In my early years of living with MS, my major symptoms were fatigue and mobility. As time has progressed, my experience of the impact on my life has varied, from a ten-year period of no symptoms to now, when every day is shaped in some way to accommodate my MS. In the early years, my one assistive device was my trusty folding stick. It was always close, and I made sure it was in the car for those days when my leg just refused to co-operate.
Nearly 30 years later, I have been dealing with worsening symptoms, especially fatigue and mobility. Fatigue is manged by more rest, exercise and my favourite, coffee! Learning to pace myself and learning how to say ‘no’ have been keystones in how I go through my day.
Mobility is a different story because the impact is variable. There are days when I feel my legs are sturdy and I can walk unaided. I cherish these days and if I can, I will go for a real walk. This is happening less and less and so to ensure I can live my life to its fullest, I am using more assistive devices to help me.
I still have a walking stick, in fact, several of them. My outdoor stick is made from hazel wood and it has a lovely feel and a little bit of flexibility, which makes it nicer to use than my old folding stick. I replaced the metal tip with a sturdy rubber ferrule which adds more grip and it doesn’t make a noise every time it hits the pavement.
In the house I have a lovely lightweight stick which is really a combination walking stick and pole. The grip is made of cork, which is warm to the touch and has a nice feel. It also has a tip made from rubber, which I found wore away quite quickly. There was a time I was putting on a new tip every 2 weeks! So now, it is my house companion.
Crutches are also part of this, as there are days when it is much easier with crutches. If my legs just don’t want to move the crutches help me get around. The biggest disadvantage is the amount of upper body effort needed to use crutches tires me very quickly. Trying to maintain cardio fitness with MS is hard, but it must be done, somehow.
Functional Electrical Stimulation (FES)
This was a revelation for me. I have a few YouTube video’s which show how this works and its benefit to me. You can view them here:
FES uses a small electrical impulse to flex a muscle. It means if you have some movement it will strengthen this and allow you to walk. It is wonderful, and it allowed me to walk on sand, which I couldn’t do anymore. If my leg is too tired it will help, but not much. It is most effective when your legs are not tired. It also helps with foot drop, and it can also be used for your hands.
Sometimes I cannot walk or if it would be too tiring, I have a scooter. I like scooters as they can have a good range, can manage hills, and you have a convenient seat and basket with you at all times. They make shopping and going around a town or shopping centre so much easier.
Wheelchairs require some upper body strength, but again are great around an accessible shop or home. They are more manoeuvrable as they can turn on a sixpence which scooters cannot do.
Both allow you to get outside, Irish weather permitting, and to get some fresh air or some personal time. At this time of the year it is great, you will get to see the flowers raising their heads and hear the birds heralding springtime. When I walk, I cannot enjoy these as much.
Hip Flexor Assist Device
FES can be expensive and this piece of equipment can take its place, especially if your legs are fatigued. I have a video showing this too. https://youtu.be/aXlXWRsyi0c It has two rubber tubes, which act like springs, lifting your leg. This means walking takes much less effort. It has two other benefits; it prevents foot drop as I attach it to my shoe, lifting my toe as I walk. It also has a strap which goes behind your knee, for those times when you lose the ability to lock your knees. Using this really helps when you're tired.
Because of my inability sometime to climb the stairs, I have installed a stairlift. Some evenings or afternoons I would head upstairs to bed early because I was afraid I could not do it later in the day. It wasn’t nice as it excluded me from the home.
I have always associated stairlifts with the elderly, not realising it would be something I would need at this stage in my life at 52. . However, over the last two years the stairs stopped being a great physiotherapy tool and started to be a source of fear and anxiety. I had even started to go back up the stairs on my bottom, which was a catalyst for me to do something constructive and get the stairlift fitted!
Stools & chairs
After an evening watching the TV getting out of the couch can be tricky. For those of us who cannot buy a new, higher settee, it is a great idea to get small boosters to lift the height, making getting off so much easier.
I have also a stool in my shower, so I can sit down while cleaning myself. I have also a booster on the toilet, with some handles so I can push myself off when I am finished. In the kitchen I have a special stool, a perching stool, which allows me to sit/stand while preparing food in the kitchen. These aids make life a little easier.
Being able to drive is one of life’s freedoms and it makes more places accessible. As my legs don’t work well, I have hand controls fitted for my brake and accelerator, with a handy steering knob. Fellow bloggers, Christina and Grace, shared something about this before. One extra to their posts is the fitting of a small crane in the boot to help lift a heavy scooter.
Smart phones, smart watches and computers are everywhere and most people have access to them. The functionality of these is improving almost at a daily rate. When thinking about this, I feel I could write a whole post on this topic alone. The benefits are:
- Fitness tracking: monitor how much exercise you are getting and if not enough, they can help motivate you to do more.
- Fall detection: There are several devices which will contact someone if you do fall. This gives great peace of mind.
- Mental Health Apps: Meditation, mindfulness and journaling can all be done using various apps, many of which are free.
- Lists & Reminders: Cognitive problems happen to over 50% of people living with MS. A way to help overcome some of the memory issues is to have ‘to do lists’ and alarms and reminders. This has helped me a lot.
Dictation & Voice control: If your hands are not great, then the newer devices can operate using your voice. I am even using the dictation tools on my phone and laptop for the times when writing something down is just too much.
This is my experience of using assistive technologies to help me manage how I interact with the world. Your Occupational Therapist is another great support and asset for you. You probably associate them with wheelchairs, but their knowledge about all these tools is invaluable. They will take the time to understand your needs and will help you find an appropriate solution.
These tools will make your life easier. This will allow you to focus your time on the things you love. The relief I felt on the day I got the stairlift was huge. I don’t dread the climb when it is time for bed, I can sit comfortably as I am carried like royalty to my room. Now I can be with my partner for the evening, not secluded because of bad mobility.
The tools help me live my life fully.