What Treatments Are Available?
While there is no cure for HD at this time, rehabilitative therapies such as physiotherapy, occupational therapy, speech and language therapy and diet and nutrition expertise can help manage physical symptoms. Support and information, neuropsychological and psychiatric services can help with cognitive and emotional changes. It is important to discuss your symptoms with your GP and ask for the assessments you need to help you manage your condition. Your neurologist will assess your symptoms and talk to you about ways to manage and treat them including medication and support from various health professionals. See HD Awareness Video
A healthy diet, regular exercise, keeping our brain active and avoiding undue stress are important. Self- care can help you cope with the symptoms of the illness and maintain a better quality of life for many years. Keeping a healthy body weight is essential for managing physical health and well-being. Anecdotal evidence suggests that this can help to reduce involuntary movements, and improve speech, swallowing and mood. If you are under weight or dropping weight you can seek a referral to a dietician and speech and language therapist for advice.
Relaxation and mindfulness training are helpful for managing stress as well as helping people cope with illness and ongoing medical treatment. Beaumont Hospital’s psychology department have developed an online resource: Mindfulness and Relaxation Centre at Beaumont Hospital
Coping with HD
Change can be unsettling but continuing to participate in activities that are meaningful to you can be of benefit. Focusing on your strengths and maintaining a positive attitude is important.
- Stress Management such as deep breathing exercises, progressive muscle relaxation, mindfulness, meditation
- Health Care Look after your general health – maintain a healthy body weight, monitor blood pressure and cholesterol, seek help to manage anxiety if necessary
- Dental Care Good oral hygiene today will prevent future problems. Keep your teeth and gums healthy by effective brushing and flossing, and regular visits to your dentist
- Get / Stay organized Keep things in their place. Use organisational and memory tools - calendars, phone reminders, appointment diary to-do lists,
- Depression is common in HD Know the signs and seek treatment when needed.
Dr. Niall Pender, Clinical Neuropsychologist discusses HD Coping Strategies, September 2018 HD Joint Conference, Newry.
Driving and HD
If you are experiencing symptoms of Huntington’s Disease or have had a diagnosis confirmed by a neurologist, it is necessary to take certain steps in relation to your driving. A diagnosis of HD may not mean you need to stop driving straight away. Speak to your GP if you want to keep driving but are worried about your ability to do so. Your GP can guide you on what you need to do.
An article on Driving And HD featured in HDAI's Hope Annual 2018 and is available to read here
Ask for Help
Remember that you are not alone. There may be times when it is helpful to talk to others and learn from their experience. This may include: family, friends, support groups, professionals (GP, Psychologists, Counsellor) and HD support organisations. Links and Resources
Huntington’s Disease Association of Ireland (HDAI) is a voluntary organisation which provides support, information and advocacy for individuals and families living with Huntington’s disease. HDAI also aims to raise awareness and understanding of HD with health and social care professionals.
- National Information & Support Service Helpline 1800 393939
- Family Support Officer
- Access to counselling
- Regional support groups, Carers workshops and Information seminars
- Annual respite weekend
- HD Publications, Newsletters and an Annual magazine
- Social Media sites: YouTube, Facebook, Twitter
Planning for the future
Advance planning is a proactive step that you can take towards helping yourself and your family cope with the diagnosis and prepare for the future. Planning for the future in relation to managing finances, legal matters (power of attorney, wills) and supports you may need in the future can help your peace of mind.
Think Ahead is an Irish Hospice Foundation programme. It provides a guide to members of the public to help you discuss and record your preferences in the event of an emergency or serious illness.
The Neurological Alliance of Ireland (NAI) and the Irish Hospice Foundation (IHF) have developed a booklet Planning for the Future: Information for People Who Have an Advancing Neurological Illness to help people with advancing neurological illnesses to plan for all aspects of their future.