Friday, 27 May 2016

SurveySpeak: routine cognitive testing

Wow MSers want routine annual cognitive testing. #SurveySpeak #MSBlog #MSResearch

"The following are the results of yesterday's survey. It is clear that the majority of you want to be offered cognitive testing. Professor Dawn Langdon will be happy. Regular cognitive testing may bring one of the hidden problems of MS out into the open and reinforce the observation that MS is a preventable dementia. Ignoring the impact of MS on cognition could be referred to as the 'ostrich syndrome'."



19 comments:

  1. If routine cognitive testing were to be offered as part of disease monitoring, would we eventually see nootropics or cognitive enhancers being prescribed for disease management?

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    1. It might give an added impetus for the need to develop and prescribe neuroprotectants to hopefully stop these problems developing in the first place. It's a hard slog at the moment.

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    2. In the absence of currently available neuroprotectants, would it be worth researching the use of nootropics/enhancers for those already experiencing cognitive decline?

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    3. I'm not sure about that. Working neurons harder that already might be under stress and prone to dying is to my mind a little worrying but I'm no expert on mode of action of these drugs.

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    4. Donepezil/Aricept is used in Alzheimer's & Modafinil is used in Parkinson's (in the States, I believe). Both are cognitive enhancers used for neurodegenerative disorders.

      Anecdotal article: http://www.theguardian.com/lifeandstyle/2013/may/03/brain-enhancing-drugs-mj-hyland

      I can only find one study of cognitive enhancers in MS: http://www.ncbi.nlm.nih.gov/pubmed/22960434

      I'm wondering whether it's something worth exploring further?

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    5. There is also Souvenaid which is being touted as a supplement to improve synaptic connections for those with Altzheimer's Disease and "appears" to slow down cognitive decline. Any thoughts about using in MS?

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  2. It really is something that is ever so difficult to self-assess.

    I am 53 (and gorgeous! LOL) - My fiance' was the one really noticed my cog/memory slipping. When one gets older there is a natural sort of slow down, in thinking, memory recall. As a caregiver of the elderly myself I see this all the time.

    Since MS ripped away much of my multi-tasking (round robin) I've had to grow accustomed to singular tasking focus. It just happens, naturally over time at least with my MS. Sure, I noticed that.

    But because of THAT in combination I really did not notice my cognitive slide nor so much the memory slide. My fiance' who has a memory like ROM chips (even can remember all his teachers and their faces!) and is a Logicasaurus Rex noticed it.

    So... Kicked me into gear. Strategy based video games (SimCity, Civilization, Chess, Crazy Machines, Silent Hunter (WW II Submarine Simulator), MS Combat Flight Simulator III and Janes WW II Fighters)... All kick on different aspects of cognition, strategy... The simulators requiring real-time cognition / actions. Atop that, started me learning computer programming first with Visual Basic, now with PHP.

    Started me on multi-processing which is essentially consciously do many things at once .vs. multi-tasking. He says, its how our brains actually work. We just dont consciously engage it. He taught this years back to middle school students. The results were C and D students getting A's and students already with high grades just breezed the work.

    I can say its all made a huge difference.

    Having a professional assessment of cognition and memory is the "Kick in the bum" to do something about it. Very very hard to self-assess.

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  3. "MS is a preventable dementia"

    With my experience of PPMS, I do not see how this statement can (yet) be true. There are still no true therapies of high efficacy and with a risk level which is acceptable to me available. Unless my medical team are lying to me through their teeth and my reading on the topic has been too patchy.

    In light of this, and given I feel that - through my science degrees and language studies - I have had enough of cognitive testing for a lifetime, I personally would not submit myself for cognitive testing in relation to impact of MS. I still have a huge appetite for learning, but I'm sorry to say that I'm fed up of exams, tests, assessments, and I've been poked and prodded enough in general, to no avail.

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  4. You should ask what country the MSers are in, as in my experience it's hard to get on disability in the US if it's just functional/walking.

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  5. What are the cognitive tests that could be prescribed?

    I made a cognitive assessment, in October 2015, with a neuropsychologist, on their own; my neuro had not prescribed but I had read several articles on cognitive decline and dementia caused by MS...

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  6. I came across the MS Trust StayingSmart website a while ago, seems helpful and author is Professor Dawn Langdon.

    "Staying Smart is a website designed for people who want to know (or know more) about how MS can affect thinking.
    http://www.stayingsmart.org.uk/about/

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  7. There is a German cognition exercises website, which I find quite amusing for an idle moment:

    https://www.dmsg.de/ms-kognition/index.html

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  8. danke, and do I get extra points for working out what do although i don't speak a word of German?

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  9. Gavin has asked me to post something about MS Cognition
    Many people with multiple sclerosis will experience difficulties with memory and concentration and some things will be particularly difficult. A lot of the impact is on information processing speed, which can be thought of as reduced “band width”. Some simple strategies can help – you probably have some of your own.
    1 dividing attention between several inputs is harder and can mean you miss things. So take steps to reduce this, which could include
    (i) If you work in an open plan office, arrange for your desk to be moved to a corner or another quiet spot
    (ii) Turn off the voice on your satnav, so you can concentrate on the road and the route. If you are driving with a passenger, get them to read out the route but stay silent when the road situation is complicated and requires your full attention. Even if you miss a turning, the satnav will soon offer an alternative way to your destination
    (iii) If you are having an important conversation with a friend or family member, turn down the tv or radio or turn it off
    (iv) If a health professional is speaking with you in a busy area, ask to be seen in a quiet room
    2. remembering to do things can also be harder. So again take steps to support remembering, which could include
    (i) keep a diary of appointments and activities going. Also record when you forget to do something so that you can flag it every week in the future. Try to schedule household tasks or social engagements at a regular time so that you can flag them and have them automatically scheduled in your diary
    (ii) record reminders of scheduling, so even if you don’t have time to make the diary booking when you have the conversation about it, you can pick up on a key word in a list e.g. “restaurant”, “tablets”, “babysitting” and then action the scheduling in your diary when you have a moment to spare.
    (iii) Keep your photos of events and experiences filed by people’s names, so when you are about to meet them again you can either flick through the photos just before you see them or you can flick through the photos together.


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  10. Here is more info about MS cognition

    As far as working with health professionals goes, some of us feel that an annual cognitive assessment from the start is the best way forward for most people. I see most of those who have answered the survey on this blog agree. The NICE guidelines 2013 advise this should happen. An annual assessment provides a baseline for future comparison and helps identify the unlucky few for whom cognitive difficulties are part of their MS experience from the start. An annual cognitive assessment also provides an opportunity to discuss cognitive aspects of MS, instigate/review brain health activities to maintain cognitive function, and initiate other support as appropriate. Annual cognitive assessment can also help monitor disease progression and may alert neurologists to investigate other disease parameters for evidence of disease activity which could potentially lead to a recommendation for change of treatment. A discussion about annual cognitive assessment has recently taken place in Multiple Sclerosis Journal and the text is available to all:
    http://msj.sagepub.com/content/22/6/728.full.pdf+html
    http://msj.sagepub.com/content/22/6/726.full.pdf+html
    http://msj.sagepub.com/content/22/6/730.full.pdf+html
    If that is a bit heavy going, or you want stuff you can print off to give to family, friends, or employers, then for more information about cognitive difficulties in MS written for people with MS, see
    www.stayingsmart.org.uk
    To share someone else’s experiences of cognitive difficulties in MS, read Jeffrey Gingold’s two books: Mental Sharpening Stones: manage the cognitive challenges of multiple sclerosis (2008) and Facing the Cognitive Challenges of Multiple Sclerosis (2011), both available from Amazon for under £20 each.
    You might also be interested to know that there is going to be a free conference on June 29th at Royal Holloway which will discuss how NHS services can better address the needs of neurological populations, including cognitive needs, to which people living with neurological conditions are invited, register at https://communityneurology.eventbrite.co.uk. If you are reading this blog and you are not a person with MS, any health professionals and other interested organisations are also welcome. This is a chance to shape NHS services.

    Dawn Langdon PhD
    Professor of Neuropsychology
    Director of Health and Medicine
    Royal Holloway
    University of London
    Twitter: @Dawnlangdon

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