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Parkinson’s & Relationships: Just the Three of Us

Parkinson’s & Relationships: Just the Three of Us. Paul Short, Ph.D. The Parkinson’s Coach www.theparkinsonscoach.com Twitter: PDpsych. If Only Parkinson’s Disease Was A Movement Disorder. Symptoms other than “hallmark” tremor, rigidity, slowing: Depression and/or anxiety disorder

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Parkinson’s & Relationships: Just the Three of Us

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  1. Parkinson’s & Relationships:Just the Three of Us Paul Short, Ph.D. The Parkinson’s Coach www.theparkinsonscoach.com Twitter: PDpsych

  2. If Only Parkinson’s Disease Was A Movement Disorder • Symptoms other than “hallmark” tremor, rigidity, slowing: • Depression and/or anxiety disorder • REM Sleep Behavior disorder • Dysautonomia • Anosmia • Constipation and bladder problems • Changes in Cognition including dementia • Sexual dysfunction

  3. PD as Number 3 • Chronic illness can be like another member of the relationship • It demands attention and resources • It can alter communication patterns • It can elicit strong emotions • It interferes with intimacy, interpersonal and sexual • Sometimes it is personified as in “PD has taken everything from us”

  4. PD as Number 3 • Chronic illness can be like another member of the relationship (continued) • Creates uncertainty about the rules of interaction • Is a source of guilt • “I should be more patient. S(he) can’t help it • “I am not doing enough for him (her). • “I am a burden because of my PD”

  5. Can A Person Be a Burden? • Human beings have an innate right to be honored and accepted as they are and for who they are • “Burden” is not a quality of the disease • Circumstances like disease, aging, etc. can make daily living more challenging • Circumstances can make providing a safe, nurturing environment challenging for family members

  6. Can A Person Be a Burden? • “Burden” may be a description of difficult interpersonal behaviors • Factors that might be related to being “burdensome”: • Depression/anxiety/demoralization • Executive function • Emotional expression • Social Cognition

  7. Can A Person Be a Burden? • No man or woman is a burden; however they can behave in ways that make living with them more burdensome: • Behavioral inertia and inflexibility • Untreated mood disorder leading to irritability and isolation • Emotional blunting and deficits in social cognition

  8. Executive Function • Higher Cognitive Function Allowing Us to Interact With the World with some agency • Initiation/Planning • Prospective Memory (remembering to remember) • Mental Flexibility • Inhibition • Rapid Strategizing

  9. Emotional Expression • Communication of what is going on inside me • Neurological changes can alter internal emotional cues telling you how you are feeling • Decreased emotional signals occur as PD progresses • Decreased vocal prosody dampens a channel for emotional communication • Hypophonia “steals your voice”

  10. Emotional Interpretation • Emotional comprehension-What is Going on in Other People • Cognitive slowing may make it hard to track conversations and respond appropriately • PD can slow the ability to understand the emotion expressed by others • Folks with PD have most trouble tracking anger

  11. Social Cognition • Higher Cognitive Function Allowing Us to Interact With the World with some agency • Function separate from but in conjunction with executive processes • Individuals with PD may have increasing difficulties inferring mood state of others • May be related to some degree to impairment in Theory of Mind (ToM)

  12. Impaired Theory of Mind? • ToM- ability to understand and predict other’s behavior by attributing independent mental states to them • Two components • Affective • Cognitive “Speaking the Language of Parkinson’s” Workshops online and in person have helped improve communication

  13. Impaired Theory of Mind? • 2011 Review by Poletti and colleagues suggests that • ToM is impaired in early PD in the cognitive but not affective component • Affective component of ToM increasingly affected in advanced PD

  14. Meeting Cognitive Challenges • Develop strategies for managing executive and social cognition challenges • Similar to organizational exercises for individuals with ADD • Recognize that this is another aspect of PD not purposeful behavior • Communication/feedback directly and specifically talking about behaviors

  15. Improving Communication • Develop strategies interpersonal communication • Individual counseling for person with PD • Partner coaching • Couples counseling • Internet and Face to Face Group therapy such as “Speaking the Language of Parkinson’s”

  16. Improving Communication • Improving sexual communication • Discuss sexual dysfunction and/or loss of libido with your doctor • Define sexual intimacy as a couple- it isn’t all abou intercourse • Set aside intimate moments that do not move to sexual activities- removes “performance” concerns • Seek assistance from a trained sex therapist

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