Maybe you have a firm grasp on what being an Advocate is all about? This episode explores different ways people with disabilities, their allies, and their caregivers practice advocacy. Whether you’re searching for the best healthcare options, leading a support group, mentoring newbies, meeting with legislators, or using social media to get a message out — it’s all about advocacy.

Nancy and her friends meet Senator Cory Booker at a national Parkinson’s Disease Advocacy Conference

Nancy Husari, a retired college instructor with Parkinson’s disease, felt empowered by her advocacy experiences at California’s state capitol and in Washington, DC. Brook McCall, Grassroots Advocacy Manager for the United Spinal Association talks about her work. Marla Murasko, a Down Syndrome Mom Advocate, shares her advice and experience using social media platforms for advocacy. Nina G., comedian, professional speaker, storyteller, writer and educator, discusses how to be a disability ally.

 

 

Oakland-based comic, Nina G, gets her Edith Ann sock puppet signed by Lily Tomlin

To kick off Disability Awareness Month, our guest is Nina G – the first female stuttering comedian and dyslexic writer. You’ll get a taste of her stand up material as well as learn about her path to comedy and the educational and advocacy work she’s been engaged in for years.

For additional information about Nina’s comedy CD with the Comedians for Disabilities Act, visit this webpage.

 

Welcome to the 5th month of exploring self-care practices. In my first post I laid the groundwork for this challenge and named six categories of self-care. I’m sure we can think of additional areas I’ve missed. Feel free to post a comment with your suggestions below.

Social Support is this month’s focus. Please join us in the Facebook group to dig deeper into what Social Support is, how it can impact your physical and emotional health, and how to get it if you currently feel a void.

Social support is your network. This can be any combination of family and/or friends. Some friends may feel like family. Perhaps you’re like me and come from a small family? I never had siblings, very few cousins, and most of the relatives I grew up with are now long gone. From early on I prized certain friendships as my family.

Your network of people may vary. With some you may feel completely safe. They tend to know much about you. Other members of your network may know you in a limited capacity — such as through an exercise class, a job, volunteering, or religious/spiritual practice — but that’s still important.

If you have a chronic health condition which limits your excursions, many of your friends may be online. It’s possible to get a lot of social support from online connections that grow into friendships. I know this to be true for my patient community. Thankfully, we have an opportunity to meet in person at our annual conference, which enhances the online friendship.

In the past I’ve explored the role of social support in blog posts and podcast episodes. Humans are social animals and we’re wired to connect with others. I hadn’t thought much about the role social support plays in my life until I began my journey as a support group facilitator. As my disease progressed, it’s served somewhat as a litmus test for friendship. It is not uncommon to lose a few friendships throughout life as we grow and change but having a life-threatening condition at a younger age can really wreak havoc with your social life.

Over time I’ve lost many childhood friendships yet I’ve grown closer to people I may not have originally gravitated toward. My heart has opened to more possibilities. My empathy and compassion have increased as well as my social support. These connections help me immensely.

The challenge this month is to think about your social support network. If you’re using the Health Storylines application, there are tools such as Daily Moods, Symptom Tracker, and Daily Planner you can utilize to capture your social support progress. Over time you may see a connection between how you feel emotionally, how your physical symptoms impact your daily life, and what your daily life consists of. How often are you interacting with friends rather than just attending to medical appointments? Are you engaging in group activities that bring you joy?

Another feature of the application is Circle of Support which allows you to add family, friends, and your healthcare team to your support network. Here’s a short video with instructions on how to do this.

Good luck and don’t forget to weigh in on the conversation in our Facebook group.

Sometimes I see Facebook posts from high school classmates reminiscing about the “good old days.” I did have some unbridled fun back then but I far prefer my adulthood. Even with a chronic health condition. Back in high school and college my emotions ran the intensity gamut from I’m on top of the world to If I only had a gun, I’d end it now! And that could be within the same hour. It was exhausting.

I knew nothing about regulating my emotions. I felt…deeply….and often. Anger was no stranger to me. Anger easily led to sadness which could take hold of me for awhile. I was depressed intermittently throughout both high school and college. I tried anti-depressants and anti-anxiety medications to help regulate my moods. It offered some relief but the side effects were annoying.

Eventually I developed tools to help manage my emotions. I don’t mean I got rid of them, I just felt them a little less intensely and I was able to achieve a sense of balance more easily.

So how does one begin to regulate their emotions?

I think the first step

is an awareness…developing a mindful attitude about an emotion. Realize what that emotion is and how your behavior has changed. You are not that anger, sadness, or ecstasy. Or at least that’s not all of you. Try to step back and see it. Examine what has led you to that feeling. Realize that this feeling is temporary and that you will experience this and other emotions again.

As I developed a more refined self-care regimen with my diet and exercise, I realized that not only was my physical health impacted, but so was my emotional health. What we feed our bodies also affects our emotional selves. I’ll explore these connections in our Facebook group during the month of September.

To help you get a perspective on your emotions, use the Health Storylines app to monitor your daily moods, food intake, and physical activity. Be diligent for a couple of weeks and then download a report to see if you detect any patterns. Remember to track any medications you take as well.

I am definitely not an expert on this topic but over the years, and a steady practice of yoga and mindfulness, I have become more resourceful in regulating my emotions. I look forward to hearing about your experiences.

If you’ve joined me on this Self-Care Challenge since the first month, thank you! I hope you’re progressing well, learning a lot, and achieving a few goals you may have set for yourself. If you’re new to the Challenge, feel free to join us now. Briefly, here’s what you’ve missed.

The first month we spent identifying symptoms and/or health challenges we’d like to work on. I introduced you to six categories of Self-Care practices. We became familiar with the Health Storylines app. During Month 2 we focused on Diet & Nutrition. In the Glass Half Full Group on Facebook we shared information related to Diet & Nutrition. You’re welcome to join this group at any time to deepen your exploration of self-care practices.

The challenge this month is all about moving your body, and it’s not just called Exercise. That’s a scary word for some people. Even scarier for me is the term…physical education. That brings back miserable memories for me throughout elementary, middle, and high school. The competition, humiliation, and mandatory one piece gym suits never fostered a love of exercise. But I did enjoy other activities involving movement. I loved dancing in high school and college and never thought about it as exercise.

Recently I purchased a Fitbit Charge 2 device which I wear daily. The data feeds into the Health Storylines app. The wrist device tracks my steps which motivates me to walk more. There are days when I don’t officially exercise but do house and garden chores and I can hit 10,000 steps. That’s movement and it certainly counts.

But my feet and legs don’t work as well as they used to. I have drop foot and often am too fatigued to walk. That’s when classes such as gentle yoga and chair fitness classes are a big help. I’ve attended a variety of chair yoga classes and tomorrow I’m going to a Seated Tai Chi class. Adaptive exercise classes are wonderful. 

But maybe you don’t have these adaptive exercise course offerings where you live? Or perhaps you just don’t want to leave your home? That’s when the DVD player becomes your coach. I am a big fan of gentle exercise DVDs especially when it’s hot outside and I don’t feel like driving to the gym. Here are some of my favorites: Yoga for the Rest of Us, Chair Dancing through the Decades, Simple Qigong, Sitting Fit Anytime, and Tai Cheng.

Join us in the Facebook group for a month-long focus on moving our bodies. I’ll share some evidence-based research studies as well as ideas for boosting your daily physical activity.

YouTube is a great place to find motivating movement video segments; here are a couple from the Glass Half Full archives:

In the continuing series, Food=Medicine, Cooking with Love explores different interpretations of how love can be a vital element in the food we eat. Whether it’s part of the mission of a local organic farm, a vegetarian chef preparing pureed, nutrient-dense food for her father with progressive Parkinson’s disease, or another chef infusing fine dining, multi-coursed meals with cannabis — each guest offers a fresh perspective for mindful eating.

Lacey Sher, owner/Chef of the Encuentro pop-up restaurant in Oakland, CA shares two recipes for nutrient-dense smoothies. Aleta Pierce, farm manager for Alameda Point Collaborative’s farm2market program, welcomes farm volunteers and CSA subscribers. Michael Magallanes, San Francisco-based chef, prepares meals for private clients.

Sweet and Green Protein Smoothie

hemp milk, coconut water, or spring water

handful organic fresh or frozen blueberries

handful organic fresh or frozen raspberries

4-5 leaves of lacinato kale or romaine

handful of parsley

2 scoops hemp protein

3 pitted dates

1/2 avocado

– add ingredients into your Vitamix or blender
– blend together until super smooth
– pour into your favorite to go jar or mug
– sip slow and enjoy!

Berry Banana Antioxidant Booster   

This smoothie is full of colorful foods, such as berries and cacao, which are loaded with a wealth of vitamins and antioxidants to help the body stay strong and vital. Plus with B-vitamin dense maca, omega rich hemp seeds, and beauty boosting coconut oil, this smoothie is filling yet completely whole and natural, assuring optimal function of body and mind. Enjoy!

3 cups of water or herbal tea

1 cup frozen organic blueberries

1 cup frozen organic strawberries or raspberries

1 frozen or fresh organic banana

handful of cacao nibs

2 tablespoons raw coconut oil

1/3 cup hemp seeds

2 tablespoons maca

1/2 stick vanilla bean or ½ teaspoon vanilla extract

optional: 2 tablespoons spirulina, your favorite green powder, or vanilla

Sweetener of choice: 3 tablespoons honey or agave, 2-3 pitted dates, or 3 drops stevia (Stevia is very sweet and strong. Use the least amount to taste.)
– add ingredients into your Vitamix or blender
– blend together until super smooth
– pour into your favorite to go jar or mug
– sip slow and enjoy!

These are simple and delicious and folks can use less fruit for less sweetness. I also like to add different ingredients such as chia, moringa powder, sometimes different vegetables like cooked or raw sweet potatoes, substitute spinach for kale if I have it. So many options. ~ Lacey Sher

Resources for Dysphagia (Swallowing difficulties)

If you truly want to understand the mechanics of dysphagia, check out this recorded webinar with the author of the textbook, Dysphagia: Clinical Management in Adults and Children, Michael E. Groher, Ph.D. It’s about an hour in duration but you’ll have a much better understanding of what this condition is.

Here is a community-generated recipe guide for people with swallowing difficulties. Recipes were submitted by caregiving family members.

Here is a recorded panel discussion about food preparation for people with dysphagia. Additional resources can be found here.

More Food=Medicine Podcast Episodes

The first Food=Medicine podcast episode included Retired Navy Lieutenant Laura Root and Edibell Stone, LPC & health coach talking about their respective diets. The second Food=Medicine podcast episode featured Jill Nussinow, The Veggie Queen, at the Farm to Fermentation Festival. Jill is a Registered Dietician and author of cookbooks and DVDs. If you want to go deeper into an understanding of fermented foods and their healing properties, check out this episode with fermentation guru, Sandor Katz. This episode explores the ancient tradition of Ayurveda through one woman’s health and diet journey.

Hot weather affects the health of humans and animals

Basset Hound with ears flapping in front of a fan

High temperatures can exacerbate symptoms for someone with a chronic health condition. The best way to cope may be to seek refuge in an air-conditioned environment. If that proves to be difficult, you may learn about a few tools and resources from patient advocates, You’ll meet Kate Mitchell, from Boston, who has Rheumatoid Arthritis and POTS (Postural orthostatic tachycardia syndrome), Danny van Leeuwen, also in Boston, who has Multiple Sclerosis, and Brook McCall, in Portland, Oregon, who has a spinal cord injury. They share their experiences with weather — hot, cold, ice, snow, and pressure changes.

7 Hot Tips to Beat the Heat

1. Pre-cooling

Check out the National Multiple Sclerosis Society website for information about pre-cooling techniques.

2. Hydration

Water’s great but so are some other beverages. The Ayurvedic tradition focuses on herbs, spices, and other plant-based remedies to cool you down. Check this magazine article for a few recipes. If you’re intrigued by Ayurveda, have you listened to last year’s podcast episode?

3. Diet Modification

Consider eating smaller, lighter meals. Here’s a list of hydrating foods.

4. Clothing

Check out this issue of the UC-Berkeley Wellness Newsletter for tips on appropriate clothing for hot weather.

5. AC over Fans

This is discussed in the link above.

6. Yoga Poses

Curl your tongue and breathe. To learn more about this cooling yoga pranayama and other cooling asanas, visit this webpage.

7. Mediation

Listen to this guided meditation to help you cool down…once you’re safe inside or in a shaded area.

 

Last month I embarked on a Self-Care Challenge and invited you to join me. You can join at any time by reading the posts, contributing feedback in our Glass Half Full Facebook group, and using the Health Storylines online tool.

I’ve been practicing Self Care for years without even realizing it. Years ago, before I was diagnosed with a neuromuscular disease, I began to experiment with my diet. I didn’t necessarily have a bad diet but I often felt bloated, experienced abdominal cramps, and probably had what we now know to be irritable bowel syndrome.

I can’t recall what the impetus was but it happened over 30 years ago. I gave up eating beef. Within a year or two I was no longer eating any animal flesh and called myself a lacto-ovo vegetarian (plant-based diet with dairy/eggs). My bloating disappeared. My cramps were intermittent but I still had that occasional nervous stomach.

A diet is really a dynamic concept. It shouldn’t be fixed, i.e. eating the same foods every day. The seasons change and there are different foods to be consumed aligned with the season. Our bodies change. We continue to learn more about food, how food is prepared, nutrients and micronutrients. As I’ve learned more about food and nutrition over the years, I continue to tweak my diet.

Little changes can have a huge impact. When I started going for acupuncture treatments, 15 or so years ago, I was asked about my diet by the practitioner. No Western-trained physician had ever spent much time talking with me about my diet. Even when I complained of GI problems. I won’t even attempt to claim any real knowledge of Traditional Chinese Medicine (TCM) but there is a long history of food = medicine. The first change I made during my course of TCM treatments was giving up that big glass of orange juice I started each day with. That cold sugar hit was not welcomed by my belly.

I’ve learned so much about food over the years and if I shared it, this would become the longest blog post in history. But, that’s not what I want to do. My diet & nutrition journey is likely different from yours. Becoming a vegetarian has helped me, yet it’s not the only way to eat a well-balanced diet. There are plenty of vegetarians that eat poorly and plenty of omnivores that eat well.

In the next month I will post in the Facebook group…mostly factoids from various nutrition newsletters I read. Here’s the Self-Care Challenge for YOU:

  • Become aware of what you’re eating, how much of it, and how often. The best way to do this is with a Food Diary. Using the online Health Storylines tool, you can keep track of your daily intake using the Food Diary feature.
  • Knowing what you already know about good foods and beverages & bad foods and beverages, each week select one bad food to omit for a week. And try to eat a new food — something plant-based. I’ll help you with suggestions.

Remember, small steps in making health behavior changes are the key. Good luck!

Sound Bath? Sound Meditation? Sound Symphony?

Melissa Felsenstein – sound practitioner – plays crystal bowls and gongs to usher in the summer solstice.

It’s become a wonderful therapeutic tool to access deep relaxation. For many, it is a gateway to meditation. Melissa Felsenstein of Inner Sounds Meditation shares her story of how playing crystal bowls and metal gongs helped her heal from symptoms of anxiety and depression. A self-proclaimed Nervous System Advocate, after several years of exploring these musical instruments, she now shares her process to help others.

Check out a video from this Summer Solstice Sound Bath.

What is Nature and how is it beneficial to our emotional, physical, and spiritual well-being? Bonnie Lewkowicz (Program Manager, Access Northern California) and Lori Gray (Adventures & Outings Program Coordinator) both work for the Bay Area Outreach & Recreation Program (BORP) organization in Berkeley, California.

Bonnie, Lori, and Delroy share their love of nature in this podcast episode.

Both women use wheelchairs and have years of experience navigating hiking trails and organizing outdoor adventures for people with physical and/or developmental disabilities. Joining them is middle school teacher, Delroy Thompson, in South Florida. Together they share how important nature is for them.

Bonnie wrote A Wheelchair Rider’s Guide published by the Coastal Conservancy. Delroy, is a member of the Muscular Dystrophy Association National Community Advisory Committee, and wrote a children’s book, The Secret of the Elves in Helen, about an elf kingdom n the Blue Ridge Mountains.

Not everyone is fortunate enough to attend BORP events but you can search for similar organizations in your area at the National Center on Health, Physical Activity and Disability (NCHPAD) website.