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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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Did your doctor prescribe exercise?

Exercise needs to move from a recommendation to a prescription for people with Parkinson’s.”

Dr. Jay Alberts, Department of Biomedical Engineering, Cleveland Clinic

Today, Jay Alberts, PhD, was my guest on Sunday Mornings with Twitchy Women. If you are not yet familiar with his work, you should be if you are a Person with Parkinson’s.

Jay Alberts

At the Cleveland Clinic in Ohio, Vice Chair of Innovations within the Neurological Institute, Dr. Alberts holds the “Edward F. and Barbara A. Bell Family Endowed Chair,” and is a staff member within the Department of Biomedical Engineering. His research is focused on understanding the effects of neurological disease or injury on motor and cognitive function and developing disease-specific interventions to improve motor and cognitive performance. 

In 2003, on a group ride across Iowa for the annual RAGBRAI bicycle race from the Missouri River to the Mississippi River, Alberts noticed that the woman who was riding with him on a tandem bide, start showing improvement in some of her PD symptoms. That one little detail led to research on the effects of forced-exercise’s impacts on motor functioning.

The research

Since 2012, Alberts has been conducting clinical trials to compare the effects of forced exercise cycling on motor and non-motor performance compared to voluntary rate cycling and a non-exercise control group. In one trial, the results showed that an eight-week, high-intensity aerobic exercise program markedly enhances overall motor function, certain aspects of walking, and cognitive function in people with Parkinson’s.

Dr. Alberts and his colleague Dr. Anson Rosenfeldt looked at the effectiveness of Pedaling For Parkinson’s—an existing, low-cost community cycling class—and how participation in the class may slow Parkinson’s progression. Moving from the lab to “real life” is a big step toward increasing access to classes so even more people can live well with Parkinson’s.

With additional grants from the National Institutes of Health (NIH) Alberts and his colleagues have studied the impact of exercise on Parkinson’s building on data recorded in previous studies. The most recent grant from the NIH indicates that cycling may be an ideal mode of exercise for people with Parkinson’s because regardless of disease severity, individuals can achieve and maintain a moderate to high intensity of exercise. *

In light of this, Alberts recommends daily exercise, with at least 3 days a week of 30 minutes intense exercise. If you are riding a stationary bicycle, he recommends getting your cadence up to 75-80 and gradually increase the resistance to get your heart rate up to 60-80% of your target heart rate.

Currently, Alberts is doing research on PwP’s using a Peloton Bike. If you are interested in participating, contact Liz at the Cleveland Clinic. Previous experience with a Peloton bike is not necessary.

Current study using Peloton Bikes
Peleton Study

With all of this evidence, you would think that exercise would be recommended from the day a person receives their diagnosis. It should be a no brainer, right? Unfortunately, many doctors do not even discuss exercise with their patients. Many of them may not even be aware of this research.

We need your help

What can you do to make sure that newly diagnosed PwP’s, and us veteran PwP’s too, know that exercise is essential?

  • Talk to your doctor, physical therapist and other care providers about Exercise as Medicine.
  • If you go to a Movement Disorders Clinic, speak to the head of the clinic about the importance of Exercise as Medicine and ask them to share it with everyone in the clinic. Better yet, ask if you can talk to the group about how exercise helps you every day to live better with PD.
  • Read Jay Albert’s articles on the Davis Phinney Foundation website.
  • Check out other Parkinson’s organizations for their recommendations and literature on exercise for PD.**
  • Take copies of these articles and brochures from the organizations about exercise for PD to your doctor, clinic, etc. and ask them to read them and distribute them to their patients. Especially the newly diagnosed.
  • Find out what your medical insurance covers for exercise. If they do not provide any coverage, send them the same information.
  • Finally, offer to talk to newly diagnosed patients about how exercise has helped you live better with Parkinson’s.

No one knows better than those of us living with PD about the benefits of exercise on our quality of life. So please spread the word.

Do you ride a Peloton? Join our FaceBook group Parkies with Pelotons

*A Timeline of Jay Alberts Parkinson’s Research, Davis Phinney Foundation

**Check out these websites for more information on Exercise and PD.

Parkinson’s Foundation

Michael J Fox Foundation

Davis Phinney Foundation

Brian Grant Foundation

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

Going on a Road Trip with California Fires and Covid-19

Several weeks ago, Mr. Twitchy and I decided that we really needed to get out of Los Angeles for a few days. A change of scenery would do us both good. We scheduled a trip to Lake Tahoe for August, but had to postpone it because of the fires in Northern California. So we left yesterday, September 7, without checking with the hotel about the fires and air quality. We just needed to get out of the 100 degree heat and LA.

A long line at the bakery

We loaded up the car and started on our 7 1/2 hour road trip north. Fortunately there was little northbound traffic, although there were many more cars driving south back to LA after a holiday weekend. We drove straight to Bishop, which is a small city at the foot of the Sierra Mountains and the gateway to the Mammoth Ski Area where we used to take our kids every year. We stopped to get lunch at a well known Dutch bakery. It seemed like everyone else on the road had the same idea. But the long line to get in to the bakery moved quickly, we found pre-made sandwiches and were back on the road within 1/2 hour.

The hazy view from the road

Then we started to smell the smoke. And our eyes were burning. We could not see the fires, but the air was hazy everywhere from the smoke. We began to think that maybe we should have stayed home.

We finally reached our hotel in Incline Village (at the north end of Lake Tahoe) and then discovered the real effect of Covid-19 on travel. We were greeted at the entrance of a well known hotel by a bellman and were informed that there was no valet parking. Not a big deal for us. When we checked in we were told that there was no maid service unless we called for it. Reservations were necessary for breakfast, lunch and dinner at the main restaurant. You can eat indoors in Nevada, but the seating is reduced inside and outside. The pool is open, jacuzzis not. The spa is not open, but the casino is. We were in Nevada after all. And the gym was open. Yay!!! And they even have a lot of Peloton bikes in the gym. A small victory for us. Perhaps the thing that made the least sense is that the restaurant in the hotel that is usually open for breakfast and lunch is closed, but you could bring food in from the small grocery/deli in the hotel or from restaurants outside the hotel and eat there.

Mr. Twitchy at the beach at our hotel

Back to the fires. We wanted to rent bikes today, but the bike shop recommended waiting a day or two for better air quality. The temperature dropped dramatically from yesterday and it was quite windy, but air quality is still not great. At least the pool was open and there were people swimming, even though it was 55 outside. There was no one at the beach as you can see in the photo.

Tomorrow will be warmer and we are hoping that the rest of the week will be better. We got a lot of rest today while catching up on reading, watching the US Open Tennis tournament and making S’mores at a hotel firepit. We are looking forward to renting bikes tomorrow and getting on the bike trails along the lake.

Mr. Twitchy toasting marshmallows for S’mores

The bottom line is that traveling under the rules dictated by the Covid-19 Pandemic is not the same. Do not expect a luxury experience anywhere. The hotels are very limited in providing the services that you would normally expect. Many of the restaurants have limited seating and don’t expect much entertainment beyond watching movies in your room. Hopefully things will start to improve soon so that we can enjoy traveling once again.