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.
Every adolescent boy has a different answer to the age-old question, “What do you want to do with your life?”
But boys grow into men and some of their dreams, although never forgotten, adjust to new realities. I might impress my 6-year-old son with how far I can throw a football, but NFL material I am not (and never was). I’m not really a fan of Oreo cookies anymore and the idea of running my own pizza joint lost most of its luster many years ago.
Every mom wants to do the best she can to care for her kids and keep them safe from harm: We make sure our cars are equipped with proper safety equipment like anti-lock brakes and strap them lovingly into child seats and seatbelts to protect them in case of an accident. We make sure they are wearing a helmet when learning to ride a bike. At home, we hide the dangerous chemicals and put away the knives.But there are some things we can't prepare for, or protect our children from, such as devastating illnesses. Sometimes, our babies grow up safe and sound, and we still find ourselves taking care of them later in life. In that case, we want to ensure they are comfortable and looked after, and do our best to keep life as normal as possible when it might feel out of our control.