Living with Huntington’s disease – optimism, resilience and Speech and Language Therapy
A year ago, NR Times spoke with Darran, who lives with Huntington’s disease and is supported by St Andrew’s Healthcare. One year on and to mark Huntington’s Disease Awareness Month, we hear from Darran again in this reflective piece from David Phillipps, a student Speech and Language Therapist from De Montfort University, who recently completed a placement at St Andrew’s and worked with Darran during this time
David Phillipps, student speech and language therapist
I met Darran whilst on my final year Speech and Language Therapy placement at St Andrew’s Healthcare, Northampton. He welcomed me into his flat, fully equipped for independent living, and agreed to be interviewed for this article and to talk openly to me about his Huntington’s disease.
Darran’s involvement around the charity is impressive; for example, he has recently input into the five-year strategy for the charity, contributing on behalf of other service users. He has also had pieces published previously in NR Times, as well as The Independent. This is his purpose, he tells me – to spread the word about living with HD, educate people on what they can do to support people living with the condition, and speak up for people with HD who have lost their voice.
Communication changes related to Darran’s HD
I joined his weekly sessions with Speech and Language Therapy, with Abi, the Speech and Language Therapy Assistant (SLTA). Darran has a programme of tongue and lip strengthening exercises to maintain muscle strength and function vital for eating and drinking, which he completes every day, three times a day. He also completes breath support exercises, which help to improve the coordination and strength of the muscles involved in breathing, which in turn can improve the production of speech. These exercises aim to support Darran to speak more clearly and loudly and to sustain his speech for longer periods of time.
Guided by Abi, Darran completed each exercise with great perseverance, despite the effort required with some. Whilst these sets of exercises can’t cure degenerative diseases, they can help individuals maintain their quality of life and independence for as long as possible, and Darran has been keen to be involved in the programme. His resilient attitude and constant work to keep himself as independent as possible for as long as possible is admirable.
When I asked him how his communication has changed since his diagnosis of HD, he told me that he is more aware of his difficulties these days than he used to be. He describes his speech as “a bit wobbly”, and he mentioned that he finds it a little more difficult to speak. He also commented that the volume of his speech has decreased over time and that he finds difficulty projecting his voice during group conversations.
Darran talked about some of the public speaking opportunities he has had recently, reflecting that he gets anxious about this, but nevertheless confronts it head on. “I get a bit of stage fright when there are lots of people,” he says. “I’m interacting more than I have ever done and I’ve never had that input before. It’s hard for me to share but I feel proud when I do input into that.”
Much of our conversation focussed on how people interpret his communication, and he tells me that he has difficulties “getting sentences out, I can be misunderstood.” He described being bemused at the fact that people misunderstand him, and that recently he has become more aware of it. People often ask him to repeat what he has said.
This extends into how he is perceived in the community. He tells me that when he goes into town he has been mistaken for being drunk, or given strange looks. This highlights the importance of what Darran is doing – educating people on HD and how it affects life in ways that many of us may not consider. He says that people present themselves differently to him these days and this results in him minimising his choices, for example, going to less places and going out less frequently. Recently, he’s taken to wearing a lanyard which identifies him as having HD, which has helped change people’s reactions to him.
Darren also shared that he is more aware of his expressive language changing as his HD progresses. He often talks around a subject or makes slightly atypical word choices when he can’t think of the word he wants to say. He has previously had weekly sessions of Speech and Language Therapy at St Andrew’s to develop techniques to help his verbal memory, which he now uses throughout his day to day life.
Darran works hard to maintain his independence, explaining that he feels very lucky to be at St. Andrew’s. He told me that following his diagnosis and before coming to St Andrew’s, he experienced very little in the way of support. He watched a video detailing the later stages of HD with his GP and he asked to be introduced to a support group, but was told he was not ready. Darran feels that a support group would have done him a world of good after his diagnosis, telling me how isolated he felt in those first few years. Here in his flat, he says: “I have support now – that’s why I’m staying here. I have tools in place and a network around me.”
The grounds of St Andrew’s Healthcare
Supporting people living with HD and their communication needs
Every week Darran meets with a number of different staff from the multidisciplinary team at St Andrew’s – each of these professions contribute to a supportive environment, with resources such as memory booklets and a calendar to organise his schedule. He said: “Each staff member brings more to the day”. He mentioned that support also comes from fellow service users and the setting itself, and he regularly meets up with other service users for breakfast or a chat, and he told me that his favourite thing about the hospital is the beautiful grounds.
I asked Darran what people can do to support him with his communication. The big thing is giving him time to process what has been said, so he can understand and engage. He also referred to the benefit of visual, accessible information to help him remember points that are usually verbal, as an example of this, around his flat he has laminated sheets reminding him of the oro-motor exercises he is encouraged to complete regularly.
What is voice banking?
We also discussed voice banking as an option for him going forward. Voice banking is a series of recordings of an individual speaking, which then creates a synthetic version of their voice, which can be stored until it is needed. There are now options to ‘repair’ the voice synthetically too so that this service can be offered to people who already have symptoms of dysarthria (unclear speech due to muscle weakness).
This synthetic voice can be used on electronic communication devices to generate any utterance in a voice that sounds like the person’s. This can be really important as part of preserving an aspect of a person’s identity as HD progresses and they lose their ability to speak in an intelligible way.
Voice banking is a new service that the Speech and Language Therapy Team are starting to offer at St Andrews, using SpeakUnique technology. Darran talked positively about the idea, saying that he is glad that software is changing to support people like him. He is due to start banking his voice imminently.
“The people around me at St Andrew’s are my happiness.”
We also discussed his hopes for the future, and his immediate answer was around retaining his quality of life. I asked him what that means to him:
“Support, going into Northampton, having the umbrella of St. Andrew’s as a backup, independence… I would want to go out or downtown even if I had a mobility scooter. Living locally, I can have my cake and eat it.
“Here in Northampton, St. Andrew’s is just up the road if I need Speech Therapy or other therapy. I don’t have family, so I don’t have that input from anyone else.”
Darran went on to say “the people around me are my happiness.”
Darran has certainly had an impact on me; his optimism, generosity and honesty will stay with me. It is this kind of feedback, knowing that your regular sessions make a genuine difference to someone’s quality of life and happiness, which mean everything to a therapist, particularly to me as a student just embarking on my career.
Long may Darran retain his independence and continue to receive the support he so benefits from, and long may he continue to speak for his community to raise awareness around Huntington’s disease.
