- InAdvance Consortium
Multiple Sclerosis and Palliative Care - The Story of Miriam
Updated: Jun 1
My grandmother had Multiple Sclerosis. In this post I’m going to call her Miriam. Miriam was born in Finland between the World War I and World War II. Right after the World War II she gave birth to her first child, later followed by three more children, one of whom died in infantry. Life was hard running a small farm, household and taking care of the children without the modern facilities. She used to take naps during the days. In some point she started to notice that one of her legs was not working like it used to. She started to lag that leg behind, which affected her walking. The neighbours were talking that she was lazy, because she was not lifting her legs normally.
After more and more symptoms started appearing, and they impacted more her life, she went to see a doctor. She was finally diagnosed with Multiple Sclerosis in the early 1950’s.
Multiple Sclerosis is a chronic neurological condition usually diagnosed at women in young age, below 40 years old. The prognosis of the disease varies and is seldomly the same between individuals. Also, the symptoms vary and change over time. The most common problems faced by people with Multiple Sclerosis are physical disability, depression and cognitive symptoms, as well as fatigue, pain, spasticity, shaking, swallowing problems, and bladder and bowel problems. [1, 2]
The prevalence of Multiple Sclerosis in Finland is 8,722 patients . Nowadays there are several different medical treatment options available unlike during the time of Miriam.
My grandparents had to leave the small farm where they were living, and Miriam had to stay for longer periods to receive care in a hospital in Helsinki, the capital of Finland. The medical care she received for Multiple Sclerosis in the 1950’s Finland was mainly vitamins. The children were split between both maternal and paternal grandparents, and they spent a school semester 130 km away from each other. When Miriam returned back home, my uncle did not remember who she was and was calling her by her name instead of “mother”. At home Miriam was moving around the house with a kitchen chair. Door frames had deep marks from her fingers as she was pushing herself around the house for years with the help of her arms as her legs failed her.
Later on, her children took care of Miriam, they carried her from the bed to the living room and helped to prepare the food and clean the house. Until the day came when the children moved to live on their own, had their own families, and the disease took over her. Then they had to move Miriam permanently to a nursing home.
Palliative care is topical when the disease impairs the ability to exercise and the patient has many significant symptoms  The early integration of palliative care to multiple sclerosis patients’ care and advance care planning would bring help and support for patients, family and healthcare professionals. 
During the last years of her life Miriam was in bed, received treatment to manage her increased pain and spasticity, falls and bladder problems. Her children, grandchildren, her brothers and relatives came to visit her. The situation was hard for the loved ones when she could not speak anymore. In the end the only sign you got from her was the joy in her eyes as she recognised her own children and grandchildren.
Miriam passed away in the early 1970’s at the age of 52.
Multiple Sclerosis reduces life on average by 7 years. 
How many years with quality of life Miriam would have benefited from an early palliative approach? Will I have the possibility to receive early palliative care when my own Multiple Sclerosis evolves?
 MS Society. MS Symptoms and Signs. https://www.mssociety.org.uk/about-ms/signs-and-symptoms
 National Multiple Sclerosis Society. Symptoms & Diagnosis. https://www.nationalmssociety.org/Symptoms-Diagnosis
 Laakso SM, Viitala M, Kuusisto H, et al. Multiple sclerosis in Finland 2018-Data from the national register. Acta Neurol Scand. 2019;140(5):303‐311. doi:10.1111/ane.13145
 World Health Organization. WHO definition of Palliative Care. https://www.who.int/cancer/palliative/definition/en/
 Golla, H., Galushko, M., Pfaff, H. et al. Multiple sclerosis and palliative care - perceptions of severely affected multiple sclerosis patients and their health professionals: a qualitative study. BMC Palliat Care 13, 11 (2014). https://doi.org/10.1186/1472-684X-13-11
 Multiple Sclerosis News Today. Multiple Sclerosis Prognosis and Life Expectancy. https://multiplesclerosisnewstoday.com/multiple-sclerosis-prognosis-life-expectancy/