Tips for the Gene-Positive

This information is intended for people who have had predictive testing and found that they have inherited the genetic changes associated with HD. It should be used in conjunction with a discussion with your genetic counsellor.

Susan Tolley, the Director of the British Columbia HD Resource Centre discusses how to cope with HD predictive testing results.

Huntington disease (HD) is typically a slow progressing disease. As a result, individuals have considerable time to carry on normally after a diagnosis of HD. As yet, there is no effective treatment to delay or slow down HD, but there are ways you can help yourself and learn to manage your disease. There is HOPE!

Emotional turmoil

It is often very difficult to recall much of what was said or discussed after hearing of your test result, or sometimes in the days that follow. Many people describe feeling emotionally drained, but there are many other feelings that are common as well. Many people say that the information “really hits home” about three or four days after the test results. You may find that you and those close to you have emotional ups and downs. Other family members’ reactions to your test results may or may not surprise you and may cause you some stress (this may have been discussed with your genetic counsellor). It is important to realize that some emotional turmoil is quite normal and will usually settle down. However, it is also important to seek prompt support and/or medical attention (your genetic counsellor or family doctor) if you are feeling continually sad or if you are unable to sleep. If there may be potential harm to you or those around you, seek immediate medical attention.

Understanding the disease
Learning more about Huntington disease is important. The more informed you are, the better you will be able to understand what the disease is all about. Learning and understanding how the disease progresses will help you adjust to any changes you may experience.

Lifestyle
Recent studies suggest that a healthy balanced lifestyle may delay onset of symptoms and slow progression of HD. Participate in activities that have physical and intellectual elements. Ensure your lifestyle includes:

  • Healthy diet
  • Regular exercise – 30 minutes at least 3 times per week
  • Mental stimulation – including new learning
  • Adequate sleep
  • Avoidance of brain toxins….alcohol, smoking

Coping
One way to cope with change is to focus on your strengths and to continue to participate in activities that are meaningful to you. Keeping a positive attitude is important. Developing good practises or habits now will make things easier in the years to come. Consider the following:

  • Stress Management – such as deep breathing exercises, progressive muscle relaxation, visualization, meditation, yoga.
  • 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.
  • Organizational Strategies – Get organized. It’s never too early to start using organizational and memory strategies such as calendar/day book, to-do lists, everything in it’s place.
  • Depression is common in HD – Know the signs and seek treatment when needed.

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 will give you piece of mind. It will minimize the financial and emotional hardship that can result from HD if you are not adequately prepared.

Support
Remember that you are not alone. There may be times when it is helpful to talk to others about what you are feeling or experiencing. Learning from the experience of others can be helpful.

  • Family/friends
  • Support Groups
  • Professionals – GP, psychologists, social workers, genetic counsellors
  • HD organizations in your area
  • Church

Ask for Help

  • Know that it is okay to ask for help
  • Seek information that you don’t have but want to know
  • Ask questions until you are satisfied

Additional Resources and Support
It is important to keep up to date on resources, information, research and what has been helpful to others. Please see additional resources and HD organisations in your area under the further information section.

This section was developed with the assistance of Susan Tolley and Susan Creighton.

Research Discoveries

Dr. Michael Hayden, a Professor at the University of British Columbia, has dedicated his career to understanding the development of HD and finding a way to cure it.

Testing for HD

The decision about whether or not to have testing for HD is a very complex and personal one. For some, the test provides information about their future. Others choose not to undergo testing. There are no right or wrong choices. We will help you to make an informed choice regarding testing, and support you through the whole process.

HD Resources

There are many other online websites and resources which provide information regarding HD in general, support groups in your area, research updates and opportunities to be involved in clinical trials.