We recently sat down with Dr. Deborah Miller of Cleveland Clinic’s Mellen Center for Multiple Sclerosis Treatment and Research to discuss parenting with MS. Here’s what she had to say:
Tell us about your role at the Mellen Center.
I am a master’s prepared social worker, which means that I have clinical experience working with individuals and families with MS. I also have a PhD in Health Services Research. I do a lot of work in developing measures that assess patients’ reactions to different interventions, as well as their responses to illness. I also develop interventions to help people better manage their MS. It’s been a wonderful combination of having the hands-on clinical experience to understand the issues people are experiencing and the ability to conduct research that will allow us to more systematically manage the issues that people with MS and their families commonly face...
Seven months ago, in the frigid pre-dawn hours of January 5th, two New York state police officers stood in our kitchen. They explained to my husband and me that our beloved, yet very troubled, son had taken his life, and at that moment I forgot I had MS.
Oh, there have been other times since being diagnosed in 1999 that I wasn’t aware of my condition, but it was always lurking, ready to once again take up too much of my thought. On that morning it was the furthest thing from my mind, and it stayed that way as our now family of three stumbled through the next few horrible weeks...
I was 7 years old when I was invited to attend my first father-daughter dance, a rite of passage for many young girls. I remember standing in our living room, twirling in the new dress we had bought, feeling like a princess. That’s when I was told we wouldn’t be able to attend. My young mind could not comprehend why my father, who was living with secondary progressive multiple sclerosis, could not take me to the dance. I wouldn’t hear the words “multiple sclerosis” for the first time until a year later as an eight-year-old standing in our family kitchen. To this day, tears fill my eyes as I picture the dance invitation and think about my own daughter attending her father-daughter dance. The only difference is that today I am keenly aware of the struggles of MS – as I too was diagnosed with MS just one month after my daughter’s birth.
My father’s symptoms began in 1978, but with the lack of MRIs or therapies for MS, he went undiagnosed until 1983. In the early 1990’s the first disease modifying therapy came onto the market, but the disease progressed quickly, and by 1996 he was using a wheelchair permanently. At the age of 19, just three years later, I experienced my first MS attack. Years later, neurologists found over 10 lesions on my brain and I too heard the words, “You have MS,” just like my dad had 43 years before me...
One of the hidden blessings of living with multiple sclerosis is how much more time I’m able to spend at home with my family. There are no long hours at the office nor cross-country business trips that keep me away for days or weeks at a time.
But within that good fortune is a difficult paradox to navigate: I’m here, but technically, I’m not always *really* here...
Everyone said it’d be easy. Cruising, that is. Ships are handicapped accessible, right? So in the fog following my primary progressive multiple sclerosis diagnosis, last winter, I called the travel agents at Expedia, eager to escape our snowy winter and icy sidewalks.
I’d cruised-toured just seven months earlier, a 40th birthday trip-of-a-lifetime to Alaska, and though I was undiagnosed, my PPMS had already taken most of the feeling from my legs. I clung to my friend Lindsay as we hiked, visited a sled-dog camp and went whitewater rafting on the Mendenhall River. Now, six months later, my disease had progressed even more, and I was using a walker and scooter to get around. Would cruising really be as easy as I thought? ...
Last week my husband and I went to Capitol Hill and spoke to more than 30 congressional members and staff who were gathered to learn more about a topic close to our hearts: pediatric MS. Together with the Director of Partners Pediatric MS Center and Associate Professor of Neurology at Harvard Medical School, Dr. Tanuja Chitnis, we helped shed light on a diagnosis that affects an estimated 8,000 to 10,000 children and adolescents, including our son Sean.
Sean's symptoms started when he was just 7 years old. He was dizzy, off balance, and had slurred speech. We took him to the emergency room, where – during the course of a weeklong stay in the intensive care unit – a battery of tests was performed and a diagnosis of Acute Disseminating Encephalomyelitis (ADEM) was made. I remember reading about ADEM and the mention of MS, but I never thought twice about it since we had heard that “kids don’t get MS.” ...
The night after your 7 month birthday, you and I were alone in the home. That evening, I would breastfeed you for the last time.
I sobbed, Naya. I desperately begged my body to file away and remember the feeling of feeding you, knowing inevitably I would forget how it felt the moment we were finished. And so I was mad. I was mad I had this disease. I was mad that I had to take these medicines. I was angry that the choice of when I was done feeding you was being ripped from me and no longer on our terms. Knowingly, you instantly pulled away from me and looked up at my face, perplexed. So I sat you up on my lap, each one of your tiny legs wrapped around my waist. And I spoke to you. Really spoke, for the first time in your life...
About 5% of people diagnosed with multiple sclerosis are under the age of 18, usually as teenagers (for clarification, MS is classified as “pediatric” if it occurs in a person younger than 18). As remembered by pretty much every adult, this is a challenging time for virtually everyone, emotionally, socially, mentally and physically. Throwing in a diagnosis of MS can only further complicate matters as a young person is trying to figure out who they are and who they are becoming.
This is a difficult time for parents, as well. For parents of healthy teens, this is a period of learning when to let go, when to be firm and when to compromise. Many teens question their every move, just as their parents question many of the parenting decisions that they make throughout each day. In a study done on parents’ experiences of pediatric MS presented in a session entitled “Parent experience of pediatric multiple sclerosis” at the 2014 Joint ACTRIMS-ECTRIMS Meeting, all of these same dynamics and feelings seem to play out, but in a much more intense way...
I was thrilled to be able to attend the teaching course on Pregnancy and MS during the 2014 Joint Meeting of the American and European Committee for Treatment and Research in Multiple Sclerosis.
I wanted to see if there was any new information – not for myself, since I do not plan to have any more children, but to see if things have progressed from “go ahead and try and we’ll see what happens.” When I conceived my twins 9 years ago, there were many fewer therapies available and some docs were still recommending that women with MS not have children. I figured that by now, there would be concrete recommendations and a flow chart to tell women exactly what they should do to make sure all things went smoothly...
As pretty much all of us who are no longer teenagers can remember, the teen years can be very rocky as young people transition from childhood to young adulthood. Adolescents are often overwhelmed trying to keep up with the regular duties of growing up. A diagnosis of MS forces them to make decisions and actions to adapt to and manage a disease that they will have the rest of their lives, as well as cope with symptoms that are often bizarre and can be debilitating.
Bibi Holge-Hazelton, a Danish nurse who cares for teenagers with chronic illnesses, gave a presentation at ECTRIMS 2013 on some of the considerations and challenges for teenagers living with MS.
One of the few studies on teenagers with MS found the main impacts that MS has among people of this age group include...
Although I do my best to function like a “normal person,” I know that my MS has an impact on the rest of my family. My husband often has to take on some of the household duties when I become fatigued or overwhelmed, and it can be very difficult for me to hold my own in a conversation after 8:00 pm.
What I worry about the most, though, is the effect that my MS has on my twins. I once heard a saying, “Parenting is the hardest job in the world if you are doing it right.” Sometimes it feels like “doing it right” is almost out of reach when one of the parents has MS. With an estimated 2.3 million people in the world living with MS, a disease typically diagnosed between the ages of 20 and 50, there are clearly millions of children who are in an MS-affected family.