Don Hitko, Facilitator of the Greater Lansing Area Parkinson's Support Group, is a very positive individual who is an inspiration to many. He has been creatively working to "make sense" out of Parkinson's disease from a person with PD and family point of view. This article is intended to persuade others to look beyond the obvious when you are with someone who has....THE PARKINSON MASK
(Permission to reproduce by author)
In this age of computers, any subject of choice usually can get more than enough coverage. This is a blessing for those of us who have Parkinson's disease. As we prompt and poke at our computers, an avalanche of descriptions, advice, reports, treatment trends, testimony, and inspirational offerings becomes available. Never in short supply are accounts of courage, sacrifice, and determination as we attempt to cope with our disorder.
As we access the multitude of resources for our information, a realization can form from the sense that with all this knowledge, inspiration, and support that we are fondling, something is still not on target. What seems to be beckoning is the need for expression of the turmoil that churns in our bodies, minds, and souls. Knowing is not enough! We can feel from one moment to the next that we are trapped in a body and mind that is becoming increasing hard to manage. This moment to moment awareness is fueled by a blunt sense of isolation and alienation.
Contributing to this dilemma is the unfortunate way that Parkinson's sculptures our minds and bodies. It is how this chronic ailment affects our inner and outer selves as we try to interact with our families, friends, any other good folk. This has its beginning with the conditioning we all have to each other's body language, and to the abilities needed to connect and communicate.
The person with Parkinson's disease doesn't project an approachable persona. The loss of some of the control of the face and head muscles creates a stare-like feature that is referred to as the "Parkinson Mask." The eyes don't blink as much; the smile, if there is one, appears forced or is of a short duration. The stiff neck and shoulders remind us of Frankenstein. There may be uncontrolled movements that vary from excessive to a Zombie-like absence. The hunched back is a reminder ofthe bell ringer from Notre Dame. There can be a funny gait, drooling, an unkempt appearance, and - heaven forbid - a body odor! This all adds up to an approachability that is uncomfortable, if not repelling.
If contact is eventually made, further dissonance is encountered. The voice of a Parkinson Person is often raspy and lacks volume that is not perceived by its owner. Any exchange of conversation is followed by a request to repeat what he has just spoken. Sometimes, no attempt to hear is resorted to. As the Parkinson one speaks, there is a tendency to run the words together, especially in a telephone conversation.
If a request is made to help communication by writing down the message or idea, then another Parkinson hardship is on tap: the lack of coordination causes handwriting that is barely legible.
Difficulty with memory is another burden a PD person can experience. The slow responses, the mixed up details, further make the situation uneasy.
Low libido due to the disease or the medicine taken, puts into hibernation the masculine and feminine interplay that can add radiance to any interaction. Balance problems plus muscle weakness and stiffness result in a reluctance to move about, which leads to judgments that you want to be left alone.
Parkinson People are too often slow and fumbling. This does not go well with our hurry hurry lifestyles. The whining response from the PD person is "I am doingit as fast as I possibly can. Please be patient!
Sleep disturbance is more than occasional for the one with the masked face. Yawning and loss of attention help to pile on the discord.
Fluctuation of moods can add to disruptions. Within the short span of time that medication wears down, a swing in feelings or any sense of well being can change into a "joyless cranky wanting to withdraw" mood. This inconsistency adds a wariness to the relationship.
The focus in this presentation is not meant to detract from the lofty qualities that are companion to warm hearted people and their care givers. It is meant to raise the curtain on the predominant struggle that too often is buried under the "chin-up" rallying cry that can misdirect some well-intended cheerfulness.
Suppression of the powerful torment that can encompass this chronic condition can lead to an unwillingness to engage the despair and inaction that can bring life to a creep!
The Parkinson mask can hide the face from the reality that exists in a warm and tender heart that may be in disguise.