Tips for Managing Huntington’s Disease

Learning that you have inherited the gene for Huntington’s can be terrifying and life altering, but it doesn’t mean that your life is over. People with Huntington’s have many reasons to be hopeful with new research, better education, and effective techniques to help you stay in charge of your future.

If you’re dealing with the effects of a Huntington’s diagnosis, there are ways to preserve your physical function, ease your symptoms, and enhance your quality of life by learning as much as you can about the disease; exploring treatment options, including NDIS accommodation; managing your mental health; reducing your stress levels and exercising regularly.

During the lead up to World Huntington’s Awareness Month in May, we want to help spread awareness about the disease and the things that you can implement into your daily routines to help you to live the most comfortable and joyful life possible, including finding suitable options for independent living for disabled individuals.

How to Cope with Huntington’s Disease

Support for Huntington’s disease can start before a diagnosis is even made. Those who have a family history of the disease may choose to be tested for the gene mutation that causes the condition before they experience any symptoms. The benefits of knowing that Huntington’s is likely in your future means that you can gain both social and psychological support early on, learn about tips to manage the disorder, and what to expect and prepare for the challenges that lie ahead.

How can I Improve My Quality of Life With Huntington’s

The best thing you can do if you receive a Huntington’s diagnosis is to seek professional help and support as soon as possible. Taking early action will increase your ability to understand and deal with the many effects of the disorder, while education and support will be your biggest asset as you deal with the challenges you face.

Reach out to your doctor who can organise a team of medical professionals and develop a treatment plan that best suits your individual needs. In addition to this, you can:

• Research online about the condition, treatments, and support mechanisms.
• Talk to family and friends and seek support from the people that love you or who may have experience with the disorder.
• Identify your support network and make use of local resources.
• Don’t forget to continue to do the things that you enjoy.

Manage your Mental Health

Psychological support is key when navigating a life altering diagnosis such as Huntington’s. In addition to seeing a doctor for any physical symptoms, counselling or therapy can help you to navigate the emotional challenges you’re facing. Ample resources are available to you so you don’t have to experience this process on your own. Connecting with people who understand your illness and what they mean for you and your loved ones can have a significant impact on your experience of the disorder.

Manage your Physical Symptoms

Surprisingly, not everyone experiences physical symptoms with Huntington’s. Although chorea is considered the main outwardly visible symptom of the disorder, a lot of people with Huntington’s only ever experience the cognitive and behavioural symptoms which makes it more difficult to accurately diagnose. Whether or not you experience physical symptoms, a regular exercise or workout routine can greatly improve your overall health and well being and help you manage and control the physical manifestations.

Physical symptoms associated with Huntington’s disease can include:

• Chorea – causing involuntary writhing movements that resemble dance moves or jerking movements.
• Balancing – You may find you lose your ability to balance, maintain posture, and walk fluidly.
• Muscle coordination – can be affected by the deterioration of the nervous system causing muscle rigidity or contracture (dystonia).
• Swallowing – as the disease progresses, swallowing, and speaking may become more difficult as neuromuscular function declines.

Exercise has been shown to have multiple benefits for those living with Huntington’s. These benefits include:

• Building strength
• Fighting fatigue and improving sleep patterns
• Improving balance, flexibility, and posture
• Improving coordination
• Maintaining mobility to help you perform everyday activities
• Reduces stress, anxiety, and depression
• Slows disease progression

How do you Slow Down Huntington’s Disease?

Unfortunately, there is still no cure for Huntington’s disease; nor is there a treatment to stop or reverse the disorder. However, there are treatments that can help keep symptoms under control, such as:

• Occupational therapy – assisting with the use of devices that improve functional abilities such as handrails and adapted kitchen and bathroom apparatuses and prolong independent functionality.
• Psychotherapy – a Psychotherapist can provide talk therapy to help with behavioural problems, develop coping strategies, manage expectations during the progressions of the disease, and facilitate effective communication among family members.
• Speech therapy – A speech therapist can help improve the ability to speak clearly and use communication devices. They can also address difficulties with muscles used for eating and swallowing.
• Physical therapy – learning appropriate and safe exercises that enhance strength, flexibility, balance, and coordination to maintain mobility as long as possible and the reduce risk of falls.

Medications that are commonly used for treatment are Xenazine, antipsychotics, and benzodiazepines, though your doctor will incorporate medications into a broader treatment plan.

With the help of multiple interventions throughout the progression of the disease, someone living with Huntington’s can adapt to changes in their abilities for a certain amount of time. Treatment goals can be regularly reviewed and updated with your team of medical professionals to ensure it’s working to the best of its ability to suit your situation.

How to Manage Huntington’s at Home

Huntington’s disease produces many challenges over the progression of the disease for those who live with the disorder, their family members, and their in-home caregivers. There are many strategies that can help you cope with the progression of the disease beyond what your team of medical professionals does. These lifestyle interventions can be the difference between a satisfying quality of life and a substandard one.

Eating and nutrition

Difficulty eating, higher caloric needs due to constant physical exertion, and metabolic problems may cause you some difficulty in maintaining a healthy body weight. Dietary supplements or increasing the number of meals a day may help to keep you at a healthy body weight.

Difficulty chewing and swallowing and the degradation of other fine motor skills can increase the risk of choking and limit the amount of food you consume. By removing distractions during meal times and selecting foods that are easier to eat, you can help minimise these problems initially. Your occupational therapist may also recommend custom utensils for those with limited fine motor skills. 

Reduce stress and anxiety

Unless you’re someone who thrives off the thrill of a demanding lifestyle, everyone wants to reduce their stress levels and this is all the more important for a person living with Huntington’s. There are many effective medications that can aid in reducing your anxiety and stress levels, though these should be used in conjunction with a complete treatment plan to manage any unwanted side effects. There are also effective lifestyle modifications you can implement to decrease your stress and anxiety:

• Planning enough time to accomplish any tasks
• Creating a relaxing environment in the space you spend the most time.
• Socialising with positive people
• Getting involved in worthy causes
• Joining a support group
• Healthy food and sleep
• Regular exercise
• Meditation

Anticipate imbalance

Huntington’s disease can affect your ability to balance and might cause you to lose your footing. Be smart when moving around and protect yourself with some basic self-preservation precautions:

• Learn to take things slowly.
• Change direction with a u-turn rather than a pivot.
• Keep your posture as straight as possible and look straight ahead instead of at the ground.
• Retrain yourself to plant your heels first when you take a step.
• Avoid walking backwards.
• Try to avoid carrying anything when you walk.
• Install railings or another safety apparatus on stairs or hard to manoeuvre places.
• Consider using a cane or a walker that will help you move around safely.

Prepare for end-of-life Care for Huntington’s Disease

Although many people with a Huntington’s diagnosis experience a slow progression of the disease and typically HD progresses for 10 to 30 years, it’s essential to be prepared for any and all circumstances. It’s important to anticipate the care that will be required in the advanced stages of the disease, as well as end-of-life care. The earlier these discussions occur, the more likely it is that a person living with Huntington’s can be engaged and participatory in the decision making process while effectively communicating their preferences.

You can create legal documents that outline the decisions that have been made for progression of the disease and end of life care. This empowers the person living with the disease and also avoids any family conflicts that may arise later in the disease progression. Please consult with a doctor or other palliative care professional for appropriate guidance regarding diverse care options. 

Things to consider when preparing for the progression of the disease:

• Care facilities – consider in-home nursing or assisted living facilities at the advanced stages of the disease.
• Hospice care – for end-of-life care with as little discomfort as possible.
• Living wills – for care preferences once a person with the disease is unable to make decisions.
• Advance directives – to identify people to make decisions on your behalf for medical and financial decisions.

If you’d like to learn more about how Maple Community Services can support you through your diagnosis, please don’t hesitate to reach out for a consultation. We want to help you to live your life to the fullest.

Is There a Breakthrough in Huntington’s Disease?

Thankfully, we’ve come a long way in the last few decades and there is hope for the future of Huntington’s disease. People are getting better at managing the complications of the illness and are living longer and better than they ever have before after receiving a Huntington’s diagnosis. 

Scientists are testing what may ultimately be an effective treatment for Huntington’s disease and could be available within a decade. It is a naturally occurring protein that seems to slow the progression of the disease. Scientists are now working on a drug to boost the activity of that protein and that may be available for clinical trials in 5 years time. Here, Biospace discusses the recent Novartis research that led to its discovery and its potential for commercialisation