Food=Medicine: Cooking with Love

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.


The Heat is On! How Weather Affects Our Health

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.

 


Social Media & Chronic Health Conditions: Patients and Caregivers

Is using Social Media important to you? Which platform do you use to find support from others with the same chronic health condition? If you’re a caregiver, do you access an online group to connect with other caregivers? Maybe you use social media to help educate or advocate for a particular health condition? This podcast episode explores how a variety of patients, and caregivers, use Facebook, Instagram and other social media platforms to do what they need to do.

You’ll hear from people with chronic health conditions: Toni Bernhard, best-selling author, and in 2001, initially diagnosed with an acute viral infection—but has yet to recover; Chris Schlecty, a Microsoft software engineer in Seattle, living with limb-girdle muscular dystrophy and Dean Sage, an attorney in San Diego, diagnosed with myotonic dystrophy.

Also included are caregivers — Loraine Dressler, retired nurse and caregiver for family members and Marla Murasko, Down Syndrome Mom Advocate & Inclusion Influencer.

In a post on the WEGO Health website, these links provide instructions on how to protect your private information on Facebook:

Newsweek, Facebook Data: How to Protect Your Private Information

Trusted Reviews, Facebook Privacy Settings: 18 changes you should make right away

Mashable, How to See All the Weird Apps That Can See Your Data on Facebook


Respiratory Challenges

Prepared for Overnight Sleep Study

You know when you have a progressive disease sometimes it seems like the next step — the new normal — is dramatic? It seems to come out of nowhere…whether it’s your mobility, your energy, breathing capacity, or any of the myriad of bodily functions that can decline.

Well, I’m there with respiratory weakness. Yet it didn’t really happen overnight. I can recall 10 or so years ago going to my annual visit at the Muscular Dystrophy Association Care Clinic and, after taking a rather simplistic diagnostic test, being told by the nurse that my breathing capacity was at 70%. I don’t think I took it seriously because the diagnostic device was rudimentary and I felt healthy.

A year or so ago I was supplied with a ventilator for night time use. The whole experience freaked me out and I couldn’t handle the forced air. I would sit with it for ~ 15-minutes and then stop. After a month or so I tried to take a nap with it. I couldn’t handle it. Long story short, I ended up returning the device. I told myself the pulmonologist was moving too fast…like installing an outdoor ramp over stairs when you’re still ambulatory.

This past winter was a difficult one for me — one respiratory issue after another and I didn’t seem to have a full recovery. I’m with a different healthcare provider now and went to see a new pulmonologist who scheduled me for a sleep study. It took a couple of reschedules on my part because I was in denial of what I must have known was the inevitable.

The overnight study was conducted in a hotel-like environment though it was far from a luxurious experience. The sleep technician set me up with a Bi or C-Pap machine at the start and I just couldn’t handle it. It was too forceful and I panicked. She wasn’t able to adjust the settings and eventually got permission to let the sleep study be a baseline without the intervention. I slept for ~ 6 hours. Within a few days I heard from a physician who analyzed the study; I’d never met him. His phone etiquette was…despicable. He admonished me for not using the machine and said I needed it. He also offered that I “have few options — the machine or a trach.”

This brief phone conversation set off a period of depression. I was not operating with a glass half full perspective. Thankfully my pulmonologist led me to what I thought was another pulmonologist colleague of hers but he is actually a Critical Care doctor. After our first meeting my spirit lifted. He is listening to me and really understands that I need to gradually ramp up to the optimal settings. 

These adjustments to a progressive disease — a new normal — are difficult physically and emotionally. I’m grateful to be working with a physician that gets it. I’m also grateful for two Facebook groups — one specifically for adults with myotonic dystrophy and the other for breathing issues related to having a neuromuscular disease. I’ve learned valuable information and received support from these cohorts.

So far I’ve acclimated to one air pressure setting increase and using the humidifier. I also fell asleep twice with both on. Small steps. That’s what I can handle. I’m feeling hopeful.


Outliving My Mom

This photo is about 30 years old. It’s one of the last ones I have with both of us before her cancer diagnosis. In older photos she wore those awful turbans to cover her nearly bald head.

My mother was diagnosed with myotonic dystrophy (DM) circa 1990 before there was a DNA test available. When my parents told me of this diagnosis they never mentioned it was a genetic condition nor that it was serious. All I knew was that she appeared before medical students at the University of Miami School of Medicine so they could see that one leg calf had less muscle tone than the other. She had more severe health situations than thin calf muscles and had been repeatedly hospitalized.

In 1990 there was minimal information available about DM. As it turned out, so many of her health issues (gallbladder and GI problems, early cataracts, daily fatigue, respiratory problems, etc.) were related to the disorder. In the last few years there have been scientific studies looking at DM and cancer which suggest that people with DM are twice as likely to have certain cancers. My mother smoked her entire adult life, was often depressed, and drank alcohol daily — creating a fertile environment for the lung and brain cancer which caused her death.

We have also learned through scientific research that myotonic dystrophy, in addition to being passed on with 50% probability for each offspring, has a component called anticipation. Essentially this means that the severity of the condition increases with each generation and often with each birth. My parents had another daughter nearly two years after I was born but she lived only three days. Now I know this child had the more severe congenital form of DM.

So tomorrow I turn 56 years old; my mother died 6 weeks before her 56th birthday.

Searching the Internet, shortly after I was diagnosed in the late ’90s, I discovered a table with data showing the average life span for adult-onset DM being between 48-55. My mother fit that data set.

So tomorrow is bittersweet. I like to think that all of my self-care and positive attitude has pivoted me beyond the dire expectations. Yet these past few months have proven to be physically and emotionally challenging. My respiratory issues, and subsequent sleep study, show that I need breathing assistance at night. My energy has a marked decline and I worry that I won’t be able to recapture it.

Birthdays can be difficult for anyone after a certain age but perhaps more so when you have this anticipated early decline…each year represents more loss to come. I’ll be celebrating with a few friends at a karaoke bar and hopefully that will kick my butt into a more glass half full perspective.


Rare Disease and the Need for Research

February 28th is Rare Disease Day. This year’s theme is: Research. How can we support research efforts for our rare disease? We can donate to our patient advocacy organizations that

spearhead research efforts. And we, as rare disease patients, can participate in research studies and clinical trials.

This podcast episode features three individuals. Amy Lynn Ream and Dean Sage both participated in phase 1 clinical trials for a potential treatment for myotonic dystrophy. Hugo Trevino, who has spinal muscle atrophy (SMA), is in his third week of Spinraza infusions and already feeling positive effects.

Hugo recommends for all those with a rare disease, check out this link to see if you’re eligible to participate in any research studies.

If you care for someone with a neuromuscular disease — like myotonic dystrophy, SMA, or the 40+ other rare neuromuscular diseases — please donate to the Muscular Dystrophy Association.

 


Sickness & Grief: Lessons Learned

In the final stretch of fighting the FLU, I decided to explore why my immunity may have been off. It’s a story, a short story, that I hope is thought-provoking for you. 

If you’re interested in learning more about building your immunity, check out this month’s featured book selection in the side bar. For more on respiratory health, make sure you listen to this podcast episode. Check out the latest news about the flu season from the CDC.

If you want a reliable companion while fighting sickness, check out Alexa and the Echo Plus. Okay, Alexa is not a reasonable substitution for a human or pet but she never once complained that I was asking her too many questions.

Not a bad companion when you’re bedridden.


Support Groups: Attend, Launch, or Facilitate

It’s all about support groups! Listen to several support group facilitators talk about their experiences attending and eventually facilitating a support group. Patient advocacy organizations represented include the Muscular Dystrophy Association, Multiple Sclerosis Foundation, and the FSH Society. Support groups organized through MeetUp cover chronic illness and life transitions.

For more information about launching a support group, check out this recent article in Quest magazine.

Feel free to comment here or on our Facebook page. If you facilitate a support group and want to be part of the conversation, contact us.


Passion: Motivation to Move through the Bad Stuff and Experience Joy

Recently I attended an annual patient conference and had a conversation which served as a catalyst for a couple of blog posts and this podcast episode. What advice do you give someone experiencing apathy and a lack of motivation? How do you cultivate a passion which can make it easier to move through the challenges of living with a chronic health condition so you can still experience joy?

There are no easy answers.

Featured in this episode are three people I know who have shared their passion with me. Mindy brings her love of dance to our myotonic dystrophy community.

 

Hazel shares her knowledge and experience with service dogs to those with multiple sclerosis as well as other chronic health conditions. And James helps his co-workers and friends experience the Totality — and other celestial happenings.

To learn more about Mihaly Csikszentmihalyi and the flow concept, here’s a TED Talk, and the books I read: Flow: The Psychology of Optimal Experience  and Creativity: Flow and the Psychology of Discovery and Invention.


Passion

At the recent Patient Advocacy Conference I attended, I spoke with a community member. We’ve previously met but I’ve talked more with his family members. He’s always seemed to be rather shy.

He asked me how I motivate myself. I’ve been asked this before. Many people with myotonic dystrophy experience both overwhelming physical fatigue as well as extreme apathy. The first time I attended the annual patient conference I participated in a panel discussion. Afterwards I had someone approach me with utter disbelief that I had the disease. Even though I appeared to be similar in age to her daughter, I appeared to function like a normal person.

The more you learn about the disease, the more you realize the diversity of symptoms and severity. I’m sure there are many additional factors the research community doesn’t take into account, i.e. my self-care routines are like a full-time job.

But getting back to this young man (age is relative and he’s ~20 years my junior) and his question. There are definitely no simple answers and no silver bullet. Some people have more of a cognitive impact from this disease while others have more physical manifestations with muscle weakness. And what about our other genetics? Maybe I have a more inherent motivation quotient than he does?

But I wanted to be helpful and I appreciated he looked to me for advice. I asked him about depression. Having a progressive chronic disease can definitely cause one to be depressed and lack motivation. I asked him what gives him pleasure and he talked about athleticism. I realized, through our brief conversation, that having a passion is integral to feeling motivated. That was what I was able to come up with…I have a passion and everyone I know who is faring well with a difficult situation also has a passion for something. You’ve got to harness that passion to get you through difficulties.

The passion may be to sing opera, sail a boat, climb a mountain, chair dance, write short stories, or empower others to lead healthier lifestyles. So, how do you find your passion?