Thursday, May 2, 2013

What to Blog About


To blog or not to blog that is the question that has plagued me for the last few months. Health reason have keep me quite, but also I just don’t seem to have a lot to say.  Plus I always feel I should be writing and working on my stories.

So I thought I would share with you a bit about a disease that has crippled my Mum for the last few years. (I’ve probably written about this before so sorry if it is a double up)

George Huntington wrote about an illness Huntington’s Disease in 1872, although he was not the first to discover the disease. It is believed Huntington’s dates back to the Middle Ages.

What Is Huntington's Disease?

It is usually characterised by involuntary movement and intellectual, emotional and behavioural problems.

It is more common for HD symptoms to appear when a person is in their mid thirties to late forties. There are however cases where the disease can develop in childhood or an elderly person. My mum was diagnosed in her early eighties.

Although treatment and research of HD has improved lately at this stage there is no cure for the disease.

What Causes Huntington's Disease?

HD is caused by a defective gene which results in the gradual destruction of neurons (brain cells), particularly in those parts of the brain known as the basal ganglia and the cerebral cortex.

This defective gene has a 50/50 percent chance of being passed on from one generation to the next. This means a child of a HD patient has a 50/50 chance of getting HD. If that child is also diagnosed with HD at some point in his or her life the defective gene it will eventually become active and brain cells in the body's central nervous system will start to die. This is when a person begins to develop the symptoms of HD. I am one of the lucky ones and don’t have the gene.

What Are The Symptoms Of Huntington's Disease (HD)?

Early Symptoms

The early symptoms of HD may include:

Ø  forms of nervous activity like fidgeting, minor twitching in fingers and toes;

Ø  excessive restlessness;

Ø  some clumsiness;

Ø  slight alterations in handwriting; and

Ø  minor difficulty with normal daily physical skills like driving.

Apart from the physical symptoms of HD, there are often very subtle intellectual or emotional signs as well, such as:

Ø  short-term memory loss;

Ø  less ability to organise routine tasks or to cope with new situations;

Ø  periods of depression, apathy and irritability; and

Ø  impulsiveness.

Of course just because a person has emotional outbursts, does something clumsy or forgets a task it is not necessarily a sign that they have HD. These things can be just as easily experienced by a person who does not have the defective gene at all. (I do that all the time and I’ve been tested and it came back negative for HD)

Advanced Symptoms

As HD progresses the early physical, intellectual and emotional symptoms become more marked.

In many cases the person with HD will develop involuntary movements like jerks and twitches of the head, neck, arms and legs. Sometimes, people with HD will develop rigid muscles instead of involuntary movement.

All of these physical symptoms can make walking, speech, swallowing and other basic tasks more difficult as the disease progresses.

Is There A Test For Huntington's Disease (HD)?

In a word ‘YES’. But it is a personal choice as to whether a person wishes to go down that road. At first I had decided not to have the test, but after awhile I changed my mind and was one of the lucky ones. I can now go on with my life knowing my children and grandchildren will be safe as HD does not jump a generation it has to be passed down via a direct line.

More Information.

If you would like more information on HD you can contact Huntington's New South Wales.

Cheers for now.

Sandie
http://www.huntingtonsnsw.org.au/helping
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