Greater Los Angeles Chapter

Support group meetings are for people with Huntington's Disease and their friends and family. This is a great opportunity to meet others who understand your problems, learn new coping skills and explore different HD resources. Most meetings are conducted monthly but make sure to call and confirm times and locations. Thank you to Caregiver Resource Centers and the many volunteers who make the support group meetings possible.

For information about the locations and directions to the meeting sites, please call HDSA/LA Chapter Helpline:(888) 4-HDSA-LA or (888) 443-7252, and ask to speak with Chapter Social Worker, Joyce Bryan, or Support Group facilitator, Judith Margheim Bohlin, or Ed Garza.

People with HD need care, but, what is often not recognized, is the kind of care needed by those who do not have HD but are living at risk of it in their future. Family and friends with the best of intentions may look for ways to soften the blow and minimize worry. Comments are made that may not be helpful, but serve only to deepen the anxiety.

The following comments are paraphrased from an article in HDSA The Marker in 1989. They were taken from real situations described by people at risk when family or friends spoke about their at risk status. Following each comment is the spoken or unspoken response by the person at risk.

COMMENT: Don't think about that, dear. We'll cross that bridge when we come to it.

POSSIBLE RESPONSE: I think about it every day. “When will I get it?” “Will my symptoms be like mom's?” “Will you stick by me if I get it?” “How can I prepare my children for it if I become ill?” “How long will my life span be?” “Will my loved ones avoid me?”

COMMENT: I'm sure you won't get it. You always have control over everything, and besides, you take after your dad, not your mom.

POSSIBLE RESPONSE: You may be right, but what if you're not? “Please don't dismiss my fears. You make it more difficult than ever to talk about it.” “Without your involvement, it will be harder to plan for possible HD in my future.”

COMMENT: Poor dear, you must be frightened!

POSSIBLE RESPONSE: Please don't smother me with pity. “My coping skills will be useless if I'm overcome with fear.”

COMMENT: Don't be silly. How can you be so worried over dropping your bottle of water?

POSSIBLE RESPONSE: My worry over dropping things may seem insignificant, but it is a legitimate response to living at risk. “Can't you see how this worry interferes with my life?”

COMMENT: Don't think about it. If it happens, I'll take care of you. We need to talk about something pleasant.

POSSIBLE RESPONSE: I feel totally discounted and scared. “If you don't recognize the care I need right now, how can I trust that you'll care for me in the future if I need you?”

The above are examples of how not to address the issue for those living at risk. The following are suggestions that may be more helpful.

EDUCATE YOURSELF: To learn about HD and living at risk, the HDSA-LA Helpline staff can send educational material and can answer many of your questions.

TALK ABOUT IT: Leave yourself open to discussion even if it makes you uncomfortable. You cannot be faulted for admitting openly that it makes you uncomfortable. We are all uncomfortable with HD. If the person at risk doesn't talk about it, ask about it occasionally. e.g., "Are you concerned that you may get HD?" If you get a strong negative response, you can leave it alone for a while.

BE SENSITIVE TO FEELINGS: There is a great difference between sympathy and empathy. Empathy shows understanding and avoids discounting legitimate feelings whether or not they are realistic. Feelings are always legitimate even when they make no sense to you. Sympathy buries the feelings and diminishes the person's ability to cope with difficulty.

USE HUMOR IF APPROPRIATE: With great sensitivity, it always helps to use humor to deal with problems. There are many ironies in life. One example is that the person in the family who is not at risk can become ill soon, while the person at risk may live a long and fruitful life. Turning the tables on a possibility can always lighten the problem.

GET OUTSIDE SUPPORT WHENEVER POSSIBLE: The person at risk as well as friends and family members can benefit from discussions with others who are dealing with similar problems. HDSA conducts support groups with open doors all over the country, and there may be one in your area. In addition, the Helpline staff may know of HD psychological counseling services or family therapy services that are helpful. Call the Helpline for more information.

LEARN TO DEAL WITH CHANGES IN COPING: Learning to cope with all the challenges of Huntington's disease in the family can feel like a rollercoaster ride. Sometimes there's fear and helplessness, while at other times there's hope, acceptance and close family bonding. Learning to have patience with any current situation can be a huge advantage.

MAKE A PERSONAL COMMITMENT TO THE HD COMMUNITY. There are myriad ways to become involved in your community. Local chapters often recruit board members or other volunteers. Donating your dollars to the Huntington's Disease Society of America can help researchers discover a cure to Huntington's disease – and that is, after all, the goal of all of us.

SUGGESTIONS SUBMITTED BY JOYCE BRYAN, HELPLINE SOCIAL WORKER. INFORMATION AND SUPPORT ARE AVAILABLE ON THE HDSA-LA HELPLINE, INCLUDING RESOURCES, REFERRALS AND INFORMATION ABOUT HD TESTING.

CALL (888) HDSA-LA, OR (888) 443-7252
CALLS ARE RETURNED DURING THE WEEK
WITHIN ONE BUSINESS DAY.

People with difficult symptoms of Huntington's disease do not always need nursing home care. So often during the course of the illness, an assisted living facility is more appropriate. Assisted living is a combination of housing, personalized supportive services and medication management designed to help with the activities of daily living. The following is a website that can help identify those in your area: Local Assisted living facilities

Services for Families Who Need Help

Coping with Huntington's disease need not be done in isolation. Although the service system is not perfect, there are agencies, professionals and independent providers that may be available to help. Some services are free and some are low cost.

The Caregiver Resource Center System in California specializes in brain impairments and is mandated by law to have listings of such agencies for family caregivers. There are 11 of them throughout California. Each of these organizations has over a thousand different agencies on their computerized data base. The following is a sample of the types of agencies on their list:

Adult day care and activity programs
Legal services
Rehabilitation Centers
Crisis lines
Support groups
Transportation for the disabled and elderly
Home health care
Respite care services
Mental health agencies and providers

If you live in Los Angeles County, you can call the Los Angeles Caregiver Resource Center for more information at (800) 540-4442 or (213) 821-7777. If you live in other regions in California, call the Huntington's Disease Helpline at (888) 4HDSA-LA or (888) 443-7242 and simply ask which Caregiver Resource Center serves your community.

Dealing with Impulsive Behavior

The human brain is highly complex, and in addition to generating behavior, much of its function is involved in stopping behavior that is undesirable. When there is an impairment in the brain such as Huntington's disease, the “stoppers” are often broken. When this happens, emotions which had been held in check in healthier times can escape and be acted out. Although not everyone with HD has these problems, when the stoppers are broken, the unchecked emotions can be anger, anxiety, compulsivity, rigidity, depression, negativity, and even excessive sexuality.

It's important to remember that this is not a bad person. It is a bad disease and may require some changes in the behavior of the caregiver. The following tips may be helpful when responding to some of these problems:

Avoid badgering the person. It won't help. Remember that the behavior is not a choice but is out of the person's control.
Stay calm yourself. An emotional response in the caregiver can escalate the behavior and make things worse. The person's sense of order may return if the caregiver is in control.
Some people with HD crave a firm, unwavering schedule, and may even be upset by things that seem as simple as changing the color of the dinnerware. If this is a problem, try to keep the environment and the daily schedule as predictable as possible.
Try to offer alternatives that are positive rather than responding with refusals or with negatives. For example, if he or she wants something immediately, and the caregiver is busy at the moment, a good response might be: “OK, I'll get that for you in 15 minutes as soon as I'm through with this.” Then keep your word.
The person with HD may be remorseful after an outburst. Be sensitive to this and be prompt with forgiveness.

If the behavior is still a problem, it is important to discuss possible medical interventions with the physician. There are medications that are psychoactive and can go a long way in alleviating some of these behaviors.