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Living with
Huntingtons Disease
Caring for
Someone with HD
Finding out that a family member may develop or does have Huntington’s disease
places physical,
emotional and financialstress on all of the family members, and these are
important things for anyone
involved in the care of a Huntington’s disease sufferer to consider.
Effects in Social Relationships
A majority of the symptoms of the
disease affect what most people would consider "personality". With
the
loss of basic communication, changes in behaviour and motivation, a person may
become very different from the one you have known before the onset of the
disease. This added to the stress of illness and change in lifestyle can have a
profound effect on social relationships, not just between carer and sufferer,
but also amongst family members themselves. It is important that these issues
are addressed and all that can be done is done to try to minimise their effect.
Communication
Communication skills are affected in Huntington’s disease. It affects specific parts of the brain, leading to specific difficulties in thinking and therefore specific changes in behaviour. Some of these symptoms are listed elsewhere on the website. This aspect of the disease inevitably has an effect on social relationships.
Communication is the way in which we express ourselves, and allows us to gain control over our environment. What we say, how we say it, the thought processes needed to plan what we say, and movements (a vital part of communication) are all affected by Huntington’s disease. The loss of these skills means a sufferer can become frustrated and trapped, unable to express themselves.
Problems usually begin in a mild form, but progress with the disease. At any one time the severity of these symptoms may vary, meaning sufferers cannot rely on their ability to express a desire at any one time, and a carer may not know when a sufferer is unable to communicate or simply does not want to.
It is important to remember that even in the final stages of the disease sufferers will always have something to say, and an inability to express these thoughts and desires will result in frustration. Often acts of frustration and aggression are a way of communicating and exerting control.
Speech and language therapy along with making sure all involved in the care of a person are aware of these problems, as well as learning strategies for coping can help with improving communication. Your GP or specialist can help with access to these facilities.
Talking to children about Huntington’s disease.
The difficulty in explaining to a child what is happening to a friend or relative, along with the direct implications for the child itself (due to the hereditary nature of the disease) makes speaking to a child about Huntington’s disease a sensitive issue.
Although a child is unlikely to understand the full implications of the disease, a change in a family member and lifestyle is unlikely to go unnoticed. Often the person with Huntington’s disease becomes short-tempered and less tolerant. Children may feel that this is in some way their fault. Also relationships between parents and children can suffer if a parent is trying to hide something. By explaining what is happening, the child will become more comfortable with what is happening and these problems may be reduced. Also informing a child makes it easier for them to make decisions later on and cope effectively.
The Huntington’s Disease Association (HDA) suggests having a list of answers prepared for when your child asks questions, so that you are not caught off guard. For example, "What is Huntington’s disease?" "It is an illness which affects the brain." They also state that it is better to start off with simple explanations and to build up the information in response to questions and increasing demand from the child.
Denial of illness
An upsetting and difficult part of the disease process may come for some people at the onset of symptoms, if the sufferer is unwilling to admit that anything is wrong. This may not simply be due to unwillingness to accept the presence of the disease (denial). A patient may genuinely not experience their symptoms as observers view them. For example, research shows that they do not have normal experiences of their involuntary movements, and therefore will not see the implications. This can be (although is not always) a part of the disease process.
Making a will
A will is a legal document, which allows an individual to state how they would like their assets to be distributed after their death. A will should ideally be made before or at the beginning of the onset of symptoms, whilst the individual is legally regarded as being of sound mind, i.e. capable of making these decisions.
A living will or "advanced directive" is a legal document which allows an individual to state, before an event occurs, under what circumstances they would like their treatment to be stopped.
It is important that both a will
and a "living will" if desired are created with the help of a
solicitor.
Scottish Huntingtons Association,
Thistle House,
Tel; 01505 322245,
email: sha-admin@hdscotland.org.uk
The Scottish Huntington's Association is
a Registered Charity: No 121496.