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My journey with Motor Neurone Disease (MND) began when I struggled to stand on tiptoe while reaching for something on a high shelf. I noticed that I couldn't raise my heels from the ground, and my foot began to drag. After visiting my doctor, who had recently seen another MND patient, I was sent for tests and diagnosed. Although I initially feared the worst, such as brain tumours, receiving a diagnosis was oddly relieving. Knowing what was in store allowed me to cope better.
The frustration of having limbs that don't cooperate can be overwhelming. I use a walker at home for short distances, but it's exhausting, and I rely on a wheelchair for longer outings. I used to enjoy holidays exploring historical sites and walking around castles, but now navigating narrow shop aisles with a wheelchair is challenging. Wider aisles would make shopping much more accessible.
When using a wheelchair, it's common for people to address the person pushing it rather than me directly, which can be frustrating. Despite these challenges, adjustments at home, such as a stair-lift and a wet room, have made a significant difference. For tasks like standing up, it's easier when assistance comes from behind rather than from the front.
People often mistakenly assume that being in a wheelchair means one is mentally impaired, but my upper body functions well. The MND Association has been incredibly supportive, providing financial help for essential equipment like a stair-lift. My volunteer visitor, Liz Goodman, has been a tremendous support, always available to help when needed. The frustration is the most challenging aspect, and while I manage some tasks independently, I haven't done much exercise except for ankle massages.
Talking to others in similar situations at the hospice has been a lifeline, offering emotional support and a sense of community. The supportive equipment I use for my feet helps prevent them from dragging, reducing the risk of falls. Despite the fatigue, I can still manage some tasks like going to the loo at night.
It's crucial to communicate with individuals who have MND to understand their specific needs, as the condition varies greatly from person to person. Tailoring support to their unique situation can make a significant difference.
