Happy Birthday to you, Happy Birthday to you, Happy Birthday dear scared person, Happy Birthday to YOU

I feel this sense of uneasiness. It grows each day. I’m grateful for when my mind and attention are actively focused on something other than the coronavirus.

Then a news alert pops up on my watch or cellphone. Or I overhear a conversation. Or there’s an email message from my healthcare system. Or I tune into the news right before my near nightly indulgence of The Daily Show which entertains and slowly lulls me to sleep. It’s good to catch a few laughs after the news so I can re-gain my clarity.

What is within my control to protect me? According to my healthcare provider and the CDC, “wash your hands.” Well, I’ve got that one down even though I refuse to sing Happy Birthday during the process.

I’m avoiding crowds and I cringe if I hear someone near me cough or sneeze. I’m a little hesitant to hug friends now when I see them…but I have. It pops in my head when they’re approaching me for a hug…should I be doing this? This is the hardest part. I love connecting with people and don’t want to view other humans as pariah.

But we know so little about this virus. People are walking around, asymptomatic, and they could be carriers. As persons with chronic health conditions, we are more vulnerable. Some of us have compromised immune systems. I know a common cold can wipe me out and take close to a month for me to get back to my level of optimal health.

I wouldn’t call it a widespread panic but personally, the uneasiness is like an internal itch that tenses my nerves. It doesn’t help to have government leaders who lack knowledge and compassion.

I have no great words of wisdom to convey. I’m scared and I suspect many of you are too. I’ll take all of the sensible precautions.

Being diagnosed with a chronic, debilitating disease can certainly bring stress to one’s life. In fact, that stress can be significant enough to be called trauma.

How one handles this stress varies. Some people have amazing coping capacity and are hard-wired for resilience while others have more difficulty. None of it is easy.

Mary Holt, a Registered Nurse with a Master’s Degree in Counseling Psychology, shares her journey of loss and recovery and the profound impact a mindfulness meditation practice has had on her life and work. She brings this practice to the clinics where she helps patients and their families with neuromuscular and Parkinson’s disease.

Mentioned in this podcast episode is the annual International Rare Disease Day organized by NORD. Here are two relevant podcast episodes: Rare Disease and the Need for Research and It’s Not that Easy Being Rare.

What is a Patient Advocate? A patient advocate can be an actual patient with a mental and/or physical health condition, a caregiver for someone with a health condition, or a paid professional advocating on behalf of others with a health condition.

Andrea L. Klein, of Cleveland, Tennessee, has collagen six intermediate congenital muscular dystrophy. She started a Facebook group, Breathe with MD Support Group, for people with a neuromuscular disease who struggle with respiratory health. Recently, she established a nonprofit organization with the same name.

Melissa Talwar, of Pasadena, California, has struggled with fibromyalgia since she was 14 years old. Her experiences with different medications and their alarming side effects catapulted her into focused research on the condition and potential treatments. After volunteering with a patient advocacy organization and then traveling around the U.S. to meet others with fibromyalgia, Melissa also established a nonprofit organization.

Nurse with a Heart

Registered Nurse and proud septuagenarian, Barbara Blaser, was the guest speaker at my Northern California myotonic dystrophy support group. With her healthcare background and deep knowledge of medicinal herbs, she spoke about the use of herbal tinctures, edibles, and lotions to help relieve muscle pain, anxiety, insomnia, gastrointestinal problems, and more.

Barbara’s nursing career was predominantly in the mental health field. But at some point in her 60s she had an esophagectomy and due to complications, she developed septicemia. She turned to natural herbal healing to help her pain, anxiety, and GI problems.

Handouts that Barbara provided at the support group meeting are culled from this website.

Man snoring in bed, woman awake

In 2018, a research study found that at least 36% of Americans were sleeping less than seven hours each night. Inadequate sleep can lead to a number of physical and/or emotional conditions. Some common sleep disorders include insomnia, restless leg syndrome, central or obstructive sleep apnea, and sleepwalking.

Have you perfected your sleep hygiene behaviors to achieve optimal rest and sleep each night? If not, perhaps you’ll want to hear what sleep specialist, Dr. Catherine Darley, has to say.

In addition to Dr. Darley’s advice, as well as the sleep hygiene tips I offer at the end of this podcast episode, check out this blog post on Brain & Life‘s website.

NeuroJewology
Three Jewish teenagers in South Florida

Two friends from grade school share their stories of a diagnosis of a neurological condition. Marc has Multiple Sclerosis and Steve has Parkinson’s disease. I have a form of muscular dystrophy called myotonic dystrophy. It’s purely coincidental we all went to the same synagogue; there is no correlation between being Jewish and having a neurological condition.

Both Marc and Steve maintain positive attitudes. Marc has educated himself thoroughly about MS. Steve has tried different exercise programs customized for people with Parkinson’s and now facilitates a support group.

Steve has a travel planning business; you can visit his website.

Man Sneezing
Cover that cough!

A family physician talks about ways to avoid the flu, and enhance your immunity, during this peak season for influenza. Plus, you might learn some flu factoids for your next flu trivia contest.

Stay on top of flu statistics by following the weekly FluView on the Centers for Disease Control and Prevention (CDC) website.

If you provide care for someone with a chronic health condition or an elderly family member, you might want to glean additional flu information from this online article.

For the Attitude of Gratitude Give-Aways through December 19th, check the Facebook group for details.

End-of-life planning is a huge topic. In previous podcast episodes we’ve covered the donation of body tissue for scientific research and attending a life transitions retreat. With three fascinating guests you’ll learn about an annual symposium which brings together healthcare professionals, patients, caregivers and others all “committed to generating human-centered, interdisciplinary innovation for the end of life experience,” a yoga therapist who trains others to care for the dying with bedside yoga, and a death doula.

Dr. Shoshana Ungerleider, founder of End Well, speaks about her motivation and the need for the annual event. Molly Lannon Kenny shares how a Life After Loss program evolved into Bedside Yoga. Sarah Miller talks about becoming an end-of-life doula and her work at AARP.

For more information about the death wellness movement, check out my article on Spirituality & Health magazine’s website.

Dianna Rowley, diagnosed with diabetes type 1, was a professional dancer. Although she had health issues in her childhood she wasn’t diagnosed until her early 20s when she experienced a major health crisis. Her journey to wellness and life balance includes a lot of exercise and movement with setbacks and successes along the way. Today she is a Health & Fitness Coach inspiring others with disabilities and chronic health conditions.

Heather Brock was diagnosed with diabetes type 2 nearly three years ago. An endocrinologist put her on medication which caused an adverse reaction. Determined to find a better way to manage the condition, Heather began reading books about reversing diabetes. Inspired by physicians like Dean Ornish, Michael Greger, and Joel Fuhrman, Heather adopted a plant-based diet and reversed the disease. She highly recommends Mastering Diabetes and Chef AJ.

Leslie on a Pilates Reformer
Julia works with a veteran

Practicing Pilates can be done on a mat or with any number of devices such as the Reformer. Shannon Knorr, a yoga and Pilates instructor, talks about therapeutic Pilates to help with body alignment, pain relief, and more. Julia Carver, a Pilates and Movement Therapist, works with veterans who have experienced PTSD and other trauma to help them with neural reconnection.

For people with muscle weakening conditions, like muscular dystrophy, Pilates can help strengthen core muscles.