Peter, tell us about your family
I live in Oslo, Norway, with my wife Hege and our daughter Elisabeth (17) who is at high school. We have two sons Carsten (24) and Erik (23) who are studying away from home, but join us for holidays. I am now retired and enjoy the free time it gives. However, it is quite evident to myself and the children that my Hege carries the burden of support in our family.

Peter, when were you diagnosed with MS?
I had my first neurological incident in 1964, when I was 11. Then in 1975 I experienced double vision and was diagnosed with MS by the doctor, but they did not tell me. The ethic was to “protect” young people from such things. I was 22 at that time and feel I had a right to know.

Five years later, when I was married with small children and living in the US, the symptoms of MS became more apparent. When we were on a family holiday in Norway, I contacted the doctor who had dealt with my case in 1975 and asked for more details. They then said I had a “demyelinating” condition. Afterwards I went for a walk with Hege and we realised that things were more serious than we had previously thought. She told me “it doesn’t change anything”. I then went back to the US ahead of the family and found out as much as I could about MS. I felt very alone at this time.

Later, as we began to understand the seriousness of the illness, I remember Hege saying: "I am your wife and will always continue to be that, but I will never be your nurse". When I have told medical personnel that, they all say "and that's the way it should be”.

Over the years most of the symptoms from when I was a child have reappeared. I also have a number of new symptoms, and must use a wheelchair sometimes or crutches to walk.

Hege, how have you balanced work and caring for a family?
When the children were young I did not work, I was a full-time mum and enjoyed being so active in family life. As Peter’s MS progressed that job grew. However, now that the boys have left home I work at a Montessori school.

Hege, what was it like bringing up children with MS in the family?
The boys cannot remember that their dad was able to walk and do things without support. However, we have a video that shows Peter pushing them on the swing in the garden without support of a cane or crutches. Elisabeth has never seen such things, but she vividly remembers how she reacted when I first told her why her father had difficulties in participating in many of her school activities. For many years I had to double up in terms of getting involved in school and sports activities. I wanted the children to be as unrestrained and as normally functioning as possible. I always felt that they should not have to sacrifice and miss out things because of their father’s illness.

Peter, how did you tell the children about your MS?
It was a story that came out little by little. We never sat down for a “talk”, but answered questions as and when they came up. We had no specific programme to educate them about MS. They saw the difficulties and we worked out ways to get by together.

Carsten and Erik, how did your father’s MS affect your childhood?
When we were at school, we were all keen cross country skiers. Mom was always the one driving to and from events and watching competitions. For a long time many of the other parents thought Mom was a single parent since Dad was not at these events.

Elisabeth, what happened when you were told about your dad’s MS?
One day at school, soon after being told about my dad’s MS, I quite suddenly burst into tears and cried for a long time. Nobody in my class could understand what was the matter, and I had to explain that I was sad because my dad was ill and that he would never get well. One day I learned that there was another girl in my class whose mother had MS. We formed a club where we tried to gather as much information as we could about MS. It really helped to have someone I knew who I could talk to.

Carsten, Erik and Elisabeth, what do you think the future holds for your family?
We are all comfortable with Dad’s condition now, and aware that it may get worse. Mom and Dad always try to say that the development so far has been extremely slow and will hopefully continue to be slow. We choose to be optimistic, but we all know that there are no guarantees.

Peter, tell us about your family’s summers on the island Vasskalven.
Each year our family spends the summer at our house on the island Vasskalven, about 130 kms south of Oslo. It is a magical place, but has no regular electricity or running water and all transport is by boat. Reading light is produced by solar panels and drinking water is collected from a neighbouring island. I swim each day for exercise. The water temperature ranges from 18-22°C in the summer and it is quite remarkable for cooling my central nervous system – I never feel better than after a good swim in the Oslo fjord. We have built a hand bar system on the jetty so I can get in and out of the water on my own. However, getting into and out of a boat requires a bit of assistance from Hege or one of the children.

I can easily see that a more luxurious life would be easier for us all, but as long we’re all willing to do what it takes, we’re all happy spending summers at Vasskalven.

Peter, Hege, Carsten, Erik and Elisabeth, thank you for sharing your story with us.