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.
- Sexual Self-determination & Self-efficacy
- Masturbation
- Who ok to ask for help with masterbation
- Pornography
- Guilt, shame
- Sexual abuse
Gender Assignment – (______)
- Mallory?
- Transgender with Duchenne
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
Guilt
Embarrassment
Shame
Fear
Self-worth
Parenthood (_____)
Genetics:
Daughters will be carriers, so grandchild may have Duchenne
Sons will not be affected
Financial
Practical part of helping out
John Buchbach ideas
Marriage & Medicaid – attorney Leona Filis
Marriage Penalty, SSI, etc.