Fact Sheet: Let’s Talk About Relationships

Two women sleeping together

Relationships, sex and intimacy issues have been highlighted as key areas to consider for people with young onset Parkinson’s. Some people are doing Parkinson’s solo, some are in long-term relationships, and some met their partner following diagnosis. Changes in relationship responses and functioning that come with young onset Parkinson’s can be as a result of the condition itself, as well as the affects of medication or the impact of other factors such as fatigue or changes in partner roles. 

People with young onset Parkinson’s provided the following information which has shaped our YOP-X Relationship Discussion Series.

Factors impacting on the ability to have an intimate relationship for people with young onset Parkinson’s include:

  • Reluctance to ask for help
  • Lack of emotional support
  • Lack of physical support
  • Fatigue
  • Lack of sleep
  • Depression
  • Anger
  • Stress
  • Guilt
  • A feeling of being overwhelmed
  • Impact of changes in independence
  • Impact of changes in partner roles
  • Parenting concerns
  • Concern for your employment security
  • Worry about the future
  • Financial concerns
  • Legal concerns
  • Tremor
  • Rigidity
  • Slowness of movement
  • Difficulty with coordinating movement
  • Self-esteem issues
  • Negative body image 
  • People with young onset Parkinson’s have reported feeling:
  • Lack of sexual desire
  • Hypersexuality (sexual preoccupation/addiction)
  • Changes in sexual function
  • Difficulty with getting or keeping an erection
  • Difficulty in reaching ejaculation
  • Vaginal dryness
  • Pain during intercourse
  • Difficulty in reaching an orgasm
  • Feelings of reduced relationship intimacy
  • Fear of incontinence during sex
  • Balance issues during sex

The following strategies were identified as useful for people with young onset Parkinson’s:

  • Focusing more on casual intimacy like kissing and touching
  • Talking to your partner about your concerns
  • Changing the time of the day when sex is possible
  • Taking a more passive role during sex
  • Scheduling sexual activity for when medication is working
  • Expanding your sexual repertoire 
  • Increasing exercise to improve mobility and stamina
  • Taking prescription medication specifically for sexual dysfunction
  • Going to the toilet before sex
  • Medication to reduce the size of the prostate
  • Administering an enema before sex
  • Use of an anal plug
  • Using medication such as Viagra, Levitra or Cialis
  • A self-injection or pessary to produce an erection
  • A vacuum pump to produce an erection
  • Sex toys
  • Sex therapy
  • Hormone Replacement Therapy
  • Counselling
  • Pelvic Floor Exercises

Couple Massage Classes

Relationship therapy is funded under the NDIS, including counselling to help with overcoming sexual issues as an individual or a couple.

If you are experiencing changes in relationship responses, use the YOP-X App and follow the prompts to fill out your own Relationships and Intimacy Checklist, then choose an email address for forwarding. You can attach this checklist to your NDIS application to provide additional information, or forward it to your treating specialists.