1.
Sexuality and neuromuscular disease: a pilot study Anderson F., Bardach JL. Disability
and rehabilitation, 1983;5(1):21-6.
2.
Quality of life and psychosocial issues in ventilated patients with Amyotrophic
Lateral Sclerosis and their caregiver. Dagmar Kaub-Wittemer, Nicole von Steinbu¨ chel,
Maria Wasner, Gerhard Laier-Groeneveld and Gian Domenico Borasio. Journal of Pain and
Symptom Management ,2003, Vol. 26 No. 4.
3.
Sexuality In patients with amyotrophic lateral sclerosis and their partners Maria
Wasner, Ursula Bold, Tanja C.Vollmer and Gian Domenico Borasio; Journal of Neurology
,2004, 251: 445–448.
4.
Inappropriate sexual behaviour in a case of ALS and FTD: Successful tratment with
sertraline. Johanna M. H. Anneser, Ralf J. Jox,and Gian Domenico Borasio.
Amyotrophic Lateral Sclerosis, 2007, Vol. 8, No. 3 : Pages 189-190.
 sexual function is usually not affected directly by the
disease progression.
 sexual activity is high despite physical limitations.
 sexual interest and activity persist well into late life,
although with a decline. Sexual activity in ALS patients does
not seem to differ from the general elderly population.
Sexuality can be a resource to cope with the disease
1.
Sexuality
Have you noticed any recent changes in your
interest in sexual activity?Y/N
Much less involved Less interested More
interested Much more
interested
1.
Would you describe your current sexual desire as
strong? Y/N
1.
Are you currently engaged in a sexual relationship
with your partner? Y/N
1.
Are you satisfied with your current sexual life? Y/N
- if not, is your dissatisfaction due to your partner?
Y/N
- if not, is your dissatisfaction due to issues related
to your sexual potential? Y/N
1.
Have you ever asked any sexual favors from anyone
other than your partner? Y/N
- if yes did you also have sexual intercourse with
this/these person/people?Y/N
- if yes are these sexual relations more
prevalent than those with your partner? Y/N
1.
Do you experience dreams of a sexual nature? Y/N
1.
During the course of the day do you experience
thoughts of a sexual nature? Y/N
1.
Do you have difficulty falling asleep due
to persistent sexual thoughts? Y/N
0
1
0
0
1
0
0
1
“an alteration of sexual behavior did not emerge, even if an
increased sex drive has been found”
IT’S NOT AN INAPPROPRIATE
BEHAVIOUR, IT’S A COUPLE
PROBLEM AND CONCERN:
-what was the relationship before
the diagnosis
-what are their coping strategies:
reorganization of the couple to face
the disease
-are there any gender differences
-what is the partner’s burden
12 Couples
50% of the couples has still sexual
relationship:
Patients mean age=60,41
ALSFRS= 29,5/48
- 7 patients didn’t report changes
in their interest about sexual
intercourse, and 3 patients
reported an increase in sexual
desire
patients
- 8 caregivers reported a loss of
interest
- 8/12 patients are satisfied with
their sexual activity while 7/12
caregivers are unsatisfied
male
female
PATIENTS
 Good level of Quality of Life and Good Quality of couple relationship
COUPLES
HAPPY
 Patients with greater level of motor functional impairment reported a better
perception of couple “Togetherness”
 Who is still engaged in sexual intercourse reported more couple “Tenderness” and
a better perception of couple relationship
CAREGIVERS
 Good level of Quality of Life and Good Quality of couple relationship
HAPPY
COUPLES but a worse perception than patients in couple «Tenderness» and
Togetherness
 Who has sexual intercourse reported more couple “Tenderness,” “Togetherness
“and in general a better quality of their relationship
 Quality of Life is more influenced by
psychosocial aspects than by functional and
physical ones
 Caregivers seem to suffer more than patients
as a result of changes in their couple life
related to the disease
 It seems that the progression of the disease
does not affect the unity of the couple: patients
who are more affected reported a better
perception of couple cohesion
 In our preliminary sample quality of life is not
related to the presence or absence of sexual
intercourse. tenderness and togetherness more
important than sexual activity?
 In some cases in the couple there are different
points of view about sexuality. Patients maintain
high sexual drive vs caregivers reduced sexual
interest: disease related distress?
Sexuality should not be a taboo because this is a resource for
patients couple unity and sexual relationship and a way to feel
alive and gratified.
Associations and Health care professionals should proactively
address this topic as part of patient care, and offer appropriate
counselling where indicated.
1. Change our perspective:as patients change their concept of QoL
and change their concept of sexuality, health providers also have to
change perspective.
2. Don’t have fear to ask patients about sexuality and about the
relationship: if couples feel there is a problem in this field, this is
the time for the right professionist to step in. Be open minded and
emotionally available!
3. Encourage affectivity and tenderness: incite the reawakening of
hugs, caresses and kisses to discover a new way of being together
and a new way to live couple intimacy
 Prove training for telephone counsellors so that they can better answer to the
needs of the couple and direct them to a focused support
 Provide individual support to couples to allow them to face their emotional block in
sexuality: in this experience we observed that the individual context is better than
group therapy because sexuality still belongs to themes of intimacy and cultural
taboos