Educating the Educated About Parkinson’s Disease

Educating the Educated About Parkinson’s Disease

Sherri Journeying Through

I went to the dermatologist yesterday for a skin check. Those of us who have Parkinson’s disease (PD) should make a habit of getting a yearly check because our condition increases the odds of getting skin cancer. The Mayo Clinic reported that patients with Parkinson’s “were roughly four times likelier to have had a history of melanoma than those without Parkinson’s, and people with melanoma had a fourfold higher risk of developing Parkinson’s. …”

So, I had an appointment with the dermatologist.

After a thorough body check and five biopsies, I was free to leave. The nurse stayed back with me after the doctor left because I struggled to move. She asked when I was diagnosed with Parkinson’s. After I answered “2004,” she replied, “Isn’t that young for Parkinson’s?” Not as young as when the symptoms began 10 years before that, I wanted to answer. 

She followed that question with another: “Did it run in my family?”

No.

“Not even one relative?”

No.

“Are you sure?”

Yes.

While I dressed and walked out to where my husband waited in the car, I shook terribly. That’s something I hadn’t done in quite a while. I was sure it was the combination of numbing five different areas with an intrusive needle and the anxious feeling that came over me with the news that spots could be cancerous. However, what caught me almost more off guard was the nurse’s questioning. 

The Parkinson’s Disease News Today forums are a place to connect with other patients, share tips and talk about the latest research. Check them out today!

I guess what surprised me is how uninformed so many still are.

I have spoken to groups about my 20-year journey with Parkinson’s disease. I write about it on my blog. I am open about it with others. I have written articles for several different publications. I am a PD advocate. I know a lot about the disease. I just figure others do, too. What surprised me most about her questions was that she worked for a dermatologist who should be very familiar with PD since the disease can highly affect the skin.

As patients, our job is far from finished.

As long as we live with PD, we are responsible for getting information about this disease out to everyone we can, as best we can. Not just to newbies in the patient club, but also those in the medical fields. Perhaps the patients and caregivers should hold a conference for medical professionals instead of the opposite. After all, we are living PD day to day, feeling it moment by moment. As my movement disability specialist once told me, “You patients are the experts. The doctors take their cue from you.”

If that is true then we need to be proactive with the hand we’re dealt. We must educate those around us, whether they’re a patient, nurse, caregiver, doctor, dental hygienist, or medical transporter. It’s going to take a whole lot more than answering the question of whether Parkinson’s disease is hereditary — it was obvious to me the nurse wasn’t buying my answers.

***

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 Services, and are intended to spark discussion about issues pertaining to Parkinson’s disease.

Sherri was diagnosed with Young Onset Parkinson’s disease over fifteen years ago. She can be found working in her garden, going for walks, taking pictures, or reading books to her three favorite grandkids. Taking life somewhat slower, and perhaps with guarded steps, but she’s not giving in.
×
Sherri was diagnosed with Young Onset Parkinson’s disease over fifteen years ago. She can be found working in her garden, going for walks, taking pictures, or reading books to her three favorite grandkids. Taking life somewhat slower, and perhaps with guarded steps, but she’s not giving in.

Average Rating
5 out of 5 stars. 1 votes.
My Rating:

14 comments

  1. Daniel Novak says:

    As much as we would like a magic fix [to educating health professionals], this challenge will remain ours to fix – one at a time, face to face.

    So we push pause, repeat, play again.

    You reached one more professional, who may be able to help others.

  2. Angie says:

    I enrolled myself to the Michael J. Fox Parkinson’s Association, should I mention about something else we have to watch out for, cancer of the skin. As if we don’t already have enough to worry about, now another thing to worry about! I’ve never heard of skin cancer, of course, not everybody gets it. But, it’s still scary! Let me know, Please! Angie

      • Hi Jerry – Unfortunately, there is a connection between skin cancer and Parkinson’s. The rate of skin cancer is known to be higher in PD patients which is why you should have a complete skin check each year. Perhaps more if you have already been diagnosed with skin cancer. The best thing would be to talk to your dermatologist and movement disorder specialist/neurologist about it. Good luck.

  3. Dear Sherri, As a former medical professional and now a wife of my husband with Parkinson’s, you are right. Medical professionals had very minimal training on Parkinson’s Disease. Students in Speech Therapy at a Master’s level are being trained currently at U of Delaware. Nobody is teaching the current employed Nurses. It is up to the patient and Caregiver to educate them.
    How are you educating them? I am trying hard to do this in Delaware by engaging the Caregivers into sharing the information about their loved ones meds and more when hospitalized.

  4. Tom R says:

    Thanks, Sherri, for the observation. I had the same thing happen at my dermatologist’s office, by the dermatologist himself. He condescendingly dismissed my comment about the link, saying, “well, I’ve been doing this a few years, and I’ve never heard of any association. What web site did you get that from?” I brought him 4 papers from medical journals at the next appointment. On the appointment after that, he admitted he hadn’t read them. Sometimes it’s more than just ignorance we’re up against. It’s hubris too.

  5. Claire Sagor says:

    Sherri,
    I am a retired nurse and I was always open to learn from patients I saw. Answering a few of the nurse’s questions may well inspire him/her to choose continuing education about PD as a requirement for license renewal next time. Thank you for being open to that person, and I’m sorry your visit to the dermatologist made your symptoms temporarily worse. Glad for the news that all was benign!

  6. Sharon V. says:

    HI Sherri: sat morning browse fest re everything Parkinson’s as my husband is newly diagnosed, although in retrospect we know he’s been showing symptoms for at least 5 years …we were not aware of Parkinson’s. He has a lot of various skin issues, and only by insisting to family dr got a referral to skin specialist many months ago -it will happen in May. Now I’m educated, thanks to you, to bring up the issue of his Parkinson’s -It will be interesting to see the response! (I may not have thought of it, had I not read this -thank you…He has spots that simply do not heal -always red, angry, scabby looking. He is itchy beyond relief, and varying creams to relieve. These itchy areas remain red and bumpy….and itchy! Has been brought to attention of GP several times, response use cream??!!

    • Hi Sharon – My suggestion is to keep the appt with a dermatologist and see if they can help. I’ve never heard of symptoms like those with PD, but anything is game when it comes to this disease!

Leave a Comment

Your email address will not be published. Required fields are marked *