Why many women with Parkinson’s are misdiagnosed

JOHN YANG: After Alzheimerús disease, Parkinsonús is the second most common neurodegenerative disorder in the United States.

Itús a diagnosis nearly 90,000 Americans get every year.

But as Ali Rogin tells us it exhibits its symptoms differently in women than in men.

ALI ROGIN: Parkinsonús disease damages or kills nerves in the brain, causing muscle stiffness, tremors and other symptoms that worsen over time.

And while itús more common in men than women, women are more often misdiagnosed or diagnosed late, and sometimes women experience symptoms and respond to treatment differently than men.

Joining me to discuss is Sonia Mathur, a Parkinsonús disease advocate and family physician.

Dr. Mathur, thank you so much for joining us.

As youúve described it to me, Parkinsonús disease is really more of a spectrum of neurodegenerative disorders more than any one ailment.

So with the understanding that itús not a monolith, can you describe what some of the most common symptoms of Parkinsonús disease are?

SONIA MATHUR, Parkinsonús Disease Advocate: Parkinsonús disease is the second most common neurological disease behind dementia, but itús the fastest growing of neurological illnesses.

And as you mentioned, is neurodegenerative progressive, relentless without a cure.

And the symptoms can sort of be divided into two groups and the motor symptoms.

Those are things like tremor, and slowness of movement and stiffness and false.

Non-motor symptoms can be anything from head to toe, including parents skin changes, fatigue, sleep issues, constipation, a variety of symptoms.

ALI ROGIN: How is it that men and women experienced these symptoms differently?

SONIA MATHUR: Women are more charmer dominant, we have more facial masking and more restless leg syndrome.

When it comes to non-motor symptoms, we tend to suffer more from mood issues such as anxiety and depression and sleep disturbances compared to our male counterparts.

We also experienced more fatigue, pain and your genital symptoms such as urinary dysfunction and incontinence.

And whatús even more that we know that the severity impact of these symptoms varies according to the hormonal status of the woman, for example, throughout her menstrual cycle or with menopause, for example.

We believe that the longer that youúre exposed to estrogen through your life that that may help to prevent or to protect you from getting something like Parkinsonús disease.

We just donút have the answers.

Historically, most research participants were white older gentleman, so a lot of our treatment guidelines that came from that research, were based on a result of a small set of population thatús actually affected by this disease, because the stereotype is still there today that it affects why older gentleman is opposed to the fact that this disease really knows no boundaries in terms of age, gender, race, geographical borders.

ALI ROGIN: And you yourself were diagnosed with whatús known as young onset Parkinsonús at age 28.

What was that experience like for you getting diagnosed?

And how did you come to understand that thatús what you had?

SONIA MATHUR: I basically noticed an intermittent tremor and my right pinky finger.

And I just completed my residency in family medicine was expecting my first daughter, and my husband, whoús also a physician said I had better go get checked out.

And instead of getting the news that I had hoped, I was diagnosed with young onset Parkinsonús disease at the age of 28.

And that was almost 24 years ago.

And the disease continued to progress.

So much so that I had to actually stop my clinical medical practice, unfortunately, and said, devoted my life to words advocacy, educational research in Parkinsonús disease.

The impact of this disease is really extremely disabling effects, not only physically, but mentally, socially, emotionally, relationships get affected, and itús pretty unpredictable in terms of its disability.

Your symptoms and response to medication can really vary day by day, hour by hour, and thatús sort of what Iúm experiencing now as well.

ALI ROGI: And speaking of that unpredictability, are there any symptoms any changes that women should look out for if they think potentially they may be experiencing Parkinsonús disease symptoms?

SONIA MATHUR: The issue with young onset Parkinsonús disease in general and women in particular, is that we often present with nonspecific symptoms.

Mine was a little bit unusual in that I had a tremor right away.

A lot of women or men for that matter and young onset Parkinsonús will present with you know, shoulder pain or slowness of movement, not swaying their arm, loss of smell, constipation, depression, what we call REM sleep behavior disorder, which is acting out your dreams and moving during sleep.

The other problem with diagnosing women or our men in this younger age is the fact that not only its symptoms nonspecific but that physicians also are not in the mindset that this happens in younger people.

Theyúre still on the lookout for it and older people and particularly men.

ALI ROGIN: And to that point, are there any advancements in the study of this that give you hope?

SONIA MATHUR: Itús definitely improving.

Researchers are much more aware of the need to include underrepresented populations in general in their work.

And we need to do research that are inclusive of women and our unique genetics, our unique hormonal status.

The research that is out there currently is lacking in these areas.

For example, I mentioned that we think that there may be neuroprotective role for estrogen when it comes to the timing of estrogen exposure.

When is it best to start something of hormone replacement therapy?

What type of hormone replacement therapy and how long?

What about oral contraceptive pills?

We know that women report that their Parkinsonús symptoms tend to get worse just prior to menstruation sometimes during it as well.

What is the best way to manage those fluctuations?

Thatús something we donút know yet.

How does pregnancy affect the trajectory or progression of your Parkinsonús or does it?

Thereús so many unanswered questions that affect women uniquely.

And I want to always stress that type of research is not only just important for women but can benefit the whole Parkinsonús community because it increases our general understanding or knowledge of this disease, which will benefit everybody itús really a win-win situation.

ALI ROGIN: Dr. Sonia Mathur, family physician and Parkinsonús disease advocate, thank you so much for joining us.

SONIA MATHUR: Thank you so much for having me.