This guest blog is from Leon Paparella. Leon is a group psychotherapist based in Washington, D.C. His practice today is focused primarily on working with individuals, couples, and groups who are dealing with Parkinson’s disease. Leon has Parkinson’s himself — the young-onset kind — and has been living an active life with PD for over 20 years. He is the moderator of my weekly Parkinson’s support group. Based on my experience with him, I enthusiastically second this tribute to Leon I found on the internet: “He has a fearlessness with his own vulnerability and internal process, which he uses ingeniously and strategically in his groups to catalyze levels of intimacy, honesty, and mutual support in sessions like you’ve never seen.”.
Here’s the HBO segment from the show “Curb Your Enthusiasm” that Leon uses to launch his observations:
A recent comedy show on HBO, “Curb Your Enthusiasm” with Michael J. Fox and Larry David, depicts David (who lives in an apartment below) angrily confronting Fox for making loud walking and clumping noises that disturb his sleep. Fox explains that it’s due to his leg cramping dystonia, caused by Parkinson’s disease (PD), necessitating wearing stiff shoes. David argues, saying that he thinks Fox is retaliating for a series of previous negative encounters he’s had with David. Fox states emphatically that David is wrong and that all the observed symptoms are, in fact, due to Parkinson’s. The intense argument reaches a crescendo when Fox says, “I may have sickness in my brain but you have sickness in your mind.” David leaves with a confused, puzzled look on his face.
This humorous (yet serious) scene was reported in a number of Parkinson’s support groups, and I think represents a view of the potential “adversarial” relationship between people with Parkinson’s disease and others, particularly care-partners and the general public. Also, the Fox-David argument reflects an uncomfortable but common question between patients and care- partners as to whether certain behavioral characteristics (visible and invisible) can be controlled and purposely enacted or are the result of Parkinson’s.
Perhaps a reason for the potential adversarial relationship, from the view of those of us with Parkinson’s, is that we often deal with misconceptions and prejudices about Parkinson’s. These fallacies may have a greater impact on younger patients because a major misconception is that PD affects only older people. Another common prejudice against Parkinson’s patients relates to their mental abilities. While people with Parkinson’s may show specific cognitive difficulties, the disease does not necessarily progress to dementia.
Certainly, there are many variations in the types and severity of symptoms and unique personal differences in people with Parkinson’s disease. For all those with PD, however, there is an inconsistent and unpredictable quality in the experience of living with it. Some of this complexity is due to the timing and effectiveness of medication. Also, strong personal and interpersonal emotions may worsen symptoms. In addition, some symptoms of Parkinson’s affect self-image and limit social skills and ability. Together, these factors contribute to the difficulty of engaging and communicating with others.
From the vantage point of those who do not have the diagnosis of Parkinson’s–the general public, care-partners and family members–their experiences and responses are also complex and varied. Most members of the public know about Parkinson’s only at a distance, through famous personalities such as Mohammad Ali and Michael J. Fox. Consequently, these unaffected individuals may find the symptoms of the disease disturbing and confusing and thus may relate to individuals with Parkinson’s awkwardly and with difficulty.
On the other hand, care-partners and family members may be frustrated by the changes or the threat of changes in the functioning of their loved ones and by the changes in their roles and responsibilities and also may fear the uncertain future. At a deep and often unspoken level, they may be saddened by the sense of loss of their marital or family relationship as it was, and sincerely wish for acknowledgement of their caring efforts.
All of these factors contribute to my naming the Parkinson’s relationship adversarial. In my view, it is the individual differences and needs of patients and care-partners, as well as their long-term commitment to one another that make the experience from both sides so challenging.
However, this humorous (yet serious) confrontation between Michael J. Fox and Larry David (two unique personalities) makes an entertaining step toward recognizing, understanding and accepting the individuals involved in Parkinson’s. When seen through a humorous lens, some serious aspects of life with Parkinson’s may be more tolerable, and serve to invite others with their unique versions of this illness to come forth and share their stories. By doing this, I believe there is much hope in bringing all of us closer together.