April 1st, 2021
IMNDA and Wheelchairs
- Freedom and independence come in so many different forms
- “It’s my best friend”
- Manoeuvrability – “It turns on a sixpence”
Investment in wheelchairs
|Numbers at a glance|
|160 wheelchairs||Number of wheelchairs provided by the IMNDA 2011-2020|
|Costs (in Euros) at a glance|
|€250 to €2,500||Cost per manual wheelchair|
|€10,000||Cost per powered (electric) wheelchair|
Source: IMNDA 2021
Mobility and energy – quality of life issues
- The ability to walk can be limited or inefficient for 90% of people diagnosed with MND/ALS. A wheelchair allows people to conserve their precious supplies of energy.
- A wheelchair is a tool that allows people to move from place to place. The human need for movement is a very basic one.
- Increased mobility produces a virtuous circle of activity, socialisation and better mental and physical health.
Wheelchairs – users’ perspective
Wheelchair users describe the impact of wheelchairs – provided by the IMNDA – on their lives. Contributors’ names have been changed to protect privacy. In addition, Tracy Hutchin, IMNDA Services Manager, explains the association’s policy regarding wheelchairs
Independence and freedom come in many forms:
- “My best friend”
The powered wheelchair gives people independence in the house. Eddie, who lives in Co. Donegal, explains the series of small activities that – in his wheelchair – are now possible. He says, “It’s my best friend. It is doing everything I need. I can wheel about the house, make myself a cup of tea. I am independent”.
The wheelchair allows people to live their lives and continue doing what they always did, such as shopping, with ease.
Colm, who lives in Co. Cork, writes, “We always bring my wheelchair when we go shopping in the city. Without the wheelchair I would be very restricted in what I could do outside of our house. It has allowed me to get to places where, otherwise, I would have struggled to get to”.
Tracy notes, “It’s about people using carefully whatever energy they have. Walking requires a lot of energy and becomes exhausting”.
A wheelchair brings a whole range of outings within reach. Colm writes, “I use my wheelchair to get everywhere – restaurants, matches, museums. If we are going somewhere on holidays or to a hotel we always bring my wheelchair”.
Wheelchairs make longer excursions and family day-outs possible. Sean, who lives in Co. Waterford, explains, “It has given me great freedom to do the things I enjoy doing. Last summer, my family and I spent three wonderful hours on the Waterford Greenway. It was glorious”.
Out and about, people can meet with friends and maintain a social life. It facilitates interaction in all settings.
Sean says, “The promenade is only a short distance from the house. I go in my wheelchair and spend time there chatting to people. It allows me to meet up with friends from when I played golf or bridge”.
Colm writes, “Because of the wheelchair I can be involved in so many things. I am able to meet people in comfort”.
Eddie notes, “When I am in company and in my wheelchair, I can move independently through the group”.
- Best medicine
A wheelchair allows people to enjoy the lasting health benefits of fresh air.
Sean says, “I am out every day of the year except when the rain prevents it. I get loads of fresh air which is good for the spirit and much better for you than any pills”.
Colm writes, “I have the freedom to be able to get out with my partner when she is going for a walk”.
- Personal trainer
Everyone – both users and their companions – benefit from the speed settings. Speed can be adjusted to suit different requirements.
Sean explains, “The speed really doesn’t matter to me. I vary it according to what my companion wants. For some it’s too fast and for others it’s too slow. My son sometimes accompanies me and he prefers a faster pace. I joke that I will develop a personal training programme especially for him”.
Some get an exceptional amount of use from their wheelchairs, clocking up an impressive number of kilometres. Sean estimates that he does around seven kms a day – weather permitting.
Colm writes, “On a typical weekend I would probably travel anywhere between five and 10 kms”.
Heavy usage leads to tires and batteries needing replacement. Sean admits that he goes through a set of tires every two years. The IMNDA is happy to oblige with replacements. Tracy notes, “We are delighted to send new tires and batteries. It’s great, it means people are doing their own thing and being independent. This helps create a happier home life”.
The powered wheelchair provides a raft of other health-related benefits. It reduces immobility and its associated risk factors – such as pressure injuries.
The powered wheelchair can be tilted. This distributes weight to the back and reduces pressure on the ‘sit bones’. Legs can also be elevated to reduce swelling caused by fluid retention.
Sean notes, “I usually tilt the chair coming back from my daily walk. Pressure sores are not a problem but I am aware that they could be”.
Eddie explains, “I use the leg elevation function at times. My legs can get swollen so that helps”.
Tracy points out, “The chair itself is as important as the wheels. The wheelchair is about more than going from A to B. It’s also about independence. The powered wheelchair allows users who cannot move their own legs to elevate them. This is important as they do not have to depend on someone else to come and lift their legs for them”.
‘Turns on a sixpence’
Users highlight a number of key features that facilitate mobility:
Wheelchairs are easy to move and direct in just about any space, giving confidence and increasing independence.
Sean notes, “It’s a fantastic piece of equipment. It fits nicely through doors. You could turn this wheelchair on a sixpence. It’s so neat and versatile. It has a brilliant turning circle for tight spaces. Even the narrowest of hallways is easily manoeuvred”.
Eddie explains, “I consider this wheelchair to be top of the range. I have a small bathroom, but I turn the chair in the smallest of spaces. Just have to mind my toes, though”.
Colm adds, “It is ideal for lifts in various premises and also moving in tight spaces”.
The joystick, which controls both speed and direction, is simple and easy to use. Speed control is perfect, giving people confidence to move around in crowds, tackle door ramps and even hilly inclines.
Colm writes, “In a crowded area you can slow it right down with a simple joystick movement”.
Sean notes, “I must slow down for the ramp at the back of the house, of course”.
Comfort is a key criterion. A comfortable chair is more enjoyable to sit in – especially for extended periods of time. Comfort also encourages mobility and activity.
Eddie explains, “I’m sitting in the chair from when I get up until when I go to bed – around 12 hours every day. I use it everywhere – at the kitchen table or at the counter”.
“Horses for courses”
There is no one-size-fits-all when it comes to wheelchairs. Tracy explains, “We provide anything from five to 26 wheelchairs to users per year. Each wheelchair must be customised to a certain degree to suit people’s changing needs, conditions and lifestyles”.
Users describe their experiences:
Colm uses a Saoirse manual wheelchair, which a Benoit Light Assist attachment transforms into a powered wheelchair.
Colm writes, “It suits my needs perfectly I love the freedom that it gives me. I feel very independent. The Saoirse wheelchair is lightweight and fits easily and tidily into the boot of the car. It only takes 30 seconds to assemble and disassemble”.
“It is easy for my partner to manage. It is far more comfortable than a small mobility scooter and far less conspicuous than a powered wheelchair”.
Previously Colm had used mobility scooters. He writes, “Initially, I had a mobility scooter which came apart in six pieces and fitted into the boot of the car. That scooter was too heavy for my partner to lift into the boot and would not go up a steep incline. I then bought a heavy duty mobility scooter, which could go up hills, but would not fit in the car”.
“I don’t use my wheelchair in the house. I am still able to walk around with my two sticks. I try to walk as much as possible every day to retain my mobility for as long as possible”.
Sean uses a powered wheelchair, with a folding table in front of him. He only needs the wheelchair when he leaves the house.
He explains, “This model is similar to my previous wheelchair which had the joystick on the right side. As my right hand lost strength, I could no longer control the joystick. I just need someone to open and fold the table for me. The original joystick which came with this wheelchair was too small so my son made me a larger joystick from wood”.
“My son-in-law built a ramp at the backdoor for me. I go round the side of the house and off down the road. I need someone to accompany me as there are two pedestrian crossings on the way and I cannot reach the push button from my chair”.
Eddie has been using a powered wheelchair for approximately six months. He previously relied on crutches and a walking frame. He was reluctant to use a wheelchair. He explains, “I tried to avoid the wheelchair for as long as possible. But I had a few falls. I was losing confidence and didn’t want to leave the house. The wheelchair was parked in the sitting room for months. But this is the way to go. It is now my best friend”.
“I was a bus driver so I consider that I still have good enough driving skills. Until I gained experience in the wheelchair. I had a few accidents brushing against the walls and banging my toes. At the moment I am independent. I just need help to dress”.
The IMNDA, as with all equipment and devices, re-uses and re-cycles wheelchairs as much as possible. Tracy explains, “We aim for three users per chair. Each wheelchair is fully de-contaminated and serviced before it is given to someone else”.
Besides the obvious cost savings, reusing brings other benefits. Tracy notes, “It allows us to reduce wait times and makes for a more responsive service. Wheelchairs are customised to suit users’ specific needs. It only takes a week for a chair that we hold in stock to be adjusted. This compares to an eight week delay when we order a new top specification wheelchair”.
All users and carers express their gratitude to the IMNDA for its help and practical support.
Eddie explains, “Imnda is fantastic, brilliant. The IMNDA provided me with my wheelchair. The HSE occupational therapist had measured me for the wheelchair but the HSE would not then fund one. My nurse, Eithne, is just a phone call away. She always responds with advice ”.
Sean adds, “ The IMNDA is fantastic, brilliant. My nurse will always respond quickly”.
Colm writes, “They are so friendly and supportive every time we need to contact them”.