Much progress is being made in the treatment of Parkinson’s Disease. From novel oral medications to new drug delivery systems, advances in surgical techniques, and promising clinical trials of stem cell therapies.
The prospects and prognosis for the average Parkison’s patient could look dramatically different within the next 5-10 years.
But what about the non-average Parkinson’s Patient?
Early onset Parkinson’s Disease (OEPD) is defined as Parkinson’s Disease diagnosed in someone between the ages of 21 and 50, experienced by 10-20% of patients. And as it turns out, more set them apart than just age.
What’s the difference?
There are differences in symptoms – including a higher likelihood of experiencing dystonia (longer muscle contractions that can result in abnormal postures). These patients show slower cognitive decline. Depression, anxiety, and other psychiatric issues are more likely to be present (though this could be an effect, rather than a causal factor). EOPD is also much more likely to be caused by specific, rare genetic mutations like PRKN and PINK.
All of these differences between Parkinson’s and EOPD have even led many to ask the question: is EOPD a distinct disease entity?
Lately, the consensus seems to be potentially yes.
And if this is the case, the implications for diagnosis and management could be significant.
It certainly takes a more multidisciplinary approach to support the lifestyle needs of younger patients. Whether that’s helping them stay in employment, navigate romantic relationships, or to start or raise a family alongside a new, undoubtedly shocking diagnosis.
It has also been shown that younger patients are more likely to develop dyskinesia (involuntary muscle movements such as tremors and spasms) as a complication of longer-term use of dopaminergic medications, which are standard first-line options for patients young and old.
And what about the emerging stem cell treatments that have created a buzz recently? It seems many studies are focusing on participants with classic Parkinson’s Disease. I did spot one ongoing clinical trial that does use people with OEPD, but surely much more evidence is needed to support whether these breakthrough treatment options are efficacious for people with EOPD.
The biggest challenge: diagnosis
Potentially more pressing than treatment options, is diagnosis itself.
These differences between Parkinson’s Disease and EOPD, plus physicians’ general tendency to think of Parkinson’s as an older person’s disease, means there is currently a much longer time to diagnosis.
Muscle stiffness or twitches are more likely to be put down to sporting injuries, stress or even magnesium deficiencies.
One study suggested younger patients took 15 months longer to receive their diagnosis than those of ‘typical’ Parkinson’s age.
Parkinson’s Influencer, Allie Signorelli (@imstillallie) has amassed 70 thousand followers, who follow her journey with the disease on Instagram.
She shared that she waited 4 years for diagnosis following her symptoms beginning, before eventually having a diagnosis of EOPD at age 47. She shared that this was due to many of her test results showing ‘normal’ ranges for standard Parkinson’s Disease tests. Her comments are flooded with people with similar stories, or clinician dismissal or ‘normal’ test results.
So if these tests aren’t telling the full story, we urgently need to find new markers to ensure these people can get the diagnosis and the care they need sooner.
This need is only compounded by the fact that rates of early onset Parkinson’s Disease is rising at an alarming rate – new incidences have almost tripled in number between 1990 and 2021.
It used to be the prevailing thinking that Parkinson’s rates are rising because of an ageing global population. But clearly, this isn’t the only reason.
And because of these delayed diagnoses, the figures could well be underestimated.
The time is now for regulatory bodies like WHO to put pressure on developing new, more accurate diagnostic protocols. What do you think?
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The image chosen for this thought piece was inspired by the The Parkinson’s tulip, a red and white variety named ‘Dr. James Parkinson’, the official symbol for Parkinson’s disease awareness, created by a Dutch horticulturist with PD in the 1980s to honour the disease’s discoverer and symbolise hope and perseverance, especially during April’s awareness month.
