“Whatever you call it: soul, spirit, divine spark or unfathomable mystery of existence- it is impervious to PD & a safe place in which to heal.” (@PDpsych, August 7, 2011).
"My marriage is hell but it is better than being on my own. What will I do if I need someone to look after me when my PD gets worse?”
It is a question I am asked a lot by men and women with early PD. The answer, of course, is that I don’t have an answer. However, it is a question that is important to explore.
I once heard a motivational speaker talk about meeting a one-legged ice-skater. This individual had been an avid skater but lost a leg in an accident. He struggled on the ice everyday, learning to do what he dearly loved in a new way. When he spoke to the person relating this story, this man said that he wished for nothing less than to become the best one-legged skater possible. His story illustrates a profound application of what has been called the Serenity prayer:
When a neurologist makes or confirms that one has PD, a cause for distressing physical symptoms has been identified and a treatment is initiated. However, few doctors or their patients recognize that a spiritual crisis has also been precipitated. The patient is frequently left to ask the questions “Why me? What have I done to deserve this? What is going to become of me?” in virtual isolation.
Does Parkinson’s disease define you?
If you were to describe yourself to another person who didn’t know you, how quickly would you mention your PD? When you think about your life as it is, how quickly does the Parkinson’s enter your mind?
“You have Parkinson’s disease but don’t worry. It won’t kill you. It is a chronic and progressive illness, but we can treat it. Here are your prescriptions. I’ll see you in six months.”
I just began seeing another patient recently diagnosed with young onset PD. This exchange he had with his neurologist is, unfortunately, fairly common. Although a very harried doctor was trying to be reassuring, his new patient could only be described as terrified when he arrived at my office some weeks later.
Do a lot of marriages break up because of Parkinson’s?
A lot of marriages break up even when Parkinson’s is not present, so this a difficult question to answer. I have not been able to locate any good studies on this subject. All I have is anecdotal evidence from many discussions I have had in my office, support groups, and at PD conferences. However, I can say with confidence that there is a widely held belief that a lot of marriages with PD end in divorce. A belief can become a self-fulfilling prophecy regardless of its truth.
I monitor several Twitter feeds about Parkinson’s research, treatment, and prevention. This means that I am deluged daily with more information than I can possibly absorb. It is a daunting task trying to make sense of the random bits of information that come across my computer screen and iPhone.
What does it all mean?
Do you sometimes find yourself crying in response to insignificant incidents? Is the tendency to weep easily something that is new and uncharacteristic of you? Is the tearful response uncontrollable and disproportionate to the event that set it off? Does this crying occur when you were not feeling sad or depressed? Is the outburst sometimes incongruent with the event that set it off, such as crying when one hears a funny joke or the converse such as inappropriate laughing when feeling sad or stressed.
When you think back to when you were young, nearly all of your treasured memories are linked to family moments. Every family has a common pool of experiences: holidays, gatherings for special occasions, vacations, outings, sporting events, trips to the movies.