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.
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.
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.
…and banana bread, chocolate chip cookies and sour dough bread.
It seems that the Coronavirus has given everyone a green thumb this year. Quarantined at home, we all channeled our inner gardeners and planted some vegetables and herbs in our back yards, on our patios, balconies, and in pots anywhere there is some sun. Many of us have also turned to our kitchens thinking we are master chefs and bakers, the end result being Covid-15. What is Covid-15 you ask? It is the 15 pounds people have gained while being quarantined for 3-4 months with nothing to do but garden, bake and eat what they have created.
Here in Southern California, we typically plant veggies in March, as our rainy season is ending. I have had varying success with my vegetable gardens, but this year is different. We planted early, and our rainy season was late, sprinkling our newly planted veggies through the end of April. They thrived and we now have an abundance of tomatoes and cucumbers this year. Last year, every one one of my tomatoes, except the cherry tomatoes, was eaten by birds or other animals.
What made the difference this time? A friend in Tucson posted several months ago that she hung CD’s from her pomegranate trees to keep the birds away and it worked. Mr. Twitchy had just cleaned out his CD collection the first two weeks of quarantine so I rescued the discards and put hung them on the tomato plants. Beatles, Beach Boys, you name the band, they are now protecting my tomatoes. And it is working!
The result is an abundance of tomatoes, large and small and endless Persian cucumbers. Now the big question is – what to do with all of this????? I have made fresh uncooked tomato sauce, tomato soup, pasta salad with grilled vegetable ratatouille and more. I am in the kitchen hours at a time trying to make something different with the tomatoes. I think I have used every cookbook, appliance and pot that I own in the last few weeks. Some days my kitchen looks like it had been bombed with tomatoes.
And then there are the cucumbers. I ordered 2 cucumber plants. When I picked them up I saw that the 2 pots had a total of 5 plants. Do you have any idea how many families can be fed by 5 cucumber vines? The raised bed where I planted them looks like Audrey, the man-eating plant from Little Shop of Horrors. They are out of control.
When I asked my daughter if she wanted any, she suggested that I make quick refrigerator pickles with them. She had the same abundance problem and could not take any of mine. So I looked up quick refrigerator pickles and now I am in the pickle business.
Seriously, the pickles are a big hit. And nothing beats a fresh picked tomato in a summer salad. Have a wonderful 4th of July.
WEGO Health Awards
Last year, a surprise nomination led to Twitchy Woman being a finalist for WEGO’s Best in Blog award. Nominations and endorsements are now open for the 2020 WEGO Health Awards. I have been nominated for 3! If you agree and would like to support me please go to this link and endorse/nominate me. Thank you for all of your support of my blog over the last 6 years. I hope we will continue together on this journey with Parkinson’s for many more years to come.
Living with Covid-19 quarantines has challenged our daily routines, and with that, our individual and collective health. And sanity. One of the goals of beginning Sunday Mornings with Twitchy Women three months ago was to help us find ways, frequently little ways, to better meet the challenges of living with Parkinson’s disease. Thanks to our presenters we have been able to do just that. Each of them has shown us that we are resiliant and can adapt to the challenges that confront us. Almost all of these tips can be useful for everyone.
Find new ways to exercise. We all know the importance of daily exercise to fight the disease, and we got to experience several different types of exercise. Many of our favorite exercise classes, such as Jen Parkinson Iljin’s Neuroboxing and Lisa and SteF’s PD-Connect are now available online, either through live Zoom classes or Youtube videos. Not being able to go to the gym is not an excuse to sit around and do nothing. Two useful tips: you don’t have hand weights? Use filled water bottles instead. No yoga strap? Use the sash from your bathrobe.
Worried about going back to the gym when it reopens? The Youtube exercise/meditation/mindfullnes videos you have been watching will still be there, as will the recorded exercise classes on many different websites. There is a lot to choose from and this option will not go away soon.
Maximize your Levadopa. Lemon juice helps your body absorb Levadopa better. According to Dr. Laurie K. Mischley, studies have shown that people with PD do not make as much stomach acid as needed for proper digestion and absorption of nutrition from food and meds. Adding either 500 ml powdered Vitamin C or 30 ml Lemon Juice will help make more Levodopa bio-available, making it 25-35% more absorption and a smoother delivery of the Levodopa.
Work on your Omega 3s. Can’t take Fish Oil? Look at Algae oil — not Flax oil — as a substitute. Better yet, get your blood levels of Omega 3 Fatty Acids checked. If normal, you won’t need to take either. As Dr. Mischley pointed out, many people who are vegetarians have normal levels without taking Fish Oil.
New ways to mindfulness. Have you tried mindfullness and meditation with no luck? According to Kat Hill, who brought us Sketchbook Journaling, sketching what you see is a mindfullness practice, which reduces the stress response. Gratitude Journaling can also form new neural pathways. And Life Coach Kristie Scott told us about Evolution Cards. These give you a “focusing word” with an insightful lesson and a challenge to inspire positive action followed by words of encouragement. The point is to use your chosen word to start a new evolutionary journey every day.
Taiko Drumming! This is a great way for a person with PD to exercise. It includes large amplitude movements, full extensions, trunk rotation, variation of volume and tempo, sequencing, memory and cognition and vocalizations. Special thanks to Sydney Shiroyama and Naomi Estolas for this fun presentation.
Know where to go for PD resources. Kristie Scott also gave us a comprehensive list of resources for people with Parkinson’s.
Be silly; have fun. According to (self-described) “Parkinson’s Diva,” Dr. Maria de Leon, do just about anything that will put a smile on your face; a Tiara and Red High Heel shoes will make you feel a lot better, even if you can’t walk in those shoes!
Sunday Mornings with Twitchy Women are webinars on Zoom for Women with Parkinson’s Disease, held every other Sunday morning at 10 am Pacific Time. To maintain privacy for this group, we ask that care-partners and family members not attend unless an event states that registration is open to all. If you have any questions, please contact firstname.lastname@example.org.
Next up:Sunday, June 28 Living well with PD in Covid-19 era
Movement Disorders Specialist Indu Subramanian, MD, UCLA and the VA, (my wonderful doctor and PMD Alliance superstar!) will talk about living well with PD in the Covid-19 era including the importance of social connections, mindfulness and yoga to alleviate some of the stress we are all feeling during this unsettling time. Watch her recent talk on PMD Alliance with Dr. Ray Chaudhuri about pain and PD. Register here for this program.
To see what else is scheduled, click on Sunday Mornings with Twitchy Women at the top of this page.
This is excerpted from a talk given to the ADPA Iowa Chapter on June 12, 2020.
So after a good start in 2020, our lives changed literally overnight when The Corona Virus – or Covid-19, reared its ugly head in the US. In the middle of March, the country shut down, and we were left alone, isolated, rudderless. The gyms we went to, the physical therapists, stores, doctors offices, closed temporarily. We were quarantined to our homes for at least two weeks. No restaurants, no movies, no sports, no NOTHING!
As the weeks dragged on, 2 weeks became 4 weeks, then 2 months. we lost track of time. Our schedules were gone. I would wake up having no idea what day it was. After all, I did not need to go anywhere. We could not get together with our friends, even our new Parkinson’s friends, who we came to rely of for support. We started to notice our symptoms were getting worse and our meds were not as effective. Why?
One of the worst causes of stress for a Person with Parkinson’s is isolation
As you probably know, stress can greatly cause our PD symptoms to worsen. One of the worst causes of stress for a person with is isolation. When you go to your boxing, dance, tai chi, yoga for Parkinson’s classes, you develop a support system. These are the people who know how you feel and who you can talk to about your symptoms. They get you. When that is taken away from you, you lose that sense of belonging. You become isolated, which increases your stress levels. It can be a vicious cycle. According to Dr. Laurie Mischley people who feel isolated tend to have the worst outcomes for PD.
And then something happened. In April, classes started coming back to us through the magic of Zoom. Lectures, seminars, conferences flourished on the net. You could fill your days with all kinds of activities. Wow! I signed up for a course from Yale, through Coursera, for free. I signed up for Laurie Mischleys Parkinsons’ School. Soon I was on my computer for hours every day, taking yoga and boxing, cooking classes, watching educational videos. On and on. Then the excitement wore off, I stopped checking in on my classes. I was getting tired of being on the computer for hours on end. I was exhausted – mentally and physically. I had finished all of my rainy day projects. I was home with nothing to do again. Still
I started feeling isolated once more. I was home with Mr. Twitchy and we are doing ok. But it’s not the same as getting out. And we found that doing something we were not supposed to added to the experience of getting out.
To fight the feeling of isolation we started having impromptu illegal dinners in our backyards with small groups of friends. We were sure that our children, who did not approve of us breaking quarantine, were going to turn us in to the police. Yeah, our kids now wanted to be our parents, telling us what we could and could not do, UGH. Another thing I did was to start CALLING friends, on the telephone. So 1990’s. And it helped a lot. We are social beings, we need the human touch. Texting just doesn’t do it for those of us over a certain age.
Other things you can do:
Play games on line with friends
Read to grandchildren on line. Play hide and seek with them using iPads
Video chat with friends over drinks
Get out of the house and go for a walk.
Even going for a walk has been tough though the last few weeks. As if the virus was not enough, the murder of George Floyd and the resulting protests have put many of us over the edge. It is finally getting better, but we are shelled shocked. So many of us have given up the quarantine altogether and others have retreated even further. We don’t know how to cope with this and the stress keeps getting worse. And so do our symptoms.
Now, after almost 3 months of some level of quarantine, the restrictions are starting to lift. Hopefully the protests will be gone soon, too. Are you ready to go back to life as it was before? Will you be comfortable sitting in a restaurant? At a crowded movie theater? Will it ever be the same again? What we do know is that it is going to be harder for some more than others. It’s ok. We are all different.
Canada’s Double Bubble method
The concept is very simple. Rather than asking households to remain isolated, each household can choose one other household with which to interact. These pairs have to be exclusive, otherwise the experiment just doesn’t work. The idea is that households of friends or relatives can pair up, experience greater social interaction, and ease some of the tension the pandemic has brought out in all of us.
As long as the members of the households are strict about who they interact with, and only socialize with others in their own home or their “double bubble” partner home, the risk of a fast-moving coronavirus outbreak remains quite small. That is basically what we did with those impromptu dinners with the same people almost every time.
The strategy was pioneered in New Zealand, which now says it has NO active cases of Covid19, and has been tested in a number of European countries as well. It seems to work, and it’s a good strategy for countries that wish to roll back restrictions but don’t want a second wave of new COVID-19 cases to overwhelm the healthcare systems.
How can you, as a person with PD, can manage re-entry into a changed world?
How do you feel? Are you eager to get back to normal? Are you afraid of getting sick? Somewhere in between? Are you immune compromised? Only you can determine what will be comfortable for you.
Let’s look at two different scenarios. These are the extremes, so you may fit somewhere in between.
Fearful, and/or Immune compromised
Talk to your Doctor or Therapist about how to proceed
Continue with online classes and support groups when available
Eventually, go to a live class, if uncomfortable, go back to online classes until you are ready to try again
If you are feeling isolated – meet one friend for coffee – if sitting outside at your local Starbucks is scary – sit in your backyard and keep your distance from each other
Get outside, Go for a walk or bike ride. Keep your distance from people you don’t know
Get checked for the virus periodically if feeling vulnerable
Do NOT close yourself off from the rest of the world and become socially isolated.
Ready to jump in
Go for it! You still need to maintain social distancing, wear a mask and wash your hands!
Go shopping, go to the gym
Go to a restaurant
See a movie at a theater
if you feel that you are overwhelmed, slow down. Remember to take care of your health first.
And most importantly, make sure to be tested regularly for the virus. If you are fearful, just knowing that you are negative will help a lot. And if you test positive, even without symptoms, go back to quarantine. If you feel sick, contact your doctor. This is not just the flu. You have to be treated.
We don’t know what the future is going to look like. For now, will masks be the latest fashion statement? Will we ever be comfortable again hugging and kissing our friends hello and goodbye? Shaking hands with strangers. Will there be spikes of Covid-19, especially after all of the protests and rioting that has been going on? Probably. Will you have to be quarantined again? Maybe, maybe not. But the good news is that you know what to do if it happens. Research into vaccines and cures are moving at warp speed, and the hope is that we will all be vaccinated and this threat will end. I just saw a headline that Israel expects to be able to make a billion doses of an effective vaccine for Covid-19 by next summer. But that is a year away. So just stay informed.
One of the first things that I noticed after being “sheltered at home” was that not having a daily schedule disrupted my exercise routine. As a person with Parkinson’s, that had a greater effect on how I felt than anything else. Some of my symptoms got worse. I wasn’t sleeping well and within a few weeks, the days started blending together. Some days I woke up and literally did not know what day it was.
Eventually I was exercising more than before
As the weeks went on, and through the magic of Zoom, my boxing for Parkinson’s class and my yoga classes were meeting in the virtual world,. Eventually I was exercising more than I had been and my endurance increased.
But, though it did help, Zoom is not a complete substitute personal interaction. I miss being with other people, going to the gym, dinners out and going to movies and theater, my manicures, haircuts, shopping, and all of the things that I do with my friends and family. Classes and meetings on Zoom are great, but it is not the same as being together.
We have been reading to our grandchildren through video chatting
There are a few really good things that have happened because of Covid-19. We have been reading to our grandchildren through video chatting and have even played games with them. A quick on line search will show you many free resources such as the one shown here. We may not be able to hug them, but we can have some special times with our grandchildren. We have also had family video chats where our grandchildren in Los Angeles and Chicago have been able to see and talk to each other. These activities help reduce the anxiety of isolation, of being cooped up at home.
Younger women (and men) who may be working remotely from home now, and not just those with Parkinson’s, now have the additional burden of balancing work and taking care of their family full-time. It is a lot to bear. When working at home, it is difficult to do their job, while also making sure their children are doing their schoolwork, or are otherwise occupied and cared for. It can be overwhelming. There is precious little time to take care of themselves, increasing stress levels that affect how they feel each day.
A big thing that I and others find missing is the ability to reach out to other women with PD. With the stay-at-home isolation, we have lost our personal connection to others with PD. It has been shown that women, more than men, really need the support of their PD peer group. We go to support groups to make connections with other women. The support for one another in our community is tremendous.
Sunday Mornings with Twitchy Women
Here, too, while we can’t get together physically, we can find find partial substitutes in the virtual world.. In that spirit, we took the non-traditional local support group that I had been running and made it available women with Parkinson’s literally everywhere; in March we started Sunday Mornings with Twitchy Women to reach out to women with Parkisons around the world. We meet every other Sunday morning at 10:00 Pacific Time for about an hour, with a different speaker/topic each session. The feedback has been very positive. It is helping women fill a need to talk to others with PD AND giving them a respite from some of the stress brought on by the Pandemic. It’s not the same as getting together physically, but it goes a long way towards making us feel better.