DMD and Intimacy

For each section listed below (with green banner being topic name), we could create:

  • Webinar for parents/community (possible guest speakers listed for each topic)
  • Webinar for individuals with Duchenne (PPmD’s Pat Moeschen?)
  • Webpages created referencing webinars (Lindy with guest speakers’ approval)
  • Webinars turned into episodes of FFD’s podcast
  • Possible info/data for academic journals

Scope of the DMD and Intimacy Issue (Dr. Apkon ?)

Challenges include, lack of education, skills needed for relationships, sexuality and Independence, health concerns during intimacy, and parenthood.

Parents and physicians: Assume your child will grow into a sexual being and pave the way for that and talk about it

Lack of sexual education (Dr. Appel ?)

Parents and physicians: Assume your child will grow into a sexual being and pave the way for that and talk about it

Overwhelming lack of sexual education for kids with disabilities (HPV vaccines)

Sexual health: individuals with disabilities are less likely to be screened for prostate health/ cancer

Talk about reproduction, get vaccines, etc. Book resources for kids/teens, save our sons

Ok touch vs. Not ok touch
Give permission/consent for someone to touch you,

Skills needed for a romantic Relationship – (Dr. Truba?)

Help them with mindset of having a partner when older
Cultivate Relationships/social interactions

Talking about interest in romantic relationship
Who/gender attracted to? Homosexuality, hetero, bi

Meeting people, getting around other people, dating with Duchenne

Understanding what is Abuse

Sexuality and Independence (PT? OT?)

Parents encouraging communication about sexual health with Drs.

Gender Assignment – (______)

Intimacy and Physical Health (Dr. Appel?)

Meds that increase testosterone, but what to do with erection?

Bone fragility
Respiratory concerns
Cardiac concerns
Bowel and bladder care (timing of intercourse)
Sexual dysfunction
Ways a support worker can assist

Sex surrogate, escort, one night stand, relationship

Intimacy and Mental Health (Heather Benbrook, counselor)

Touch/ trauma of lack of touch






Parenthood (_____)

Daughters will be carriers, so grandchild may have Duchenne
Sons will not be affected


Practical part of helping out

John Buchbach ideas

Marriage & Medicaid – attorney Leona Filis

Marriage Penalty, SSI, etc.

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