If you watched the video, that’s me singing and playing the guitar. That was me back in 2007, five years before i was diagnosed with ALS.
Today I’m partially paralysed and have to rely on a walking frame and wheelchair to get around. I have almost no strength in my left and right arms and need assistance from my partner, kids, and others with even the most basic everyday things like getting dressed and taking a shower.
I miss all the usual things like being able to get up and walk around when ever I want. Being able to get in a car and go places when I feel like getting out. I miss being able to cook my family a meal when we’re hungry, clean up a mess when I see one or pot around in the garden. I miss being able to send a text, pick up a cup and have a drink, drink beer without having to worry about getting help in the toilet… and I miss being heard and being treated like a person rather than a patient.
But I also miss the subtle things in life like playing the guitar and singing with the kids until 2 in the morning. Running along the beach and feeling the cold morning breeze on my face.
Everything I want to do today involves me relying on others. So I guess the thing I miss most is my independence.
Living with MND 