Hi first post on the forum. I have demyelination at C3 area of spine. Don’t yet know if MS or one off episode. Has left damage to hands - especially no postion sense, pins and needles, weakness etc. I have real difficulty writing and need to be able to do this for my job. Has anyone any tips for writing aids or techniques that may help? I am waiting for an occupational health referral but seems to be taking a while to get a visit. Thanks.
hi
sorry-i have no suggestions-just want to say i share ur stuggles re writing. i havent written since june-so miss it and knitting…
will follow ur replies…
ellie x
me again-wheres my manners?!
welcome to the site
ellie x
I haven’t being able to write for about 5 years and it is a pain, access to work helped with a support worker, contact them through your local job centre, they have OTs who will come out assess u are very prompt and have great advice. Presently trying to control my hand movement by trying to colour within the lines of my 3 year olds colouring in books! I can type with 1 finger ,maybe a form of keyboard would b useful.I now use my left hand instead of my right as I have more control with it.
Hello and Welcome to our happy gang. I to have trouble writing. Have you tried getting a rubber grip that enables you get a better grip, must be honest couldn’t get on with it. I find that the fatter the pen the easier it is, but the writing is still poor and people have trouble reading it. One day I wrote something down and went away came back to read it and couldn’t, also couldn’t for the life of me remember what I’d put, so I called my son over and asked him to tell me what it said. He had a look and said well you wrote it how the heck do you expect me to read it, because I can’t. Sorry haven’t been much help!!!
Janet
x
My sympathies. My writing’s terrible after various relapses that have affected my hands over the years - same sort of things as you describe. Fortunately for me, I can still type, although rather slowly - the downward pressure on the keys is doable - less fine motor control needed - and, while the position sense in the outer fingers of both hands is particularly dicey, there is enough muscle memory there to be just enough. But MS likes my hands, so I have thought a bit about what to do if/when there’s further trouble. Voice recognition software seems to be improving all the time, and that will be the obvious thing to do, I think, when typing is not longer possible either. I hate the thought of it, because that’s not the way I work, but these things are there to help. I don’t know whether that is something that might help you to do your job?
I don’t do paid work any more, so I don’t have that to worry about, but there were periods when I was working and could not use a keyboard at all and that was terribly frightening. In the end I did make a pretty good recovery from those episodes, and got back to typing more slowly but still faster than most people around me! It is sometimes hard to believe that it actually will improve, but with luck, even if this does turn out to be RRMS for you, restoration of function lost in an acute relapse can keep on happening over a long period, going in the right direction even if it is terribly slow process. So don’t lose heart. With a bit of luck, these problems will resolve in their own sweet time. I hope that, when they do, they never return. It is horrible for you even to be thinking in terms of getting an OT to help with this sort of thing. But you are absolutely right to address it dispassionately (on the surface, anyway) as just another work problem to solve. Good for you. With luck, nature and will do the job for you, though. FIngers crossed (so to speak…)
Good luck.
Alison
x
Many thanks for your comments -I am an English teacher so quite a vital part of the job!! I have bought a ‘ring pen’ which I have put a rubber grip on and that is allowing some writing. The forum here has been a great help as it shows there is a community and people do make the best of their situation. Think for me I am best taking each week as it comes, but seems to be little advice out there from medics concerning returning and managing work. I seem to be getting the most advice from internet and friends of friends!
Hello from me too.
Ditto all of the above,but just wanted to add - this week I have started being able to walk downstairs normally.
You may not think much to that as a revelation,but when I add it is 10 mnths since my relapse finished,so improvement can keep happening long after you think what you are left with is forever.
Take care and I would advise keep exercising each finger to thumb, squeezing and releaseing a soft/stress ball,and if poss thumb to finger while squeezing the ball. It really helps me,and is what I was advised by OT to do.
Pip
thank you Pip - your story is amazing! Almost 3 months into this for me. Just finished steroids so hope for some improvement. i will order a stress ball today!!
In a previous life I trained as an artist and was subsequently an art teacher and lecturer - these days my handwriting is utterly appalling and I tend to tell people I’m a reincarnated ancient Egyptian writing in hieroglyphics…
Keep your fingers moving so you don’t lose the muscle tone while your hands recover function - the stress ball is an excellent idea.
In respect of returning to work - it might be an idea for you to contact Access to Work - Access to Work: get support if you have a disability or health condition: What Access to Work is - GOV.UK and consider a phased return - your HR department should be able to arrange this.
Hi I had similar problems to you that started a year ago. I work in a school to so it was tricky, but the children were great at helping me write things when needed. I also couldn’t use a keyboard. Alison described it really well. Personally I am still waiting for OT appointment despite my ms nurse chasing it. I still can’t lift my right arm very high, still and have pains down my arm and hand which are helped by gabapentin and find writing for any length of time still very difficult. Like you I did really need to write for my job so resorted to paying for three or four physio sessions. My physio suggested using theraputty plus lots of exercises for my fingers like lining up a row of coins then turning them over. Anything really to exercise those fine motor skills. It took about seven months but I am now able to write again, although I still find it hard work. It is important to remember though that everyone is different and you may well recover more quickly. Hope you get some help soon. Mish x
Hi Jackie,
It’s always good and bad news when new people pop onto this website. Bad because the person may have MS, good because we’re mostly a friendly bunch and all try and help each other.
I have a few problems with my hands - physo suggested a stress ball and rolling blu tack between fingers and thumbs.
I’ve also been buying the Papermate flexgrip pens for years due to bad grip. They’re which are covered grey rubber and easier to hold. Stabilo do a left and right handed pens that are shaped so that they are held correctly , one of those might help - they’re sold in most stationers. Haven’t tried one maybe others have
I’I’ve just googled - ‘writing aids for weak hands’ and there are a whole host of different shaped pens and grips that might suit your needs.
Keep well, Jen x
Hi Jackie
Like Jen says, google “writing aids for weak hands” and also look at “writing aids for the elderly”.
In fact, stuff for the elderly in general might be useful.
There is one exercise that might help - you tap each finger in turn on your thumb. First finger to little finger and then back again, and then do it faster. An intention tremor makes my left hand slow, but I can still do it. But, it is only one exercise. So try all the ideas (and you should get a lot of them here) and stick with the ones that work for you.
Don’t give up!
Geoff
Thanks so much everyone. Feel i have been driving forward so much on my own and now others are stepping in with advice. Have any of you found the ‘access to work’ grant of benefit? Until i have firm diagnosis it is difficult to make firm plans with work. Am off to google writing aids, whilst completing some finger exercises!
You shouldn’t need a ‘firm diagnosis’ to access help from your employers - you’ll need an occupational health referral who will make recommendations to assist you in work. I had access to work and they ‘prescribed’ a special computer chair, a computer riser, extra large mouse (I work in mental health largely at a desk these days), a paper holder and frequent rest breaks in the day (there were other bits and bobs too). I think (at that time) my employers paid £300.00 and access to work paid the rest.
I also use chunky pens with soft rubber grips when my hands are at their worst. Fortunately my right hand is okay at the moment and I’m right handed so this is good.
I go to yoga when I am able to and we do some exercises of all joints including hands, similar to some of the exercises mentioned above and they are helpful.
I also had the Bowen technique a couple of times when my left shoulder was very stiff with limited movement. With just two sessions and some follow-up exercises to do at home the therapist had freed my shoulder off. It could be worth checking if there is a Bowen therapist in your area. Mine cost about £40 per session but was well worth it. I initially had a £5 taster session and asked what benefit he could be to me before deciding to have the full treatment.
Tracey
Once again can I thank you for your replies - the suggestions have really helped. I will investigate the Bowen technique- is it a form of oesteopathy?
“The Bowen Technique is a remedial, hands-on therapy that is applied using very gentle pressure. The practitioner uses thumbs and fingers on precise points of the body to perform Bowen’s unique sets of rolling-type moves which stimulate the muscles and soft tissue of the body. There is no manipulation or adjustment of hard tissue and no force is used. The experience of a treatment is gentle, subtle and relaxing. It is believed that the Bowen Technique prompts the body to reset, repair and balance itself and clients report the experience of pain relief, improvement of function and recovery of energy.”
My therapist used the thumbs and fingers to manipulate my joints and muscles and then left me to rest for 5 minutes after working on each area of the body. I was laid, fully dressed on a massage table, and felt fully rested while soft music played. He chatted to me the whole time and I felt really at ease. It wasn’t invasive at all. Afterwards I did feel quite washed out but he handed me a sheet with guidance on how to behave the rest of the day (no sitting still for more than half an hour although laying down is acceptable, drink lots of water etc). After a few days, my joints and muscles really began to feel the benefits. I thought it would be a load of old baloney as I’m not really into alternative therapies etc but I was so surprised. If I could afford it, and it fitted in with work better, I would go at least once a month.
Tracey