The Huntington's Scene In  New Zealand

Site Maintained by
Graham Taylor

Articles taken from the Dec. 2003 Huntington's News. The Quarterly Newsletter of the Huntington's Disease Associations of New Zealand

A reader’s experience

Over the past few weeks we have come up with an amazing discovery.  My husband has been in and out of different rest homes for the past 10 years.  Each place handling things in different ways.  Every time my husband tried to voice an opinion, it was said to be verbal abuse or verbal aggression and so he was given another tranquiliser.

This continuing level of medication made life difficult for my husband and he kept saying to me “I can’t do it, I can’t feed myself’ etc.  He was verbally trying to make himself understood etc and the medication ‘to make him manageable’ as they kept telling me, made for a very sad existence and the cycle of frustration continued.

Since he was transferred to a new ‘home’ I have spent every day with him and I have nursed him back to health from a very ill, sedated person.  He is now, a very bright eyed, walking, talking human being again.

Every day between 1pm and 1.20pm he would become distressed and it was hard to settle him.  One day in desperation, I got some sandwiches which he devoured immediately.  I then realised that he was just absolutely starving.

The pureed diet which he didn’t need was going straight through him and left him hungry.  I got his diet changed to a normal one and the difference is amazing.

After this experience, whenever he started to get agitated, we would give him a couple of sandwiches and he would plateau out immediately.

This to me is an amazing breakthrough.  We no longer have to give him medication to control his outbursts, just something to eat.  In our case, the answer has certainly been keeping up a regime of small amounts of food, often.

It is much nicer to have a person with bright eyes and who can communicate with you than to have a zombie, just so he is ‘manageable’.

I thought other caregivers may benefit from our experience.