Monday, 15 August 2016

#ThinkHand: ECTRIMS booth

Good news is we have been allocated a booth at ECTRIMS for our #ThinkHand campaign.

"Your response to the survey has been excellent, but would like even more responses to make our ECTRIMS poster as definitive as possible."



"We are also collecting additional ideas from you on what hand function means to you as a person with MS. What functions don't you want to lose if your MS progresses to involve your arms and hands. Don't be shy we need your contributions. I envisage us developoing a hand function item bank with hundreds of hand functions included. You will then be able to define your own ABILHAND PROM that is customised to you."


"Finally, whilst on vacation last week I started to read 'The Hand', by Neurologist Frank Wilson. In the book he describes how the use of the hand shapes the brain, language and human culture. The book is quite technical and assumes a lot of background knowledge; so not an easy read for the novice. I was, however, very fortunate and privleged, to be taught the evolutionary aspects of the anatomy of hand by Professor Philip Tobias in my second year at medical school. Prof Tobias was a paleoanthroplogist and a truly inspiring lecturer. What he didn't teach me, however, is the link between hand function and language. It is clear that if you can't use your hands you lose some language function; this is something that is not covered in the ABILHAND questionnaire above."

"What the last few year's have taught me is how important hand function is across so many dimensions of life. As a community we need to do as much as we can to protect hand function in pwMS. Finally, what do you think of these 3D renditions of the hand? You can play with them!"



"Thank you!"

3 comments:

  1. Loss of hand function is really frightening. When I first presented with MS I had a host of symptoms one of which was hand tremor in my dominant (right) hand.

    My thumb still goes off now and again.

    When one considers sensory function and that of physical functionality loss of hand control is extremely frustrating at the least and can be extremely debilitating.

    Ability to drive a car - Auto's exist where all function is hand accessible.

    Things as simple using a remote control can become a problem (was for me).

    Cooking, cleaning, drinking, eating, even opening a can be it w/ can opener or pull tab. To eat cereal I had to use this giant bowl just so as to not have cereal flying all over the place.

    At the time I started trying to favor my left hand and let me tell you thats an experience in its own right. While it sounds like it should be simple getting fine motor and positional coordination is far from easy.

    One can loose sightedness, ambulation, auditory and still be able to function as many people do everyday. Loss of hand control(s) is perhaps more limiting than than all of these combined.

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  2. Apologies for going anon for this one.

    Managing personal care is essential to your list. Once you lose sensation and/or co-ordination, inserting a tampon becomes rather more exciting than I'd like. As for glycerin suppositories to treat constipation... I'm sure I'd find the slippery little feckers tricky enough if my hands were fully functional, in my present state, well, it's a good job I've retained my sense of humour.

    In all seriousness, lots of things on your list can be managed; you can buy your hazelnuts ready shelled, ask a friend to open a bottle, a neighbour to change a lightbulb and use voice recognition to make a phonecall or write a letter. But none of that will help you transfer from chair to toilet and wipe your bum. Your hands are your independence and the loss of them must be devastating.

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  3. What happened to all the suggestions that people made last time? To give myself some practice on the keyboard and mouse, I have amalgamated your list from above (the numbers are from your list), the suggestions people made last time and the suggestions they have made this time. I have grouped them into sections so if people have ideas, they can check more easily if they are already on the list.

    Personal Care:
    12 Washing one’s face
    9 Filing one’s nails
    18 Cutting ones nails
    22 Combing one’s hair
    54 Squeezing toothpaste from a tube onto a toothbrush
    56 Brushing one’s teeth
    45 Blowing one’s nose
    35 Brushing one’s hair
    30 Washing one’s hands
    Wiping one’s bottom
    Using an electric toothbrush
    Inserting a contact lens
    Putting on lipstick
    Scratching an itch
    Holding and using bar of soap
    Applying make-up
    Using a spray (deodorant or perfume)
    Using nail clippers
    Inserting a tampon
    Using a manual razor
    Using an electric razor

    Dressing, dealing with clothes and shoes:
    15 Buttoning up trousers
    2 Pulling up the zipper of trousers
    40 Buttoning up a shirt
    47 Fastening the zipper of a jacket
    48 Fastening a snap (jacket, bag …)
    32 Winding up a wristwatch
    55 Taking a coin out of a pocket
    Putting on a pair of tights
    Feeling the difference between things in a pocket
    Pulling up underpants
    Tie shoelaces
    Tie a ribbon
    Putting on a bra

    Round the house:
    11 Closing a door
    21 Turning on a lamp
    14 Turning off a tap
    19 Turning on a radio
    16 Dialling on a keypad phone
    33 Turning a key in a keyhole
    34 Turning on a television set
    37 Ringing a doorbell
    10 Grasping a coin on a table
    25 Replacing a lightbulb
    Stroke a pet
    Swat away an insect
    Use TV remote control
    Cleaning kitchen surfaces
    Cleaning the loo

    Eating, drinking and cooking:
    42 Cutting meat
    43 Eating a sandwich
    50 Shelling hazelnuts
    38 Placing a glass of water on a table
    39 Drinking a glass of water
    17 Opening up a screw-topped jar
    27 Making a pancake batter
    28 Spreading butter on a slice of bread
    23 Unwrapping a chocolate bar
    5 Using a spoon
    3 Peeling an onion
    7 Picking up a can
    8 Taking the cap off a bottle
    13 Peeling potatoes with a knife
    20 Tearing open a packet of chips (crisps?)
    Putting a pan of water on a cooker
    Pulling plastic top off milk container
    Pulling foil off margarine tub
    Pouring boiling water out of a kettle
    Using a fork
    Putting a screw top on a bottle
    Slicing a loaf of bread
    Holding a full glass of liquid
    Stirring something for 20 minutes
    Opening a ring pull can
    Eating cereal out of a normal size bowl without spillage

    Writing, Reading and Drawing:
    52 Opening an envelope
    49 Writing a sentence
    36 Drawing
    31 Using a stapler
    1 Turning the pages of a book
    4 Sharpening a pencil
    46 Wrapping up a gift
    44 Handling a 4 colour ballpoint pen with one hand
    29 Counting bank notes
    Signing one’s name

    Computer and smartphone:
    53 Using a keyboard to type
    26 Inserting a disc into a disc drive
    Using a computer mouse
    Put in the code to unlock a smartphone
    Google something
    Order groceries on a computer
    Write an email
    Take photo using phone or camera
    Swiping to answer a smartphone

    Leisure activities:
    Moving chess pieces
    Moving draughts pieces
    Playing snooker
    Playing video games
    Doing jigsaw puzzle
    Painting
    Fitting and unfitting lego pieces together

    Using Tools:
    6 Using a screwdriver
    24 Hammering a nail
    51 Screwing a nut on
    41 Threading a needle
    Taking valve cap off a bicycle wheel
    Pinning fabric together

    Hand Functions Connected with MS or medication in general:
    Inserting a urinary catheter
    Using a urinary dipstick
    Wheeling a manual wheelchair
    Using the controls on an electric wheelchair
    Joining FES electrodes to leads
    Putting FES electrodes on skin
    Using FES controls
    Popping pills out of plastic strips
    Undoing bottles with childproof locks
    Injecting oneself
    Inserting glycerin suppository


    Driving a Car:
    Steering
    Changing gear
    Using handbrake

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