MS in the Family

Multiple sclerosis is an unpredictable disease of the brain and spinal cord. Both children and adults are susceptible to MS, with the average age of diagnosis between 15 and 40. The course of MS can vary greatly but common symptoms include problems with vision, numbness, weakness, fatigue and loss of balance and coordination. The Multiple Sclerosis Society of Canada is a national health charity dedicated to being a leader in finding a cure for multiple sclerosis and enabling people affected by MS to enhance their quality of life.

Multiple sclerosis affects not just the person diagnosed with the disease, but the entire family. Dealing with an unpredictable chronic disease, the changes it can bring, its costs and the many choices to be made, puts a lot of stress on all family members. No two families are alike – they have different needs, emotional styles and ways to cope with the disease. However, they all have something in common: they try to make room for MS in the family without giving it more space than necessary.

Research, some of it carried out by the MS Society, shows that children cope and adjust relatively well when a parent has MS. However, all children regardless of their age have common concerns. They ask themselves whether their parent is going to be okay or if the parent will still be able to act as their primary caregiver.

Parents have their own feelings of anxiety and guilt. Because of such feelings, they may tend to underestimate the impact of MS on their children. They may be hesitant to provide information about MS to their children; they may not recognize the need for outside help for their children and/or the family.

From the pre-schooler to the teenager, discussions about MS should be adapted to the child’s age, individual concerns and needs. “Many children do not ask questions but still want information. They may have misconceptions and fears about MS, and want to know how it affects their parent and themselves,” said Dr. Brenda Banwell, director of the Pediatric MS Clinic at the Hospital for Sick Children in Toronto. “However, children can be overwhelmed by too much information and thus prefer to know less about the disease as a way to cope with it.”

It is important to know children’s usual fears and concerns at different ages and answer their questions in a simple and honest way. Educating children about MS as they grow up and mature is an important ongoing activity.

Through various programs and services, the MS Society continues to help families stay informed about multiple sclerosis, recognize and accept their feelings about the disease, and communicate comfortably with one another. Publications such as How to Talk About MS with Your Children and Don’t Lose Your Balance are two excellent resources for teenagers and parents.

The MS Society’s Growing Up Strong project is one example of a program targeted at supporting children of parents with MS. As part of this project, children from across Canada took part in educational and recreational programs offered by various chapters and divisions.

Families attended events where they met others living with MS. Students from schools in Edmonton, Calgary and Ottawa attended presentations about MS and living with a disability or chronic illness. These presentations helped students and teachers understand the challenges children face when a parent has MS. Three new websites — for children, teenagers and parents — were developed as part of this project: www.msforkids.com, www.msforteens.com  and www.msforparents.com.

For more information about the MS Society’s education sessions, fundraising events, resources or other activities, please call 1-800-268-7582 or visit www.mssociety.ca.

GROWING UP STRONG:
Support for children of parents with MS

* Talk to children about MS based on their age, needs and questions.
* Answer all questions in a simple and honest way.
* Adjust the information you provide to your child as s/he grows.
* Obtain support from the Multiple Sclerosis Society of Canada at 1-800- 268-7582, including
   publications such as How to Talk  About MS with Your Children, Don’t Lose Your Balance and My Mommy Has MS.
* Visit our family-friendly websites www.msforkids.com, www.msforteens.com and www.msforparents.com.
* MS is unpredictable and can change families’ lives: don’t be afraid to seek outside support.