Tuesday, 14 February 2017

#ThinkHand: viewing disability through art

Could the state of your toenails allow us to determine how disabled you are? #ThinkHand #MSBlog

It has come clear me to me over the last week that the ability to cut your toenails, or not, may be a very good integrator of MS disability. To raise awareness over this issue I want to launch an 'art project'. The aim of the project is to continue to raise awareness, as part of our #ThinkHand campaign, about the importance of arm and hand function for pwMS. I want to collate a series of pictures of the toenails of pwMS and to relate it levels of physical disability. 



To participate please send us a picture of your toes, with some brief details about your MS and yourself. The pictures will be anonymised and only used as part of our #ThinkHand campaign. 



Please send  the following information with your picture to bartsmsblog@gmail.com

Sex: M/F
Age:
Disease duration:
EDSS:    (if you don't know your EDSS you can estimate it using our online calculator)
Country
Are you able to cut your own toenails?:
   5 - Yes, easily without help
    4 - Yes, independently, but it takes longer than in the past 
    3 - Yes, independently, but it takes too long so I often get them cut by someone else
    2 - Yes, but I need help
    1 - No, I can't cut my in toenails
    0 - N/A, I have always had someone else cut my own toenails
Biography:  (this is optional please keep this brief)

Thank you

ProfG, the Cheerleader for #ThinkHand

35 comments:

  1. This is utter nonsense

    ReplyDelete
    Replies
    1. It is not nonsense if you can't cut your own toenails.

      Delete
    2. perhaps AnonymousTuesday, February 14, 2017 8:36:00 am was referring to the idea that one uses toenail pictures as a marker of disability.

      while AnonymousTuesday, February 14, 2017 8:36:00 am may have a point, i'm not sure i agree that it is nonesense (though i think other factors, such as economic resources do impact on the state or look of toenails or general toenail care)..

      AnonymousTuesday, February 14, 2017 9:45:00 am has a point too.

      Delete
  2. Toenails might show ridges or discolouration. Which might be caused by the immune system, infection, poor blood circulation or steroid use.
    So our toenails might reveal some information.

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  3. Set up a WhatsApp group for this, Professor G. It's more secure, instant and less hassle.

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    Replies
    1. I took a photo with my phone and shared that photo using the "share"->"email" button.

      Delete
  4. My 76-year-old dad does mine. I am 38 and EDSS 6.5 to 7. I have PPMS and have had it since 2006.

    Does that help in any way?

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  5. Sorry, I think this is just silly. Another bandwagon going nowhere. I know someone with MS who gets them done by a chiropodist on a regular basis.

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    Replies
    1. What's the cost? Apart from it being a marker for loss of independence.

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  6. Time to get back in the lab Prof G. We are not here to satisfy your crusty foot fetish. EBV causes MS and you need to do the research to do it and address it. No more silly photo ideas.

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    Replies
    1. What about people who have negative EBV titres? What about people like me who had mono but CMV mono? I almost died from it. I'm quite certain that was a huge factor in me developing MS. Do you think only EBV causes MS or could it be other viruses (or bacteria-- Rocky Mtn Spotted fever, Lyme) that could cause it too?

      Delete
  7. I kind of think that cutting my nails is the least of my problems - it is a task that can be delegated after all. Worse is constant tiredness, not being able to plan. no energy to do things healthy people my age do, not being able to do my job, having to reduce the number of hours at work etc.

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  8. Come on team - I can cut my toenails fine, but need to pause about every 20m when walking. This toenail thing is not any kind of an indicator. I would say this is the product of an idle mind, but I know that's not the case at all. Just more circumventing the real questions needing answers?

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  9. When we hosted our #ThinkHand stand at ECTRIMS and MS-Life we asked people to list a hand function that was important to them. One of the functions that came up was cutting finger and toe nails. So some people value this function. Sure you can delegate this function to a third party to do, be it you partner, parents, carer or chiropodist. But that is what we want to prevent; your loss of independence. Losing the ability to cut your own toe nails is not something trivial, but a very important milestone on the MS journey.

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    Replies
    1. Please don't refer to MS as a journey. It's a life shortening disabling disease. I find it sad that this blog started 5-6 years and the focus is on helping a patient preserve the function of cutting their toenails! When I can't wipe my own backside I'll ending my time on this planet. There's no ambition in MS researchers. What about stopping the disease in its tracks? What about repairing previous damage? What about shifting a young adult from a wheelchair to two sticks? A cardboard 9 hole peg test and the ThinkHand! Logo are a poor return for the taxes I have paid and my donations to research. What about ThinkWalk, ThinkWork, ThinkLife. Am I ungrateful? You bet I am.

      Delete
    2. i'm so glad i am not the only one who feels an unusual mounting anger every time i hear the word 'journey' to describe ms or ms treatments.

      people who go on journeys can stop travelling. ms and its treatments are hell people endure because they have no other choice, not a friggin journey they decide to go on lol.

      ps. i don't have ms.

      Delete
    3. As I said it indicates nothing. MS is far too complex and variable a disease for such a crude "measurement". Dumbing down does not help. I'm giving this blog a break for a while.

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    4. Patronising post. Reminds me of the old radio series "does he take sugar?". What about some photos of bed sores? Or a leg in spasm? Have you any idea what it's like with this disease? I was a human before MS came along. I expected the 21 century medical profession to help. The idea that I should be grateful for still being able to brush my teeth, change my catheter, or make a cheese sandwich, is almost farcical. If all neuros can do for MSers is prolong they can cut their toenails then we live in a very sad world. Might as well sack all the MS neuros and let MSers have a nice cruise around the med.

      Delete
    5. I like ThinkWalk, ThinkWork, ThinkLife :-). Set bigger goals and you may achieve something reasonable.

      Delete
    6. I'm giving this blog a break for a while

      Come back soon or you'll miss my next "theme of the week".

      Maybe I should post DrDres abusive rant based on trainspotting...think this, think that

      Delete
  10. Unlike some of the others, I think the ability MS disability"

    But we don't need that unpleasant picture in the Featured Post in the left margin.

    Please remove it

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  11. I'm angry about this post. Sounds like Prof G has too much time on his hands. I agree about the misuse of the term journey. "Prof G goes on a journey through Africa to revisit his homeland - South Africa". That's good. Peter's MS journey has taken him from EDSS 5 to EDSS 8 in less than a ear and he is now very disabled." That's not good. That's not a journey - it's an ordeal. God to rush off as toe nails need cutting and (if my hand operates as intended) I might clean my ear with an earbud!

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    Replies
    1. Prof G's tube map that represents MS as a journey dates back to 2012. Why has it taken you so long to get angry?

      http://www.slideshare.net/gavingiovannoni/giovannonis-holistic-approach-to-ms-ver-21

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    2. The latest version to July 2016.

      http://www.slideshare.net/gavingiovannoni/holistic-approach-ms-version-60

      Delete
    3. The tube map graphic is crap. How does it help me? Just exposes me to all the horrors of MS. Doesn't give me any hope of better times ahead. How does it help you? It's cleaver, but I can't see how it helps.

      Delete
    4. The tube map helps me. I can see the factors that Prof G acknowledges impact on MS.

      Delete
    5. I love the bit of the Tube map that is still under construction. It gives me hope. I am looking forward to ageing naturally.

      I think the analogy of a journey is very apt. It brings some calm and order to an otherwise chaotic disease.

      Delete
  12. Imagine being on natalizumab a drug that has been shown to protect upper limb function, but unfortunately it was started too late to save your lower limb function. It was started after a major spinal cord relapse from which you failed to recover and as a result you started to use a walking stick outdoors. Despite being relapse free and feeling wonderful over the last 4 years you have gradually moved from needing one stick, to two sticks and you now need a wheelchair. At your next clinic visit your neurologist says that unfortunately that as you are now using a wheelchair we have to stop your natalizumab. Rules are rule, NHS England can’t afford to continue you paying for natalizumab as it has not been shown to be cost-effective in pwMS who are using wheelchairs. You plead, beg, and ask 'what about my arms', but despite your cries for help you have to stop natalizumab and you to face the future living with MS as it comes - warts and all. How long will it take you to move the next phase? The phase when you can’t transfer yourself from your wheelchair, you can can’t dress, bathe, go to the toilet, cut your nails, feed yourself, turn the pages of a book, type, write, take your own pills, insert contact lenses, put on makeup, catheterise yourself, wipe you bum, scratch your arm, shave, …...

    This is what the #ThinkHand campaign is about; we are trying to focus the MS community on how important hand and arm function are for people with MS. The problem we have is that nobody, but us and a small group of like-minded people, seems to care. Even people with MS don’t seem to care.

    Cutting your toenails is simply one way to visualise what it means to lose your arm and hand function.

    ReplyDelete
    Replies
    1. "Even people with MS don’t seem to care."

      You do not speak for me.

      I have PPMS and I really appreciate researchers spending time doing research to find safe, effective answers to MS progression, not engaging in pointless outbursts about what might - or might not - happen to a person with MS.

      I learned that such rants are emotionally unhealthy and don't help. If that would give you the impression that I don't care, that's your failing.

      Delete

  13. I do agree that the "journey" word is getting over worked. Big Brother was the beginning of the end for me followed closely by Masterchef. Reality shows consume everything eventually as US politics currently shows us,

    But let's get down to toe nails. Yes, they are an index. Things need to be measured to be talked about - at least to talked about in sentences of readable length.

    I can say "EDSS 8" (Expanded Disability Status Scale) or I can write a paragraph describing my current symptoms. I suppose it depends if you are being asked to read just mine or 100 others.

    Timed 25-Foot Walk (T25-FW) measures leg function and has been in the MS trials for yonks.

    9-Hole Peg Test (9-HPT) measures hand function and ought to have been but hasn't which is why #ThinkHands was genius.

    TNCI (Toe Nail Cutting Index) - who knows what doors it would open.

    Joking aside, humour and art are both powerful tools in the wide world. Only us MSers read this blog but a toe nail art exhibition might really catch some people's eyes. Perhaps the Tate Modern? Perhaps the PM might see it? Now I'm joking.

    I asked my wife, who is my Carer, to take my toe nail pic and she thought it would be yucky art show but I take that as a 'yes'

    SPMS 22yr, EDSS 8.5, T25-FW 0, 9H-PT 1:30 (Not properly scored)

    ReplyDelete
    Replies
    1. I suspect the Chapman brothers might be up for a toe nail art show ;-)

      Delete
    2. Incidentally I looked at the Underground map (http://www.slideshare.net/gavingiovannoni/holi stic-approach-ms-version-60)and thought it was brilliant. Different colours for different lines (of enquiry...)

      Father of another mouse doctor

      Delete
  14. One of patients volunteered to me on Tuesday that although she can't cut her toenails anymore she is still able to file them with a nail file. It takes her much longer this way, but she prefers it as she can't afford to pay for a pedicure at the local nail bar. The human spirit when it comes to coping and getting by never ceases to amaze me.

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  15. For what it's worth, after decades of football and losing numerous toenails, numerous times, my feet suggest I'm morphing into a velociraptor. I need a Dremel to keep them in an even vaguely acceptable condition.

    ReplyDelete

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