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Issue 101, June 2008

Personal Story
Huntington's - let's get positive.

By Maree Thomson

Where to start - at the beginning is as good as any.

My mum was a wonderful, caring person who worked hard and enjoyed life, we were very close, a great mother, daughter team. As mum got older she started to change, although I didn't notice this at first, it was much later on - near the end that I realised that she had been slowly getting sick for many years.

Not being diagnosed with H.D until the last year of her life (died age 61) meant that she was prescribed a large cocktail of drugs for depression and mental illness, and spent some time in a mental ward in hospital and generally treated as a mental patient for a number of years. I loved my mum but the last 5 years of her life she had gone and this total stranger had invaded her body, it was very difficult to cope with the drama of her daily life and when I found out that the disease was hereditary my heart sank, seeing my nana sitting there eating pureed food and shaking with tremors I realised where it had come from.

Although nana lived in her own home and doing very well for herself up into her seventies she did have some symptoms of H.D not enough to be diagnosed with though, had mum not been so sick I would have dismissed the whole thing as nothing to worry about -just another old age thing. The contrast between the two was incredible, one into old age, the other a middle aged woman not able to boil an egg.

So I decided to get tested for two reasons, that I was not wrongly diagnosed at any time as mum had been, also having a special needs son who requires adult supervision and it was going to become very difficult for me to look after him if I become ill and I felt that my husband would have enough to cope with in time, without having to look after our child as well.

Three months after mum's test results mine arrived. Positive with a CAG count of 41 the same as mums, strangely enough I was not surprised as I had a feeling that I was not going to get off lightly.

It was an awful year: H.D diagnosis for me in June, placement for our son in residential care in July, my mother-in-law passed away in the September, my mother died in the February, nana in the June and a week later we had to get the family dog put to sleep, I had also changed jobs in the February to full time employment - Stress City here I come.

As with everything that I do nothing is done in half measures so I went and got properly depressed, anyone familiar with depression will recognise the symptoms - great big black hole, no future, better to end it all now. I had a wonderful husband and I loved him dearly and putting him through the minefield of Huntington's was something that I did not want to do, I loved him too much for that and wanted to set him free. This was all well and good in theory; practical was a different story - when I told him to leave me I got a definite no! -The marriage vows said in sickness and health and he was not going anywhere, besides he said - nobody else would have him I had to agree with that.

Well now to the future, after getting really sick, finally went on antidepressants and started to feel better and realised that I still had a lot to contribute to this world and was not going to waste another minute of the precious time that I still had, in fact I was annoyed that I had wasted four years of my life. As I said antidepressants played a large part in my recovery, they enabled me to see past the pain and helped me to embrace the healing that came later. One of my main problems was the inability to understand "why me, what on earth have I done to deserve this", you could say this was spiritual although I was not a religious person I was very angry at somebody and decided that God was to blame, so we had not been on speaking terms for a number of years.

I quite by accident went to a medium show and became intrigued by the afterlife (at the time my main objective was to talk to mum) and again by chance happened to choose a book from the library that for me answered most of my questions and helped in finding real peace within myself and acceptance of what my life is and will become. The other major influence in my life and to be honest I don't think I would have made it if not for the fantastic support and love from family and friends - they were there in the dark days and I feel good in knowing that this support is ongoing.

Well with all this positive support and help bombarding me from left, right and centre I didn't really have much of a choice and had to get up and get moving. I set in place some goals which I thought I would share with you. I have made a Wish List and have now completed over half of it; I am still working part time and also have made time to do volunteer work as well. Taking health pills to combat some of the effects of HD is a positive step for me as I feel that I am taking back some control that was lost to me. I have also bought ying-yang balls when I read somewhere that they are good for brain gym. Walking is good for oxygen getting in the brain, so I try to walk as much as possible. I am reading, keeping a journal and generally trying to do as much as possible to help myself as this will help in the future.

So my motto is - I will get sick when I am good and ready and not a moment sooner.

If this article helps just one person then I feel that I have achieved my ultimate goal.

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