Little hand movement

[JSW75]

Hi there I am writing on behalf of my sister - she is under the Royal Free and was diagnosised in May with diffuse scleroderma. The biggest problems for her is the restrict movement in her hands and painful ulcers, any suggestions or ideas anyone????

[MEW53]

Hello JSW75,

Welcome to this forum.

I have Scleroderma and my hands are bad, when I was diagnosed 3 years ago, my hands totally closed up, however I used a stress ball and started using an iPad with a dibber (looks like a pen) and these have really helped me.

I keep my hands between my legs to try and straighten them.

These tips have really helped me.

😀

[JSW75 in reply to MEW53]

Thank you so much for that - at present she isn't able to hold a pen, but I will certainly advise the other tips!

[LucyJean in reply to JSW75]

Hello there, really sorry to hear about your Sister's hand difficulties. There have been a few relatively recent posts regarding the hands in scleroderma. There is a video link that I posted, that was reposted recently so just scroll through the posts and if not I will highlight the original for you.

Regarding the use of 'equipment'. There are lots of different types of pen and gadgets to help make writing easier. I have to use quite specific types of pens and hold them in a 'funny' way if I want to have any legibility to my writing. Have a look on the Disabled Living Foundation website dlf.org.uk They list lots of equipment for managing all types of day to day activities and the companies that may provide them. You can also do a search on amazon or google to find different pens and gadgets. I did a very quick search and found this page that might give you an idea of some of the things on the market

wrightstuff.biz/writingaids...

Some people are better using a computer keyboard or a touch screen Ipad. I find that my fingers are a bit too clumsy. I use a dumb phone because it is easier for me than a touch screen one. We are all different. Play around and see if you can find what works.

All my best

Lucy xxx

[JSW75 in reply to LucyJean]

Thank you so much Lucy - I watch the video, very helpful!! Hope you have a good day x

[Alice1956]

Hi JSW75. Does your sister see a Physiotherapist and Occupational Therapist? Definitely worth asking her GP for referrals to both if not. I am lucky to have a really supportive physiotherapy team who give me weekly hand/arm manipulation exercises after wax bath therapy which has really improved my hand function . Hydrotherapy is also also good as the manipulation of my hands is mush easier under water. Occupational therapy are brilliant in helping to find equipment to make life easier to help with personal care and household tasks. Occupational therapy also provided me with Isotoner compression gloves which also really helped me . I also have a small wax bath at home and use it most days. There is also a really helpful Facebook page called Scleroderma Family UK. We also have a Scottish Facebook page called Scleroderma Support in Scotland. Everyone is so willing to share tips and advice on these pages . Alice x

[JSW75]

Dear Alice

Thank-you so much for your reply - physio have given her exercise and she is having a private weekly hand massage, but your tips are really helpful. I have given her the details re: OT and she can self-refer I think she is struggling emotionally at the moment, but I will certainly look at the bits you have suggested. Thanks again!! We are both on the Facebook page, but it is linked to the US site - some of their posts seem to be quite frightening for her. xx