Intimacy and ALS

Jennifer Klapper, RN, MSN, CNS-BC

This information is for individuals and couples coping with ALS, For creating a new balance in intimacy and sexuality with:
Respect and communication
Thinking outside the box (myth-busting)
Creating new definitions of intimacy

We were doing okay before, but now… What interrupts the established patterns and balance?

  • Fatigue
  • Depression, grief, and stress
  • Medications like antidepressants
  • Mobility changes: decreased mobility, muscle spasms, equipment like hand splints or a bi-pap getting in the way
  • Concern about hurting your partner
  • New roles: being a physical caregiver or physical care receiver may seem at odds with the marital relationship – even one based on give and take in other areas
  • Societal and cultural myths about sexuality and intimacy
  • Appearance changes such as loss of muscle tone or a PEG tube may include:
    - Self-esteem difficulties, which may result in not projecting a sexual self, affecting a couple’s initiation patterns and relaxation
    - Changing levels of attraction

But I always thought that… (Some MYTHS about sex)

  • Performance is the only thing that counts
  • All physical contact must lead to sex
  • Sex equals intercourse – no other intimate activities “rate”
  • An erection is essential for a satisfying experience
  • A sexual relationship is the only way to overcome loneliness
  • Sex must be spontaneous and natural or it’s not right
  • Good sex should follow a straight line of increasing excitement to mandatory climax
  • A man always wants and is always ready for sex
  • Youth and beauty are essential to sexuality (J. Butcher, 1999)

***We no longer believe these myths!***

What do you mean, “think outside the box?”

Now that your circumstances have changed, it may be helpful to think creatively about experiencing physical closeness. You may find you can still have a lot more than you think if you reconsider what you are really looking for in physical closeness. First, I’d like to define some terms.

What is the difference between sex and intimacy? (B. Hage, 2000)

Sex:    Intimacy:
Stimulating   Intense
Exciting   Negotiation
Exhilarating   Touch
    Innermost feeling
    Meaningful
    Attachment
    Caring
    Yearning

    
Intimacy may be more attainable and satisfying for you and your partner now.

How to re-create or re-define intimacy?

Communicating with your partner
Talk, and active listening, is the main way that we build and maintain intimacy. It’s not easy to do—we save it for those closest to us, and even that is challenging! Avoiding talk about something like sex, however, can make individuals in a couple fearful, and imagine worse than a situation is. Approaching your partner about your feelings creates intimacy around the subject, and may help resolve fears, confusion, or resentment.

Write ideas down first, to help focus your feelings and find words to express yourself. Pick a neutral setting, like sitting at the kitchen table, to talk about it. Consider what physical symptoms interfere most, and what feelings and associations you have when you think about ALS and your love life. Then talk, listen, and listen again.

Hints:

  • When talking about sex, make sure of the basics: a mutually agreed upon time. Quiet, uninterrupted, and eye to eye. Avoid labeling the other’s character (such as “You’re selfish,” “such a procrastinator,” etc.). Avoid generalizations like “you always, you never…”
  • Adopt a mindset of exploration.
  • Let go of expectations and goals in intimacy. “Foreplay” needs a new name! Physical intimacy makes people feel good, with or without an orgasm.
  • Talk about what activities you desire. What activities you’re comfortable with. 
  • Trust in physical contact, warmth and affection for its own rewards. Revel in it.

Sometimes a little planning… can help create wonderful, intimate time together.

Strategies for intimacy:

  • Energy conservation: are mornings better? Or, after some time on Bi-PAP, with a little recovery time on Bi-PAP as well?
  • PEG tubes: could tape up/cover with ace bandage, or bandeau or lingerie
  • Positional helpers, e.g. wedges, pillows, books with new position descriptions, to help deal with fatigue or spasms (eg, head of bed elevated - or use pillows - side-lying may be least energy-consuming for women; for men, on back, or side-lying may be best)
  • Couple identity boosters: regularly scheduled “date nights (this includes finding a sitter or a friend to stay with any young children in the home, even if you’re staying home yourselves!),” and “No ALS talk” times. Personal time away from caregiving. Light a fire, flirt, stargaze, take a bath by candlelight, watch the sunset, hold hands. Leave little romantic tokens to remind eachother of your love, like hiding little notes or a candy kiss under your partner’s pillow.
  • Consider creating new rituals and sexual signals that separate caregiving activities from sex and romance. Talk together about the old signals and rituals that said “I’m interested—are you?” to begin the path to creating new ones.
  • Stimulators/bridges to building interest: pictures/stories/video
  • Consider using intimate toys, especially if mobility, energy, or interest is limited. Made for men and women. Some are hand-held, some attach to the hand or slip on a finger, some are fit on the body, and some are remote-controlled! Use care with motorized toys: do not leave a person with limited mobility unattended, to avoid burn risk.
  • Avoid “spectatoring,” which means part of you is stepping back from the intimate moment, judging yourself, and being critical of anything new or different. Use gentle humor. Think sexy!

Resources
A Preface
“Tasteful” or “too much:” Sexuality is perceived and expressed differently by everyone. These resources are a few sites which may be helpful. They are legitimate (that is, not virus-laden, pop-up ridden or containing graphic title pages), but some material is explicit. Please consider your own comfort level before viewing.

Additionally, your ALS Association mental health nurses and counselors encourage you to discuss your concerns about intimacy with them as well.

Gail Houseman, RN, MSN-CS,  phone: 215-643-5434
Sue Walsh, RN, ACNS-BC, phone: 717-652-2800
Alair Altiero, Ph.D., phone: 717-204-7548 ext. 82
Kathy Valentino, LCSW, phone 609-433-6333

Selected Informational-- Safe, not-for-profit—Websites: (double-checked and legitimate as of April 5, 2016)

1) Sexuality and Disability
http://sexualityanddisability.org/ 
A website with a range of discussions on topics such as self-esteem, partner concerns, and dealing with spasticity. It is more oriented toward discussion about issues related to intimacy and disability than specific “how-to’s.”

2) Access Guide Canada: Sexuality and Relationships
http://abilities.ca/special-focus-sex-love-disability/
http://mediaedge.imirus.com/Mpowered/book/vabs11/i1/p34 
Resources and support on issues of intimacy for people with disabilities. This has an extensive “webliography” of on-line informational resources.

3) Sexual Health.com
http://www.sexualhealth.com/disabilities-chronic-conditions/ 
A solid, helpful site on many issues related to sexual health, with the above section on sex and disability.

4) On-line supplies
www.drugstore.com 
For buying assistive items/toys discretely (they sell normal drug store items like soap and toothpaste, too)

Selected Books:
(These can be found in paperback at www.amazon.com or at some of the websites below)

The Ultimate Guide to Sex and Disability
For all of us who live with disabilities, chronic pain & illness
By Miriam Kaufman, M.D., Cory Silverberg and Fran Odette

In Sickness and in Health: Sex, Love, and Chronic Illness
(A guide to keeping love and physical intimacy alive and well)
By Lucille Carlton, B.S., M.Ed.

Intimacy is a state of mind and heart. Everything else follows.

Go to Navigating Life with ALS page


 
 

The ALS Association Greater Philadelphia Chapter
321 Norristown Road - Suite 260, Ambler, PA 19002
215-643-5434

The ALS Association is a 501(c)3 nonprofit organization and donations are tax deductible to the full extent of the law.