My brother, Peter Borwein, is a distinguished Canadian mathematician who has something intimate in common with Ann Romney. They both have multiple sclerosis. But as you will see from the following letter that he just wrote to me, the differences outweigh their similarities.
Ann Romney was diagnosed with multiple sclerosis (MS) in 1998. She was born in 1949. I was diagnosed with MS in 1996. I was born in 1953. Exact dates of diagnosis are inexact. MS rarely has an exact starting date. But we were both in our mid-to-late forties: a little atypically-late onset but not extreme.
We are not rare. In fact, we have a common neurological disease. A reasonable estimate is that we are half a million strong in North America and two million world wide. It is not a disease of the tropics.
Both of us will die with MS, quite possibly from complications. How long is variable. But no one is cured, despite a recent CNN claim that Anne Romney had beaten the disease. No one ever has. One can be lucky and have long remissions. But that is not a cure.
About twenty per cent are lucky enough never to enter the progressive stage. But only 20%. I already have progressive MS. Likely Anne doesn’t yet, at least by appearances, but the odds are that she will within roughly 15 years of onset.
This is the average. Once again there are no guarantees: 75% can still walk after 15 years from onset. Hence, 25% can’t. I could still ski in 2000, but for the last five years I’ve been totally wheelchair bound. Such are the vagaries of MS.
I hope Ann Romney’s progress is slower. I wish this for every victim of MS. Pseudoscience often trumps evidence in the alternative medical approaches to MS. Witness the Swank diet. The only proven therapies are the disease modifying drugs like Rebif (Merck’s version of an interferon based drug).
These drugs are expensive and imperfect. In principle they slow down the progress of disease. This is what the statistics indicate. But it is impossible to tell, for any individual, if they are working. How do you know that the slowing of the disease was due to the drugs and not just the course of the MS with its natural ups and downs? You don’t and you can’t !
But at least there is some statistical evidence from a large sample of users. This is not the case for the alternative therapies. Individual testimonials are meaningless, though they abound and cloud the science. Certainly, there is nothing resembling a cure. Progress has been frustratingly slow.
I anticipated Ann’s speech to the Republican convention. My pre-speech thoughts were ambivalent. I admire that she went public about her disease in front of a national audience. The potential voting block of MS sufferers is large enough to swing a close election. But, independent of motivation, going public about one’s diseases can’t be easy. However, she has now made her MS public and so also made it fair game for commentary.
So here are some thoughts. MS is expensive. Most people with MS — like most people with chronic disease — live in poverty. The following are underestimates of my costs. My doctor-wife and I are comfortably middle-class but certainly no Romneys. Our costs over just the past five years include:
I am not adding in visits to the neurologist, MRI scans, removing carpet to replace with hardwood floors for my wheelchair etc. and these are conservative Canadian costs. Over $100,000 was out of my pocket. Over $100,000 was covered by Blue Cross. Over $100,000 was covered by Canadian national healthcare coverage.
And this is likely just the tip of the iceberg. Wheelchairs and wheelchair vans need periodic replacement. Drugs change. Drugs once thought safe turn out to have potentially nasty side effects. Partly because only large scale use can uncover most subtle side effects.
The scale is daunting. Money can’t buy a cure, at least not yet. But it certainly can make life a whole lot easier. Without an elevator I would be stuck downstairs. Without a ceiling lift and caregivers I would spend my day in bed. The quality of one’s life depends on money in so many ways.
According to Wikipedia, Ann has partaken of ”reflexology, acupuncture, and craniosacral therapy”, and has said
“There is huge merit in both Eastern and Western medicine, and I’ve taken a little bit from both.”
Apparently three-quarters of MS sufferers try some often dubious alternative medicine approach.
My alternative therapy comprises some “massage therapy” and “Gin and tonic.” Tonic contains quinine which can be used for muscle spasticity: although probably not therapeutically in the dose I take. My approach to alternative therapies follows the Hippocratic oath “above all do no harm” and I choose the harmless ones I like.
Nothing as flaky as reflexology. That choice is, of course, mainly her personal business. But, to the extent that her views on evidence-based medicine both inform the presidential candidate, and make her a role model for many others, it seems reasonable to worry.
I watched Ann Romney’s speech through two sets of lenses: the lens of having MS and the lens of being a Canadian. I am a fan of Canadian ‘socialized’ healthcare. By any honest comparative measures, Canadian healthcare beats US healthcare hands down. For two-thirds of the cost it delivers better life expectancy, infant mortality rates and immunization rates. Measures like that are concrete.
I was initially sympathetic towards Ann Romney. At least in principle it seems like a positive to a have a presidential candidate’s wife as an advocate for MS research. Since she played the MS card it also seems fair to comment on her speech.
It soon irritated me. It was so disingenuous. She portrayed herself as a ‘Welsh coal miner’s grand-daughter’ but omitted mention of being a wealthy industrialist’s daughter. It reminded me of catching students goofily lying about excuses on missed assignments ‘The dog ate it’.
Small lies. Her attempt to be ‘one of the people’, a more personable version of Mitt Romney’s, was so patently fraudulent. Common people don’t treat their MS with equestrian dressage. They are lucky if they can afford a dog. And speaking of dogs it might be preferable — and it would certainly be refreshing — if candidates admitted the same manifest self-interest that dogs show when they trade affection for food scraps.
I was reminded of Fitzgerald’s words in the third paragraph of his 1926 short story “The Rich Boy“:
“Let me tell you about the very rich. They are different from you and me. They possess and enjoy early, and it does something to them, makes them soft, where we are hard, cynical where we are trustful, in a way that, unless you were born rich, it is very difficult to understand.”
I should note that writing such a letter is far from easy physically for Peter. He no longer has any control of his lower body, little of his upper body, and in a mean swipe God has also given him glaucoma. His breathing is no longer easy and so his only robust sense is hearing.
Modern technology and moderate affluence have allowed Peter to continue to use his first-rate mind. He has a sympathetic employer who has integrated his house to his University via a good video link. Audio books, voice recognition and dictation software have largely replaced the written word.
In that Peter is lucky. Several close colleagues recently lost brothers to MS. One had extensive brain lesions and slowly starved himself to death, another had control of just one finger and lived in US charity housing. He also had badly diagnosed heart disease — the symptoms first blamed on MS.
MS is more common in women but more frequently seems to hit men harder. Frequently is not always. My female classmate at university, with a doctorate in mathematics, has lost the power of speech. Her sister does not know what she still understands.
Peter has not told all the details: the need to wear diapers when he leaves the house, the need to ask someone to zip him up or put his feet back on the wheel chair. His spirit is amazing. But everyday is a battle and each tomorrow a lottery.
In the Unitarian community I participated in in Nova Scotia — where the MS rate is strikingly high even by Canadian standards — we had a friend who had been diagnosed in 1974, and remained independent and only mildly effected for a quarter century.
Five years later, she had to be strapped in her wheel chair during services so that she did not fall out when hit by a seizure. Her friends in the congregation and a strong Canadian health network were able to give some dignity and quality to her life.
Ann is a very lucky lady, so far. Perhaps, she and Governor Romney should try hard to imagine life, were they in our friend’s place, with neither Obama-care nor Romney-riches.
A recent article in the Daily Beast suggests that Ann knows better but the campaign wanted her to “low-ball” off the experience of MS — so that rich boy Mitt could emulate Reagan’s “Morning in America”. Unless you were born rich, this is very difficult indeed to understand.