ECD – you are correct; it is still Parkinson’s – it now has a more precise definition and potential prognosis for me. I believe it is one of many distinct variations of PD that currently lie within the term “Parkinson’s.” Many researchers and clinicians are beginning to view PD as a syndrome, or a collection of syndromes, rather than a disease.

Carolyn - to be clear, my doctor’s conclusion was not pronounced in a grand way, nor as saying that I no longer have PD. It came after I had been examined, and as a result of an extended discussion we had about my activities as a patient advocate for the Parkinson’s Action Network and the Parkinson’s Disease Foundation, and how that dovetailed with the clinical work she has been doing, and the conclusions she has reached since leaving Seattle several years ago. She firmly believes PD is a collection of syndromes, and that the only way patients can be treated effectively is if each person who walks through her door is seen as an individual, completely free of any pre-packaged version of Parkinson’s. She also is a strong promoter and practitioner of the team approach to PD care. (See her article in this summer’s issue of the PDF newsletter http://www.pdf.org/Publications/news...m_approach.cfm)

In our conversation I confessed that I had expected to be dead, or at least very physically disabled, eight years after diagnosis. I told her I had never imagined life after my daughter left for college (which she did just last week), that I had been unable to plan anything in the future. But, here I was, feeling better than I had felt in a long time. Where was the dyskinesia? Why did I not experience on/offs? How come my voice was still strong, my gait even, my balance intact, my movement unfrozen? When would the other shoe drop?

She replied that maybe, in fact probably, it never would. She had the benefit of not seeing me as a patient for several years; she could see little if any change in how I look and behave. I had history on my side – eight official years of little to no progression apart from tremor. She just kind of casually mentioned there was research identifying at least one distinct PD syndrome called “Benign Tremulous Parkinsonism” that seemed to fit my situation, which she then described.

Pressed further by me asking, “does this mean I can plan to be active for some time into the future?” she said, “yes – probably at least for two more decades, as far as your PD is concerned.”

I said, “wow! Does this mean I can go back to school or get a job?” She laughed and said, “Carey, you’re way too intense! Keep the stress at a minimum – maybe start with one class – but not that PhD or trying to keep a job!”

She then said she didn’t want to change any of my meds, but I was to exercise, exercise, exercise, maybe add meditation practice and yoga or tai chi for stress reduction, and get back into therapy for depression. I'll see her again in two months along with the occupational therapist.

So that’s about it. I am cautiously optimistic.

Other notes:

Besides its importance to the care and treatment of patients, another reason to pay attention to the emergence of PD syndromes is the impact on clinical trials. The study states: “identification of these patients in clinical neuroprotective therapy trials may be important, since disproportionate distribution of these patients in treatment groups will distort the outcomes.”

The study’s claim to have identified a distinct syndrome leaves some wiggle room. “Neurodegenerative diseases are heterogeneous and display a variety of rates of progression. Could this simply represent one end of the bell-shaped curve of typical PD? Although we have no current means to be certain, as we did not have data from pathological studies, the near absence of progression apart from tremor and inconsistent response to levodopa therapy suggest that benign tremulous parkinsonism may represent a unique disorder.”

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For those who want to know more, below is a breakdown of why I think the term Benign Tremulous Parkinsonism correctly describes my experience with PD.

The study states “Benign tremulous parkinsonism may be a distinct clinical entity characterized by tremor predominance plus minimal progression of other aspects of parkinsonism. The tremor is often not very responsive to levodopa therapy. In this series, most patients had immediate family members with a diagnosis of tremor or PD. . . . What has distinguished them has been a consistent constellation of clinical features: (1) prominent resting tremor that is the first or among the first signs and that persistently overshadows other aspects of parkinsonism throughout the course; (2) non tremor components of parkinsonism that remain mild; (3) absence of gait disorder apart from reduced arm swing or mild stooping; (4) no more than mild progression, except for tremor, despite at least 8 years of parkinsonism; and (5) absence of disability apart from tremor.”

Longevity and progression: I had a tremor in my right hand for about 5-6 years before I sought a diagnosis (it was only when others noticed it that I decided to seek a medical opinion). The diagnosis of PD was in April, 1999 when I was 41. Eight years later, my symptoms have very slowly progressed, if at all, other than tremor. I have lived at least 13-14 years with a right hand resting tremor.

Symptoms: I presented with right hand resting tremor; this is the only symptom that has shown significant change – I now also have a left hand tremor (resting and action, which hinders my writing); it’s not as bad as on the right. So far, I do not have tremor in my lower extremities or any other part of my body. I also presented with the absence of an arm swing on the right side, a symptom of which I was unaware, but was immediately discerned by my neurologist. My writing had begun to deteriorate, and is now illegible. I have mild, non-progressive bradykinesia that responds well to levadopa; I have no balance problems; I occasionally drag my right foot, otherwise I have no gait problems; I have stooped posture, but have always slumped – never have had good posture. My fine motor skills are impaired; gross motor are not. I have had no change to my voice. The study does not address depression, but I have suffered from, and been treated for depression throughout. I exhibit no decline in cognition – although stress can adversely affect certain cognitive functions for short periods of time (concentration, word retrieval, etc). My memory, long and short term, remains strong.

Medications: I was on agonists alone for 6 years; they controlled my symptoms fairly well (not my tremor), but caused significant problems of daytime sleepiness, certain obsessive-compulsive behaviors, and foggy thinking, so I stopped and began taking levadopa two years ago. It improves my overall movement, but has no impact on my tremor. I started amantadine a year ago, and it controls my tremor. I take Effexor for depression and anxiety.

Family history: No Parkinson’s or other neurological disorders. However, my father has had a hand tremor for years; never progressed or been diagnosed (I can’t think of a time he has ever been to a doctor). He is an active 73 years old.

Disability: I stopped working full time in August, 2002. I had a horrible situation at my job at the University of Washington after 18 years of wonderful employment there. The situation led to severe stress, major depression, and nervous breakdown – all mental and emotional symptoms that went untreated for several months before I dragged myself back into the doctor. I was placed on immediate disability leave and began intensive physical, occupational, and psychological interventions. My physical symptoms were exacerbated by the stress I was under; conversely, the Parkinson’s made it harder for me to deal with problems at work, and impaired my usual resiliency. It was difficult to recover, and that, combined with University politics, led to my layoff six months later (I sued the UW a year later and was successful in obtaining a modest out of court settlement). Trying to start over was virtually impossible for me (my divorce, initiated by me, was finalized at the same time I was losing my job). I opted to apply for SSDI, which was granted two years ago. I am only now regaining a sense of control over my life.

Bottom line on disability: depression and stress, not physical symptoms, were, and continue to be, mainly responsible for my disability. Tremor interferes with my ability to write and type, further contributing to disability.