Patients/Families Coping

Asking the Difficult Question
"How do Patients and Families Cope with Huntington's?"

When patients are first diagnosed with Huntington's, asking questions can be extremely difficult. Under most circumstances, we can readily identify gaps in our knowledge and have learned where to find the information which satisfies our curiosity. That may also be true of many questions about Huntington's. Physicians, textbooks, the internet, and other sources usually can answer many probing factual questions about Huntington's.

However, there is an emotional burden to learning you have Huntington's, and it takes courage to ask the questions. It also takes time to understand and accept the answers. Yet it is still extremely important for both patient and family members to ask "How do we cope with Huntington's?".

It is not an easy task to live with Huntington's, but patients and families are very resilient and resourceful and almost all seem to successfully handle the emotional impact of this illness without breaking their spirit or will. Discussed below are several approaches which seem to contribute to the courageous attitudes observed in those living with Huntington's.

Acknowledging that the intense emotional reaction following the disclosure of the diagnosis is usually temporary. When patients and families are first informed about Huntington's, their reactions can vary from disbelief to shock, anger, or denial. Patients doubt their emotional strength to return home and continue life as before. Everything has changed and they are devastated. Although such reactions are very painful and are reminders of human vulnerability, it may be comforting to know that over time these confusing feelings usually lessen in intensity and duration.

Living with the certainty of the present helps in facing the uncertainty of the future. Looking to the future with Huntington's is overwhelming for most. It's difficult to assimilate hope and optimism when physical changes continue. Those who live for present joys and opportunities seem to be less inclined to worry about the future they cannot control. They learn to take one day at a time. This "present living" may be expressed by initiating projects or skills previously only imagined, experiencing unfamiliar or favorite places through reading or travel, appreciating family and friend relationships in familiar and new ways, and learning more about oneself and one's purpose in life.

Trusting that previous ways of handling life's difficulties may help in
meeting this present challenge. When faced with Huntington's , we become anxious, fearful, and sad about our inability to predict or control future events.

We are far less confident that previously acquired ways of dealing with life's difficulties may help us now. Those who earlier turned to religious or spiritual beliefs during times of happiness and sorrow may find those
beliefs reassuring now, those who were usually optimistic and positive when life was hard may find those attitudes helpful now, and those who were learning new ways of handling grief and distress may find that openness and improved communication work better for them now.

In most instances, patients and families do learn to trust that they are emotionally stronger than they thought, and they learn to rely on many inner strengths and beliefs which are already in place.

Allowing the support from family members, friends, and the medical team may be one of the most effective ways of dealing with Huntington's. Few people anticipate that sometime in life physical and emotional dependency on others may be necessary. Our culture encourages independence throughout life and great effort is expended to maintain that self-sufficiency.

When a serious illness occurs, we are confronted with the need to depend on others in new ways and to courageously "ask for help". This is difficult for almost all, but especially a challenge for those who have rarely needed to depend on others. The challenges faced in Huntington's may increase the need to depend on others for physical care and emotional support and this emotional support may also need to be reciprocated with other family members and friends. The reliance on others seems easier if accepted and shared as opposed to being rejected and fought.

"How do patients and families cope with Huntington's?" is a thoughtful and challenging question. Even though the answers may be unclear and imprecise, it is a question that is important to ask and courageous to individually answer. Each situation is unique; hopefully, several of these possible answers may be considered for further reflection by the reader.

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Taken from: "How do Patients and Families Cope with ALS's?"
Written by: Naomi Nelson, R.N., Ph.D. Neuropsychologist,

MDA/ALS Clinic

Article was written for ALS. I took the liberty of changing it to HD since it seemed to fit so well in what HD families go through especially the comment "living with the certainty of the present helps in facing the uncertainty of the future." Jean Miller