Satu Salonen

Age: 55
Country: Finland
Occupation: former company director, then pensioner and now author

My name is Satu Salonen and I live in Finland. I am married with two grown-up daughters. After my diagnosis with MS in 1999, I stopped work and received a disability pension at the age of 48. This felt terrible because I had enjoyed my work, which was both interesting and challenging. My husband and I had built an international company called Esmerk and, by that time, we had offices in 13 countries on three continents. My work involved liaising with our clients, providing specialist services in information management as well as buying specialist services from auditors, corporate lawyers, and management consultants. This experience came in very handy when I began building working relationships with doctors and the healthcare system!

The first five years with my diagnosis were a nightmare. I relapsed 5-6 times a year, hardly recovering from the previous relapse when another would start. Interferon–beta (Rebif 22) only made things worse, and I was more than relieved when my neurologist suggested taking a break from medication. Treatment for acute relapses was i.v. prednisone, which I had to give up in 2005 because of unmanageable side effects. In June this year I had my severest relapse of this millennium, and needed a wheelchair. My neurologist decided to try i.v. immunoglobulin, and it worked – walking has not been this easy for years.

Since 2003 I have only had two relapses a year, which has made life more stable. The most difficult symptom for me has been the cognitive impairment. Several neuropsychological tests have shown which parts of my brain work and which do not. Fortunately I have always been interested in neurosciences and started finding out more. Knowing more about brains has helped me cope with the embarrassment and to focus on things that give satisfaction and joy. The MSIF research news is also valuable reading.

As a little girl my dream was to be an author, I enjoy writing and have a sense of humour. Last year I put together everything I had learnt about coping with your brain, mind and body (with any illness) into a book which was published by the Finnish Medical Society. I was their first layman writer (the others have all been doctors) and reviews have been very good. The book is called “Sairaan hyvä potilas” which might translate as “Deadly good patient”. Without MS, my dream to be a writer would not have come true!

After diagnosis I started thinking about a living will. Together with my solicitor and neurologist we drafted a detailed living will to make sure that in the final stages, my life would not be unnecessarily prolonged and the decision to refuse treatment would be made by my trusted doctors, not my family. I think it is very important to discuss what you would like with your family too early rather than too late. A carefully drafted living will help to alleviate some of your fears.

Another tip I have included in my book is having a good working relationship with your doctor, which I believe is essential. The patient has to do his or her part as well. Your neurologist is your trusted advisor, with whom you can discuss all the aspects of your treatment protocol, but he or she remains in charge.

If one has to have MS, Finland is possibly one of the best places in the world to have it. Finns pay high income tax, but that enables the government to pay for medication, rehabilitation, and disability benefits. It also refunds part of the doctor’s fees if you go to a private clinic. Unlike in some countries, you do not have to be rich to have a lasting patient-neurologist relationship.