Monday, 1 October 2012

Malu Dreyer - MS Champion

MS in Politics. From the Westwing to Former West Germany


We had President Bartlet in the Westwing, Michelle Obama's dad and Mitt Romney's wife Anne with a link of MS to politics. We can now expand this to Malu Dreyer. She has become the Designated Rhineland-Palatinate State Prime Minister, a head of state as Germany is a decentralised country. She takes an active role on issues invlving Labor, Social Affairs, Health, Family and Women. She is an impressive politician who has MS and sometimes uses a wheelchair. We also have had MP David Maclean as wells as other Msers in Politics such as Fiona Mactaggart MP. Maybe you can get involved in politics and help make a change for people with MS.

                                                 Malu Dreyer

Did you know that there is the All-Party Parliamentary Group for Multiple Sclerosis who aim To promote the interests of people affected by MS.  Now you know who to lobby

Chair               Lord Dubs
Vice-Chairs     Stephen Lloyd, David Amess
Treasurer         Pamela Nash

GOVERNMENT
James Gray – Con
David Amess – Con
Bernard Jenkin – Con
Chris White – Con
Lord Bowness - Con
John Hemming – LD
Stephen Lloyd – LD
Annette Brooke – LD
Lord Jones of Cheltenham – LD
Graham Brady - Con

OPPOSITION (NOT IN GOVERNMENT)
Catherine McKinnell
Joe Benton
Paul Blomfield
Tom Blenkinsop
Richard Burden
Michael Dugher
Pat Glass
Clive Efford
Pamela Nash
Lord Dubs

For Non-UK readers. Con does not mean criminal/convict but Conservative party and LD is Liberal Democrats and not Linkage disequalibrium :-)




18 comments:

  1. Anonymous said...
    It is very much of interest. I've said before on here that (on what is otherwise unarguably the best source of MS information and commentary on the entire web) there is sometimes a lack of positivity and recognition that, whilst frequently a challenging - and occasionally a devasting - diagnosis, MS is nothing like the end of a productive, fulfilling life. There are many with MS - sometimes with quite severe MS in terms of EDSS - who go on to achieve great things. There are also many with MS for whom the MS is a challenge/nuisance but whom otherwise live their lives normally as before (work, walk, exerise etc). Without going into the EDSS debate (fails to account propery for cognition and fatigue) a recent survey of natural history studies by Tremlett showed that average time to cane (EDSS 6) for MS was as much as up to 32 years in more recent studies (Nova Scotia) with the oft-quoted 15 year average being the worst - and oldest - study out of 6 (London Ontario). For RRMS onset it was 17-35 years with the 'average' across 6 natural history studies being around 25-30 years before a cane was required. That is without any reference to DMDs (most of these were largely/wholly untreated populations). DMDs almost certainly will further push those figures to even further lengths of time. Newly diagnosed people in their 30s can therefore reasonably (and statistically) expect to be able to walk without assistance until they get close to, or in, their 60's. That is not minmising the conditions or the many other wide and varied issues it causes other than mobility but sometimes that perspective is lost. Newly diagnosed people I speak to frequently expect to be wheelchair bound in a few years or even months and whilst, tragically, that happens on very rare occasions - it is not the norm. Lyon, BC, Nova Scotia and Lorraine France also all provided SDs which were quite small in range.

    Turning back to achievements by those with MS, there are many, many people in very senior positions with MS. Many of these we simply don't know about because they keep secret their MS - I know my neurologist treats a number of major 'high flyers' who keep their MS status a secret from colleagues. There are also many we do know about, for example just a random selection:

    David Maclean (Lord Blencathra) - former MP for Penrith until 2010 (diagnosed 1996). Now sits in House of Lords.

    Mark Lewis (lawyer for the victims in the NOTW hacking scandal) - diagnosed over 20 years ago.

    Courtney Taylor - Wide Receiver for BC Lions US footaball team (diagnosed 2008).

    Bill Bradbury - former Oregon Secretary of State (1999-2009 - diagnosed 1981).

    Clay Walker - musician

    Ann Romney - Future first lady?! (Ok - not a high flyer but someone diagnosed many years ago and doing really well).

    There are many, many more.

    The message is don't give up on yourself if you are diagnosed. Yes, you could suffer very badly but equally you might not and you might live a life relatively unchanged by your condition. Get on a DMD IMMEDIATELY to give the best chance of this, eat well, exercise when you can and live each day as best as you can.

    Sorry this is so long but I do think this kind of message is important. I nearly worried myself to death when I was diagnosed. I couldn't get through 1 minute of 1 day without having a panic attack about what would happen to me and my family. We were lucky to have built up a good standard of living but I was the sole earner and the idea we'd have to sell our beloved family home and live forever more on benefits - whilst my wife had to hold us all together haunted me. I was virtually suicidal just at the thought of what our future held. 10 years on, I'm still working in a hard, exec level job and we are living a wonderful family life. I realise that's not the outcome for everyone but if someone had told me that this was a realistic outcome 10 years ago, they would have transformed my life for those early years of anxiety.

    Monday, October 01, 2012 10:36:00 AM

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  2. Anonymous said...
    I missed a couple of people who I thought also deserved mention!

    Fiona MacTaggart - Current MP for Slough (diagnosed c. 7 years ago)

    Neil Cavuto - Fox TV Anchor - diagnosed in 1996 (now SPMS).

    I hope this post will be taken in the spirit it is meant (i.e. not a dig at those who aren't doing so well) but a source of positivity for those facing anxiety and uncertainty in their lives right now due to MS.

    Monday, October 01, 2012 10:47:00 AM

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  3. Anonymous said...
    I agree with most of what the previous poster said.
    Please see this quote from Michael J Fox. Of course he doesn't have MS but Parkinsons has affected him badly
    "If you get caught up in [thinking about] the worst case scenario and it doesn't happen, then you've wasted your time. If you get caught up in the worst case scenario and it does happen, you've lived it twice."

    taken from http://ms.about.com/b/2010/10/06/michael-j-fox-a-member-of-the-club.htm

    Monday, October 01, 2012 10:54:00 AM

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  4. Anonymous said...
    Great quote, thanks.

    Monday, October 01, 2012 12:21:00 PM

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  5. The anon above lives in cloud cuckoo land!

    If this disease was so benign why are Prof G and Prof B doing all this work.

    Average live expectancy is c.10 years less.

    If you're view of the disease was true, there'd be no wheelchairs or mobility aids. You've got it wrong. Go to your local ms society club and tell them it's not so bad. Tell the relatives of Jacqueline du Pre, J K Rowling's mother etc etc that it's a slow benign disease.

    Some don't have it quite as bad, but if you attend MS Life you'll see a good selection of people who are severely disabled. EDSS 10 is death - and this is a progressive disease. Spend a day with Prof G at this clinic and then claim that you only need a walking stick after 25 years!

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  6. "If you get caught up in [thinking about] the worst case scenario and it doesn't happen, then you've wasted your time. If you get caught up in the worst case scenario and it does happen, you've lived it twice."

    I couldn' think of a more appropriate quote for MSers. Many talk of their MS being a 'gift'. Clearly, an unwanted one in real terms but what they mean is it forces them to squeeze the most out of every day and they live a better life as a result. Many 'well' people drift through life thinking of nothing more than the day to day stresses and suddenly realise at some point that it has passed them by. I believe those MSers who adapt to living in the present do significantly better than those that dwell on what my come to be. That's especially the case when looking at the stats above which suggest that the worst case scenario is actually really quite unlikely to happen to them...

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  7. "Spend a day with Prof G at this clinic and then claim that you only need a walking stick after 25 years!"

    The point is that the natural history studies take account of ALL MSers. Prof G's clinic, by definition, is largely going to see those at the worst end of the curve (those doing really well don't go to clinics). For every person at Prof G's clinic or Jacqueline Du Pre, there will be one - like Fiona MacTaggart in fact, referenced above - who has nothing more than an occasional numbness in her face and mild optic neuritis and nothing more. The population studies take into account a much wider base (which the mortality studies arguably don't). Even the recent study into benign MS changing over the years that Prof G posted back in August showed 75% under/equal to EDSS 3 at 10 years and still almost 25% at 30 years. That's 1 in 4 MSers still no higher than 3 on EDSS scale (which represents mild disability and no mobility issues at all) 30 years post-diagnosis.

    That's not to say it is a bengign disease - anything but. If only 10% end up severely disabled, that's still some 250,000 people and it has a significant impact on many more people's quality of life (I, for example, don't want to need a cane to walk in 15 OR 35 years!). The point was that it is an exceptionally varied condition - like diabetes or hypertension. It can be mild and easily controlled with diet, exercise and drugs or it can be life destroying. The fact is could be the latter shouldn't cause people to assume it WILL be the latter. Some of the above important population studies simply put the 'risks' into a bit of context to counter-balance the popular media image of people with MS who can't walk, talk or eat (which is actually a tiny, tiny percentage of total MSers).

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  8. Like Anon says, above, I didn't need a cane until approx 26 years after dx, and even now I can walk a few steps in a 'safe' environment, without one. I had the opportunity to return to work full time last year, at 30 years after initial episodes and 3 years after dx as SPMS.
    I consider myself fortunate - I think there are many more people like me out there, who just quietly get on with it.

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  9. Every time there is some encouriging news or example an individual steps up (the same one each time I ask myself?) who cites du Pre and JK Rowling's mother to spread worst-case scenario. The time has moved on. Nobody talks about Rock Hudson or Freddy Mercury when talking about HIV now. Accept the fact that MS is not a life sentence anymore for the majority of MSers. We are doing just fine (not completely healthy but just fine) & the German politician is just one example of many.

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  10. Gosh, I must be so unlucky to be 29-years old and now in a wheelchair after three years of diagnosis.

    I hate posts like this because it doesn't reflect my disease, nor in fact the disease course of many of the MSers in Liverpool I've come across. It almost whitewashes what we're going through.

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  11. She may have been in a wheelchair 3 years post diagnosis. But things can get better as much as worse!

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  12. Agree with many of the annoyed comments above. If MS is such an innocuous disease, then why do we have to invest any further? If the new DMDs are as good as a cure, then why not hang your hats and find new jobs?

    Such a bad way to start the week having to read stuff as misleading as this post and its related comments. I expect better from this blog.

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    Replies
    1. Where does it say MS is innocuous? All the post does is remind that it is a disease of huge variability from completely asymptomatic (many examples of MS found on autopsy or MRI of a twin without any symptoms) through to incredibly aggressive and even fatal. The typical disease course is - in those studies - c.25-30 years to cane but it can be anything from instant wheelchair to still running marathons at 70. That variance doesn't make it 'innocuous' - cancer can be anything from a very minor, easily treated disease through to aggressively fatal - that doesn't make it innocuous. Don't forget the poster from Liverpool - the MSers you see are going to be worse than others who don't even share that they have MS or spend time with other MSers. That's not minimising what anyone else is going through but, as I said, for every 'wheelchair in 3 years' there'll be a no disability at all MSer; the latter almost certainly doesn't spend much time on MS blogs or forums and so the worse cases get disproportionate attention.

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  13. I agree with the positivity but what I find frightening is the many examples of people with MS who get crap support from their neuro team. I started my MS 'journey' with Prof G ans it was his words that took me from a near-suicidal state of mind to a 'get on with life' attitude. But the more I read, the more I realise that the care I have received is not the norm. Mousedoctor and team - please note!!

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  14. Please note

    I did not write any of the above comments I copied the first 4 Anon posts from the initial post that prof G posted this morning.

    "Mousedoctor and team - please note!!"

    What do you want us to note?
    That Prof G is a neuro+ now NOTED or that many people get a raw deal from their neuros....NOTED.
    You just need to spend a day at MS Life talking to MSers to know that.


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  15. I very much appreciate the first post here. I'm fairly newly diagnosed and have been horribly freaked out by it. I need those little pep talks from time to time.

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    Replies
    1. One thing to keep in mind. If its 25 years 'to
      cane' - just think where medicine will be by then! Whether we ever completely cure MS or not, DMDs will be in a different league to now; neuroprotection will be standard
      and, I believe, we will be able to at least promote/increase remyelination. Drugs for symptom management (eg fatigue) will also be infinitely more effective. Think of science more generally - exoskeletons (which are already becoming a reality) will be standard for those with walking difficulties. If you're newly diagnosed, get on a new DMD (BG12 or Alemtuzumab) as soon as they are available to preserve as much CNS integrity as possible and take advantage of all science's advances in the decades ahead. I truly believe very few newly diagnosed MSers in 2012 will need a wheelchair or even a cane in the future, provided they don't have an especially aggressive course.

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  16. I'm geetha from India.I'm also suffering because of M S.I can't walk properly.suggest me medicine which get relief.

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