Eight little things you can do to improve your life with Parkinson’s

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.

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  • 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.
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  • 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.
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  • 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.
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  • 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.
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  • 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 twitchywoman18@gmail.com.

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.

Have a great week!

Stay Safe, Stay Well and please Stay Sane!

WPC Continued….Beware, this may “make you dopey”

Thursday afternoon I went to a very informative session on “Speech and Swallowing”.  There are several points that are worth sharing.  First of all, voluntary coughing is a good thing as opposed to a reflexive cough that occurs when you swallow wrong.  If you are having problems with swallowing , you should see a Speech Pathologist who specializes in PD for an evaluation.  There are many non-medical treatments that are available such as postural changes, diet modification and LSVT/LOUD training.  LSVT/LOUD trains you to speak louder and also strengthens the muscles in your throat that are involved in the swallowing reflex.  There are progams available on-line, but the speakers all recommended working with a Speech Pathologist and using the programs for practice.  The other interesting fact is that the Basal Ganglia in your brain gives the feedback to your speech.  In PD it does not function well and the perception is that your voice is louder than it actually is.  So when others complain that they cannot hear you, think about going for a speech eval.  Finally, sing!  Singing can have a positive effect on your speech.

We all know now that exercise is an essential part of any therapy for PD.  “Exercise as Treatment” reinforced the need for exercise of any kind.  Your brain becomes engaged when you exercise.  It switches from automatic functioning to more cognitive, which in turn can create resiliency/plasticity in the brain.  In other words, your brain is adapting and reconnecting, forming new pathways.  The more complex your exercise, the more effective it is.  A combination of more than one type of exercise is optimal.  If you are new to exercise, you need to work with someone who understands PD and can adapt an exercise program that works for you.  The biggest issue with studies for exercise and PD is that most studies only use people with mild or moderate disease.  People with more advanced PD need to be included to see if they can also benefit from exercise.

Finally, the standing room only session on Complementary Care (CAM) did not disappoint.  CAM care is not embraced by many doctors, but is very popular with patients.  And the research is beginning to prove that it does help in many ways.  Although he had no samples for us to try, Dr. Benzi Kluger spoke about the benefits of Cannibis and the different forms that are available.  Some of his slides are below for your enjoyment.  Dr. Indu Subramanian, who happens to be my MDS, talked about Yoga and its benefits for PD, challenging the doctors in the room to encourage their patients to give it a try.   Dr. Laurie Mischley spoke about her studies using Glutathione for PD, something which is definitely not on the radar of many doctors. The results of the few studies are inconclusive.  Some show benefit, others don’t.  Finally, after some technical difficulties, Matt Ford entertained us with music that we can all relate to, using it as therapy.  He began with “Staying Alive” from Saturday Night Fever and then showed a video of a man who could barely move until he put on some music.  You would never know that he had PD.  At the end, everyone was singing and dancing in the aisles.  He left us wanting more!!!

 

Parkinson’s Awareness Month and More

There is much to share with you this week.

April is Parkinson’s Awareness Month.  Join the Parkinson’s Disease Foundation Team During Parkinson’s Awareness Month    Friday, April 1- Saturday, April 30 (Online & around the US)

What will you do to help raise awareness this April, Parkinson’s Awareness Month? Join the team to #EndParkinsons with PDF and help make a difference in the PD community!

Click Here to Learn More

Last month, my Movement Disorders doctor, Indu Subramanian, asked me to write about my experiences with yoga and PD for the Brian Grant Foundation’s Power Through Project.  She worked with a yoga instructor to produce videos for the website about the benefits of yoga for People with Parkinson’s.  My story and Dr. Subramanian’s videos are now up on the  Power Through Project website.

Sunday, we had another great meeting for Women living with PD in Los Angeles.  Invertigo Dance Theater’s Sofia Klass and Linda Berghoff (also a PWP) teach Dancing Through Parkinson’s in various locations around LA.  They led us through dance sequences IMG_0824designed specifically for people with Parkinson’s Disease.  Special thanks to the The Wallis Annenberg Center for the Performing Arts in Beverly Hills for hosting us.  I had the opportunity to interview 2 more women about their experiences with Parkinson’s.  This has been a great way to share our journeys with other women and to help all of us better understand this disease that is changing our lives.  I will post their interviews later this week.

Have a great week.

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