Guest-post: MS mindset

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Many people with MS experience cognitive difficulties (poor concentration, trouble remembering, “cog fog”…). We know quite a bit about how these difficulties play out on formal tests that psychologists use. But we are less good at understanding the experience of people with MS with cognitive difficulties.

There are a number of questionnaires that report cognitive difficulties that have been designed for people with MS, and others which have been suggested that might be useful for people with MS. The point is that it will probably never be possible for every person with MS to be offered a cognitive assessment. Some of us are working towards making this happen (see the BICAMS initiative). But we have to be realistic about the current situation.

We are trying to find a questionnaire that a person with MS could fill in, which could tell any health professional something useful about that person’s experience of their cognition. This could help the nurse or doctor present health information in a helpful way. It could flag up cognitive difficulties to health professionals and trigger them to monitor the additional risks that cognitive difficulties bring (poor disease management, including medication adherence; increased risk of falls and driving accidents; decreased involvement in life generally, including employment difficulties. I don’t want to sound too gloomy here. But if we are to make progress we have to have information. This is our ammunition in the fight for better services.

If you would like to help, are a person with MS and can spare 30 minutes, please fill in our online survey.

Also please pass this on to anyone else that you think might be interested.

This study is the MSc Clinical Psychology thesis project for two students at Royal Holloway, University of London, where I work. Their names are Tabby Mahoney and Nathalia Bosoko.

If you would like more information about cognition and MS, you could visit the MS Trust’s website.

You could also look at the books by Jeffrey Gingold, who is an expert MS patient advocate:

“Facing the Cognitive Challenges of MS”

“Mental Sharpening Stones: manage the cognitive challenges of MS”

These are available on Amazon and some of the profits go to MS charities.

Jeffrey has also recently done a Webinar, “Facing and Managing the Cognitive Challenges of MS”, which you can watch on YouTube.

If you have any questions about the survey or would like to help us with our work on cognition in MS, please get in touch (d.langdon@rhul.ac.uk). I have to ask for your understanding, because this is a busy few weeks in the university, and it might take me a week or so to get back to you.

Thank you.

Dawn Langdon

About the author

BartsMSBlog

3 comments

  • And where does HSCT fit in this? Even if it does not seem to improve EDSS in non/less inflammatory MS, it does appear to stop the progressive rise in EDSS.

  • I have MS and have zero help with this. I’ve filled in the questionnaire, and will take part in anything else that may help you help us.

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