Many of you have heard of the so-called Parkinson’s personality, described as a person having traits and behavior such as:
Serious and humorless
Unwilling to take risks
Rigid and inflexible
Hard working
Obsessive
Introspective
Yep, that pretty much describes me as a “normal” person living with Parkinson’s Disease. I might throw in a several more characteristics:
Type A personality
Perfectionistic
Controlling
High-driving
Intelligent and highly educated
So what happens when “normal” people with Parkinson’s personality traits (perfectionist, high-driving and risk-adverse) take the risk of having Deep Brain Stimulation (DBS) Surgery?
We want perfection.
We want immediate results.
We want to be like the persons we were before we had Parkinson’s. We’d prefer to be a little better.
We want control of the neurostimulator.
And we want it now.
Despite the propaganda seen in videos promoting DBS, most of us won’t immediately jump out of our wheelchairs and run a marathon after DBS. DBS is not like a tonsillectomy or appendectomy where you take out the tonsils or appendix and you immediately feel better. It’s a process that requires patients with patience. Only after reprogramming of my DBS system, am I willing to say that I would do it over again (thank you, Dr. Olga).
The light bulb moment came for me when I figured out and accepted that with DBS, I am exactly the same person that I was at an earlier stage of Parkinson’s. And that’s good enough for me.
You sure have a way of hitting the nail on the head, Kate-- in your ever so perfectionistic way! Your personality description certainly fits me to a tee, as it does so many others I have met along the way who are afflicted with this disease.
Unfortunately, patience was never one of my strengths-- I always knew exactly what I wanted and thought that anything was within my grasp, if I simply applied myself and worked hard enough for it. After all, that's how I got my undergraduate degree in less than three years, Phi Beta Kappa, no less, and earned my law degree!
But the universe gave me an even bigger opportunity to apply my talents when I was diagnosed with Parkinson's, divorced from my husband and lost my father, stepfather. grandmother and two uncles all in the same year! I soon realized just how little I was actually in control of and DBS has forced me to reluctantly develop patience.
It would be safe to say that if these past several years have taught me anything, they have taught me to have greater humility and compassion when it comes to facing the many unexpected twists life presents us all. Oh, and as my 7-year old daughter so often reminds me, to "expect the unexpected!"
Posted by: Valerie Graham | January 04, 2008 at 12:57 PM
Re: Parkinson’s Personality, from Paul Zeiger
The currently popular study of personality characteristics correlated with Parkinson’s is likely to produce some useful results, eventually. For now, though, I would recommend caution, together with a serious effort to separate those characteristics into (at least) three classes having differing practical implications, namely:
Inherited characteristics somehow linked to a predisposition to develop PD,
Early symptoms resulting directly from the PD itself, and
Adaptations made, consciously or unconsciously, by the individual in order to deal with limitations resulting from PD.
Inherited characteristics are of primary interest to the gene therapy community. They point to stuff that comes to us through our genomes, and which may be somehow dealt with genetically. They may eventually be useful in triggering vigilance in watching for an early diagnosis (as has been the case with breast cancer).
Early symptoms are of primary interest to medical diagnosticians. They are things that family doctors and general neurophysiologists can learn to spot, triggering a referral. My own “amplified anxiety” (experiencing big anxiety in situations when small anxiety was normal) is probably of this type.
Adaptations made are of primary interest to those of us with PD. Behaviors that in some persons indicate pathology may in a PWP be a beneficial adaptation. For example, a person whose memory is not as dependable as it used to be may adopt behaviors of double-checking that in someone else would signify Obsessive-Compulsive Disorder. For those of us with balance problems it can be productive to adopt the otherwise paranoid stance that gravity is out to get us.
The upshot of all this is that “Parkinson’s Personality” is a simplification to be approached with caution. What seems clear is that there are many behavioral characteristics that are more common in those who later develop PD. What is not so clear is the significance of each of those characteristics in each individual case; the above three classes provide some possibilities, and there may be more. Everybody’s different; nothing beats a coherent analysis of how each individual’s personal characteristics fit together and how each of them connects (or doesn’t) with a diagnosis of PD.
Posted by: Paul Zeiger | January 04, 2008 at 07:15 PM
Hi Valerie,
Thanks for your comments.
You and I are the only two people I know that earned our undergraduate degrees in less than three years and marched right on to the next adventures in our lives.
I often wonder what it would have been like to take the five year plan.
Kate
Posted by: Kate Kelsall | January 05, 2008 at 07:26 AM