May is Huntington’s Disease Awareness Month
THE ASSOCIATION of Movers and Shakers is a registered charity based in Almoradí, working across the Costa Blanca area. We offer a local contact point and mutual support in a friendly atmosphere, where families, carers and friends can share thoughts and experiences. We rely entirely on donations and money raised through fundraising events to support the work that we do.
Over the next few months, we are sharing information about each of the diseases and the people we support who are affected by: ataxia, Huntington’s disease, multiple sclerosis, motor neurone disease, and Parkinson’s disease.
This week we are focusing on Huntington’s disease.
What is Huntington’s disease ?
You can't catch Huntington’s, it is hereditary. Every child conceived by a parent with the Huntington’s (HD) gene has a 50% chance of inheriting it, no matter what their gender or race.
The faulty gene causes the brain to slowly deteriorate, affecting the nervous system, causing changes with movement, learning, thinking and emotions.
It has been described as the most horrible disease known to mankind, as in most cases the HD sufferer has seen the effects of the disease in their parents or siblings and knows exactly what their future is.
So, imagine that you have Alzheimer’s – your brain loses its ability to understand things or recognise people.
Then, imagine that you have motor neurone disease – your brain is okay but your body gradually disintegrates around you.
Then imagine that you have Parkinson’s – your brain is okay but you lose control of your body causing uncontrollable movements.
Then add schizophrenia – which is so unpredictable and causes rapid changes of mental state and you are no longer yourself.
Put all these together and you have HD.
HD devastates lives and affects generations of families
David Smith
In 2012, I was diagnosed with Huntington’s. I had put off having the test because I didnt´ see the point. I knew that I had it anyway and I didn’t want to have my driving licence taken away and lose my independence, like my father and brother, but I started to have problems at work with dropping things, concentrating and being unable to pick up tiny objects that I had to use.
My daughter was becoming worried about her future and making plans to marry her boyfriend. She wanted to have the HD test but did not want to do so before me for obvious reasons, so that prompted me to seek advice.
I was not surprised by the result, but nonetheless it was still hard to take and even harder breaking the news to our children, knowing that I could have passed it on to them.
Both our children had flown the nest and we were considering downsizing, but following a visit to my wife’s sister here in Spain, we made the brave decision to sell our house in the UK and move here as well. We liked the relaxed atmosphere and the better climate. We truly believed that it would help slow down the disease. Of course, I know that the end result will still be the same, but I see a very good neurologist in Orihuela, who is keeping an eye on me.
Also, I have a good support network of friends, family and neighbours around me and know that when the time comes they will be here for me.
Since moving to Spain, we have met some other HD sufferers, which has been a great help. It is good to talk to someone else in the same situation. We meet every Friday at The Movers and Shakers Friday Club at O’Briens in El Raso urbanisation (Guardamar del Segura), for a drink, a snack and a chat. Likewise, partners, who are also our main carers, can talk about what they are going through, as it is not easy caring for someone who has a neurological
disease. It can be daunting sometimes, coping with their anxieties. So, we support each other through difficult times.
Although there is no cure for Huntington’s there is hope. There are a number of clinical trials hoping to suppress the effects (although in their early stages), we know that it is a big step forward and gives hope for future generations.
There is also a test that can be done on unborn foetuses to detect the faulty gene. The parents then have the option to abort the pregnancy. This will eventually help to eradicate the disease.
The good news is that I did manage to walk my daughter down the aisle, and, unbeknown to me, she had the predictive blood test and came up negative, which means that she and her husband can have children without the worry of passing on this terrible disease. Gulp!