The hardest part of being an MS Nurse, for me, (and I know I have Nothing to grumble about!!) is when someone with advanced MS tells me that they are losing hand function.
I’ve compiled a list of useful resources to help live life as fully and independently as possible, in this situation. Here’s the list so far, but it’s only a beginning, I’d like a more comprehensive resource so please do contribute the things that you know.
This is where technology is absolutely your friend.
I’m loving this round up of the best assistive tech for 2017 from the makers of TECLA: https://gettecla.com/blogs/news/the-best-wheelchair-tech-accessories-of-2018?customer_posted=true#contact_form
They also have useful blogs on choosing smartphones, DIY assistive tech and more; see https://gettecla.com/
1) Abilitynet are an excellent charity that provide information and even home visiting assistance to help people with disabilities get the most from their computer, tablet and smartphone, including using voice controls.
The home visit service:
2) Environmental controls/Assistive technology (AT)
(AT) is any item, piece of equipment, software program, or product system that is used to increase, maintain, or improve the functional capabilities of persons with disabilities. Put simply, it allows you to control things around you – from doors and curtains to TV, phone, wheelchair and more, without the normal use of your hands.
Counties will vary, but in Bedfordshire, if only one item is requested, the community OT department sort it, but for more than one, you can request a referral to the Acquired Brain Injury (ABI) team, for a specialist assessment.
3) Another place you can learn about AT is http://www.livingmadeeasy.org.uk/ which has impartial advice and information about daily living equipment, developed by the Disabled Living Foundation (DLF)Their AT advice is here:
Sometimes, what you need, is absolutely bespoke to you. When that’s the case, the wonderful experts are the charity
4) Remap http://www.remap.org.uk/ Remap are
retired engineers work with disabled people to try to make things to solve their individual problems; my experience of them has been fantastic.
Photo courtesy of Remap.
5) Independent electric wheelchair control can still be possible for people who have completely lost hand function, using ‘sip and puff’ / ‘suck and blow’ , or ‘tongue drive technology. Discuss with wheelchair services. You can see an example of it here, but it’s just an example, I don’t particularly recommend or endorse it.
6) Suck and blow/sip and puff technology can also be used to use a computer, turn pages, or other commands.
7) Neater eater
This is a lovely piece of kit that has been around for a long time; like a robotic arm that can help people with limited hand function to eat independently; i also see that they have systems for drinking too.
I have many patients who continue to lead rich, full and busy lives, even with minimal function and maximum disability, and that, I guess, is the power of the human spirit.
Emma ( my colleague and the other MS Nurse at the MS Therapy centre) has just recently been at ECTRIMS in Paris, and we are both going to be at the MS Trust Annual conference next week, so hope to report back soon,
All the very best! Miranda