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GIVING VOICE TO SEXUALITY IN ALS

GIVING VOICE TO SEXUALITY IN ALS. Sexuality is understimated. Sexuality and neuromuscular disease: a pilot study Anderson F., Bardach JL. Disability and rehabilitation , 1983;5(1):21-6.

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GIVING VOICE TO SEXUALITY IN ALS

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  1. GIVING VOICE TO SEXUALITY IN ALS

  2. Sexualityisunderstimated • Sexuality and neuromuscular disease: a pilot study Anderson F., Bardach JL. Disability and rehabilitation, 1983;5(1):21-6. • Quality of life and psychosocial issues in ventilated patients with Amyotrophic Lateral Sclerosis and their caregiver. DagmarKaub-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. • Sexuality In patients with amyotrophic lateral sclerosis and their partners Maria Wasner, Ursula Bold, Tanja C.Vollmerand Gian Domenico Borasio;Journal of Neurology,2004, 251: 445–448. • Inappropriate sexual behaviour in a case of ALS and FTD: Successful tratment with sertraline. Johanna M. H. Anneser, Ralf J. Jox,andGianDomenicoBorasio.Amyotrophic Lateral Sclerosis, 2007, Vol. 8, No. 3 : Pages 189-190.

  3. WHY takingsexualityintoaccount? • 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

  4. Aggressiveness, Sexuality, Obsessiveness in late stages of ALS patients and their effects on caregivers.Anna Marconi*, Giulia Meloni*, Federica Fossati*, Christian Lunetta, Stefania Bastianello, Mario Melazzini, Paolo Banfi, Gabriella Rossi, Massimo CorboAmyotrophLateralScler. 2012 Sep; 13(5):452-8. Epub 2012 Aug 7.

  5. It’s a coupleaffair “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: -whatwas the relationshipbeforethe diagnosis -what are theircopingstrategies: reorganization of the couple to face the disease -are thereanygender differences -whatis the partner’sburden

  6. OUR COUPLES 12 Couples Patientsmeanage=60,41 ALSFRS= 29,5/48 50% of the coupleshasstillsexualrelationship: • 7 patientsdidn’t report changes in theirinterestaboutsexualintercourse, and 3 patientsreported an increase in sexualdesire • 8 caregiversreported a lossof interest • 8/12 patients are satisfied with theirsexualactivitywhile 7/12 caregiversare unsatisfied

  7. Whatcan weobserve….. PATIENTS • Goodlevel of Quality of Life and GoodQuality of couplerelationship HAPPY COUPLES • Patients with greaterlevel of motorfunctionalimpairmentreported 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 • Goodlevel of Quality of Life and GoodQuality of couplerelationship HAPPY COUPLES but a worseperceptionthanpatients in couple«Tenderness» and Togetherness • Who has sexual intercourse reported more couple “Tenderness,” “Togetherness “and in general a better quality of their relationship

  8. Whatcan wesuppose…. • Quality of Life is more influenced by psychosocialaspectsthanby functionaland physicalones • Caregiversseemto suffer more than patients as a result of changes in their couplelife related tothe disease • It seems that the progression of the disease does not affect the unity of the couple: patients who are more affectedreported 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?

  9. SO…. 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.

  10. How to managethiscounselling • Changeourperspective:aspatientschangetheirconcept of QoLand changetheirconcept of sexuality, health providers alsohaveto changeperspective. • Don’thavefearto askpatientsaboutsexuality and about the relationship: ifcouplesfeelthereis a problem in thisfield, thisis the time for the right professionist to step in. Be open mindedand emotionallyavailable! • Encourageaffectivity 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

  11. Suggestions for the associationS • 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

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