As someone who’s good friends with someone with advanced MS but still manages to go around the world and convince governments to set aside habitat for flyways and breeding grounds for cranes, I sort of just took the current knowledge we have of the disease for granted.
Basically, MS is an inflammation of the fatty myelin sheath around the axons of the brain and spinal cord due to the body attacking its own specialized adipose cells. The autoimmune response eventually kills off the sheath, leading to demyelination of the axons, which makes the electrical impulse from the brain unable to make it to its destination. It’s a lot like an underwater electrical cord without insulation; the electricity just goes everywhere besides where it’s supposed to. Because of the demyelination, the condition manifests in a lot of different ways, but muscle weakness, fatigue, and acute or chronic pain are the most common. The disease can be intermittently progressive (with symptoms coming and going but still getting worse), or progressively degenerative.
History of MS
Jean-Marie Charcot was the first person to describe multiple sclerosis as a distinct disease. Prior to Charcot, Robert Carswell and Jean Cruveilhier both described clinical cases of MS, but neither of them recognized it as a distinct condition. Carswell also described a “remarkable lesion of the spinal cord accompanied with atrophy”, describing the characteristic lesions and scarification along the spinal cord in the disease. A sclerosis is the term describing those lesions, giving the disease the name multiple sclerosis. The name Jean-Marie Charcot used to refer to the condition was “sclerose en plaques”, but when his works were translated, most translations use the name “disseminated sclerosis”.
Jean-Marie Charcot also established the three signs of MS known as Charcot’s triad 1 (nystagmus, intention tremor, telegraphic speech), and the three main phases of the disease’s progression. This is what he proposed during a lecture on the subject in 1879:
Back then, death from multiple sclerosis in most of its manifestations generally followed within 5 years of diagnosis, and 10-15 years from the onset of symptoms, at least among the lower classes. Poor nutrition sped up the advance of the disease considerably, especially given what the urban poor in the 19th century were able to acquire for food. These days, though symptoms may first manifest in early adulthood, most people still live just 5-10 years shorter of a full lifespan.
Care for patients back then was actually largely the same as it is now, aside from palliative medications and medications to slow the progression that we now have. Support of the patient physically, trying to engage their brain so that neurological problems are lessened, good nutrition, and encouraging movement were all used by the early 20th century. Less emphasis was put on maintaining neurological integrity then than there is now, and people were more often than not put into an institution or laying-in hospital.
Historical Cases of MS
The earliest assumed cases of MS are based around diary entries, accounts by peers, and written cases by physicians, and show that this is not at all a new disease.
Saint Lidwina of Schiedam was a Dutch nun who lived from 1380-1433, and is probably one of the first documented cases that matches all of the classic symptoms of MS. From the age of 16 until she died at 53, there were intermittent bouts of muscle weakness, vision loss, and pain. The symptoms came and went and got progressively worse until her death. She also had a noted decline in mental function in the last couple years of life, but not before that.
Augustus Frederick d’Este (grandson of the UK’s King George III) also almost definitely had MS, and kept a daily diary for the 22 years he had to deal with it. In his diary, he noted that he had progressive muscle weakness and had to deal with transient vision loss, erectile dysfunction, and tingling numbness as the disease progressed. Though he had to take to a wheelchair full-time in the last two years of his life, he was rather optimistic in his outlook on the world and life. He didn’t display any obvious mental decline before his death, at least judging by his writing.
If anyone wants a, well, less optimistic view, The Journal of a Disappointed Man is the diary of Bruce Frederick Cummings (aka W. N. P. Barbellion). It’s not a down-trodden and miserable book, but having read it myself, I can say it’s very rooted in the reality of the challenges facing people suffering from MS. It’s frank, and somewhat graphic, and yet quite eloquent. His view on death and dying in that book is very moving:
”To me the honour is sufficient of belonging to the universe — such a great universe, and so grand a scheme of things. Not even Death can rob me of that honour. For nothing can alter the fact that I have lived; I have been I, if for ever so short a time. And when I am dead, the matter which composes my body is indestructible—and eternal, so that come what may to my ‘Soul,’ my dust will always be going on, each separate atom of me playing its separate part — I shall still have some sort of a finger in the pie. When I am dead, you can boil me, burn me, drown me, scatter me — but you cannot destroy me: my little atoms would merely deride such heavy vengeance. Death can do no more than kill you.”
He lived between 1889 and 1919, so for anyone looking for what middle-class life was like with MS around the turn of the century, I can recommend nothing more highly.
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