Motor Neuron Disease - the silent killer

Hi All,

It is with quite a heavy heart that I share my story with you.

My father was diagnosed with MND five years ago. At that stage he and my mom did not know a lot about the disease but were determined to find out everything they can.

The doctor gave my dad between 2 to 5 years to live.

As the years progressed this disease stole from him slowly every day. At first his walking deteriorated until he was confined to a wheelchair after about two years.

Then slowly but surely he was unable to use his arms and this past year he was confined to a bed without being able to move at all within the last 6 months.

This is a very lonely disease. He did not get a lot of visitors during this time. I do not know if it was because people did not understand the disease or if they were sad to see him like that.

I was very fortunate to go and visit him at the end of December 2017. He was very, very sick. My father was ready to leave this world and it was very sad for me to see him like that.

On 24 December 2017 at 11h15 my father passed away, leaving the body in which he was confined, behind. We were very sad to see him go but were also so glad for him because he was pain free.

A lot of people struggle on a daily basis with this disease. Some families go through very difficult financial struggles because of this disease. Husbands who are the sole providers for their families are let go from their jobs because they cannot work.

My father was very lucky to work for a very good company which still allowed for him to work up until his death. Two days before he died, he still did some work. He had an eye tracker installed and did work on that.

I salute my dad for being such an inspiration for so many people and will miss him dearly.