AMYOTROPHIC LATERAL SCLEROSIS SOCIETY OF CANADA SOCIÉTÉ CANADIENNE DE LA SCLÉROSE LATÉRALE AMYOTROPHIQUE

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Relationships and sexual satisfaction and love." World Health Organization • Increased relationship satisfaction and are important to quality of life. This is Report Series 572; Geneva, 1975 stability especially true for people coping with chronic illness. BENEFITS OF SEX SEXUAL RESPONSE CYCLE Chronic illness can restrict the activities AND CHRONIC ILLNESS Sex is an act that can bring satisfaction of daily living. Maintaining a sexual Understanding the sexual response and release. Even though ALS does not relationship can be a source of com- cycle is important to understanding the directly affect sexual function, for a fort, pleasure and intimacy and an affir- impact that chronic illness can have on person with ALS, sex may also bring mation of one's true self when other sexual functioning. pain, frustration and embarrassment. roles have been stripped away. A satis- There are methods and techniques fying , for the person with ALS Sexual function, or dysfunction, is a available to help people with ALS and and their partner, is one way to feel combination of physical (due to dis- their partners cope with their changing "normal" when so many other areas in ease-specific changes or medication, or sex life and maintain intimacy. their lives have changed. Documented both) and psychosocial factors. Any ill- "Sexual health is the integration of the benefits of sex include the following: ness or treatment that affects these fac- somatic, emotional, intellectual, and • frequency is inversely related tors can have a negative impact on a social aspects of sexual being, in ways to risk of death person's ability or desire to engage in that are positively enriching and that • Reduction of sexual activity. enhance personality, communication • Improved sleep post-orgasm CYCLE FEATURES GENDER DIFFERENCES PHASE Physiologic factors (neurotransmitters, androgens and sen- Women: touch, verbal stimuli and relation- Desire sory system) and a variety of environmental stimuli (psy- ship more important than climaxing chosocial and cultural factors) cause a person to initiate or be receptive to sexual activity. Men: visual stimuli more important Parasympathetic and vascular system Women: and enlargement Arousal involved. Breathing becomes heavier, heart rate and of pressure increase and an accumulation of blood in the geni- tal region occurs. Men: penile Involves the parasympathetic nervous system and the vas- Women: maximal vaginal lubrication and Plateau cular system. Blood accumulation in the genitals is at its genital blood flow peak and then levels off before orgasm. Generalized skele- tal muscular tension and hyperventilation occur. Men: distension of is at capacity

Sympathetic nervous system and muscle tone are affected. Women: contraction of uterus and orgasmic Orgasm For both sexes, there is heightened excitement to a peak of platform subjective pleasure. A release of sexual tension ensues. Men:

Women: ready to return to orgasm with slow Resolution The body returns to pre-excitement phase. loss of genital blood accumulation Men: penis returns to flaccid state

ALS. Three letters that change people’s lives. FOREVER. | Sexuality, Intimacy And Chronic Illness - Page 2/6

EFFECTS OF ALS ON SEXUALITY COMMONLY USED MEDICATIONS THAT MAY IMPAIR Chronic illness can affect sexual satis- SEXUAL FUNCTION faction and the sexual relationship for Benzodiazepines Opiates both partners. ALS does not impair diuretics sexual function but medications, Lipid-lowering agents Tricyclic immobility, respiratory problems, Selective serotonin reuptake inhibitors fatigue, and body image factors may Monoamine oxidase inhibitors negatively affect sexuality. and your health problems are least • Medical treatments may alter the intrusive. BIOLOGICAL EFFECTS person's appearance and bodily • Be sure you are rested and relaxed. • The effects and side effects of function. Psychological distress • Wait at least two hours after eating some medications can reduce sexual caused by these changes can limit to have sex. desire and/or the ability to have sexual satisfaction. For instance, • Take any required pain medication intercourse or orgasm. people with ALS may feel less desir- 30 minutes before sexual activity. • Reduced cardiovascular and pul- able if they are using a ventilator or • Alcohol and tobacco can affect monary function, fatigue or pain have a feeding tube. sexual function. can limit sexual activity. • Reduce or stop taking medications PSYCHOLOGICAL EFFECTS that have a negative impact on ASSOCIATED WITH • , loss of self-esteem, sexual functions before sexual CHRONIC ILLNESS and associated with activity (on the advice of a physi- chronic illness may impair sexual cian). Reduced fulfillment. • Chronic illness alters relationship "Sex is more than an act of pleasure, Impaired dynamics. Partners become care- sex is the ability to be able to feel so • in men givers as well as lovers. Role close to a person, so connected, so • Lack of lubrication or dryness changes may cause sexual activity to comfortable that it's almost breath- and coital discomfort in women decrease. taking to the point you feel you can't • Lack of subjective pleasure take it. And at this moment you're a SOCIAL EFFECTS part of them." - Sophia Loren Orgasmic dysfunction • Society is uncomfortable with the • or an inability to reach orgasm in men idea of ill people wanting to have or SUGGESTIONS TO HELP YOU • Difficulty reaching orgasm or having sex. MAINTAIN A HEALTHY SEX inability to reach orgasm in • Although sexual activity may be LIFE women placed on hold intermittently during • Try alternative ways to experience • Change in orgasmic intensity the illness, sex remains a vital part sex and sensuality. Hold hands, hug, of day-to-day living for some peo- touch your partner and initiate phys- Painful intercourse, including ple with chronic illness. ical contact, even when you do not plan to have sex. ALS does not • Conditioned reflex of the muscles How can you keep your sex life affect your sensory nerves. in which they clamp shut healthy? Read about your illness. Be • Use your senses to make sexual • Penetration is extremely painful or impossible informed. Know your body and what activity more enjoyable. feels right in your current state. • Communicate with your partner. Sexual aversion Be honest and open. Tell your part- SUGGESTIONS TO HELP ner what you like and do not like. YOU PREPARE FOR SEXUAL Listen to your partner's likes and ACTIVITY dislikes. • Plan sexual activity for the time of day when you have the most energy | Sexuality, Intimacy And Chronic Illness - Page 3/6

• Try different sexual positions to unsatisfied, sex can become one ful when there are knee or hip con- accommodate your body's changing more adverse and painful agony to tractures. Spoon entry from behind abilities. Experiment with positions deal with. It shouldn't be that way." works well with this arrangement. that minimize weight bearing or tir- - person living with ALS ing movements. MOBILITY • If you are in a wheelchair, consider People with ALS may feel depressed • Use adapted orthoses, lifts and posi- a with removable arms. or tired a lot of the time. They may tioning devices • Use a waterbed to relieve pressure experience pain, weakness, difficulty • Employ sexual aids and toys; vibra- on joints and to minimize weight- breathing, problems with co-ordina- tors with hand straps bearing positions. tion and trouble sleeping. However, • A third party intervention can be • Try personal lubricants to reduce there are ways to combat these issues called upon to help position both discomfort during sexual inter- so that both the person with ALS and partners course. their partner can engage in sexual • Book appointments for sex with activity. The individual with ALS often experi- your partner. Conserve your energy ences compromised mobility. and save it for some intimate time SPASTICITY Adaptations to sexual positions and with your partner. (a disorder in which certain muscles techniques may be required. Yet, sex- • Consider either self-stimulation or are continuously contracted) ual activity can continue to occur and mutual stimulation. Although not • Experiment with sexual positioning to be satisfying. Sex does not need to acceptable to all people, this pro- • Take a warm bath prior to having involve penis-in- penetration. vides another method for you and sex Penetration does not have to involve your partner to pleasure one anoth- • Consistently ice sore areas the penis. Individuals who are unable er. • Use antispasticity medicines (talk to to penetrate their partners can a doctor about this) employ fingers, hands and sex toys Orgasm produces a natural high. It • Massage/stretching instead. The intimacy and body-to- helps with pain control and stimulates • Support of joints body contact that comes with pene- pleasure producing chemicals in the tration can still be reached through brain. Spasticity during sex can be embar- other methods: rassing, frustrating and challenging, "The intimacy in sex is never only especially since sexual arousal itself • (using the fingers to physical. In a sexual relationship we may cause spasms. Bathing in warm penetrate your partner) may discover who we are in ways oth- water prior to sexual activity may • Vaginal (insertion of the erwise unavailable to us, and at the reduce spasticity and relax muscles entire hand into your partner's vagi- same time we allow our partner to see and joints. The relaxing effects of sex na) and know that individual. As we can help to reduce spasticity and • Harnesses and can be used unveil our bodies, we also disclose allow for penetration, if desired, once to explore vaginal penetration. Men our persons." Dr. Thomas Moore, joints and muscles are calmed. can choose from two kinds of "Soul Mates," Today, strap-on toys. The first fits over (Mar/Apr 1994), pp. 28, 29. POSITIONING FOR THE your penis and straps around your INDIVIDUAL WITH SPASMS waist. The second is a harness that AND • For men who are unable to straight- leaves the penis exposed and places SUGGESTIONS TO HELP THE en their legs, an effective position is the above your penis. PERSON WITH ALS DURING with the man on his back, partner SEXUAL INTIMACY on top. The partner can lean back • Trapped in a body that ceases to against his bent legs. respond, too much time to think, • The individual can lay on their side sex can be very enjoyable, as every- with a pillow or towel between the thing works fine. If desires are left legs. This position is especially use- | Sexuality, Intimacy And Chronic Illness - Page 4/6

TO COUNTERACT MOTOR AND Another position is for one person to lay The mind is the biggest sexual organ. SENSORY DEFICITS on their front with a pillow under the Attitude is everything when dealing with • Increase mental arousal (play music, hips or belly. chronic illness and sexuality. Yet, it must meditate, practice visualization before be nurtured so that a sexual relationship sex) The partner who has more strength and may occur. The following three sexual • Increase genital stimulation (practice on control may take the position on top rehabilitation principles may help main- self and then transfer to a partner situ- with their partner on their back or side. tain a sexual and : ation) • Maximize the physiology (i.e., reduce • Use a ACCOMMODATIONS FOR A fatigue, pain) to achieve optimal sexual • Practise positioning prior to sexual WHEELCHAIR OR COMMODE benefits activity CHAIR • Adapt to limitations and make adjust- • Explore new ways to pleasure one A wheelchair with removable armrests ments where necessary another without being orgasm-oriented offers numerous possibilities: • Stay positive and open to experiences • Use sight, sounds and smells. Expand • Partner on lap facing you with their your sexual repertoire to include oral- legs on either side genital sex, fantasy and sensory experi- • For penetration, the partner can sit on ence. the lap of the person in the wheelchair, facing away for a rear-entry position. COMMUNICATION They can use their arms to support • Develop a system for signaling desire themselves, leaning on your knees. and feedback during activity and direc- tion Wheelchairs without removable arms • Prepare advance voice recordings for require different positioning for the part- communication aids ner: • Teach your partner how to use these • Partner sits on your lap facing away aids while engaged in sexual activity from you. The armrests can be used for support. BLADDER AND BOWEL ISSUES • Maintain good hygiene ONE PARTNER LYING ON • Empty the bladder before sex THEIR SIDE • Employ sexual positions that remove Lying side-to-side is especially effective bladder pressure for an individual wearing a catheter. Both • Decrease fluid intake two to three partners can move around without feel- hours before sex ing encumbered. • Reposition the catheter to ensure prop- er function Side positions can be used with partners • Use bladder medication 30 minutes facing one another. This allows both prior to partners to engage in the thrusting move- ment. POSITIONING FOR THE INDIVIDUAL WITH ALS AND When leg or hip tendons or muscles are THEIR PARTNER tight, one partner lies on their side. The One partner on top other lies perpendicular to their partner One partner lays on their back with pil- with their knees bent over their partner's lows under the knees to keep the legs waist. This is a comfortable position that slightly bent. A rolled-up towel under allows for long and slow penetration ses- the back will also work. This position sions. works for almost all sexual activity. | Sexuality, Intimacy And Chronic Illness - Page 5/6

RESOURCES BOOKS ON SEXUALITY For the individual diagnosed with ALS • Reclaiming Intimacy in Your WITH SOURCES FROM and their partner : A Plan for Facing Life's • ALS Society of Canada web site There are many resources available to Ebb and Flow... Together. Bruce, http://www.als.ca.resources.aspx help you maintain sexuality and intimacy Debra and Robert. Bethany House, in your relationship: c1996. • American Family Physician: • Your local ALS SOCIETY has infor- Chronic Illness and Sexual mation, books and support programs. • Sex, Love and Chronic Illness. Functioning They can refer you to counselors and Carlton, Lucille, National Parkinson http://www.aafp.org/afp/20030115/347. in-depth material on the subject. One Foundation, c1994. html click (www.als.ca) or call (1-800-267- 4257) connects you to the ALS society • Love and Survival: 8 Pathways to • Chronic Illness and Sexuality in your area. Intimacy and Health. Ornish, Dean. http://www.mja.com.au/public/issues/1 Perennial a division of HarperCollins, 79_05_010903/mci10673_fm.html WEB RESOURCES c1999. • Discussing Sexuality in ALS: Staff • Rediscovering Sex after Illness or • Shadows of Pain: Intimacy and and Patient Issues Trauma Sexual Problems in Family Life. www.alsmndalliance.org/pdfs/presenta- http://www.sexualhealth.com/article.php Pillari, Vimala. Jason Aronson tions/3%/20%/-20tider.pdf ?Action=read&article_id=295 Publishers, c1996. • Ducharme, S. H., & Gill, K.M. • Sexuality and Chronic Pain • The Illustrated Guide to Better Sex Sexuality after Injury: http://www.mayoclinic.com/health/chro for People with Chronic Pain. Answers to your questions. Paul H nic-pain/PN00009 Rothrock, Robert W. et al. R. Rothrock Brookes Publishing Co. Inc. 1997. & G. D'Amore Publishers, c1992. Baltimore: Maryland. • The American Association of Family Physicians provides a helpful • Sexuality and Chronic Illness: A • Kaufman, M. M.D., Silverberg, C., & patient handout titled Comprehensive Approach. Schover, Odetle, F. The Ultimate Guide to Sex Sexuality: Chronic Illness and Your Leslie R. and Jensen, Soren B. Guilford and Disability. Cleis Press Inc. 2003. Sex Life Publications, c1988. San Francisco: California. http://familydoctor.org/768.xml • Lupus Foundation of Minnesota • The American Association of Sex http://www.lupusmn.org/Education/Art Educators, Counselors and icles/SexandSexualityWithOngoingIllness Therapists .htm www.aasect.org sources and links to other helpful sites. • O'Connell, C. Sexuality and Disability. Stan Cassidy Centre for • The Sexual Health Network Rehabilitation. Fredericton, NB, www.sexualhealth.com Canada.

• www.comeasyouare.com - offers modi- • Sexuality: Chronic Illness and Your fied sex toys for persons with disabili- Sex Life ties http://familydoctor.org/768.xml?print- xml

By: Joanna Model | Sexuality, Intimacy And Chronic Illness - Page 6/6

ALS. Three letters that change people’s lives. FOREVER.