Essential Nutrient for Emotional, Physical & Spiritual Health: Vitamin N (Nature)

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.

Breast Surgery & Physical Therapy

Nicole Cavales — yoga instructor — was diagnosed with the BRCA1 gene mutation making her a high risk for breast and ovarian cancer. She chose to have surgery and reconstruction. Nicole’s plastic surgeon referred her to Hilary Nakao, D.PT, — physical therapist — to help with recovery. Both women are part of the latest podcast episode exploring how critical movement and exercise are to one’s daily life.

Nicole demonstrates range of motion exercises she learned from Hilary.

Nicole continues to teach restorative yoga classes in Northern California and also works for Hilary.

 


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


Everybody who is in a body can DANCE and move – it’s a right we all have

Co-Founder of AXIS Dance Company

International Dance Day is April 29th. Here in Northern California we have Bay Area Dance Week with all types of free dance classes and performances. As Judith Smith, co-founder of the physically integrated dance company, AXIS, says, “Everybody who is in a body can dance and move — it’s a right we all have.” And that is the message of this podcast episode.

Years ago when I held my first dance marathon to raise money for the Muscular Dystrophy Association a banner hung with the slogan, “Dance for those who can’t”

Fundraising event for MDA held in a mall in North Miami Beach, Florida ~ 1978

and that sentiment couldn’t be further from the truth. The AXIS Dance Company has included artists with physical disabilities, commissioned award-winning choreographers and composers, toured 100+ cities, and appeared on Fox TV’s So You Think You Can Dance. Opportunities for adaptive dance exist from here — BORP’s World Dance for All — to North Carolina where Mindy Kim teaches chair dancing.

Leia Cash, a lifelong dancer and educator, teaches adaptive dance classes at the Ed Roberts Campus in Berkeley, adults with Parkinson’s disease, and seniors at a residential facility.

 


How Can Music Help Us?

Singing along to classics from my youth definitely has a positive effect on my mood. From sharing a karaoke night with friends to learning about music therapy from a licensed creative arts therapist, this episode explores the healing power of music for young and old with conditions ranging from autism, dementia, and Parkinson’s disease to persons healing from trauma.

Laurel Roth Patton — mental health consumer, advocate, speaker, and writer — and I talk about our different karaoke experiences. Juliane Kowski, LCAT, MT-BC, MA — of Music Connects — discusses what music therapy is and how it varies depending on the client and what they need.

 


Yoga & Healthy Aging: Maintaining Independence, Activities of Daily Living, and Equanimity

Baxter Bell, MD with yoga students in a restorative pose

Baxter Bell, MD is not just a family medicine physician, he’s also a certified acupuncture practitioner and yoga therapist. Together with co-author, Nina Zolotow, they wrote the book, Yoga for Healthy Living: A Guide to LIfelong Well-Being. Baxter talks about his journey and shares insight about what aging people care most about — increasing one’s health span, maintaining independence over time, and cultivating equanimity. The thousands of people that have attended his trainings or follow his blog are concerned about cardiovascular health, brain health, and stress management. Yoga can assist with each of these.

Please check out Baxter’s Yoga & Healthy Aging Blog, his YouTube channel, and his book.

Terms discussed in this podcast episode:

  • Asana: In yoga, an asana is a posture in which a practitioner sits; asanas are also performed as physical exercise where they are sometimes referred to as “yoga postures” or “yoga positions”. Some asanas are performed just for health purposes. Asanas do promote good health, although in different ways compared to physical exercises, “placing the physical body in positions that cultivate also awareness, relaxation and concentration.” (Wikipedia)
  • Savasana: corpse pose; is an asana usually done at the end of a yoga practice in which practitioners lie flat on their backs with the heels spread as wide as the yoga mat and the arms a few inches away from the body, palms facing upwards. (Wikipedia)
  • Pranayama: breath or life force; the word is composed from two Sanskrit words: prana meaning life force (noted particularly as the breath), and either ayama (to restrain or control the prana, implying a set of breathing techniques where the breath is intentionally altered in order to produce specific results) or the negative form ayāma, meaning to extend or draw out (as in extension of the life force). (Wikipedia)

If your interest is piqued, check out these earlier podcast episodes on resilience and equanimity.


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.


Every Breath You Take: Tips for Respiratory Health

It’s cold and flu season so I asked a respiratory therapist I know — Lee Guion — to offer some guidance. Here are Lee’s 7 Tips for Respiratory Health which are critical for those with a condition that causes weakened muscles:

  1. Attend a Multi-Disciplinary Clinic
  2. Get the flu and pneumonia vaccines
  3. Treat upper respiratory tract infections
  4. Hydrate
  5. Maximize your nutrition
  6. Exercise — especially disciplines coordinating the breath with movement
  7. Sleep Well

 

But this list is only a list. You should listen to the podcast.

There are many online videos to guide you in a practice combining breath work and movement but here’s one from the Niroga Institute for people with asthma.

Here are Homework Assignments for the rest of 2017:

  • Listen to previous podcast episodes about everything from medical cannabis to mindfulness meditation as well as fermentation.
  • Soon there will be cool videos here.
  • Check out this documentary film, Unrest. It’s a “story of love and loss” about people diagnosed with myalgic encephalomyelitis (commonly known as chronic fatigue syndrome).