A burning question you want to ask your neurologist when you just received your multiple sclerosis diagnosis is, “Will I end up in a wheelchair?”
The good news is, the vast majority of people diagnosed with relapsing/remitting MS will not. That being said, it doesn’t hurt to make your home MS-proof and your everyday activities easier and safer to do.
Loss of mobility is just one way MS can stop you from being the walking, talking, active person you once were. While this sounds rather depressing, new technologies, adaptations and accessibility can turn your life around and help you live more independently.
When I received my diagnosis, I was told that a lifestyle change would benefit me, both personally as well as professionally. I was gobsmacked. I moved to Ireland 2.5 years prior to my diagnosis – speaking of a lifestyle change! I found a rhythm and routine that suited me very well, that of course, was until my first symptoms started 5 months prior to my diagnosis. Changing my lifestyle again, erm... no. If I would ever require the use of a wheelchair, I thought, I would challenge the house and show who was stronger.
The battle was on.
Doorframes, or me.
I should have listened more carefully.
Although I didn’t need a wheelchair, new symptoms arrived that did require a walking cane as vertigo disrupted the still new status quo of how to live a stable, upwards life with MS, and all this before I had even arrived at page 50 of ‘The First Year—Multiple Sclerosis: An Essential Guide for the Newly Diagnosed’ yet!
So, bringing plates from one room to another? Cleaning floors, doors and cupboards?
The doorframes refused to move.
The laptop screen was too bright. The kettle a danger to arms and legs. The staircase looked like the Everest. The shower, as slippery as an ice rink.
In short: House 10. Willeke 0.
By a stroke of luck, a very kind donor sent a large box filled with assistive devices shortly after my diagnosis. My willingness to use them, however, was rather slow, and only changed when a hot kettle found my other hand instead of the cup of tea below it.
Adaptive and Assistive Tools
As I later found out, that willingness to accept adaptive tools was not just my issue, but that of many others faced with disabilities. My mind had to accept that using a walking stick and other adaptive and assistive tools were all about taking charge of life, instead of giving in to MS. Once I did, it felt like a huge weight fell off my shoulders, as it took the “what if...” worries away.
Being practically minded, using gadgets, modifications and adaptive techniques has me surfing to Murrays or Abledata on occasion despite not needing many. In my case, despite it being a paradox as my eyes require strong prescription lenses since childhood, my MS-related facial and eye pain require a change in the brightness of my laptop screen and TV, as well as the lighting around the house. In the kitchen, kettle-tippers, non-slip chopping boards and cutlery with larger and non-slip handles help food preparation in a safe manner.
In the bathroom you can ask someone to add a toilet seat raiser or commodes and install grab bars next to the toilet, inside the shower if you remain seated while bathing, and similarly, you can also add them next to the bathtub. If you are hell-bent on taking baths instead of showers, adjustable tub transfer benches could be your thing, and don’t forget to add non-slip bathmats.
If that still doesn’t seem right, part of accessibility issues at home can also be solved by physical activities/exercise, where you strengthen your triceps – the muscles on the back of the upper arm to lift you up from the bath, or you can exercise sitting up and down until you feel strong enough to use the bathroom or get out of bed without outside help.
As you go from room to room, you can move furniture around if you’re in a wheelchair to ensure that aside from doorposts you don’t accidentally hit furniture and injure yourself. If need be, widening doorframes can make your life easier.
There is one last accessibility tool I want to mention. In today’s fast-paced world of technological improvements, don’t forget communication tools. If you have visibility issues, easy to use mobile phones with large keys can help you stay connected to the outside world. If you want to feel safer still, a personal alarm can tell people in a monitoring centre there is an issue, and quickly assess the problem to organise the most appropriate assistance for you.
No matter what you eventually decide, please remind your self that safety comes first.
Information listed here is only intended as guide. If you require more specific tools or devices, contact an occupational therapist who will be able to advise you further.
Check out Willeke’s blog Ireland, Multiple Sclerosis and Me