Plans

I hope everyone had a wonderful Christmas and lovely New Year.

Last year was definitely not my favourite year.  My husband was diagnosed with Motor Neurone Disease in August.

To be honest it has completely thrown us.  Edward has hardly ever had a day of sickness in his life apart from a hip replacement twenty years ago.  Just over a year ago he tripped over our retaining wall which we believe triggered the whole thing off.

By March he was beginning to get weakness in his left hand and by August he had seen orthopaedic surgeons and physios all to no avail.  We were then sent to a neurosurgeon in August who, after a series of tests, told us the devastating news.

My husband decided he was not going to let it beat him and went along to a neuro physics clinic, but gradually his walking has got worse and he has been having quite a few falls.  In mid-December he had to give up work after twenty years with the same company.  This is something he tried hard to fight and had tried to put off but in the end he had no option but to leave.

He is now having home visits from OTs and the physiotherapist.  Often we complain about our medical service but quite honestly everyone has stepped up in order to help him and give him the best quality of life.

For me, I have days when I just burst into tears.  I am a stress ball and I keep asking myself “why has this happened to my family?”

My husband actually looks well apart from losing muscle tone, he looks his usual self.  Sitting in a chair you would never know he can hardly walk.  His left arm and hand is very weak and he does not have much use of it.

We are living in the hope that just maybe the nerves will heal themselves.  Miracles do happen.  We are not prepared to give up.

In June I am planning to take him back to Lucca, Italy.  Some of the readers who have read my column will know how much we love Lucca.  I will have some family help to get him there and I am determined to do this.

We will need to travel with a wheelchair, that’s ok, it can be managed.  This is not going to be a sightseeing trip, we have done that, it’s going to be a trip that will involve meeting up with our Italian friends who happen to be opera singers and also spend quality time in the town Edward and I fell in love with many years ago.  Just being there, having a glass of wine or eating a gelato is all we need to do.  Lucca has a special magic all of its own, we both feel happy there and at peace.  If we won lotto tomorrow we would love to stay there for a few months.

Having to face life changing situations is hard.  You imagine growing old together and you also imagine the things you are going to do together when you retire.  When your life gets turned upside down you start to question what did you do wrong or what did you do to deserve this.

It’s only natural to go through a myriad of emotions, I sure have.  I have to say my husband has been incredibly brave and I know he is trying hard for me.

I miss his bear hugs and cuddles we have always been close and we still are.  I adore my husband and I will do anything to make life easier for him.  I am 100% sure we are not going to sit back and let MND take over our lives.  We have an awesome family who are totally supportive.  We live with our daughter, son-in-law and grandson and are so fortunate to have their support on a daily basis.  Our son lives in Bangkok and our other daughter lives in Brisbane.  Of course I wish they were here to help support us but they have their lives to lead as well.   We are fortunate to have been able to see our son and his family for Christmas and our daughter late last year.

I do hope 2017 is kind to you all; remember to live life to the fullest.  Tomorrow is not guaranteed so never put something off and make sure you enjoy every moment.

My husband and I sure will be.

By Kay Rayner

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