Arches. Photo by Daniel Chia
Jun
26
2010

My Friend has Huntington’s Disease – How can I help?

Here at HOPES we get many e-mails asking “What can I do for my friend or loved one that has been diagnosed with HD?” The answer, of course, is not simple and will be unique for every situation. But here are some ways that you might start to help someone you care about.

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Things you can do to help someone with HD:

  1. Give them hope! – Let them know you want to be there for them.
    1. Help them relax and realize that HD doesn’t have to completely dominate their life.
    2. Help them maintain a sense of normalcy. This can be as easy as going for a walk or getting coffee with them regularly.
  2. Give them HOPES! – By helping them learn about what they are up against, you can help turn a scary, unknown enemy into a target that they can pin down.
    1. Help them figure out what kinds of questions they have, and help them find the answers on the HOPES website.
    2. Educate yourself, so that you can support them in an informed way, with a better understanding of the battles they are fighting.
    3. Contact us here at HOPES via e-mail – we’re glad to help in anyway we can.
  3. Refer them to organizations that can help them connect to the HD community and keep up to date on the latest developments in HD research.
    1. Find the Huntington’s Disease Advocacy Center (HDAC), a site by HD families for HD families, here: http://www.hdac.org
    2. Find the HD Lighthouse, a site dedicated to providing information on the latest information scientific trials about HD, here: http://www.hdlighthouse.org
  4. Get them in contact with a support group in their area through the Huntington’s Disease Society of America (HDSA).
    1. To find a support group in your area, look here.
  5. Help them get in contact or maintain contact with a physician that understands Huntington’s Disease.
    1. There are Centers of Excellence that specialize in managing HD all around the country. For more information about Centers of Excellence, click here.
    2. To find a Center of Excellence in your area, click here.
  6. Find out what they need to help combat the disease:
    1. People in the beginning stages may not have any physical difficulties, but may need emotional support and someone to help them make sense of their mood swings or other emotional difficulties.
    2. In later stages of the disease, people with HD may need more help getting places due to the muscle spasms that the disease can cause. A trip to the grocery store or the dry cleaners on their behalf could be a great help.
    3. People that have had the disease for quite a while may need help with more basic tasks, like maintaining their personal hygiene, cooking, or keeping their house in order.
  7. Help them plan for the future:
    1. It may be important to have someone ready to make health care decisions should someone with HD be unable to make those decisions themselves – Learn more about becoming a Health Care Surrogate on the Florida Suncoast Hospice site here.
    2. Completing a living will is an important step in confronting the challenges that HD presents: Learn more about living wills from the Florida Suncoast Hospice site here.

We understand that the challenge may seem daunting when you’re trying to help someone with Huntington’s Disease, but even a little gesture can mean a lot. It is so important that people with HD have friends and family that care about them, and just being there to help them forget about their HD for a while. At the same time, it’s important not to overwhelm yourself as a caregiver, so make sure to take care of yourself as well. Together, people with HD and their caregivers are a powerful team against HD!