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 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