Top Ten Questions

Below is a list of ten of the most frequently asked questions that we receive from families affected by HD. Of course, we would like to talk with you about any problems that you may have; often a personal conversation is the best starting place when you have a complicated problem to solve so we welcome you to contact us by phone at (919) 803-8128.

Click on a question to learn more.

  1. How can I/my spouse get tested for HD?
  2. I just found out I have HD – what do I do now?
  3. How can I get some basic info about HD?
  4. Should I/my spouse still be driving?
  5. Who can help me to apply for disability income?
  6. How can I get help in a crisis?
  7. Should my spouse still be living at home?
  8. How should I be preparing for the future?
  9. How can I get advice about problems I am having on the job?
  10. I need to find someone to help me cope with HD/my family member’s HD; how can I find a therapist who can help me?


1. How can I/my spouse get tested for HD?
Deciding to get tested for the HD gene is one of the biggest decisions in the life of a person who is at-risk for HD. We strongly recommend that people seek out testing services at testing sites that follow the accepted national protocol for HD testing and consider several important issues before testing.

2. I just found out I have HD – what do I do now?
There are many ways you can connect with the HD community here in NC and nationally! Consider attending a local support group or upcoming event or conference. Are you wondering what resources are available to you here in NC, or nationally? Check out our resources page. Feel free to call us if you are in need of more information, or referrals for counseling, HD treatment centers, legal issues, assistance with SSDI applications, information on ongoing clinical trials, and help with locating other types of health care providers who are aware of HD.

3. How can I get some basic info about HD?
Check out our HD Info section for information and also check out our resources pages.

4. Should I/my spouse still be driving?
This is a very tough issue for most families to face; luckily, there are many good resources available to help you make this decision, including objective assessments, and other strategies. Check out our driving resources section.

5. Who can help me to apply for disability income?
Many wonderful, free resources exist to help with this often laborious process. Feel free to call us to get help with navigating these resources.

6. How can I get help in a crisis?
If you or a loved one is experiencing a life-threatening emergency, call 911 or to to your nearest emergency room. If you have an urgent mental health need, click here.

7. Should my spouse still be living at home?
Click on our link to long term care resources and info about the stages of HD to get started; feel free to call us to get some help in making these decisions.

8. How should I be preparing for the future?
Please see our information about legal and financial resources and long term care resources. We have noticed that for about a year or two after diagnosis, families experience a great deal of stress partially because they feel that they have to make all of their big decisions at once while they are still reeling from the news of this difficult diagnosis. This is not the case! However, after things settle down and the initial crisis has passed, one can start working on building a secure future for one’s family. Working with financial planners to create special needs funds may be such a way to prepare, as is working with an experienced attorney to create legal documents such as a will, a legal will, and powers of attorney (durable and medical). HD Reach has identified several of these professionals who are aware of the challenges faced by families affected by HD; please call for referrals.

9. How can I get advice about problems I am having on the job?
Check out our resources links page and disability information. Being terminated from one’s job can be a devastating situation since it often means total loss of badly-needed benefits. How can you prevent this from happening? What steps can you take if you are experiencing trouble on the job?

10. I need to find someone to help me cope with HD/my family member’s HD; how can I find a therapist who can help me?
We welcome you to call us for assistance with referrals for counseling ; we also frequently provide relevant information about HD to mental health clinicians so that they can be fully informed about HD while working with you. Often the problem is that a person with HD is reluctant to seek mental health counseling or flatly refuses; please call for counsel on these difficult issues.