Sexuality and Huntington's Disease

From the Fall 1999 issue of Hopes & Dreams, newsletter of the Illinois Chapter, Huntington's Disease Society of America.

Suggestions for Couples with one HD-Affected Person

  1. Develop a routine that includes time to "be together" with minimal tasks or distractions. Simplify. Turn off the television at times.
  2. As HD progresses, expect changes in who prepares for intimacy and who sets limits regarding time and activity together.
  3. The caregiving partner can expect ambivalent feelings and confusing thoughts. As the affected person's sense of "timing" and ability to "attend to all the subtleties of the relationship" changes, expect emotional changes for both partners.
  4. Think creatively about your shared experiences, and the value of "touching". Think SENSUAL, with a decrease in genital focus if possible.
  5. Don't forget to see the humor in a situation.
  6. Adequate rest is extremely important. Change in sleeping arrangements may be needed for adequate rest.
  7. The caregiving partner will need to be clear and consistent, and probably explicit, regarding expectations and limits for intimacy. Environmental cues or other subtleties may be misinterpreted by the affected person.
  8. Redirection and consistency of message are important if the affected person is preoccupied with sex in some way. Be very careful what is being "reinforced" by others.
  9. Reach out for help from appropriate people if needed.

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Created: Oct. 9, 1999
Last updated: Dec. 5, 2010