Living well with Huntington’s disease begins with understanding the condition. By knowing as much as you can about Huntington’s, you’ll be better informed to make the best decisions for you and your family.
Many people do live fulfilling lives with Huntington’s by taking positive steps to take care of their health and maintain active relationships with their family, friends and community.
Live a healthy lifestyle with exercise and good nutrition
Everyone benefits from eating a balanced diet and participating in enjoyable forms of exercise. If you have Huntington’s you can improve your wellbeing by adopting a healthy lifestyle. Good nutrition and suitable physical activity can offer significant benefits for your mind and body.
Regular exercise offers proven benefits for physical and mental health. Exercise can help with managing stress and boost the immune system. It can improve the quality of sleep, boost energy and improve mood and concentration.
Choose types of exercise that you find enjoyable and comfortable. It can be as simple as taking your dog for a walk or doing some gardening. Activities like yoga and Tai Chi can help increase muscle strength, coordination and flexibility. Many people report feelings of calm and awareness after taking part in these activities.
Maintain relationships and interests
Try to maintain your usual interests and friendships. If you enjoyed reading before your Huntington’s diagnosis, continue this activity as it will help you keep your brain active and interested in the world around you.
If you loved to go fishing, find ways to continue that pastime. Above all, reach out to friends and family and make sure you allow quality time with them.
Huntington’s and communication
For most people living with Huntington’s disease, speech and communication will become compromised. Speech difficulties may be mild in the early stages and become more severe later on.
But with the help of a speech pathologist it is possible to maintain better speech for longer.
A speech pathologist can also teach strategies to carers to make communication easier and clearer for both parties.
Huntington’s and driving
In the early stages of Huntington’s it may be safe to continue to drive a car, but over time certain mental and physical functions are likely to become impaired, such as:
Reduced mental and physical reaction time
Impaired problem solving and concentration
It is advisable (but not mandatory) to inform your insurance company of your condition.
The Department of Transport of Western Australia requires you to inform them of your Huntington’s diagnosis.
Huntington’s and swallowing
Maintaining good nutrition is important for everyone, but people living with Huntington’s may experience difficulties with swallowing that can make it difficult to eat a balanced diet.
Swallowing problems vary but may present as choking episodes, difficulty moving food down the throat and regurgitation.
An MSWA speech pathology/dietetics team can assess your swallowing and recommend ways to help you eat and drink safely.
Therapies and treatments
Physiotherapy and occupational therapy can make a big difference to self-sufficiency and mobility for people living with Huntington’s.
MSWA physiotherapists can prescribe exercises for different parts of the body, ultimately to avoid falls, improve balance and coordination and help correct walking and other mobility functions.
As the condition progresses physiotherapists can recommend wheeled walkers and other mobility aids to keep the person as mobile as possible for as long as possible.
Our occupational therapists can assess your mobility and functional issues and your home, and recommend aids such as rails and ramps and other items to help you move about safely. They will work to help you retain your ability to do the things you want to do, whether daily household tasks or special activities that you enjoy.
If you’re living with Huntington’s, MSWA’s multidisciplinary team of physiotherapists, speech pathologists, dietitians, occupational therapists, counsellors and social welfare specialists provide a wide spectrum of services and support to help you get the most out of life.