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SHA YoL Guest Blog

This Year of Listening guest blog post is from John Eden, Chief Executive, Scottish Huntington's Association.

Even in an everyday context, listening is not always easy. Many things can get in the way of clear communication between the person transmitting the message and the person receiving it. It might be having the time to explain clearly or to hear the message, it might be a consequence of making assumptions about what the other person knows or it can be about making judgements about another person that degrades good communication.

What if your ability to express yourself or process the information is impaired by a health condition?

For people living  with Huntington’s Disease (HD) that is an everyday reality. People with the condition experience physical difficulties producing speech which can become halting, slurred, too slow or too fast. Their ability to find the right words and construct them into fluent sentences can become impaired. Much of our communication is non-verbal (experts suggest 4/5 of what we communicate) and in HD that can be severely compromised because of impaired motor function. In the late stages of the condition an individual may be unable to communicate verbally at all.

Communication becomes such a crucial issue and potentially a very isolating one. What if you can’t express your likes and dislikes, or tell someone you are in pain or just enjoy the pleasure of a good conversation?

What that means is that we have to double our efforts to ensure that we maintain the channels of communication with people who have this condition and it is largely for us, unencumbered by Huntington’s disease, to take the initiative to ensure we are listening and communicating effectively.

We might use communication aids, like talking mats, or iPads or we might help the person prepare for the loss of their voice by using voice banking or creating communication passports.

What works, like many things, is uniquely individual to each person.

For those of us working to support  people living with HD, it is the commitment to knowing that individual, recognising how they communicate and creating the space to show that we value what they have to tell us that really demonstrates that we are listening.

If you would like to find out more about Huntington's Disease or the Scottish Huntington's Association, visit