By Corey Janke
One of the things I try to do as a Huntington Society of Canada (HSC) Resource Centre Director is empower my clients. Facing Huntington disease (HD) is a scary thing, but the more you control the things you can control, the more empowered you feel. That’s why I think planning is so important.
When I’m talking with someone who is considering genetic testing, for example, I advise them to get their ducks in a row first. Get life insurance. Think about how the results may change your life, whether your test positive or negative. Decide how you’re going to share those results with your family.
Planning for the future is just as important if you have HD. For example, I’ve been working with one client for a very long time. When she was living in her own home, we started talking about alternative living arrangements about four years before she actually made the move to a retirement home.
Now she is getting to the point where she needs more care, so we’ve started talking about long-term care facilities. Thinking ahead means she has more control over where she lives — she can make an informed decision rather than a decision in a crisis.
For people in earlier stages of HD, I suggest building networks of family, friends and professionals who can serve as your support team on your journey with Huntington disease. This group would also include your local HD Resource Centre Director or Family Services Worker. I like to say, “You don’t have a choice about getting Huntington disease, but you do have a choice about accessing HSC’s Family Services team and people like me.”
Finally, talk to your family and significant others about what’s important to you and what kind of choices you want to make. Rome doesn’t have to be built in a day, but by starting that dialogue, you’re letting your loved ones know it isn’t a taboo topic.
For helpful resources, check our future planning fact sheet and Dr. Ed Wild’s advice on optimizing life on page 5 of Horizon issue 133.