It has been a long road full of heartache and tears, that is what MND does to a person, not only does it destroy the person that is suffering from this terrible disease, it sucks the life from the people that are closest to that person.
There is nothing that I can think of that is more painful than watching the person you love most in this world slowly deteriorating to nothing more than a shell of their former selves.
That is what MND did to my wife, it took her away from me in just over 18 months from the time she was diagnosed. Angela loved to laugh, and she did her best to put on a brave face, behind the scenes it was a different matter, we had many meetings with doctors and MND staff, it was a whirlpool of information at times some of which caused a lot of stress and we kept many things to ourselves about that.
The one thing that we can be thankful about with regards to this horrific disease is that it causes no plain as it progresses, Angela did have some pain in the latter stages mainly due to the lack of movement and her legs becoming stiff. I was given some exercises to do on Angela’s legs to help keep the mussels moving.
With MND there is a higher risk of chest infections as the breathing mussels start to get weaker, we were lucky in that Angela only had one infection since she was diagnosed, that was a chest infection caused in part by Angela not been able to swallow which resulted in the saliva pooling in the back of her throat.
In an attempt to stop the problem with the saliva, Angela was given Botox injections in the saliva glands, she squeezed my hand tightly for that one.
The nurse told us at the time of the injection that there was a chance that there could issues as a result of the botox, and that Angela needed to swab her mouth to keep it moist. But, Angela still developed oral thrush as a result and it took a course of antibiotics to begin to clear it up.
Angela passed away on the 18th of November 2018. It is only February as I write this and I miss her so much, MND is a horrible condition and it need to be eradicated from the face of the earth. Only by telling the story of the emotional pain can we keep this disease in the limelite and thus help persuade people to part with money, money which is needed to fund research into this disease and thus funding a cure once and for all…