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.

COVID-19 Induced Apathy: Is That a Thing?

By Sharon Krischer

Originally published by ParkinsonsDisease.net on October 13, 2020

How many weeks has it been now? Months? I have totally lost track. It must be at least 6 months or more.

At first, it was strangely energizing. We had all this time to get caught up on the things we needed to do and the things we wanted to do. And now what? We are making up things to do. There is no motivation to get dressed unless you are leaving the house, which happens only a few times a week, if at all. And even then, yoga pants will work just about anywhere except the golf course.

Apathetic elderly Latina woman swipes screens featuring virtual screens of yoga, wedding, and baseball game cardboard cutouts away from her
from ParkinsonsDisease.net

What should we do today? Nothing?

This morning, Mr. Twitchy and I looked at each other and asked what we had to do today. With a collective sigh, we both said “nothing” in unison. We decided to ride our bikes to see our grandchildren and surprise their parents. It is a short ride, just 2 1/2 miles each way. We were home by 9:00am and have been staring at each other ever since.

Read the rest of the article here

An interesting study about COVID-19 and Social Isolation

Social isolation often leads to apathy. The authors talk about the effects of isolation related to COVID-19 on People with Parkinson’s.

Synergy of pandemics-social isolation is associated with worsened Parkinson severity and quality of life

October 8, 2020 in Nature by Indu Subramanian, Joshua Farahnik & Laurie K. Mischley 

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Social isolation and its deleterious effects on health increases with age in the general population. People with Parkinson’s Disease (PWP) are no exception. Social isolation is a risk factor for worsened health outcomes and increased mortality. Symptoms such as depression and sleep dysfunction are adversely affected by loneliness. There is a paucity of research on social isolation in Parkinson’s disease (PD), which is all the more critical now in the setting of social distancing due to COVID-19. The goal of this study was to survey individuals with PD to evaluate whether social isolation is associated with PD symptom severity and quality of life. Read the rest of the study in Nature

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Yoga for Parkinson’s in Pandemic Times

If you can breathe, you can do yoga

Christiana Lewis, yoga instructor for People with Parkinson’s

There are many benefits to Yoga for People with Parkinson’s (PwPs), whether you are a just starting or have been practicing for years. I started my yoga practice about 12 years ago, before my diagnosis with Parkinson’s Disease. I give much credit to my yoga practice for helping me to minimize my PD symptoms.

5 benefits from a yoga practice

According to my Movement Disorders Specialist, who is also a certified yoga instructor, there are 5 primary benefits to practicing yoga for PwPs. I am listing them here, along with my commentary on each of them.

cdn5.vectorstock.com/i/1000x1000/64/04/woman-in...
Downward Dog

1. Stretching – helps to combat the stiffness that many PwP’s feel, making movement easier and increases your flexibility. If you are stiff when you wake up, do some of the stretching poses before you even get out of bed. It definitely helps.

2. Balance – many poses in yoga are balance poses. You will stand on one foot for a tree pose, then the other. You learn what you have to do to maintain that posture, even if for a few seconds. Look around you if you are in a class and you will see that others without PD have trouble with balance. You are not alone. This is the most important thing you can do to help prevent falls later.

Chaturanga Dandasana - Wikiwand
Chaturanga Dandasana

3. Social – if you go to a class (when the gyms re-open), you will find that there is a social aspect to yoga as you get to know other regulars in your class. It gets you out of the house and combats isolation.

4. Mood/Apathy – it doesn’t matter how I feel when I start the class. By the end of the class I feel so much better, mentally and physically. Maybe it is a dopamine rush or endorphin rush. It doesn’t matter which one it is, it works to elevate your mood and keep you going. In addition, it is a mindfulness practice. There are often guided meditations, breathing exercises and of course, the final pose, Shavasana, which is so relaxing.

Vriksasana - Wikipedia
Tree Pose

5. Cardio – I like Vinyasa Flow classes because you are continuously moving. The long holds of poses in other types of yoga don’t work for me because my tremor acts up. With flow classes, the breath is very important, affecting your autonomic systems. In addition, there are definitely cardio benefits as your heart rate rises with the constant movement. Another benefit of the movement is that shifting from pose to pose, such as going from a Down Dog to Chaturanga to Up dog is great resistance training – as you flow through the moves you are shifting your weight from your legs to your arms and back. If you are doing yoga at home, don’t watch the same yoga class over and over again because it becomes rote. Close your eyes or change some of the poses to challenge your mind.

I have been fortunate that I have been able to keep going to regular yoga classes and can keep up most of the time. Shortly after my diagnosis with PD, I met with a woman who specializes in yoga therapy for Parkinson’s. After working with me, she said something I will never forget: “Stay in regular yoga classes as long as you can. You can always modify your practice if things get difficult.”

If you have been practicing yoga, you will find that there are so many classes to choose from on-line through Zoom, you don’t have to wait until the gym re-opens. However, if you are new to yoga, you may want to take a few private classes in your home or online with a yoga instructor so that you can learn what to do properly, with supervision. The last thing you want to do is to hurt yourself because you don’t know what to do. There are also yoga classes specifically for people with Parkinson’s. These classes often offer chair yoga for those who cannot stand or have balance issues.

Shavasana – Corpse Pose – School of Yoga
Shavasana – my favorite pose of all!

A few weeks ago, yogi Christiana Lewis led Twitchy Women through a yoga practice on Zoom. Here is the recording from that day. Watch it and learn even more about how you can incorporate yoga into your exercise routine for Parkinson’s Disease.

Namaste

Endgame Parkinson’s

Last week I received a mysterious message from Larry Gifford, host of the podcast “When Life Gives You Parkinson’s”. Would I like to join him, along with other luminaries in the Parkinson’s world plotting the ENDGAME for Parkinson’s. This global alliance of advocates have pledged to take united actions towards ending Parkinson’s and they need me to join them.

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Inspired by the recently published book, Ending Parkinson’s Disease: A Prescription for Action, a group of advocates have pledged to work with the authors of the book by creating PD Avengers.

He went on to say that I was identified as an advocate who is ready activate my personal super powers to aid in uniting 50 million voices to prove Parkinson’s matters and build a real urgency to end Parkinson’s. The group is targeting leaders in the PD space to join forces with them prior to going fully public around World Brain Day on July 22, 2020. At that time, we’ll begin more public recruiting efforts.

So Larry, you really know how to get people to join your mission. You had me at activating my personal super powers. Wow! Does that come with an iconic costume? I think Wonder Woman’s tiara would be nice, along with those cool wrist bracelets. Talk about having super powers.

Warnerbros.com

Last Monday, there was a Zoom meeting with a number of recruits waiting to be admitted into this “super power” group. We learned that the ultimate goal is to unite 50 million voices to prove Parkinson’s matters and build a real urgency to end Parkinson’s. We were an important part of making this happen, by reaching out to our networks and inviting People with Parkinson’s (PwP’s) and their families and friends who are impacted by Parkinson’s. After all, there are only about 10 million PwP’s now, but if each of us invites 4 other people, we will be a force to be reckoned with. We need our number of advocates we can build urgency for prevention and a cure, much as the AIDs community did in the 1980’s-1990’s.

So this is where all of you come in. Go to their Facebook Page PD Avengers and sign on to this very important mission. All of the information is there. I am giving you just their Vision and their Mission here:

  • We are inspired by and work in partnership with the authors of the book “Ending Parkinson’s Disease.”
  • OUR VISION (Longest Term Goal): Ending Parkinson’s.
  • OUR MISSION (3 to 5 Years Goal): Unite 50 million voices to prove Parkinson’s matters and to build a sense of real urgency to end Parkinson’s.

Join me and SIGN UP to bring your super power to #EndingPD #WBD2020 https://www.pdavengers.com/get-involved 

Together we CAN make a difference in the lives of those with PD today and in the future.

Gratitude during the Pandemic

Gratitude turns what we have into enough.

Anonymous

It seems like an oxymoron. How can we have gratitude while quarantined because of the Covid Pandemic? Our lives are disrupted in so many ways. What good can come of it?

I took a yoga class the other day with a yoga instructor who talked a lot about gratitude during our practice. Throughout the session, she reminded us to think of something we were grateful for. And to put a smile on our face. When you smile, you can’t help but feel better.

It turns out that once you start thinking about it, there are a lot of positive things that have happened to each of us during the past 4 months. For some people, it meant getting to those tasks that were saved for a rainy day. Others took classes on line that they did not have the time for previously. And then there are those who started baking bread and other goodies during this time. Suddenly we had an abundance of time to do all of those things at home that we wanted to do for so long.

After the yoga class, I went to my sketchbook journal and started writing. By then it wasn’t too hard to find gratitude for many things in my life.

July 8, Day 126 for Mr. Twitchy and me. We started the quarantine early because we were exposed March 1.

4 1/2 months we have lost Time that will never be returned. Has anything good come out of it?

1. Connecting with our grandchildren in Chicago more often, in a more meaningful way – reading to them, playing games with them. And the same for our grandchildren in Los Angeles.

2. Brought together over 160 women from at least 4 countries for Sunday Mornings with Twitchy Women since March 22. Everything has fallen into place so quickly and I have met so many impressive women in the process.

bluelahe - Bullet Journal uploaded by Karen Naomi

3. Learning to play golf – getting out with Mr. Twitchy 2 afternoons a week in the sunshine (getting that much needed Vitamin D)

Looking back in my journal, there were many more expressions of gratitude throughout the 4 1/2 months.

Just 2 weeks ago, I wrote about “a remarkable couple of days” after being nominated in 3 categories (now 5) for the WEGO Health awards and being named one of 9 for Healthline’s Best in Blog 2020, with only 3 being patient bloggers. Yet the entry before that was about the marches and riots, constant helicopters overhead and anarchy in Seattle. Even that entry managed to find gratitude for talking to friends on the phone & Zoom, lifting of some more Quarantine restrictions, etc.

Smiley — Stock Photo © aldorado #13975132

Now I understand why journaling is so important, especially if you have a chronic disease. Keeping a journal captures moments of your life and gives you insight into what has changed over time. It also allows you to see what has been good and what has not been so good, even on the same day. I don’t write every day. Sometimes a couple of weeks will go by, but I am still telling my story. It will always be there for me to go back to when I need it. I will be reminded of what to be grateful for, in spite of everything, and to smile.

If you concentrate on finding whatever is good in every situation, you will discover that your life will suddenly be filled with gratitude, a feeling that nurtures the soul.

Rabbi Harold Kushner