THE date 15 September 2022 will stay with me for the rest of my life for its sheer hopelessness. Sitting by the phone waiting for Joanna to call to give me the results of the second series of nerve tests was excruciating. The utter desolation of her diagnosis left me winded, doubled-over with an almost physical pain of what the future now held for her – and her family and friends.
My beautiful, generous and kind-hearted sister started the conversation with ‘I’m so sorry. It’s MND’. Typically – before any thought about the impact this hideous diagnosis would have on her – she was thinking about those closest to her.
I’ve never been one for consulting Dr Google about medical matters but MND was my one exception. A quick scroll left me terrified as the stark realisation of what must be one of the cruellest diseases imaginable became clear. Parts of your body simply stop working.
In most cases only the brain remains unaffected, which means even when you can no longer move, or speak, or eat, you’re still fully aware of the awfulness that is MND. And then the question none of us really wanted to ask because it can differ so widely from person to person. How long does Joanna have? Three to five years from when the symptoms first started, we’re told, although it might be longer.
I’m quickly learning there are very few ‘definites’ in the progression of MND. We are clinging on to the hope that she can retain her independence and quality of life for as much of .