For Women with Parkinson’s: Hormones and PD Meds

On Sunday, November 1, Twitchy Women hosted a panel discussion on how changing hormones can interfere with Parkinson’s medications for Women with PD. We began with an overview of the few studies that have been done on this topic. Unfortunately there has not been very much research on this.

Estrogen may provide some level of neuro-protection

First, there have been several studies that suggest that Estrogen provides some level of neuro-protection; if so, that may explain, at least in part, why PD onset in women tends to come later than it does for men. But, these studies were not looking at how the hormones might interfere with the effectiveness of your PD meds and say nothing on that front.

Menopause symptoms can worsen your Parkinson’s

Second, the American Parkinson’s Disease Association (APDA) and the European Parkinson’s Disease Association (EPDA) were the only websites where I could find anything about PD Meds and Hormones. Both were careful to state that these findings were not definitive. Here is what they both said:

  1. For pre-menopausal women:
    • As many as 11 out of 12 pre-menopausal women with PD experience a worsening of their symptoms and reduced effectiveness of their medications a few days before and during menstruation.
    • Doctors will generally focus on treating PMS before treating PD.
    • Speak to your neurologist before taking additional PD med’s during PMS.
    • Birth control pills can reduce the fluctuations in hormones.
  2. For all women, regular exercise and relaxation techniques can help decrease symptoms.
  3. For menopause and post-menopause
    • Menopause symptoms can worsen your PD symptoms and there can be confusion between Menopause symptoms and PD symptoms.
    • Hormone Replacement Therapy (HRT) can be helpful.

Our Experiences

The three women on our panel spoke briefly about their experiences before we went into breakout rooms for smaller group discussions.

Image from Practo Health Wiki

The first was Darlene, who was diagnosed at age 43. She has noticed increased PMS symptoms, including cramping and heavier bleeding. She said she feels much like she did as a teenager with PMS. Her “off times” for her PD meds are much longer at this time. She just started on oral contraceptives that will reduce her periods to 4 times a year, hopefully reducing some or all of the problems she is having.

The second was Anne, who was diagnosed with PD the same month that her periods stopped; in her words, “a double whammy.” She started having intense hot-flashes almost immediately, the anxiety of the PD diagnosis affected her sleep and she was also having headaches. Her general practitioner suggested that the first thing she should do is to see her gynecologist about HRT to make her less miserable.

Last was Bonnie, who said she was in denial for almost 4 years after her diagnosis. At first, she went the alternative medicine route and saw complementary medicine practitioners and took a lot of supplements. The supplements did not seem to help, and she finally started on PD meds about 6 months ago. Her biggest problem is hot flashes and doesn’t know if that is affected by her PD. She focuses on exercise and nutrition. She wants to learn from the other women in her group.

Small Group Discussions

Pre-menopause – A small group of only 5 women, most said that they had serious cramps like when they were teenagers. Off-times for their PD meds increased. Exercise, stretching and heating pads can help. Most are planning to speak to their gynecologist to go on birth control to reduce the number of periods per year so that they do not have to go through this every month.

Image from Zen Of Sleep

Menopause group – only 3 women were in this group, all on HRT. Two take oral HRT and the third is on patch. The HRT has helped all of them.

Post menopause – This was by far our largest group with over 20 women. Some are on HRT. Many do not see any difference in Parkinson’s symptoms with HRT. No one talked about going off HRT and how that would affect their Parkinson’s.

It was a very interesting morning, but unfortunately, nothing earth-shattering came out of it. This may be why there are almost no studies on the effect of changing hormones on Parkinson’s meds; it seems that every woman reacts differently, making it difficult to come to any general conclusions.

If you want to add to this conversation, join us on the Twitchy Women Facebook page. (Not Twitchy Woman ) This is a closed group, so you will have to request to join it. It is for women with Parkinson’s Disease only in order to keep confidentiality.

It’s Parkinson’s Awareness Month, but you already knew that

It’s April, which means you are going to be hearing a lot about Parkinson’s Awareness Month.  If you read any other blogs or PD newsletters, you have already been inundated with information.  There is a lot happening this month, with many events being planned around the April 11 birthday of James Parkinson.   His groundbreaking paper, “The Shaking Palsy”, was published in 1817 and has long been considered the foundational text of the disease.

So the good news is that we Parkies are all getting the info about Parkinson’s.  The bad news is that the outside non-Parkie world is still clueless.  So here we are, 201 years after Parkinson’s essay and most of the world and many Parkies believe that there is nothing that can be done to improve our outcome.  And many still think of an old man bent over, shuffling and trembling when they hear the words Parkinson’s Disease.  So it is our job to change that perception.  We may not yet have a cure, but scientists and researchers seem to be getting close.  There are many new theories about what causes Parkinson’s that are very promising, and one of them might just lead to a treatment that could be a cure.  As people with Parkinson’s, we must demand the best treatments available to improve the quality of our lives.  And to do that, we must be educated consumers.

Here are a few things that you can do this month to learn more about Parkinson’s and to raise Parkinson’s awareness.   I tried to include a few new things that you may not already have read about.

 

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I #uniteforParkinsons because I want to play with my grandchildren

  • Join the #UniteforParkinsons campaign. This campaign was originated in England with Parkinson’s UK and the European Parkinson’s Disease Association (EPDA), but is now a global campaign.  Post a photo or video of you on social media with a sign with the words I #UniteforParkinson’s because ……. (you fill in the blanks)  Please post them on the Twitchy Woman Facebook page  as well as your own FB page, Twitter, or whatever social media you are using these days.  Let’s see how many we can get this month on Twitchy Woman! There is also a guide for the campaign which has many ideas that you can use.  Share your story and inspire others.

 

  • Participate in a local walk.  The Parkinson’s Unity Walk takes place in NY on April 28.  There are many other walks, runs and other activities going on around the country.  Check with your local organizations to see what is happening in your area.

 

  • This one I just heard about and it sounds fascinating.  Log onto INSIGHT 2018, Wednesday 11th to Friday 13th April for World Parkinson’s Day.  Join the first online World Summit and discover how to live your best life possible – because of and in spite of Parkinson’s.  Connect with experts, academics, specialists, clinicians and people living with Parkinson’s who are trying to live their best life possible.

  • Become a Patient Advocate for any of the Parkinson’s organizations.  They will train you to reach out to elected officials, speak at public engagements and more. Another interesting concept is the formation of Patient Advisory Boards for pharmaceuticals and other companies.  They want to hear from us about what we want to treat our Parkinson’s and see us as part of the team from start to finish in developing new drugs, clinical trials, etc.

     

     

  • In Los Angeles, where I live, the Parkinson’s Community LA is having an event titled “Living Artistically with Parkinson’s” featuring works by people with PD.  All pieces will be for sale by silent auction and will benefit the artists and PCLA.

     

    About 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 Breast Cancer Awareness Month.  Let’s try to change that perception together, today!

     

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