Good news is we have been allocated a booth at ECTRIMS for our #ThinkHand campaign.
“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.”
“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!”
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.
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.
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 face9 Filing one’s nails18 Cutting ones nails22 Combing one’s hair54 Squeezing toothpaste from a tube onto a toothbrush56 Brushing one’s teeth45 Blowing one’s nose35 Brushing one’s hair30 Washing one’s handsWiping one’s bottomUsing an electric toothbrushInserting a contact lensPutting on lipstickScratching an itchHolding and using bar of soapApplying make-upUsing a spray (deodorant or perfume)Using nail clippersInserting a tamponUsing a manual razorUsing an electric razorDressing, dealing with clothes and shoes:15 Buttoning up trousers2 Pulling up the zipper of trousers40 Buttoning up a shirt47 Fastening the zipper of a jacket48 Fastening a snap (jacket, bag …)32 Winding up a wristwatch55 Taking a coin out of a pocketPutting on a pair of tightsFeeling the difference between things in a pocketPulling up underpantsTie shoelacesTie a ribbonPutting on a braRound the house:11 Closing a door21 Turning on a lamp14 Turning off a tap19 Turning on a radio16 Dialling on a keypad phone33 Turning a key in a keyhole34 Turning on a television set37 Ringing a doorbell10 Grasping a coin on a table25 Replacing a lightbulbStroke a petSwat away an insectUse TV remote controlCleaning kitchen surfacesCleaning the looEating, drinking and cooking:42 Cutting meat43 Eating a sandwich50 Shelling hazelnuts38 Placing a glass of water on a table39 Drinking a glass of water17 Opening up a screw-topped jar27 Making a pancake batter28 Spreading butter on a slice of bread23 Unwrapping a chocolate bar5 Using a spoon3 Peeling an onion7 Picking up a can8 Taking the cap off a bottle13 Peeling potatoes with a knife20 Tearing open a packet of chips (crisps?)Putting a pan of water on a cookerPulling plastic top off milk containerPulling foil off margarine tubPouring boiling water out of a kettleUsing a forkPutting a screw top on a bottleSlicing a loaf of breadHolding a full glass of liquidStirring something for 20 minutesOpening a ring pull canEating cereal out of a normal size bowl without spillageWriting, Reading and Drawing:52 Opening an envelope49 Writing a sentence36 Drawing31 Using a stapler1 Turning the pages of a book4 Sharpening a pencil46 Wrapping up a gift44 Handling a 4 colour ballpoint pen with one hand29 Counting bank notesSigning one’s nameComputer and smartphone:53 Using a keyboard to type26 Inserting a disc into a disc driveUsing a computer mousePut in the code to unlock a smartphone Google something Order groceries on a computerWrite an emailTake photo using phone or cameraSwiping to answer a smartphoneLeisure activities:Moving chess piecesMoving draughts piecesPlaying snookerPlaying video gamesDoing jigsaw puzzlePaintingFitting and unfitting lego pieces togetherUsing Tools:6 Using a screwdriver24 Hammering a nail51 Screwing a nut on41 Threading a needleTaking valve cap off a bicycle wheelPinning fabric togetherHand Functions Connected with MS or medication in general:Inserting a urinary catheterUsing a urinary dipstickWheeling a manual wheelchairUsing the controls on an electric wheelchairJoining FES electrodes to leadsPutting FES electrodes on skinUsing FES controlsPopping pills out of plastic stripsUndoing bottles with childproof locksInjecting oneselfInserting glycerin suppositoryDriving a Car:SteeringChanging gearUsing handbrake