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