Difficulties walking are the most obvious sign of disability – literally, our disabled signs depict a person in a wheelchair.
Thinking back, it seems so strange that a week before the diagnosis, Mum was walking fine. She had no mobility problems – she took our poor pug Oscar for a three mile walk. His legs might have given up after that, but she had no incline of what would happen to her in the coming months.
When her first wheelchair arrived, the impact of the diagnosis was still raw, and it felt like a looming symbol of what was to come. She only needed it for long journeys, for when she got tired. Mum’s mobility has declined steadily, largely due to weakness in her left ankle. She’s been wearing a support for months, but her foot now drops when not supported from beneath.
Now, her wheelchair is as necessary as breathing. Without it, Mum cannot walk more than a few steps, and even then she uses a zimmer frame and ankle support to be able to get so far. The MNDA loaned us a rise and reclining chair – a bulky chair that allows her not only to lie down, but rises to help her get back onto her feet. It’s so comfortable she even chooses to sleep in it sometimes.
Recently, Mum wrote about how hard she finds the mobility problems she now faces. Only being able to manage a few cautious steps presents obvious challenges in daily life. The falls that she has suffered – only one of which resulted in her being taken to hospital in the back of an ambulance – have knocked her confidence, and her anxiety when she is standing is obvious.
We know the day will come when even this limited mobility will be gone, when she will need hoists to help her get out of bed and into her wheelchair. But, as we have had to do for the past thirteen and a half months, we take each day, each week, each month as they come. Mum’s needs change regularly, and we do what we can to anticipate them. Thankfully, we have a fantastic support network of nurses, occupational therapists, staff at the hospice, our family and the MND family to help us rise to any challenge.
Of course, it’s important to note that people progress differently – that’s the thing to always remember about MND. Mum’s story is unlikely to match anyone else’s. For some people, that first stumble is the first sign. For others, it comes much later on. For some, it may not come at all.
For more information about mobility and personal care, check out this page on the MND Association’s website.