{"id":3539,"date":"2012-08-31T16:20:18","date_gmt":"2012-09-01T00:20:18","guid":{"rendered":"http:\/\/experimentalmath.info\/blog\/?p=3539"},"modified":"2012-09-03T15:48:54","modified_gmt":"2012-09-03T23:48:54","slug":"ann-romney-and-my-brother","status":"publish","type":"post","link":"https:\/\/experimentalmath.info\/blog\/2012\/08\/ann-romney-and-my-brother\/","title":{"rendered":"Ann Romney and my Brother"},"content":{"rendered":"<p>My brother, <a href=\"http:\/\/en.wikipedia.org\/wiki\/Peter_Borwein\">Peter Borwein<\/a>, is a distinguished Canadian mathematician \u00a0who has something intimate in common with<a href=\"http:\/\/en.wikipedia.org\/wiki\/Ann_Romney\"> Ann Romney<\/a>.\u00a0They both have multiple sclerosis. But as you will see \u00a0from the following letter that he just \u00a0wrote to me, the differences outweigh their similarities.<\/p>\n<p style=\"padding-left: 30px;\"><span style=\"color: #333399;\">Ann Romney was diagnosed with <a href=\"http:\/\/edition.cnn.com\/2012\/08\/28\/health\/multiple-sclerosis-ireporters\/index.html\">multiple sclerosi<\/a>s (MS) in 1998. She was born in 1949. I was diagnosed with MS in 1996. I was born in 1953. \u00a0Exact dates of diagnosis are inexact.\u00a0 MS rarely has an exact starting date.\u00a0 But we were both in our mid-to-late forties: a little atypically-late onset but not extreme.<\/span><\/p>\n<p style=\"padding-left: 30px;\"><span style=\"color: #333399;\">We \u00a0are 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.\u00a0<\/span><span style=\"color: #333399;\">It is not \u00a0a disease of the tropics.<\/span><\/p>\n<p style=\"padding-left: 30px;\"><span style=\"color: #333399;\"><a href=\"https:\/\/experimentalmath.info\/blog\/wp-content\/uploads\/2012\/08\/MS-globally1.jpg\"><img loading=\"lazy\" decoding=\"async\" class=\"size-medium wp-image-3591 alignleft\" title=\"MS Global incidence\" src=\"https:\/\/experimentalmath.info\/blog\/wp-content\/uploads\/2012\/08\/MS-globally1-300x182.jpg\" alt=\"\" width=\"300\" height=\"182\" srcset=\"https:\/\/experimentalmath.info\/blog\/wp-content\/uploads\/2012\/08\/MS-globally1-300x183.jpg 300w, https:\/\/experimentalmath.info\/blog\/wp-content\/uploads\/2012\/08\/MS-globally1-150x91.jpg 150w, https:\/\/experimentalmath.info\/blog\/wp-content\/uploads\/2012\/08\/MS-globally1-400x243.jpg 400w, https:\/\/experimentalmath.info\/blog\/wp-content\/uploads\/2012\/08\/MS-globally1.jpg 632w\" sizes=\"auto, (max-width: 300px) 100vw, 300px\" \/><\/a><\/span><\/p>\n<p style=\"padding-left: 30px;\"><span style=\"color: #333399;\">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 <em>beaten<\/em> the disease. No one ever has. One can be lucky and \u00a0have long remissions. But that is not a cure.<\/span><\/p>\n<p style=\"padding-left: 30px;\"><span style=\"color: #333399;\">About twenty per cent are lucky enough never to enter the progressive stage. But only 20%. I already have progressive MS. Likely Anne doesn&#8217;t yet, at least by appearances, but the odds are that she will within roughly 15 years of onset.<\/span><\/p>\n<p style=\"padding-left: 30px;\"><span style=\"color: #333399;\">This is the average. Once again there are no guarantees: 75% can still walk after 15 years from onset. Hence, 25% can&#8217;t. I could still ski in 2000, but for the last five years I&#8217;ve been totally wheelchair bound. Such are the vagaries of MS.<\/span><\/p>\n<p style=\"padding-left: 30px;\"><span style=\"color: #333399;\">I hope Ann Romney&#8217;s\u00a0 progress is slower. I wish this for every victim of MS. Pseudoscience often trumps evidence in the alternative medical approaches to MS.\u00a0 Witness the <a href=\"http:\/\/en.wikipedia.org\/wiki\/Swank_diet\">Swank diet<\/a>. The only proven therapies are the disease modifying drugs like <em>Rebif \u00a0<\/em>(Merck&#8217;s version of \u00a0an <a href=\"http:\/\/en.wikipedia.org\/wiki\/Interferon_beta-1a\">interferon based drug<\/a>).<\/span><\/p>\n<p style=\"padding-left: 30px;\"><span style=\"color: #333399;\">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? \u00a0You don\u2019t and you can\u2019t !<\/span><\/p>\n<p style=\"padding-left: 30px;\"><span style=\"color: #333399;\">But at least there is some statistical evidence from a large sample of users. This \u00a0is 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.<\/span><\/p>\n<p style=\"padding-left: 30px;\"><span style=\"color: #333399;\">I anticipated Ann\u2019s speech to the Republican convention.\u00a0 My pre-speech thoughts were ambivalent.\u00a0 I admire that she went public about her disease in front of a national audience.\u00a0 The\u00a0 potential voting block of MS sufferers is large enough to swing a close election.\u00a0 But, independent of motivation, going public about one&#8217;s diseases can&#8217;t be easy.\u00a0 However, she has now made her MS public and so also made it fair game for commentary.<\/span><\/p>\n<p style=\"padding-left: 30px;\"><span style=\"color: #333399;\">\u00a0<\/span><span style=\"color: #333399;\">So here are some thoughts.\u00a0 MS is expensive.\u00a0 Most people with MS &#8212; like most people with chronic disease\u00a0 &#8212; \u00a0live in poverty.\u00a0 The following are underestimates of my costs.\u00a0 My doctor-wife and I are comfortably middle-class but certainly no Romneys. Our costs over just the past five years include:<\/span><\/p>\n<ul style=\"padding-left: 30px;\">\n<ul>\n<li><span style=\"color: #993300;\">elevator: <strong>$25,000<\/strong><\/span><\/li>\n<li><span style=\"color: #993300;\">wheelchair: <strong>$20,000<\/strong><\/span><\/li>\n<li><span style=\"color: #993300;\">wheelchair accessible shower: <strong>$30,000<\/strong><\/span><\/li>\n<li><span style=\"color: #993300;\">wheelchair van: <strong>$40,000<\/strong><\/span><\/li>\n<li><span style=\"color: #993300;\">injectable <\/span><a href=\"http:\/\/ms.about.com\/od\/treatments\/a\/betaseron.htm\"><span style=\"color: #993300;\"><em>Betaseron<\/em><\/span><\/a><span style=\"color: #993300;\">: <strong>$30,000<\/strong> per annum for 2 years\u00a0\u00a0(for relapsing MS)<\/span><\/li>\n<li><a href=\"http:\/\/ms.about.com\/od\/treatments\/a\/Intravenous-Immunoglobulin-Ivig-For-Multiple-Sclerosis.htm\"><span style=\"color: #993300;\"><em>IVIG<\/em><\/span><\/a><span style=\"color: #993300;\">: <strong>$40,000<\/strong> per annum for 2 years<\/span><\/li>\n<li><a href=\"http:\/\/www.webmd.com\/multiple-sclerosis\/news\/20120420\/new-warnings-for-ms-drug-gilenya-after-fda-review\"><span style=\"color: #993300;\"><em>Gilenya<\/em><\/span><\/a><span style=\"color: #993300;\">: <strong>$40,000<\/strong> per annum on going (for relapsing MS)<\/span><\/li>\n<li><span style=\"color: #993300;\">home care: <strong>$30,000<\/strong> per annum on going<\/span><\/li>\n<\/ul>\n<\/ul>\n<p style=\"padding-left: 30px;\"><span style=\"color: #333399;\">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.\u00a0\u00a0Over $100,000 was out of my pocket.\u00a0 Over $100,000 was covered by Blue Cross.\u00a0 Over $100,000 was covered by Canadian national healthcare coverage. <\/span><\/p>\n<p style=\"padding-left: 30px;\"><span style=\"color: #333399;\">And this is likely just the tip of the iceberg.\u00a0<\/span><span style=\"color: #333399;\">Wheelchairs and wheelchair vans need periodic replacement. Drugs change. Drugs \u00a0once thought safe turn out to have potentially nasty side effects. Partly because only large scale use can uncover most subtle side effects.<\/span><\/p>\n<p style=\"padding-left: 30px;\"><span style=\"color: #333399;\">The scale is daunting. Money <em>can\u2019t<\/em> buy a cure, at least not yet. But it certainly <em>can<\/em> 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\u2019s life depends on money in so many ways.<\/span><\/p>\n<p style=\"padding-left: 30px;\"><span style=\"color: #333399;\">According to Wikipedia, <a href=\"http:\/\/en.wikipedia.org\/wiki\/Ann_Romney\">Ann has partaken<\/a> of \u00a0&#8220;reflexology, acupuncture, and craniosacral therapy&#8221;, and has said<\/span><\/p>\n<blockquote style=\"padding-left: 30px;\">\n<p style=\"padding-left: 30px;\" align=\"center\"><span style=\"color: #333399;\">&#8220;There is huge merit in both Eastern and Western medicine, and I&#8217;ve taken a little bit from both.&#8221;<\/span><\/p>\n<\/blockquote>\n<p style=\"padding-left: 30px;\"><span style=\"color: #333399;\">Apparently three-quarters of MS sufferers try some often dubious\u00a0<a href=\"http:\/\/www.scienceinmedicine.org.au\/\">alternative medicine<\/a> approach.<\/span><\/p>\n<p style=\"padding-left: 30px;\"><span style=\"color: #333399;\">My alternative therapy comprises some \u201cmassage therapy\u201d\u009d and \u201cGin and tonic.\u201d\u00a0 Tonic contains quinine which can be used for muscle spasticity: although probably not therapeutically in the dose I take.\u00a0 My approach to alternative therapies follows the Hippocratic oath &#8220;above all do no harm&#8221; and I choose the harmless ones I like.<\/span><\/p>\n<p style=\"padding-left: 30px;\"><span style=\"color: #333399;\">Nothing as flaky as <em>reflexology<\/em>.\u00a0 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.<\/span><\/p>\n<p style=\"padding-left: 30px;\"><span style=\"color: #333399;\">I watched Ann Romney&#8217;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 \u2018socialized\u2019\u009d 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. \u00a0Measures like that are concrete.<\/span><\/p>\n<p style=\"padding-left: 30px;\"><span style=\"color: #333399;\">I was initially sympathetic towards Ann Romney. At least in principle it seems like a positive to a have a presidential candidate\u2019s wife as an advocate for MS research. Since she played the MS card it also seems fair to comment on her speech.<\/span><\/p>\n<p style=\"padding-left: 30px;\"><span style=\"color: #333399;\">It \u00a0soon irritated me. \u00a0It was so disingenuous. She\u00a0 portrayed herself as a \u2018Welsh coal miner\u2019s grand-daughter\u2019 \u00a0but omitted mention of being a wealthy industrialist\u2019s daughter. It reminded me of catching students goofily lying about excuses on missed assignments &#8216;The dog ate it\u2019.<\/span><\/p>\n<p style=\"padding-left: 30px;\"><span style=\"color: #333399;\">Small lies. \u00a0Her attempt to be \u2018one of the people\u2019, a more personable version of Mitt Romney\u2019s, was so patently fraudulent. Common people don\u2019t treat their MS with equestrian\u00a0<a href=\"http:\/\/en.wikipedia.org\/wiki\/Dressage\">dressage<\/a>. They are lucky if they can afford a <a href=\"http:\/\/www.huffingtonpost.com\/2012\/08\/26\/dogs-against-romney-_n_1831961.html?utm_hp_ref=elections-2012\">dog<\/a>. And speaking of dogs it might be preferable &#8212; and it would certainly be refreshing \u00a0&#8212; if candidates admitted the same manifest self-interest that dogs show when they trade affection for food scraps.<\/span><\/p>\n<p style=\"padding-left: 30px;\"><span style=\"color: #333399;\">I was reminded of Fitzgerald\u2019s words in the third paragraph of his \u00a01926 short story &#8220;<a href=\"http:\/\/gutenberg.net.au\/fsf\/THE-RICH-BOY.html\">The Rich Boy<\/a>&#8220;:<\/span><\/p>\n<blockquote style=\"padding-left: 30px;\">\n<p style=\"padding-left: 30px;\"><span style=\"color: #333399;\">&#8220;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.&#8221;<\/span><\/p>\n<\/blockquote>\n<p style=\"padding-left: 30px;\"><span style=\"color: #333399;\">Peter Borwein<\/span><\/p>\n<p>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.<\/p>\n<p>Modern technology and moderate affluence have allowed Peter to continue to use his first-rate mind. \u00a0He has a sympathetic employer who has integrated his house to his University via a good video link.\u00a0Audio books, voice recognition and dictation software have largely replaced the\u00a0written\u00a0word.<\/p>\n<p>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 \u00a0finger and lived in US charity housing. \u00a0He also had badly diagnosed heart disease &#8212; the symptoms first blamed on MS.<\/p>\n<p>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.<\/p>\n<p>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. \u00a0His spirit is amazing. But everyday is a battle and each tomorrow a lottery.<\/p>\n<p>In the Unitarian community I participated in in Nova Scotia &#8212; where the <a href=\"http:\/\/mssociety.ca\/en\/research\/medmmo-prev-may_02.htm\">MS rate<\/a> \u00a0is strikingly high even by Canadian standards &#8212; \u00a0we had a friend who had been diagnosed in 1974, and remained independent and only mildly effected for a quarter century.<\/p>\n<p>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\u00a0<a href=\"http:\/\/www.theatlantic.com\/health\/archive\/2012\/08\/no-chris-christie-us-health-care-is-not-the-worlds-greatest\/261728\/\">Canadian health network<\/a> were able to give some dignity and quality to her life.<\/p>\n<p>Ann is a very lucky lady, so far.\u00a0Perhaps, she and Governor Romney should try hard to imagine life, were they in our friend&#8217;s place, with neither Obama-care nor Romney-riches.<\/p>\n<p>A\u00a0<a href=\"http:\/\/www.thedailybeast.com\/articles\/2012\/09\/03\/ann-romney-s-big-boo-boo.html\">recent article<\/a>\u00a0in the Daily Beast suggests that \u00a0Ann knows better but the campaign wanted her to &#8220;low-ball&#8221; off the experience of MS &#8212; \u00a0so \u00a0that rich boy Mitt could emulate Reagan&#8217;s &#8220;Morning in America&#8221;. \u00a0Unless you were born rich, this is very difficult \u00a0indeed to understand.<\/p>\n<p>&nbsp;<\/p>\n","protected":false},"excerpt":{"rendered":"<p>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.<\/p>\n<p style=\"padding-left: 30px;\">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.<\/p>\n<p>Continue reading <a href=\"https:\/\/experimentalmath.info\/blog\/2012\/08\/ann-romney-and-my-brother\/\">Ann Romney and my Brother<\/a><\/p>\n","protected":false},"author":4,"featured_media":0,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[4,10],"tags":[],"class_list":["post-3539","post","type-post","status-publish","format-standard","hentry","category-essays","category-news","odd"],"_links":{"self":[{"href":"https:\/\/experimentalmath.info\/blog\/wp-json\/wp\/v2\/posts\/3539","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/experimentalmath.info\/blog\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/experimentalmath.info\/blog\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/experimentalmath.info\/blog\/wp-json\/wp\/v2\/users\/4"}],"replies":[{"embeddable":true,"href":"https:\/\/experimentalmath.info\/blog\/wp-json\/wp\/v2\/comments?post=3539"}],"version-history":[{"count":72,"href":"https:\/\/experimentalmath.info\/blog\/wp-json\/wp\/v2\/posts\/3539\/revisions"}],"predecessor-version":[{"id":3577,"href":"https:\/\/experimentalmath.info\/blog\/wp-json\/wp\/v2\/posts\/3539\/revisions\/3577"}],"wp:attachment":[{"href":"https:\/\/experimentalmath.info\/blog\/wp-json\/wp\/v2\/media?parent=3539"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/experimentalmath.info\/blog\/wp-json\/wp\/v2\/categories?post=3539"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/experimentalmath.info\/blog\/wp-json\/wp\/v2\/tags?post=3539"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}