I guess it is natural for all humans to wonder what will happen to them at the end. From the moment that we realize that we are mortal, our thoughts will occasionally drift into the realm of asking questions about how and when we will die.
Often these reflective moments are brought about when someone close to us dies or when we hear of someone close in age or with similar circumstances passing away. Many of us living with multiple sclerosis (MS) surely wondered about the impact of this disease on our longevity soon after our diagnosis and continue to think about it from time to time.
While some people do die from direct or indirect MS-related causes, the life expectancy of a person with MS is said to be “normal,” about 95% of the national average life expectancy of almost 80 years. In other words, people with MS die an average of 7 years earlier than people without MS. (However, it is important to realize that this number includes those rare people with very severe, quickly progressing MS and the impact on life expectancy for people with more typical MS is even lower).
Besides number of years that we will live, we want to know about quality of life as we age. Just like people without MS, this seems to vary greatly. We all know people (again, without MS) who are 80 years old and put in a whole day of running errands, gardening and cleaning, while there are plenty of people in their 60s who have a hard time navigating a shopping mall without sitting down to rest a couple of times. It is the same with MS – some of us will be able to do less as time goes by and some will be capable of much more.
When I was at the annual meeting of the European Committee for Treatment and Research in MS (ECTRIMS 2012) earlier this month, in the midst of over 900 posters presenting data and 7,000 researchers and neurologists discussing things in the hallways, I came across this little gem of a poster that I couldn't wait to share.
Presented by his friend of 60 years, this is the account of the life of a man who lived until 97 with MS. Although the man's name was never given, his history was outlined on the poster, along with pictures of him.
He was born in Hungary in 1910 and emigrated to France 1929. He was a resistance fighter in WWII and a prisoner of war, but he escaped in 1941.
His MS-related medical history started when he was 22, when he experienced double vision. He was misdiagnosed with mercury poisoning at age 32, when he had weakness of both arms and chest, symptoms that disappeared after three weeks. Although experiencing many symptoms over the years, he was finally diagnosed with MS in 1966. In 1971 he began using a wheelchair, which he did intermittently, but usually did not need it.
Although experiencing fatigue since 1965, often debilitating, he continued to work throughout his life. This man spent his career working as an architectural photographer, attending an exhibit of his own work three months before his death in 2007. I thought it was particularly interesting that the poster did mention that this man "remained sexually active well into his 80s."
He died at age 97 of general weakness and respiratory failure shortly before his 97th birthday. He had lived 75 years with MS.
The poster claimed that this man was the oldest person with MS when he died. I don't know if that is true or not, but cannot find information about anyone older. Regardless, I find the story of this man (as condensed as it was on the poster) to be interesting and heartwarming from a human perspective and lovely that it made it into a scientific conference.
Read more about MS and life expectancy: