Friday, 4 October 2013

MS dementia: converting the sceptical

Convincing the sceptical that MS is a dementia was easier than I expected. #MSBlog #MSResearch

"The following is my presentation that I presented at a small lunchtime satellite symposium yesterday. I was asked to define the window of opportunity to treat MS and used my dementia campaign to get attendees to sit up and take notice. At the opening of the session not one person agreed with me. However, by the end of the session I had convinced the vast majority of the audience that MS is a dementia; thankfully a preventable dementia."

"These slides are self-explanatory and take you through some of the criteria we use to define a dementia. Please note the stereotype of someone with Alzheimer's disease, i.e the little old lady in a care home unable to recognise her family, does not apply to MS. The dementia in MS is more subtle, but is still devastating to the individual, their family and society. At present we don't have a treatment for MS dementia, but early effective treatment should delay and hopefully prevent it from occurring."


9 comments:

  1. Beautiful sides with a strong message.
    Still dislike the term "Dementia" or "Preventable Dementia". Cognitive Impairment sounds better, but can't we come up with another more MS specific term.

    How about "MS Dementia"

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  2. You make the point well (without hearing your words!) that people can be helped to reduce the level and impact of this aspect of Ms, if treated early enough. Hopefully the message will be seeping through to decision makers, PwMS, neurologists etc. Is there anything that can be done to improve the prospects (in this regard) of people with progressive MS? If not, this is another area where therapies are urgently needed.

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  3. Does anyone know what percentage of patients with MS will develop dementia? How do you recognise dementia?

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    Replies
    1. In natural history, or untreated populations, it would be the majority (>50%). With treatment this will be lower, or will occur at a much later stage of the disease.

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    2. How much later? How do we recognise dementia?

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  4. Prof. G I note that one of your slides discusses laquinimod. Have you seen the news that TEVA are doing a trial of laquinimod in PPMS?

    http://finance.yahoo.com/news/teva-says-oral-ms-drug-145553566.html

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    Replies
    1. Yes, I have heard about the PPMS trial, but don't any specific information about it. If more information comes available I will let you know.

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  5. Depressing stuff for a person with MS. Please come back with some good news about neuro protection and repair. The only benefit I can see from MS dementia is that I won't be able to remember how this disease ruined my life.

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  6. I think dementia is an accurate enough term. Not everyone has it to the same degree and it can also vary from day-to-day or over the course of a day but, yeah, if it fits the definition of dementia, then that's the word to use. I didn't care for the image of an MSer peeing her pants! Poor girl needed some Tena. Also I don't know if it's a preventable dementia if it is already present at baseline? You can prevent it from getting worse (an excellent goal) but not undo what has already been done.

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