Since 2011, many conversations have transpired within the privacy of online Facebook groups. What was once a topic completely ravaged by stigmas, now hundreds have opened up to discuss the challenges they face with a loved one who has Huntington's disease.
Although I have scoured the Internet for as many medical publications/articles regarding sexuality with Huntington's disease, they seem to be rare to say the least. Please feel free to point me in the right direction if other publications exist.
Sexuality in Huntington's disease.
Wien Med Wochenschr. 2008;158(3-4):78-83. doi: 10.1007/s10354-007-0477-8.
Schmidt EZ1, Bonelli RM.
Department of Psychiatry, Medical University of Graz, Graz, Austria.
"Sexuality and partnership have an important influence on the quality of life of patients with chronic disorders. There are just a few studies in literature about sexuality in Huntington's disease which conclude that up to 85% men and up to 75% of women experience high levels of sexual problems, most of them having prevalent symptoms of a hypoactive sexual disorder but also increased sexual interest and paraphilia were found. There is no evidence that sexual dysfunction is mainly a specific symptom of HD and may be associated with the specific brain lesion itself or if it is chiefly related to the psychosocial factors caused by the steadily worsening of the disease. Further studies should focus on asymptomatic patients to explore sexual changes preceding neurological and motor symptoms and should incorporate partners to objectify sexual distinctive features. Investigations on the context of sexual dysfunction with depression, irritability and dementia symptoms are needed to better understand reasons for sexual changes in HD. Treatment options for HD patients with sexual disorder are only reported sporadically, guidelines can only be obtained from non-HD patients and further research is needed."
PMID:18330523 [PubMed - indexed for MEDLINE]
This was written in 2008, yet not one follow up publication has assessed sexuality with Huntington's disease. Again, if there are other publications that share a less vague and a more comprehensive examination of sexuality and Huntington's disease, please feel free to contact me. Many within these private online Facebook Groups no longer believe that topics such as sexuality are "softer" symptoms with Huntington's disease. To the contrary, many have stated that they would accept Chorea as the only effect of the disease over the many other aspects that are inclusive to this horrific degenerative brain disease.
While getting ready to produce the documentary: "The Huntington's Disease Project: Removing the Mask," I had many within the international community write me with regards to their sexual issues and challenges. I must admit that I was so overcome with a level of intrigue, and my own personal desire to understand what I am going through. A majority of those who were willing to discuss "sex" with me openly stated that they experienced a stronger sex drive.
For transparency, these individuals were either in the earlier-to-middle stages of the progression of Huntington's. I even went further in my conversations with these individuals. I didn't consider my inquires to be intrusive, however the need to completely understand them, and myself, was paramount. Many were overly sexually active and their partners only became concerned as the disease progressed. Many caregivers claimed (as the disease progressed) that they didn't feel comfortable having sexual relations with their HD loved one because they feared that they were taking advantage of their partner. In high numbers of responses, the individual(s) with progressed symptoms responded to the contrary - they wanted, and needed to feel love and be sexually fulfilled by their partner. Is there more to this picture than a clinical description: "...the specific brain lesion itself or if it is chiefly related to the psychosocial factors caused by the steadily worsening of the disease."
Additional conversations must take place to understand sexuality and Huntington's disease. Why do individuals with HD/JHD express sexual promiscuity? Could it be that something is lacking within their lives? Or, is it just the fault of the disease?
By ANNA MAGEE FOR THE MAIL ON SUNDAY
PUBLISHED: 18:45 EST, 3 February 2014
"Increasingly doctors view sex as an under-used resource in terms of physical and emotional well-being", says Dry Arun Ghosh, a private GP with a special interest in the health benefits of sex. The Canadian research suggests it can be classed as a moderate intensity exercise...And it's not just the heart and lungs that get a workout. Scientists at the University of Maryland in the U.S. discovered that middle-aged rats made more brain cells after mating. The process, called neurogenesis is thought to restore brain function lost through ageing. In particular, the benefits were seen in the hippocampus, the region of the brain where new memories are formed. The rats' brain function improved after long periods of sexual activity, specifically in this hippocampus area. A huge amount of brain stimulus occurs during intercourse. It's why we feel so overtaken when we orgasm. When researchers do MRI scans on people in orgasm, they observe both sides of the brain being stimulated, including parts of the brain we wouldn't normally use."
In continued conversations with my peers (in the early-to-mid stages) in the Huntington's community, depression plays a major role in the lack of desire. As we all know, depression is a major player when having Huntington's disease. However, many have stated that they need extra affection and attention to bring them to the point where having sex is concerned. Inasmuch, taking antidepressants can also help with individuals who suffer from low sex drive. In tandem, medical treatments coupled with the openness of the caregiver may indeed be an answer for many. Seek advice from your doctor...open up and discuss your sexual needs/problems. They might be doctors, but they are human too.
WeHaveAFace.org will continue to facilitate conversations including sexuality with Huntington's disease via our WeHaveAVoice radio show. It is time to open up the conversation to many topics many have feared discussing. Stay tuned!
"'Sex is as important as eating or drinking and we ought to allow the one appetite to be satisfied with as little restraint or false modesty as the other." Marquis de Sade