Although many symptoms are common, it is important to know every person’s experience with HD is different, which leads to different requirements for each individual. There are, however, some common patterns that can help you to understand the general progression of the disease.
It is just as important to know that a diagnosis of HD does not mean reduced quality of life. Living at risk, gene positive or with symptoms may affect some aspects of your life, but many people find great joy in spending time with loved ones, and focussing on each day as it comes. Don’t feel afraid of reaching out for support from loved ones and health professionals if you feel it may help you.
Huntington’s disease affects three key areas: cognitive function, physicality and emotions. The order in which these may be affected is different for everyone, although many people find their cognitive function is the first to be affected. For more information about symptoms, please visit our Symptoms page.
Huntington’s disease affects physicality in a number of ways. Initial physical symptoms can include fidgeting, twitching and some clumsiness. As the disease progresses, you may find your walk is impaired, your speech may become slurred, and you may have difficulty swallowing. Certain activites, like driving, may need to be reconsidered or stopped. HD can also cause uncontrolled jerking movements known as chorea. Due to increased muscle weakness, many people with HD may find themselves tripping over or bumping into things more often due to chorea.
Health professionals agree that staying physically fit and active can have a significant impact on the health of someone with or at risk of HD. Activities that strengthen muscles and assist balance are excellent, and have been found to delay the onset or progression of symptoms, and improve mental health. If you are concerned about depression or anxiety, keeping physically active can certainly help, although you should definitely seek help from health professionals if they do not improve.
Shoe choice can be very important if you begin to find yourself tripping over more frequently. High heels, slip-on shoes and worn footwear are unsupportive and can all contribute to a fall, as can suddenly changing direction while walking.
Changes in sensation and perception can lead to accidents, so it is important to be aware of this and avoid or minimise risks wherever possible. Altered sensation includes difficulty determining temperature changes (causing burns, etc.), and not properly treating minor wounds that can lead to infection. Changed perception may lead to increased falls, as distances and heights of objects are misjudged.
It is important to maintain a healthy and nutritious diet when you are at risk of or living with HD. Eating well can help improve your brain’s health, which can have an impact on symptoms, and your body will respond better to all activities if it is fed properly. If in doubt, speak with a dietician about your dietary requirements.
People living with HD will need to consume significantly more food than others, as symptoms can cause them to burn a lot of calories which can lead to significant weight loss. High-calorie food is very important to keep weight stable, and you can also include supplements like protein shakes, milk-based drinks, sandwiches and cheese and crackers in between meals to help keep full. You may also need to increase portion sizes to counteract any spilled food from uncontrolled movement.
It is important to allow plenty of time for meals, eat at the table (and not on the couch), and minimise distractions while eating. As symptoms progress, swallowing can become difficult. At this time, you may need to change the texture and consistency of the food, and you should always have liquids available to drink. Little changes, like increasing the amount of butter on sandwiches, removing grains and lumps from food, and processing food more finely, can make a significant difference when swallowing.
If you find that swallowing is becoming very difficult, you may need to speak with a health professional to find a better solution. Speech therapists, physiotherapists, occupational therapists, dieticians and other professionals can all assist in finding the best solution for you, so it is important to include them in your planning.
It is important to maintain healthy relationships if possible, to ensure you have plenty of support if you need it. It can also be very valuable to seek out support groups for others with HD or similar diseases where you can gain significant social support, up-to-date information and suggestions on lifestyle improvement.
Some people with HD find themselves lacking social inhibitions, meaning they may say or do something generally considered to be socially inappropriate. They may also have fewer inhibitions regarding sexual activity, and may be inappropriately forward or promiscuous. Not every person experiences this, but it is important that the person and their loved ones understand it is a symptom of the disease.
There are plenty of things you can do to ensure your home environment is suitable for you. Keeping your home clean and tidy can reduce risk of infection and remove tripping hazards. Having steps removed or replaced with ramps, carpets fixed to the floor, and non-slip mats in bathrooms can make a significant difference. It can be beneficial to have an occupational therapist, physiotherapist or other allied health professional review your home.
When supporting someone with HD, it is important to understand the symptoms they may experience. Once you understand how they may be affected, you can understand simple ways to support them. If they are experiencing cognitive symptoms, you can help them by adapting your behaviour. Don’t change the subject quickly, give them time to answer, and sit down or stand still in a distraction-free environment when talking with them. If you are walking and talking, allow them to stop moving before they answer you.
HD affects the area of the brain responsible for emotions, and so it is common for emotions to be affected in HD. The person may become irritable, sad or apathetic, and very inflexible and mentally rigid. These symptoms are normal, and although they may seem frustrating to you, try to remember that it is a part of the disease. However, health issues like depression and anxiety are entirely treatable by health professionals, and should not go unaddressed.
One of the questions most asked about HD, once a person shows symptoms, is “Over what period of time does HD progress?” This is difficult to answer since HD affects people differently. It is usually a slow, but progressive condition. An affected person may live for 15 to 25 years or longer after developing the first symptoms.
People with HD can improve their quality of life by remaining active. Walking, reading and maintaining friendships can make a big difference to their physical, mental and emotional health.