Health & Wellbeing
Huntingtons WA’s mission is to enable the best possible health and wellbeing for Western Australians impacted by Huntington’s disease. The following represent a selection of resources available both locally and globally to encourage members of the Huntington's community to live their best lives.
Physical and Cognitive Exercise
We all know that physical and cognitive exercise are good for us however global and local research indicate that there are even more potential benefits for people with or at risk of Huntington’s disease.
Research conducted by Edith Cowan University “The HEROs Research Project” sought to determine whether a prolonged program of cognitive and physical rehabilitation would positively impact on features of the disease. Conclusions from this study were “that a multidisciplinary rehabilitation program can significantly impact the phenotypic expression of Huntington’s disease, resulting in beneficial changes to motor function, cognition, body composition and strength for people symptomatic with Huntington's disease”
A further study, HEROs 2, utilised a similar regime of physical and cognitive exercise with participants who were gene positive and not yet symptomatic with results suggesting that “multidisciplinary therapy is capable of slowing neurodegeneration and improving cognitive, mood and motor outcomes in patients with premanifest HD.”
You can read the full reports of both HEROs and HEROs 2 research here. https://www.huntingtonswa.org.au/research/heros-ecu-research/
Based on the findings of global and local research Huntington’s WA, in collaboration with Edith Cowan University and funded by Impact100 Philanthropic trust, developed an online web based app with the intention of replicating the exercise component of the research and making this available to the broader Huntington’s community. The result is the ImpactHD app.
Impact HD is a health and wellbeing app for people impacted by Huntington’s disease. The app is informed by local and global research and guides participants through a series of exercises, tailored to their level of ability which can be undertaken either at home or in the gym. The app is suitable for people who are at risk, gene positive and at an early stage of symptoms. It is also suitable for carers and family members. The app is available free at https://www.impacthd.org.au/app. As with any new exercise program it is important to consult your health professional before beginning the program to ensure that the exercises are suitable and safe for you.
Whilst there is no cognitive component to the app at present there are a number of sites offering free access to online braintraining and it would be worth exploring something that you enjoy. Simply google: free braintraing apps and choose one that appeals to you.
Other options might include soduku, crosswords, learning a language or taking an art class to name just a few. There are no boundaries, just explore the opportunities that fit your interests and that you will enjoy!
Cognitive stimulation does not just come from performing specific exercises and research indicates social connectedness is particularly important for wellbeing. It is important to explore your hobbies and interests to find the things you enjoy that will keep you engaged with a network of people. Social connectedness generates a positive feedback loop of social, emotional and physical well-being.
Huntington’s WA offers support groups for Carers, youth and young adults as well as a Day Centre Enrichment Program for people who are symptomatic. Participants of these programs feel supported and understood through sharing their stories with others facing the same challenges. These groups offer an opportunity for social connections to develop in a supportive and friendly environment. Please contact the office if you would like to find out more about support programs available in your area.
Story Boards – an activity to enhance social connections
People with Huntington’s may have trouble communicating some of the things that are most important to them, such as special people, interests and likes, which can create a social disconnect. Creating a My Story Board can help put some of that information together in a quick and easy way which can be displayed and read by carers and support staff.
Making a storyboard for yourself or your loved one is a great way to capture and record pivotal information about a person and the little quirks that make us who we are!
My Story Board is an activity in which the person with HD is supported by family, friends or staff to look back over their life and past meaningful events in order to build a snap shot of who they are, where they came from and what they like.
Doing this activity together and asking questions of your loved one can be a great trigger for memories and stories you may not have heard. If your loved one is unable to communicate easily, talking to them about their life as you fill out the questionnaire on their behalf can also be a wonderful way to relive those moments and memories together.
My Story Board is customizable, and you can adapt it to fit anything you think is relevant for the reader to know about the individual! We hope that not only do you enjoy the process of creating a story board, but that it serves as a tool to promote meaningful communication and encourages a better quality of care as others develop a better understanding of who the person is, as we believe learning more about who we are can help others understand us better.
Templates are available to lead you through this activity:
Monica, Youth Liason Officer at HWA, has put together a number of story boards for community members and would be happy to assist with the creation of your story board. Please phone the office on 0864577599 or email firstname.lastname@example.org if you would like assistance.
Playlist for Life
Playlist for Life is an initiative by the UK charity of the same name, and can act as an extension of the My Story Board initiative.
Music connects us to times, places and memories and is an essential part of life, one that people can sometimes lose touch with. The Playlist for Life aims to create a list of songs that someone living with HD can use to reconnect with the memories of people, places, and things that they value dearly.
The following is a guide on how to identify the music that might trigger these memories, and also a list of iconic pop tracks of each decade that might also be helpful.
We all have a playlist. We just need to find the tunes that are special to us and get them all in one place.
Other useful resources
- The Huntington's Disease Society of America provides exercise and workout tips https://hdsa.org/find-help/living-well-with-hd/excercise-physical-therapy/
- The European Huntington Association provides a great resource to encourage people with Huntingtons to engage in physical and social activities Active Huntingtons
- Huntington Society of Canada has a fact sheet on Exercise and HD