Originally published by Parkinsonsdisease.net By Sharon Krischer · June 19, 2020
Put yourself at the top of your to-do list every single day and the rest will fall into place. -Unknown
I met with my movement disorders specialist recently, and she asked me if I thought that we, people with Parkinson’s (PwPs), are spending too much time on self-care at the expense of everything else. It is a valid question that I admit I have also thought about. Many PwPs will say that they are not defined by our Parkinson’s disease (PD). However, these same people spend an awful lot of time just taking care of themselves to help manage their disease. And I am one of them. I often say that since my PD diagnosis, I spend more time taking care of myself than anything else. And I often feel worn out.
This Sunday, June 28 at 10:00 am Pacific Time, Movement Disorders Specialist, Indu Subramanian, MD, will be joining us to talk about Living well with PD in 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. Click here to see her recent talk on PMD Alliance with Dr. Ray Chaudhuri
These programs are for Women with Parkinson’s Disease. 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 email@example.com.
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.
I may be a Parkie, but I don’t see the future darkly
For the last 2 months, I have been participating in a writing group run by StoPD. There are about 10 people with Parkinson’s in the group which is facilitated by a professor from NYU, along with the founder of StoPD. The goal for the group is to eventually create a script for a play about living with PD. Each week we had a different assignment, from Haiku, writing a scene for a play, to writing about how we want to be remembered (it started out as an obituary, but we all objected to that!). The last assignment was to write “I’m Not Done Yet” in whatever form of prose that we wanted to use. I really liked what Robert Nadel wrote, so I asked him to contribute it for this week’s blog post. Enjoy.
By Robert Nadel, June 4, 2020
My future is bright
I can see the morning Light
I may be a Parkie, but I don’t see the future darkly
It has opened me up to helping others and share what I have learned over the past years since I was diagnosed. I have participated in clinical trials which may have some short term and long-term benefits to me and for those who have been newly diagnosed.
I have extensively researched the disease and know with confidence, that while right now there is no cure, I can continue living a modified yet active lifestyle. And perhaps in my lifetime there will be a cure or way of reducing the symptoms.
I for one will continue to challenge myself both physically and mentally
While the pandemic has thrown new barriers in our path, we have to look forward to a new way of doing things, I for one will continue to challenge myself both physically and mentally. for not doing so may lead to consequences of losing some of the ground I have gained on this uphill battle
I just got off the phone with a high school friend whom I haven’t seen in perhaps 40 or more years and not spoken to in almost as long.(will call him S) What I found most interesting, is what I have taken away from our lengthy conversation, We have traveled very different paths in our lifetimes, Both of us have had more than one marriage, and have had many experiences along this train ride called life.
Where our paths have diverged is S has for the past 46 years had the same job, and not to say that it is a bad thing, S has been quite successful. Whereas my train has had many pauses along the way with several side trips and starts and stops.
“ Exercise? What do you mean exercise?”
But he did say something that sparked a response in me, He said he is forgetting words, So I asked S what are you doing for exercise? “ Exercise? What do you mean exercise?”
I than went onto explain that Parkinsonism may tell your body and mind to chill out, just relax and let things go, the disease is very nefarious and I can truly say the lesson that PD has taught me is the consequences of not constantly challenging mind and body. In some distorted way I can say Parkinson’s has had a positive effect on opening me up to seek out new ways to stimulate the mind and body.
So S thinking about what he has been doing for the past 46 years, is on cruise control with rote learning and repetitive actions. Not putting anything new into the hopper of challenge
I see myself helping others to be happier and more secure with themselves and consequently satisfying ME!
Relating another phone call, I received a few days ago was from one of my former MDS doctors, who asked if she could pick my brain, as she felt I am always seeking out new challenges and answers to problems related to PD.
Her organization is looking to expand online offerings and we spoke about the various groups of people to whom it would be targeted and the stumbling blocks to make it work.
I see my path working with others will help me
Rereading what I have written, I believe I have said in as many words “What is Next” through the many twists and turns I have related, I see my path working with others will help me.
Originally published by Parkinsonsdisease.net on May 26, 2020
In a conversation with Lauren Simmons of PD Buzz in Orange County, California, we discovered that we were both audiologists in our past lives.
We have both gone on to do other things, but we are still audiologists at heart. We talked about how much more difficult communication is when wearing a mask or scarf over our mouths, which can present a real challenge for people with Parkinson’s.