Children and parents living with MS

Title: Children and Parents Living with MS (in Persian)

Authors: Dr Bahman Bahmani and Dr Shadi Nowruzali

Publisher: Danjeh

Many people with chronic and hard-to-treat illnesses need ongoing care. Multiple sclerosis, or MS, is a disabling disease that affects the brain and spinal cord. Caring for someone with MS and dealing with their problems can in many situations be hard and exhausting. This book draws on the experiences of a number of adolescents and young adults whose parents have had the disease, and looks at the problems and issues they may face after a parent falls ill.
The book has four chapters:

– Chapter one gives a brief introduction to the disease.

– Chapter two discusses how the illness affects children’s lives.

– Chapter three offers suggestions for managing the problems better.

– Chapter four is a word to parents living with MS.

We hope that reading it can be a step, however small, towards helping people adjust to the consequences of a parent’s MS.

Extracts from the book:

Children are far less fragile than you think, and far more able than we imagine to accept painful realities.

Parents often try to protect children from psychological harm by hiding painful matters from them. At first this may seem to bring the family peace, but in the long run it can hurt them. Honest, open communication between family members is valuable and important, and builds trust over time.

… It was a three-day public holiday and our secondary-school exams were over. We had planned to go away for the three days. The night before, we put our luggage in the car, and late that night my father went to fill up the tank so we wouldn’t be held up the next day. We got up early to set off after morning prayers and beat the traffic — and found that my father had lost his balance and couldn’t walk. He had had MS for five years, and every so often his symptoms flared up, but for about six months he had been well, with no problems. The trip was cancelled and we spent the three days at home…

We had felt intense anxiety and fear before, when we first heard that my father had MS. But this time — my father’s anxious silence, my mother’s eyes full of fear, and each of us children trying artificially to make things look normal — I will never forget. It seemed we all wanted to make things better.