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13 Dec 2017

Issue 100, March 2008

Personal Story

The Grey Mile

Our lives were turned upside down on a beautiful summer's day. It only took four short little words "It's not good news" - I know I do not have to explain to you what these words meant to us; all of you have 'been there' and have experienced the inexplicable anguish that they convey. But let me start at the beginning.

We married in the mid eighties. We were young, in love and the world was our oyster. We had worked hard and saved enough to pay for a wonderful wedding and for a deposit on our first home. Soon after we had three beautiful healthy children who brought such joy and happiness to our lives. Life was good.

My husband's mother was not feeling very well. She had been 'off form' for a number of years. Nothing too serious, she had headaches and was a little fidgety and forgetful. As the years passed and as her symptoms continued, she underwent tests. She was diagnosed with Alzheimer's Disease. The family was naturally saddened but at long last a name had been put on her unusual behavior.

My husband was driving home from work one day. He was listening to the radio. A woman called Bernie Moran was being interviewed. She was explaining the symptoms of Huntington's Disease and how, it being a genetic disease was passed from generation to generation. When he came home he told me all about it. He felt his mother fitted more into the description of HD rather than Alzheimer's but as her mother and father lived healthy lives into their late seventies and early eighties, and none of her brothers or sisters had any health problems, HD was not seriously considered, it was more of an interest rather than a concern. He contacted the HD Association and for many years we received literature and information.

I clearly remember one incident when I was sitting up in bed reading a booklet on HD and saying, "HD is a terrible disease but thank God it does not affect us". It is really true what they say 'ignorance is bliss'.

Life carried on, but unfortunately so did my mother-in-law's symptoms. They did not fit the usual symptoms and pattern of Alzheimer's Disease but we believed the doctors' diagnosis. Very shortly before her death, the correct diagnosis of Huntington's Disease was confirmed. The doctors had not previously tested her for HD because there was no obvious history of HD in her family. Indeed no one had ever heard of it before. My husband was with his mother one day in hospital when he found out her real diagnosis. He rang me at work and said, "you will never guess what the doctor said". At that moment, for me, time stood still. I will never forget that phone call.

After the initial shock, the human capacity for distancing one's self from misfortune took over. HD was one generation away and there was no reason to think that it would affect us, but purely to dismiss it from our lives; we made an appointment with a Neurologist. She explained to us that there was no center in the Republic of Ireland who performed the test. We would have to go to Northern Ireland or to the UK. She gave us her opinion which was "wait until the planned centre in the Republic is open because obviously it is close to home and a whole team will be in place, a geneticist and genetic counselors". We decided to wait.

Almost three years to the day later we had our first appointment in the Genetics Unit in Crumlin Hospital. On arrival we checked the colour coded chart and learned that grey was the colour allocated to the genetics unit.

We followed the grey line on the wall from the reception area down the long corridor to the unit. All of you who have followed this grey line will know that it runs along the longest, loneliest corridor in the world. So many thoughts and emotions run through your head.

Generally we felt fine but I was beginning to have doubts about my husband. He was a little off form of late. Again, nothing too serious, he had headaches and was a little fidgety and forgetful.

About twenty minutes into our conversation with Professor Green, he turned first of all to my husband and asked him directly "do you think you have HD?" He replied "yes, I think I do". Professor Green then turned to me and asked me the same question, and in all honesty I had to agree and say "yes, I do too". He told us that he had concerns and would do the blood test there and then. We declined as we were not prepared. We had anticipated the customary six months processing time and also, if we went ahead at that time, we would have been given the test results one week before Christmas, We rescheduled our appointment for the New Year.

Over the next couple of months, my husband changed his mind repeatedly until finally he was ready to go.

On a beautiful summer's day (ironically on our fourteenth wedding anniversary) our lives were turned upside down. It only took four short little words "It's not good news". Words like shocked, stunned, traumatized, devastation and disbelief only come close to describing our emotions. We left the hospital absolutely dazed and shell-shocked. No amount of talking or preparation grooms you for the overwhelming realization of a Huntington's diagnosis.

But life is life and the will to survive and endure is so strong. After the initial horrors of diagnosis, without even knowing it or knowing how, we got through one day, then another and another. Life had to be lived, children had to be taken care of, dinners had to be made, and clothes had to be washed. All the mundane every day chores that were so difficult to perform had to be undertaken, but by doing so, over time it helped maintain our sanity and put structure back into our lives. Months and years went by.

We changed our way of life. Now, nothing was taken for granted. We took pleasure in the simple things in life. We spent a lot of time with the children, talking to them, laughing with them and enjoying them to the fullest. Our home became an open house where everyone congregated. Even as my husband's health deteriorated and the pressure of care giving was sometimes intense, between the sadness and tears, laugher, fun and happiness sprang forth. Our children grew into caring, strong individuals with a depth of understanding and wisdom far beyond their years. They became grounded and focused and well able to deal with difficult situations. We became a strong family unit. We discovered who our true friends were and made new ones through the HD Association. We had a lot to be thankful and grateful for.

Life was good.

For many years our eldest daughter had said "when I am 18, I am going for the test". Always we said to her "wait until you are 18 and then decide". On her 16th birthday she said "only two more years to wait". On the 17th birthday she said "only one more year to wait". On her 18th birthday she asked "where is the phone number?" I showed her where the number was, told her who to contact and then put the information away. If she was really serious about this, she would have to make the first move herself. A few days later she told me that she had called the genetics unit and that they told her they would send an appointment date to her. She waited seven months before the letter arrived. In May of last year she and I went to Crumlin Hospital for her first appointment and once again, followed the familiar grey line on the wall. Over the following months she attended all the prerequisite meetings and appointments with the genetic counsellor and psychiatrist. Her final appointment was in November, the moment of truth had arrived.

Test result day. For the last time my daughter and I followed the grey line on the wall from the reception area, down the long corridor to the genetics unit, the longest, loneliest corridor in the world with so many thoughts and emotions running through our heads. We were brought into a small room. On a cold winter's day once again our lives were turned upside down. It only took four short little words "It's not good news". Our daughter was just 19 years and one month old. I cannot describe the utter devastation and heart breaking pain those four little words conveyed. I did not think pain like that could be borne or endured. Parents strive to protect and comfort their children against the harsh realities of life and it is a parent's worst nightmare when they are in a position where they can do nothing at all. I was utterly inconsolable and it was my strong, courageous daughter who comforted me, not the other way around. We came home and began to tell our family and close friends. We existed, but only just.

But life is life and the will to survive and endure is so strong. After the initial horrors of her diagnosis, without even knowing it or knowing how, we got through one day, then another and another. Our daughter, through her strength and courage showed us that life had to be lived. She is not sorry that she took the test despite her bad result. She has always felt that the 'not knowing' as opposed to 'knowing' was far worse for her. Now that she knows, she is really focusing on her dreams and goals and doing her best to make them a reality. She was, and is, our inspiration. Slowly structure is coming back into our lives. Over time laughter is beginning to creep back into our home. Once again we are starting to enjoy the simple pleasures of life. Nothing is taken for granted.

I am very confident that a medical breakthrough will be made and not in the far distant future. So much work and research is being undertaken and a much greater understanding of HD is being achieved. All of this inspires me to hope and believe.

We have two other children. We do not know if they will decide to be tested or not. That is their decision to make. What I do know now is this; whatever the outcome, whether it is good or bad, life is life and the will to survive and endure is so strong...

Acknowledgement: Hope Annual - June 2006 - Huntington's Disease Association of Ireland

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