Hello Christine, 

My situation is similar to yours, I think - dx at the age of 49, symptoms 
tracable to 5-6 years earlier. I'm now 52 -  symptoms relatively mild but 
definitely there, a constant companion. Coming to terms with this illness is 
a process. As part of that process, I wrote a piece that was published in 
August under the title "Michael J. Fox and Me" in the Westchester section of 
the Sunday New York Times. I include it below. 

A friend of mine who has PD developed restless leg syndrome. I think she 
takes valium/ativan at night to help her sleep whenever her leg kicks up, so 
to speak.

Something to consider: if your doctor is a general neurologist, it would be a 
good idea for you to also consult a movement disorders specialist. It is 
important to be cared for by someone who knows and understands PD 
specifically. 

I wish you all the best and look forward to "seeing" you on the list.

Kathleen

----------------

The Rutabaga, C'est Moi

In 1989, a colleague told me a story. One day her husband said to her, “What 
is a rutabaga, anyway?” He had heard about rutabagas. He had read about 
rutabagas. However, he had no idea what an actual rutabaga looked like. 
Neither, it turned out, did she. So they set out on the streets of New York 
to find the elusive rutabaga.  

At a produce stand, they searched the boxes and bins until they found one 
that contained a large, round, homely root vegetable labeled “rutabaga.” Now 
they knew. 
But the story doesn’t end there. Subsequently, every time they shopped or 
even passed a market, rutabagas seemed to leap out at them. The world was 
bursting with rutabagas. And from that day forth, whenever they experienced 
that particular phenomenon - having your eyes opened to something and 
suddenly seeing it everywhere - they referred to the something as a rutabaga.

Ten years later, I was diagnosed with Parkinson’s disease. Rutabaga! 

Up to that point my image of Parkinson’s had been extremely fuzzy. A shut-in 
down the street when I grew up; a friend of my mother-in-law’s; Katherine 
Hepburn and Mohammed Ali—these were people who, I’d heard and read, had 
Parkinson’s, but I hadn’t actually seen them, except for a few celebrity 
photos and fleeting screen images. I had a vague idea of trembling, of being 
immobile, of being bedridden. When, around 1994, I experienced a tuning-fork 
vibration in the ring finger of my left hand whenever my pinky hit the q key, 
I did not associate that sensation with the disease I’d sort of heard of.  A 
few years later, with a left-side tremor, slowed gait, and some postural 
hitches, I discovered that this disease could and did look like me.

This was amazing. Even more amazing was the way I was suddenly seeing people 
like me everywhere. They were in airports. They were in elevators and on 
street corners. They were young and old, male and female. And I recognized 
their tricks, the things they did to mask or control their tremors (which 
with Parkinson’s occur when limbs are at rest, not moving). That man in line 
at the ticket counter, holding a newspaper, just so, over his arm.  The woman 
sitting beside me at a meeting, her hands and feet unobtrusively busy below 
table height. A fellow shopper at the supermarket checkout, using her own 
extra-fat pen to sign the credit slip, deliberately writing big while her 
left hand shakes ever so slightly. When Michael J. Fox came out about his 
Parkinson’s, I watched Spin City for the first time, with great excitement, 
calling moves for my husband’s benefit like a sportscaster: “Look! He’s 
doing the hand in the pocket thing, I do that.... See how he turned? He’s 
smooth, he’s really good.”  

There are so many high-profile PWPs on the list now. (That would be People 
with Parkinson's, not Elmer Fudd doing a guest spot on NYPD Blue.) Think of 
Janet Reno, my personal hero and role model; Billy Graham; Yassir Arafat; and 
apparently, though not officially, the Pope. I’m truly grateful to the 
celebrities who are open about their condition, and especially to those who 
are actively working to promote public awareness and support research on 
Parkinson’s as well as other neurological disorders. But I want people to 
know and understand that Parkinson’s doesn’t begin and end on the cover of 
People magazine, and that it has a very ordinary face. In fact, the disease 
and those of us who live with it may look so unremarkable that you don’t even 
see us. Yet there are legions of us early stage Parkinson’s people out in the 
world, quietly going about our lives, working, playing, learning, 
contributing, making our accommodations, keeping up our spirits, and hoping 
something wonderful will come out of the latest burst of neurological r
esearch.  And yes, I’ll add my voice to the many in support of stem 
cell research, embryonic as well as adult, and please don’t tell me or my 
family that my life is no more valuable than that of a clump of 
undifferentiated cells in a petri dish. 

An irony in this situation, for me, is that in many ways I’ve never felt 
better. I flood myself with vitamins, minerals, and enzymes thought to have 
neuroprotective qualities; I work out weekly with a trainer; I study tai chi. 
I’ve had to acknowledge that stress is my enemy, and I’m learning to simply 
leave behind some of those tasks and expectations, largely self-imposed, that 
ratchet up the stress. There is a certain zen to living with a limiting 
condition. In the process of accommodating to the limitations, curiously, 
surprisingly, you expand. 

So I ask all who read this: when you notice someone moving a bit slowly down 
the sidewalk or the supermarket aisle, or being extra cautious on the 
escalator, or possessed of a seemingly independent limb that’s doing a weird 
shaky dance, don’t be impatient or pitying, or assume that this person is 
deranged or afflicted with DTs. That might be me, or one of my kind, and 
we’re actually managing quite well. And next time you’re browsing the 
produce section and you notice an ordinary-looking, rather ungainly 
turnip-like vegetable, salute the lowly rutabaga, and remember - there are 
plenty more where that came from. 

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