Huntingdon’s Disease – the Ups and the Downs…

Lisa’s Guest Opinion Column in the Gazette & Herald Newspaper – March 2014

As I am stood, bent over double, with tears streaming down my face there is a truly horrible moment when I think that I am actually going to vomit. It is rather unfortunate that I have just consumed the largest plate of food imaginable and it is at that point that M decides that it is time to launch into one of his hilarious tirades.

M is recounting a recent experience with a street fundraiser and his tale is so non politically correct that it is off the scale. He manages to not only reduce me to a state whereby I am hiccupping with laughter but he also ensures that I am totally unfit for any kind of professional interaction with anyone else in the drop-in session for a rather long time.

However, on the flip side, there are times when M comes into the session and my heart breaks with sorrow at the state that he is in.

M has been diagnosed with Huntingdon’s disease and since we hadn’t experienced anyone affected by this condition before, we had to undertake background research very quickly in order to understand the noticeable change in his behaviour traits.

Huntingdon’s disease is an inherited condition that is a slowly progressive and interferes with bodily movements, but it also very significantly affects awareness, thinking and judgement and leads to changes in behaviour. The most obvious physical symptoms displayed by M involve a general stumbling around and a lack of co-ordination to his leg muscles, along with a slurring of speech and short term memory issues. Rather confusingly, to the general public, he just appears to be simply under the influence of alcohol.

He is also developing worsening cognitive and behavioural problems and these are the issues that are currently causing the most distress to him. It’s like the filter between his brain and his mouth is totally absent and he just blurts out the first thing that comes into his head, no matter how non politically correct, shocking or even offensive it might be to the other person that he is interacting with. And M’s vocabulary is also getting worse.

“My language is terrible and they just think it is an excuse”.

It is this part of the condition that is currently getting him into the most trouble. Each week M will come into the drop-in with another tale regarding his antics and every time the story involves the same outcome of being arrested and charged. A consequence of which is that there is currently a mountain of outstanding fines piling up and since M is on benefits and unable to work there is no way that he is going to be able to pay them off in the foreseeable future.

Even though M wears an official card around his neck stating that he has the condition, with a brief explanation of his symptoms, he is still finding it very difficult for people to understand the disease. And he knows that it is only going to get worse over a period of time, since he witnessed the deterioration in his mother’s health from an early age. He states that at the age of 10 he knew that she was showing the first symptoms.

“All other mums were doing mumsie things and she just seemed a little bit distant at the time”.

He says that he spent most of his time around his friends’ house since

“her cooking was a shambles”

Looking at him, and the way in which he has already deteriorated over the last 12 months, I wonder just how bad he is going to get and how long it will take until he needs fully supported accommodation.

I truly hope that he will not allow this horribly debilitating disease to impact on his rather special personality and that I will be continuing to cry with laughter for a long time to come.

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