Wednesday, 24 September 2014

MS Role Models Take 2

Despite the mixed reception on my previous post on MS Role Models I'm going to brave the storm and talk about another inspiring MSer - Ann Romney.

Ann Romney is the wife of Mitt Romney the Republican nominee in the 2012 US Presidential election. Wherever your political leanings lie, try to stay with me! 

Ann Romney was diagnosed with relapsitting-remitting MS in 1998 following an episode of numbness in her leg. She began to be treated with steroids but gave up on conventional medicine in favor of alternative therapies such as acupuncture and reflexology. Another one of these is 'equestrianism'!! She has had occasional relapses since her diagnosis but credits alternative therapies as the main source of her remission.




"I decided I was very comfortable with my MS. Everybody has problems. Everyone has issues. And this happens to be a surprise thing that came in my life, and I didn't count on. Everywhere I go people come up to me, they mob me — anyone who has MS or has a relative with MS — they come up and hug and cry. I don't care what somebody else thinks about it. I know for certain people I'm championing a struggle that they're going through."


"There are certain things that don't mix well with MS. One is staying up late at night. Another is big, noisy crowds."


Have a look at this video of Ann Romney talking about her experiences with MS.

I will post in the next few days about the potential role of acupuncture in MS as it seems to be a recurring theme. ..

16 comments:

  1. She looks good, but does she know that even as she does, the MS continues to eat her brain? That sooner or later, she is going to run out of reserve? I know she has seen the best doctors, and wonder who among them has signed off on this course.

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  2. Actually, she was treated with chemotherapy by Dr. Howard Weiner from Harvard on an experimental basis. I guess this is an option in her position, but if she is portraying that she cured MS through riding horses she is more out of touch with reality than I thought.

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  3. Hippo therapy and alternative medicine is the way to remission not the myriad of DMTs. Can I get a prescription for a horse?

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  4. I don't see her as a 'role model' but then I'm not a 'I need role models' type of person. However, if you are going to have 'role models' I'd have more respect someone with MS struggling to get by, trying to get social support, watched their life fall apart,who has lost their job and/or family etc and still manages to get up in the morning and sees the positives in life. And no that isn't me, like Ann Romney, I have mild MS (for longer that her, but no treatment) so I work, have a reasonable income (not in the Romney bracket) etc. Easier for me to leap out of bed feeling cheerful. So the people that face far worse MS than me and can still smile and have sense of humour, despite the indignities MS can bring, are the people that should be 'role models'.

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  5. I think I'm missing the point. Why is she a role model?

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  6. I don't understand the negativity - she is very lucky to have mild MS. As with any other disease some people are luckier than others.

    It can happen with other auto-immune diseases as well - I've been having mild psoriasis for the last 30 years so clearly there is some genetic/organic predisposition to that (my family has that as well).

    She is an MSers who copes as well as she can with this illness - sure, having money helps and I find it interesting that she relies on no DMTs and is doing very well. I had a time when I was using the same treatments as her (minus the horse :-)) and was doing very well with no relapses no progression etc. So who knows?

    I guess she is 50+ so even if she were to loose her brain reserve in the next 20 years so what? People at 80 are not healthy.

    I wish her well.

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    1. I guess it comes down to how you define role model. According to wiki A role model is a person whose behavior, example, or success is or can be emulated by others, especially by younger people.[1] The term "role model" is credited to sociologist Robert K. Merton, who coined the phrase during his career.[2][3] Merton hypothesized that individuals compare themselves with reference groups of people who occupy the social role to which the individual aspires.'

      Ann Romney, and I'd think everyone wishes her well, is not someone who fits this category for me, nor the others who have questioned this. It doesn't mean they are being negative. It will always be subjective, like your subjective judgement about 'negativity'. Personally I find your 'so what' comment quite negative.

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    2. Perhaps I should have rephrased the 'so what' but all I am saying is that due to aging all our brains loose its capacity - if Ann Romney is doing great then no need to focus on the brain shredder which perhaps will not come into effect in her life anyway and she will live the life of a regular 70-80 year old.

      Also, she looks great and healthy but obviously has to cope with the illness, mild or not - I have been in a similar situation where I need to justify my MS because people think I am looking in good health - mild or not we all struggle and that struggle for me defines 'role model'.

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    3. I know the feeling, even my GP and neurologist comment on how well I look. And I hate speaking to anyone waiting to see the neurologist because they don't believe me, when asked, that I say I have MS (for more than 25 years) and a few people get quite upset. So it's not because of this that I don't consider her a role model, it's more that just as much as I would not be a role model for the majority of people with MS who face far bigger challenges in their daily lives than I do. It has much more to do with 'luck' than anything else - it's why I'm unlikely to ever win the lottery, as having mild 'but- you- look-so-good-MS' has used all my luck ;)

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    4. Are you using any medication - DMTs or natural?

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    5. Anon 7:23pm

      I think you've hit on one of the problems with doctors (and probably others) understanding people with MS and some other illnesses - doctors compare their patients and their level of perceived illness/disability with other patients whilst those with the disease compare their level of function and how they're feeling with their former unaffected selves or people WITHOUT the disease.

      This can lead to an unintentionally callous view from healthcare providers particularly for those early in the disease or with little outwardly visible disability. This may have also contributed to the decision to essentially ignore early disease by various doctors and bodies responsible for providing access to treatments.

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    6. There are loads of us that have never been on medication, but have managed to carry on as best we could. I've had a number of relapses and carried on. An ambulance worker recently asked me what I had done to my hip. I now have SPMS. I do not look ill, even when I went to a celebration on the day I was told I had cancer everyone said how well I looked. Newly diagnosed friends came to me for advice, they knew I managed to carry on despite having many relapses. There are many small things I do, that are part of my life and I don't consciously know I'm doing until friends will comment . When we sit in Outpatients waiting to see our Neurologists and he says we are walking well it is quite frustrating. It has more to do with the fact that we're rested and we've only had to walk 10 feet to see him. He/she doesn't see the daily struggle. Maybe Prof G should change it to Inspiring instead of the phrase Role Model. So Anon 7:23 don't be so hard on yourself, you're probably doing something right.

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    7. I'm not too hard on myself, really. I'm a very positive and have good self esteem - and I never give up. Yes, there are things I do and -I feel - keep the MS mild but far easier to say luck than go into details. BTW, my neurologist stopped doing the walking test with me around 8 years ago, not much point as I'm an extremely fast walker (usually i walk around 7/8 miles every day) even in high heels -more of the but 'you look so good ... blah blah'

      Anyway, though I'm an atheist , I feel "the vicar of Baghdad" Cannon Andrew White, more deserves to be a figure of inspiration than some others (talk about a stressful job) http://en.m.wikipedia.org/wiki/Andrew_White_(priest)

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  7. When I think of MS role models I don't think of Ann Romney, Jack Osborne or even Stephanie Milward (who achieved sporting greatness with MS). I think of two women I know. The first, I will call JL, has been living with MS for over 10 years and now uses a chair but is a fantastic mum, started a little business, is active in her local community and is relentlessly positive. The second, CP exudes calm while managing a stressful high-powered career and two small children. I've selected those two but honestly I've met lots of amazing MSers over the past six years who don't break world records, earn Nobel prizes, or have high media profiles but they make the most of their lives with MS and enrich the lives of others.

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  8. I will add Cannon Andrew White again here in case he is not picked up in my reply above. To me, he is inspiring, a much better term than role model!
    http://en.m.wikipedia.org/wiki/Andrew_White_(priest). There are quite a lot of people with MS, that I'd put in this category - including the 'ordinary' struggling everyday with worsening disability but can still smile and in the words of Winston Churchill "keep bx&&ering on".

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  9. WTF are all these comments regarding Role Models and if someone "50+" looks great on the outside. I have 16 New Brain Lesions that have developed within the last 10 months and my latest MRI SCAN showed the Lesions are now traveling down my spinal cord at C1-C2. I have had Epilepsy for over 2 decades but never have I not been able to swallow, slurred speech, cognitive problems with 158 I.Q., Vertigo like I've never seen even at my worst moments Drunk OUT of my mind (only I haven't had a drink of alcohol in over 15 years. My eyesight is blurry on the right side. I can barely hear from the same side, I learned to read lips more often than I thought, colors run together like a Salvador Dali painting. I have always been an avid reader and at least 2+ times a week I cannot recognize the English language or even a letter at a time. It literally looks Greek to me or like hydrogriphics and I thank God I have the f*cking ABC song still in my head others I would have no clue what the letters of the alphabet are. I may look good on the outside but I'm losing my mind.
    I hate when people judge WHAT THEY CAN'T SEE.

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