Breast Cancer vs Parkinson’s

Almost eight years ago, I was diagnosed with Parkinson’s and Breast Cancer in the same week.  Obviously, it was a week when I wished I had just stayed in bed and hid under the covers.  How do you react to the news that you have not one, but two major health issues that will be with you the rest of your life?

Much of the next six months remains a blur to me.  I underwent a lumpectomy and radiation for the breast cancer.  A neurologist put me on ever increasing doses of Requip, and my estrogen patch was taken away from me.  All of this meant that I slept all day, was plagued by hot flashes all night and pretty much walked around in a fog all of the time.

Somehow I was able to come to terms with having breast cancer immediately.  My mother had it, my sister had it.  It is the disease that most women fear most.  And it is the disease that is talked about everywhere.  October is Breast Cancer month and there are a lot of stores that celebrate by producing Pink Products, or should I say Pink Profits?  It doesn’t matter how useless the Pink Products are, we buy them anyway because it makes us feel like we are doing something positive.   Celebrities talk with pride about recovering from breast cancer.  There are rallies and walks to raise money.  I even corralled my friends to walk with me as a team for the Revlon Breast Cancer Walk that first year.  We wore our Pink boas with pride as we finished our 5K walk and entered the field at the Los Angeles Coliseum where the Olympics were held.  We were Champions in Pink!  Breast Cancer is fashionable.

But Parkinson’s is another story.   It was hard to come to terms with

Is this really typical?  Do we all look like this?

that diagnosis.  I wasn’t that old (57), I wasn’t a man, I didn’t shuffle, and I didn’t know anyone else with PD in my family or circle of friends.  It was something my friend’s parents had, but they were much older and didn’t move very well.  There were no Parkinson’s products for sale in the department stores during Parkinson’s Awareness Month.  I didn’t even know there was a Parkinson’s Awareness month until this year.  Parkinson’s events were not well publicized.  After all, who wants to go to an event where everyone is shaking, drooling and shuffling?  Parkinson’s is definitely not fashionable.

I was active, playing tennis, going to yoga, traveling and enjoying life as much as possible.  I didn’t have time for a chronic degenerative disease.  I just had a tremor, so I tried to hide it.  And I kept trying, but after a while, people started to notice.  I thought that if I didn’t say anything, it didn’t exist.  So I did what my friends and I call the “Parkie hand-hiding strategy”.  You know the one where you hold your shaking hand, sit on it, stick it into a pocket or purse, or do some other strange maneuvers just to prove that it isn’t shaking.

But of course, that didn’t work and I was only fooling myself.  So why couldn’t I admit it to myself?  Why couldn’t I tell others?  It took a lot of therapy and writing my personal narrative for me to confront what I called the “Elephant in the room”.  Once I started to write my narrative*, which only my therapist was privileged to read, things started to change.  I started to write about life with PD.  But only for other Parkies.  The rest of the world still didn’t need to know.  And then one day, I made a mistake.  I posted something meant for my Twitchy Woman Facebook page on my public Facebook page.  And the world didn’t come to an end.  Wow!  I was outed.  And it was okay.

So now I have embraced my PD.  There is a wonderful world of people in the Parkinson’s community that I have met.  The time I spent last month in Portland at the World Parkinson Congress was an eye opener.  I was able to meet some people who I have corresponded with through this blog.  I talked to doctors, therapists and researchers who valued my opinion.  I  spent time with new friends and old friends, looking for answers and camaraderie.   We have a common bond and we understand each other.  And we don’t all shake, drool or shuffle.  In fact, we spent a lot of time working to dispel that image. We all have the Elephant in the room, reminding us that life is not the “normal” that it used to be.  But that elephant is getting smaller and smaller, and one of these days, hopefully very soon, it will be banished from our lives.

With my friend Clara, looking good with PD in front of Anders M Leines mural “This is Parkinsons”

*More on the importance of writing your narrative in a future post.


18 responses to “Breast Cancer vs Parkinson’s”

  1. Carol Rosenthal Avatar

    Thanks for sharing. Love reading your blog.

  2. About eight months ago, I was diagnosed with Parkinson’s at my pre-op for my lumpectomy. I struggled through the Spring with treatments and acceptance of both diagnoses. I so enjoy your narratives and the knowledge that after 8 years – your world continues and your friendships grow.

    1. Thank you. I am so sorry you are going through the same thing. I encourage you to meet some other women with Parkinson’s when you are feeling up to it. It really makes a big difference in how you view the world through PD glasses.

  3. Hi! I really enjoy your blog and your attitude and for baring your soul. The fact that you were diagnosed with breast cancer and Parkinson’s at the time is almost too much to take..

    I was diagnosed last year at 55 but I was exhibiting signs at 52. I wished I had met you this year at the World Congress in Portland, OR.

    1. Nancy
      Thank you for you kind words. Hopefully there will be other opportunities to meet before the next WPC.

  4. “Twitchy Woman” is such a great name for your blog!

  5. Thank you for the well-written blog. I was recently diagnosed at age 57 as well. I would be very interested in knowing what your stage of progression is now, for obvious reasons. I find it helpful to read what you have written.

    1. Peter
      In answer to your question, my progression has been very slow. I did not start taking Sinemet until February, 2014, 5 years after my diagnoses. I have tremor predominant PD, which typically progresses slowly. PD is considered a designer disease since no one size fits all. Since each person has a totally different path with PD, you cannot assume that you will ave the same progression as I did.
      I am glad you are enjoying my blog and are finding it helpful. Please feel free to get in touch with me if you have any other questions.

  6. Thank for sharing. I am a stage 4 liver cancer survivor from almost 6 years ago this April. Found out 4 days after having my little girl by C-section. It was very hard!. But God is faithful.💞💞💞

  7. I have had Parkinson’s for six years and was recently diagnosed with breast cancer . I can’t find much info on this topic and I am scheduled for chemo at the end if this month . My Parkinson’s cause alit if stiffness and pain and I worry that the chemo amplify it . Did you have chemo? How did you do with it?

    1. Bridget
      Fortunately for me I did not have chemo. I had a lumpectomy and radiation. I slept for about 6 months! Good luck with your treatment.

  8. Diagnosed finally as PD, age 63, about five years later I had the option of having an endoscope examination of my large intestine again (to check for possible blockage or cancer), since my abdomen sticks out much more than before and the constipation was severe. Discussing thoroughly with my doctors (neurologist for PD, also a psychiatrist, as well as an internal medicine MD), I chose not to take the exam again. I had had it done about 5 years or so before and the results were negative regarding cancer (viz.,: no cancer). The internal medicine MD said an “ENSHO” (Japanese for [probably] “inflammation”) had been removed by the wire inside the endoscope, causing some bleeding but curing the constipation for a while. Yet, this second time, I realized that the constipation might be due either to PD itself or to the aging of the intestine, which had suffered an unusual appendectomy at age 22. The (then) usual small slit on the right of the abdomen failed to show the appendix, so the surgeon made a vertical slit about three times longer in the abdomen, found the intestine twisted (he reported later to me), and (after removing the indeed infected appendix) “returned everything exactly like it was in the textbook.” I have since learned that many normal people have twisted intestines. Anyway, I figure that this oddity and the surgery may well contribute to rapid aging of the organ. I was very happy to learn from the doctor in Digestive Organ Surgery (whom I had at first asked about another colonoscopy) the possibility of taking the same laxative every night regularly whether constipated or not. This actually solved the discomfort of impaction (albeit that the protruding tummy still looks odd–that is gradually to yield to exercise to rebuild the cut muscles, never rehabilitated at the previous US countryside hospital.). General health insurance (the homeless only, perhaps, not yet included?) means very good care over here!

  9. […] 18 months ago I wrote a blog titled Breast Cancer vs. Parkinson’s in which I lamented about the fact the Parkinson’s Awareness Month was nothing compared to […]

  10. […] the return of Breast Cancer Awareness month. I have seen a big uptick of views of the blog post “ Breast Cancer vs Parkinsons“ in the last few weeks. What I wrote two years ago in that post still holds true. Bloomingdales […]

  11. I really like your blog I personaly have parkinsons and I found this times of corona very hard to deal with which is why my daughter purchased an apt 1 so i can continue my physical therapy from home their link is

    1. Robert, there are a number of good Rehab and Exercise apps out there for people with PD and other chronic illnesses. I am glad you found one that works for you

  12. […] years ago, in October 2016, I wrote about Breast Cancer vs Parkinsons, which turns out to be my most popular post since beginning this blog. It is still getting read […]

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A Note To My Readers

I love to see your comments and get your emails as we share our collective experiences. But based on a couple of private questions from some of you, remember, I am just a lay person and a patient like the rest of you. For medical and similar advice, you need to talk to your own doctor

Twitchy Woman

Twitchy Women partners with the Parkinson’s Wellness Fund to ensure we have the resources to offer peer support for women with Parkinson’s.