. I wouldn’t even get up to go to the bathroom if people were around; I didn’t want them to see how I walked.
Then one day I heard Montel Williams say on the radio that strength training helped his MS. I kept asking my doctor about strength training, and because we keep the lines of communication open, he eventually okayed the workouts, but warned me to stay hydrated and to avoid overexertion. (My doctor answers all my questions, and if I feel strongly about something he disagrees with, we come up with a compromise, a safe way to do it.) He also gave me some of the best advice ever: Listen to your body.
But before I could get could begin exercising I was hospitalized with an exacerbation. When I was discharged the left side of my body was completely numb. My former boss called me at home and asked me to come back to work part-time. I explained to him that I had been working somewhere else part-time, that I had MS, and that I had just been hospitalized. He said, “Cut to the chase, can you make it or not?” My house was now in arrears and I needed the money. I said, “As soon as I can walk I will call you!”
Despite the numb patches on my body, I went back to both jobs. As it turns out, a new coworker had just become a licensed personal trainer, and when he found out that I wanted to train, he offered to work with me for free. He didn’t know anything about MS, but he researched the illness thoroughly to prepare for me.
I almost didn’t go back after my first day of training. My parents raised me that I could do anything I put my mind to, but this was the first time that I ever thought that no matter how much I wanted something, it was too hard. Sometimes the trainer would send me home, or he would restrict my workout because I was just too weak or off balance.
Strength training helped alleviate the horrible feeling that my muscles were falling apart. I began to feel strong and my muscles started to take shape. After six months the trainer said “I’m proud of you, you’re getting stronger, you don’t need me anymore.” Now I work out on my own.
One day when I was leaving the gym, I met Darin Kaye [a member of the Foundation’s development committee]. He saw me training hard and recommended Montel’s books, Body Change and Climbing Higher.
When I read Climbing Higher I realized that the excruciating foot pain I had experienced is related to MS. As a former dancer, I have performed with a broken bone in my foot, so I did not even think of mentioning the pain to my neurologist. Calf exercises help my feet, much, I imagine, as snowboarding helps Montel.
Strength training has also improved my balance. I would trip over my feet or gravitate to one side of my body. It can be very difficult to center myself sometimes, but if I stand on something unstable like a balance ball, and do weights, it centers me almost instantly. I train 5 days a week, 2 1/2 hours a day before work. It takes a lot of effort, but if I cut something out of my routine, I feel it.
Medicines can help manage MS, but for how long? Since beginning strength training I have not missed a day of work. I had an episode with spasticity in one arm and balance a few months ago. I calmed down, breathed, relaxed, and accepted it. In the morning I was weaker, but I went to the gym and worked out.
You have to decide what works for you, and if that is strength training, parks departments have free gyms if you can’t afford club membership, or you can buy affordable free weights from sporting or discount stores. At the end of the day your health is your best personal investment.