Support group for Huntington’s

2015-07-30 08:16

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AFTER suffering the loss of her husband to Huntington’s Disease — an incurable, degenerative disease of the nervous system — a Pietermaritzburg woman, whose son has recently been diagnosed with the same illness, is looking to start a support group.

The Hayfields woman, who asked only to be identified as Belinda, said the disease has affected her family for many years.

Belinda did not want to reveal her surname saying she did not want to bring attention to her son.

Belinda said she wants to offer a support structure to the carers who look after people with Huntington’s Disease. “I want to meet once a month with those people who have to take care of those suffering with Huntington’s Disease. I am one of them and I know from experience with my husband and now my son that we need support,” said Belinda.

She said taking care of someone suffering with Huntington’s Disease is very challenging and many carers and family members “suffer in silence”. Belinda is also seeking the assistance of doctors and psychologists who will attend some meetings to offer advice and guidance. For those who want to join or assist Belinda, please call her at 082 218 9094.

Huntingtons Disease damages selective parts of the brain, leading to specific difficulties in thinking, which in turn give rise to changes in behaviour.

Behavioural changes are a characteristic feature of Huntington’s disease which to most families is the most distressing symptom of the disease.

Other symptoms such as frustration, irritability

and loss of confidence is also related to Huntingtons Disease.

As the disease advances, uncoordinated, jerky body movements become more apparent, along with a decline in mental abilities and behavioural symptoms. Physical abilities gradually worsen until coordinated movement becomes difficult. Mental abilities generally decline into dementia. Complications such as pneumonia, heart disease, and physical injury from falls reduce life expectancy to around twenty years from the point at which symptoms begin.

The person diagnosed with Huntington’s disease may show a loss of drive and initiative. If left to their own devices they may do nothing, stay in bed or spend the day watching television.

- Information obtained from the Huntington’s Disease

Association Neurosupport Centre website

Read more on:    pietermaritzburg  |  disease

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