I think the majority of us think we are going to cruise through life with only the odd hiccup.
I certainly did. In the early years of my marriage, all my children had really serious health issues and so did my parents. Over the last few years I began to relax a bit, life was good and our challenges seemed to be in the past.
How wrong I was. Last November my husband had a fall in the backyard, tripping over a retaining wall while gardening. He was a bit shaken but nothing was broken. Almost too good to be true.
A few months later he said to me that he felt he needed to go and see the doctor. I was puzzled as to why my husband had not said anything to me before this. He then showed me that he had muscle wasting in his left arm and his hand was beginning to curl. How I did not notice this before is beyond me.
So along to the doctor we went. At first the doctor felt my husband had had a stroke. He ordered x-rays and blood tests and then got a referral to an orthopaedic surgeon who suggested ongoing physio.
After three months of intensive physio there was only minimal improvement so we were referred back to the orthopaedic surgeon.
Last week the surgeon told my husband his condition was not in his field and he would send him to see a neurologist.
From here we decided to go and see our GP who got an urgent neurologist appointment for the very next day.
After a sleepless night we went along to the neurosurgeon. While my husband was being examined I noticed a lot of body twitches. I had not seen these before. After about an hour of various tests we sat down and waited for his opinion.
“I believe you have Kennedy’s Disease,” he said. We had no idea what that was, but on further discussion we were told it is a form of motor neurone disease. We were gobsmacked, I immediately felt sick.
Now we face genetic tests to have the diagnosis confirmed as well as nerve conductive tests.
For the last few days, I have cried and cried but today I am feeling better so I decided I would like to share this with readers. Who knows, someone else out there may have this condition and it would be good to have someone to talk to.
I have been reading lots online about it and I am thankful my husband got this later in life (he is 68). I hope he does not get worse, but already I am helping him dress and undress and cut up his food.
My husband has had excellent health all his life and this has come totally out of the blue, although there may have been a few signs there we did not see.
He still intends to work until the end of the financial year as he wants to complete his ’twenty years’ service with his employer.
The specialist did tell him that if he felt he still wanted to work he should. My husband is lucky that he has has a great support network at work.
For the first few days I didn’t want to share this news with anyone apart from my family. It was hard enough for us all to accept and I didn’t want to ring friends and end up a blubbering mess.
Gradually I have started to tell close friends and family overseas. Sharing all this does help but of course people don’t really know what to do or say.
The journey from here on in is my husbands and mine, but I want to keep positive and live with the hope he may not get too bad. I won’t allow myself to think that. My husband and I have been married almost forty eight years; we have had a happy marriage, three lovely children and four grandchildren. We still have many things we want to do together and I plan to make those things happen. If you love someone deeply you do whatever you can to make them happy and make life as good as possible for them.
I will still get crying days but that helps heal the soul.
If there are any readers out there who have a family member with this disease please feel free to contact me.
I will give updates on have we are doing.
Never take life for granted, never put things off. None of us come with a warranty of good health forever. Get out and enjoy every day and make the most of what you have.
By Kay Rayner. Read more here.