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Not your Grandfather’s Parkinson’s Disease

Not your Grandfather’s Parkinson’s Disease

The discovery of a biomarker that is 90% accurate in the diagnosis of Parkinson’s Disease makes this a transformative Parkinson’s Awareness month. Awareness months for diseases are a chance for the general public to learn more, and with this new possibility for the early and accurate diagnosis of the second fastest-growing degenerative neurological disease, there is a lot to learn. The stereotypes of what Parkinson’s Disease looks like and who it impacts need to change.

I was diagnosed with Parkinson’s disease ten years ago at age 39, with my symptoms starting around age 27. Parkinson’s Disease is not an “old man’s” disease; 40% of those diagnosed are women, and 20% are diagnosed under the age of 50. Rarely, PD can be diagnosed as early as two years old. But the image of the hunched-over white man continues to come up if you google PD, and does a disservice to women and younger people, who tend to wait on average 10 years to be properly diagnosed. We must change the image of PD for everyone, to increase awareness and speed up diagnosis.

Not all of us with PD have tremors. Surprised? It’s true; the shaky old man is wrong on three counts; gender, age, and symptom! I am a young(er) woman whose predominant symptoms are stiffness and slowness. The three cardinal symptoms of PD (tremor, rigidity, and slowness) do not occur in all people with PD. The phrase used to describe us is “If you’ve met one person with PD, you’ve met one person with PD”. We each have different constellations of symptoms which may indicate different underlying disease processes, although that is still being researched.

Why is proper diagnosis so important? The sooner you find out about PD, the more control you can take to slow the progression of the disease. While no treatments exist right now to slow the disease, exercise (yes, good old exercise!) has the most evidence as a disease-modifying intervention. I personally hate exercise, but I know that it is the one thing that I can do that will have an impact on how fast this disease moves.

 So, what are early possible signs of PD? These can include frozen shoulder, loss of sense of smell, REM sleep disorder, reduced arm swing, smaller handwriting, or a slight limp. None of these alone (or together) definitively diagnose PD but can be early warning signs to check out with your doctor. I had many of these, but didn’t know any of them could be related to Parkinson’s until after my diagnosis, which was 10 years after some of the symptoms had started.

On this momentous occasion of a scientific breakthrough that could change the landscape for PD, it is essential to learn more about the disease and prevent the kinds of experiences many of us have had with delays in diagnosis. Happy Parkinson’s Awareness Month! I would love to be less aware of this disease, but I feel lucky to know that so many scientists and organizations are working toward new treatments, and most of all, a cure.

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