How To Get Through Days When You Can’t Fight Parkinson’s Anymore

Person
Illustration from Parkinsonsdisease.net

Originally published by Parkinsonsdisease.net By Sharon Krischer · November 19, 2020

We have all been there. After a bad night you give up and drag yourself out of bed. It’s 4:30am. Yes, 4:30! You are restless and you just have to get out of bed. You know you should exercise, but that is the last thing you feel like doing. You stay in your nighttime pajamas because you just don’t feel like getting dressed.

Read the rest at Parkinsonsdisease.net

Tennis Anyone?

I played tennis for the first time in almost a year this week. First, my regular game for the past 25 years temporarily fell apart when one woman left the group and another was on the disabled list for 2 months. By the time she was ready to return, we were on lockdown for COVID 19 and all of the tennis courts were closed.

Tennis ball and golf ball Wall Mural • Pixers® - We live to change

I started playing golf last spring with my husband at the golf club we belong to and now it is a running joke that I have played more golf there in the last 6 months since the golf course re-opened than I had in the previous 35 years we have been members. I have taken a few lessons, got new clubs to replace my Neanderthal clubs and get out on the course with Mr. Twitchy about once a week. I found that I usually fall apart after playing 6-7 holes. I would suddenly get tired and it would be harder to concentrate. I would forget how to swing the golf club and my shots went all over the place.

Running out of energy

Back to tennis this week. We had a tennis clinic with one of the pros at the club and then played doubles. I was surprised that my game was better than I thought it would be after such a long time. And then, after about 1 hour and 15 minutes, my legs suddenly turned to jelly and moving was getting harder and harder. The only thing I had in my bag was a small box of mints. I downed about 1/2 of them and the sugar helped me survive the last 15 minutes of the game. The tennis pro suggested that I keep power bars or something in my bag for times when my energy level drastically drops.

This energy drop is consistent with what I have noticed over the years. Because of Parkinson’s, I will suddenly become so tired that I cannot move, like I did playing tennis. This will happen at any time, not just with sports. We can be spending an evening with friends and Mr. Twitchy, who often sees it coming before I do, tells the other people we are with that I am “melting” and it is time to take me home.

This morning, we went to play 9 holes of golf, and sure enough, my game started to fall apart on about the 6th hole. Concentrating was becoming difficult and I could not hit the ball. Fortunately we were close to a spot on the golf course were I could get a snack. Within minutes I started playing better again.

Snacks are a good thing

The bottom line is that for me, I need to keep some kind of snacks nearby when I am playing tennis, golf or any activity that goes on for several hours. I have to be able to recognize when I start to fall apart and get something to eat before I start having real problems. When I was a teenager, my grandmother used to say that I would get really quiet when I needed to eat. Now, with Parkinson’s, I not only get quiet, but it becomes harder to move and to concentrate on anything. The energy drop is faster and much more dramatic. Hopefully, by recognizing this I can be much more pro-active so that I can keep my energy levels more even throughout the day.

It is an easy fix for an annoying problem. Too bad something this simple doesn’t work for our other PD symptoms.

Have you tried Poling?

Our mission is to help people realize that their full potential is not only achievable but also sustainable, by doing exactly what their body was designed to do – move.

Mandy Shintani and Diana Oliver 

(The following review/opinion is strictly my own. Urban Poling provided the walking poles and accessories to me at no charge and allowed me to keep the poles, after the review was completed. I was not compensated monetarily for this review. In no way, did receiving the poles at no charge, influence what I have written.)

Several months ago, I was approached by Urban Poling to see if I would like to try their poles. I had tried two different types of poles before. One I did not like at all. The other one worked well for me, but I really only used them when we were traveling. They were a big help when touring in cities with uneven cobblestone streets, climbing hills and keeping me from tripping over my own feet. I had never considered using them for Poling, or Nordic Walking as it is more commonly known.

My Activator Poles

I was vaguely aware of Poling as an exercise for People with Parkinson’s. I only knew that Becky Farley, PhD, founder of PWR!, uses them in her exercise programs for people with Parkinson’s.

Once Urban Poling contacted me, I was curious to give it a try. Before sending me the poles, they asked me questions about my exercise routine and any difficulties I was having. They determined that I should try the Activator Poles (they have several different types of poles for different uses). With the poles, they sent two different types of tips. Urban Trekking Tips are regular round tips for hiking. Urban Boot tips are recommended for fitness. They look like little rubber boots! (see above illustration)

Who is Urban Poling?

Founded by Mandy Shintani, BSc (OT), MA and Diana Oliver. Urban Poling is an awarding winning Canadian company that that is 100% women-owned and operated. It was was one of the first companies to bring Urban Poling to Canada. They have a training program for physical therapists and personal trainers for all types of rehab and for different diseases and conditions. There is even a course for people with Parkinson’s. Click here for a short video from the website showing improvement in gait using the poles.

Live Activator Course for Parkinson’s

Getting started

Once my poles arrived I was instructed to go to their website to learn how to use the poles. I had not seen this with other companies. There are a number of very useful videos to teach you what to do with your poles.

First, I learned how to adjust the poles to the proper height. It was so much easier than the other poles I had tried, which had flip locks that would sometimes slip while I was walking. The Activator Poles have a button locking system that is so easy to use. The poles are clearly marked R and L and the grips are very comfortable. Now I was ready to get moving.

I watched another video and tried it out. It took a while for me to get my hands and feet coordinated so that I did not have to think about which pole went with which foot. I found that once I learned to use the poles correctly, I was moving more quickly, with purpose, and more upright, thanks to the poles being adjusted to the right height for me. When I go out on my walks using the poles, I am using my legs AND my arms, so I am getting a much better workout than I would get just going for a walk at a leisurely pace. My only complaint is that there are no straps attached to the grips to go over your wrists. Knowing me, I would put them down when I stopped somewhere and forget to pick them up again when I leave.

If you are interested in Poling as exercise for Parkinson’s Disease, check out their website. In Canada, the poles are widely available and may be covered by your insurance. In other countries, you will have to order them directly through the company or through Amazon. Note: the only poles I could find on Amazon are the Activator 2 poles, which are slightly different than the ones I have.

For another perspective on poling, my friend and blogging colleague, Karl Robb just posted his review on Urban Poling’s walking poles. 

Have you joined PD Avengers yet?

PD Avengers

We are a global alliance of people with Parkinson’s, our partners and friends, standing together demanding change in how the disease is seen and treated.

 We add urgency to research, wellness and advocacy by uniting people and organizations to the cause of ending Parkinson’s.  Join the movement today at https://www.pdavengers.com/become-a-pd-avenger.

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.

Looking for Inspiration?

Get Out and Go

Linda K Olson

Last year, the opening session of the World Parkinson Congress featured a speaker who literally took a terrible situation and turned it into an incredibly positive experience. The woman who turned everything upside down for us was Dr. Linda K. Olson. With a smile on her face, she proceeded to tell the captivated audience how she survived a gruesome accident involving the van she was traveling in and a train in Germany 41 years ago.

If you can do it, I can do it.

Linda and her husband were just out of medical school when they traveled to Germany on vacation. Their van was hit by a train, causing the van to roll over, shattering their lives and Linda’s body. Her injur ies were so severe that the doctors needed to amputate both legs above the knees and her right arm. In addition, she had fractures in her spine. When she finally saw her husband, who had a broken ankle, she said to him that she would understand if he left. He responded “I didn’t marry your arms or your legs. If you can do it, I can do it.”

Life as a triple amputee cannot be easy. But Linda was determined to do everything. While in rehab, she prioritized what she wanted to do in life. Highest on her list: being able to do the activities of daily living, driving , use artificial legs to walk and go back to work.

Work was the easiest. Her career as a radiologist took off because it only required her to sit and read scans on the computer, something that she could do easily. She knew she could go back to that.

In the years to come she did learn to walk with prostheses, had two children and traveled the world with her family, including being carried in a custom made backpack on her husband Dave’s back when on camping trips. As she said, it didn’t take long to figure out that fake legs were useless in the wilderness. She was pulled on dog-sleds, by horses and even in a wheelbarrow. Canoeing and Kayaking were things she could actually participate in. But specially made skis attached to fake legs did not work at all.

Five years ago, her life took another u-turn. She started having anxiety attacks, restlessness, difficulty writing. Within a few weeks, she was diagnosed with Parkinson’s Disease. Exercise was difficult, but she worked with a trainer and eventually learned to do things like one-armed push-ups, cardio exercises and more. She attended the WPC in Portland because she wanted to learn about living with PD. She ended up being on a panel discussion for the newly diagnosed, which led to her keynote address at the WPC Opening in Kyoto.

Accept, Adapt, Innovate

What got her through all of this was her attitude. And of course, her infectious smile. Her key message is to “Accept, Adapt and Innovate.” If you can get enough people to help you, you have enough determination and are willing to do things a little differently, you can get there. The hardest thing we have to do is to accept that our condition that it is real, then you can adapt and find new ways to do things- to innovate.

She brought us on her journey with her, not for pity, but to celebrate the good things in life, even as a person with Parkinson’s who just happens to be a triple amputee.

Because I cannot do justice to her story, I encourage you to watch the video recording here.

And you can now read her study in her newly published book Gone, A Memoir of Love, Body, and Taking Back my Life

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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