Access to Information About Parkinson’s Disease Is Getting Better

It wasn’t long after I was diagnosed with Parkinson’s disease more than 17 years ago that I started my blog, Parkinson’s Journey. Due to a general lack of information at the time, it became my mission to encourage others with this disease and to let them know they were not alone. At the time, it felt like my blog was one of only a handful about Parkinson’s disease. 

The multiplication of Parkinson’s blogs and websites didn’t happen quickly, but it did happen eventually and steadily. Now, there are more websites, blogs, and other sources of information than I can keep up with. And what used to be considered a rare disease by some seems to have taken neurologists, specifically movement disorder specialists, by storm.

In 2018, the Parkinson’s Foundation shared a study estimating that 1.2 million Americans will have Parkinson’s disease by 2030. The study, known as the Prevalence Project, also confirms that men have a higher probability of developing Parkinson’s than women, and that the prevalence of people with Parkinson’s increases with age, regardless of sex. One of my doctors had told me this years earlier. He believed that we would all end up with Parkinson’s if we lived long enough. 

I think Parkinson’s was really brought to the forefront by actor Michael J. Fox, his Parkinson’s journey, and his willingness to share it with the public. Without his transparency and courage, where would the Parkinson’s community be today? Would other celebrities have stepped up like he did? Sure, several others have come forward, but would they have done so if he hadn’t? In most cases, Parkinson’s isn’t a pretty disease that you want to publicize.

It’s also been said that there are likely thousands, if not millions, more who have this disease but have yet to be diagnosed. Maybe they are in denial. Maybe they think their symptoms will pass and are nothing to be concerned about. Maybe they don’t have access to proper medical care.

Whatever the case, it seems like Parkinson’s is steadily turning up the heat, and we’re becoming aware that it’s much more prevalent than most ever imagined. It far surpasses the numbers that define a rare disease. However, you could say Parkinson’s is rare due to the fact that every case is different. Because no two are alike, a person with Parkinson’s could be considered rare.

It’s becoming rarer for people to no longer know anything about Parkinson’s. The information is getting out there because more people are getting diagnosed and spreading awareness about the disease. And that’s a good thing. It’s just too bad it’s because the numbers are skyrocketing.

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Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Parkinson’s disease.