Louise shares how her family have been touched by MND and how she remains positive.
I am learning to deal with it even though some days are worse than others
My father was diagnosed with MND about six months before my wedding in May 2004. I knew nothing of MND and to be honest initially didn't know what the big deal was as he was quite well, but just had a few problems with his voice. It was only as I read more about the disease that I realised how degenerative it would become and how my dad really didn't have long to live.
My mom was amazing and looked after my dad full time at home. The main symptom to affect my dad was his voice, which he lost totally. He remained strong and positive and would walk to the shop at the end of his road right up until the end when he became very poorly very rapidly. He died on the 7 June 2005.
I might sound quite cold when I talk about my father, but to be honest his illness and death were a bit of a blur, as my life took the most devastating turn when my mother was also diagnosed with the disease on 24 April 2008, and to be honest with you this news and her illness just took over and everything else that happened before has faded into a nothing. Mom's voice started to be affected and she started slurring. I remember thinking to myself that I hoped it wouldn't be MND, but then I told myself to stop being stupid because it affected so few people and there was no way they could both have it - what bad luck would that be!
I remember the doctor telling her she may have suffered a stroke and the feeling of relief hit me I was almost happy with that news. She was then referred to a neurologist at the QE in Birmingham and they initially thought the same, but unfortunately no results materialised to prove this. She was tested for Mysenia Gravis, which again I had everything crossed that it would be that....but deep down I knew what the outcome was going to be.
My mom was the most wonderful women in the world, she was my best friend and we would speak on the phone at least six times a day, she was loud and full of fun. We used to joke that we would pull up on the drive and hear her on the phone from inside the house. She was known as such fun by everyone, and her voice was amazing with such clarity, we used to say she spoke like the Queen. For her to lose her voice was pure torture and I don't know how she coped, but she did and took everything in her stride.
My mom had been a nurse for over 45 years and everything related to MND she dealt with and administered herself as she was fitted with a PEG in June 08. She was adamant to stay at home which worried me and my brother, but she loved us coming to stay over and adored her grandchildren who still speak about her on a daily basis. Mom was admitted to the John Taylor Memorial Hospice in Sept 08 as she really did deteriate very rapidly and was becoming unsteady on her feet, we spent every day with her. I couldn't bear to leave her side. She died on 28 November 2008 and I still have not come to terms with it.
I miss her every day and cannot believe that one family could go through so much and lose both of their parents to MND. I think the thing that hurts the most is that my mom knew how much she was going to have to suffer having nursed my dad through it, before that ignorance was bliss. On the 4 July myself and a friend organised a charity walk in aid of MND and there were approx 45 friends and family who walked 7.5 miles at night, we made it a fun event sneaking beer and pimms on the way. It meant so much that so many people agreed to help and I was so proud that they were doing this because if my mom and dad. The sponsor money is still rolling in but we are aiming for a high total.
I suppose I worry that having lost both parents to it I may end up the same, and I worry about my children, but that makes me live each day to the full even more, which is exactly what my mom did. So I have to stop myself from worrying and fretting about my future and just enjoy the fact I have a wonderful husband, two beautiful children and a fantastic brother who has been through just as much as I have and has come out the other end, albeit very sad and changed by this experience.
My mom was called Elizabeth Anne Brain
My dad was called Keith Brain
I am Louise Small and I am 36 years of age, and will never fully understand why we have had to go through this, but I am learning to deal with it every day even if some days are worse than others.