Help Tom Fight Motor Neurone Disease

Hi, my name is Tom, I'm 31. At the end of November this year, I was diagnosed with early onset ALS, a type of Motor Neurone Disease (the same illness that professor Stephen Hawking had). ALS is a common disease, however to get it earlier in life is pretty rare. There is no cure and this disease is going to steal my life away from me piece by piece until I'm unable to move, talk and eventually even breathe. I have been given a prognosis of 3 -5 years, however there is no way to know how fast the disease will progress or in what order it will steal my life from me.

My symptoms started over a year ago, and initially I thought nothing of them. One day, my partner and I were playing on the beach with our dog Loki, and I realized I couldn't run to play with him. My now wife was telling me to see the doctor, but I didn't want to me a fuss, I thought I'd maybe just twisted my ankle. Things started to get worse, my left leg grew weaker and when I start falling over I knew it was time to get this checked out.

The doctors were puzzled and initially sent me to physio therapy, who then referred me to a neurosurgeon and from then on I was seeing different specialists every other month. I had MRI's, Nerve Conductivity Tests, Lumbar Punctures and so many blood tests it was scary. The horrible thing about ALS is there is no test for it, they basically have to rule out everything else, and for months I was in limbo not knowing what was happening to me.

On the day I got my diagnosis, my world ended. I lost hope, and I felt so guilty that my amazing wife was going to have to go through this. I want to use the time I have left to make memories with her, I don't want us to struggle worrying about how are we going to pay for this medical equipment or that therapy.

It absolutely breaks me, knowing that I'm not going to be around to grow old with my wife. That one day our dog Loki will bring me his ball and I won't be able to throw it, and he won't know why. I would give up anything for the both of them, but at the moment this is the best thing I can think to do to help.