When to stop driving a moving vehicle? That is the question to ponder; is it a toss up between being a responsible adult or maintaining a sense of independence? For many people, this is a difficult choice. If you live in an urban or suburban location you may have many options available if you give up driving. For others, a car may be a necessity — one needed to get to gainful employment, purchase groceries, or use to transport family members more disabled than yourself.
Podcast Host Preparing to Be Responsible and Less Independent
In this academic paper, physicians discuss health conditions that predispose patients for difficulties with tasks required for driving a car safely. People with Alzheimer dementia, epilepsy, visual impairments, sleep apnea syndrome, cardiac dysrhythmias, substance dependency, and neurological disorders with a cognitive component are at risk.
In this MDA Engage recorded webinar, the presenter shares this factoid — For every mile driven there are 20 decisions that need to be made and less than ½ second to react.
This podcast episode explores the decision-making process for podcast host, Leslie Krongold, as well as for guest, Keisha Greaves. Both chose to give up driving before a doctor told them to.
If you, or a loved one, are concerned about your current driving skills, take this online assessment to gauge whether or not you should explore driving options.
Each U.S. state has unique laws regarding senior and/or drivers with specific disabilities; check what your state has on the books.
If you’re a caregiver in search of advice for your loved one, check out this U.S. Dept of Transportation website.
Glenn Ribotsky, a Board member with the Western Neuropathy Association, shares his dramatic initiation as a patient into the world of peripheral neuropathy. Now, 18 years later he advocates and offers support to others experiencing the often, invisible pain of a neuropathy.
For those of you that came here looking for a photo mentioned in the podcast, it will turn up. Check back in a week. Thanks!
Excerpt
I’m actually one of those people. I’m fortunate in that I can actually distinguish, in my case the symptoms, and I’ll talk about why among different types of neuropathy. But I have problems where I have cervical spine impingement on my spinal cord, but I also have peripheral neuropathy. The impingement from the cord, though, tends to create symptoms that are much more localized because it said certain levels of the spine, in my case from C5 to C 7. In terms of that nomenclature, those symptoms are basically neck backs of shoulders and down the arms, whereas the more systemic peripheral things are body wide and the symptoms also are somewhat different. I mean, I get more typical compressive symptoms out of the cervical spine stuff as opposed to the other small fiber neuropathy. I have and define those terms for people, which is much more of a burning pain.
When you’re told you have a tumor the size of a grapefruit growing in your brain, and you have it removed, and you live to tell the story about it without experiencing profound disability, then you have a lot to be grateful for.
That’s what happened to Amy. Learn more about Amy’s health story in this podcast episode. She had no idea about a brain tumor until family members made an intervention and tests revealed the source of her various symptoms which taken individually caused no alarm for Amy.
‘Tis the season to be grateful. And Amy is grateful for much. What are you grateful for?
In the latest AARP magazine Michael J. Fox talks about how gratitude is a source for his continued optimism in spite of having to give up acting because of unreliable speech.
The UC-Berkeley Center for the Greater Good explores the concept of gratitude with evidence-based research. Check out articles and video clips here.
An earlier podcast episode, Gratitude & Thinking Small, includes an interview with noted author and Buddhist practitioner, Toni Bernhard.
What is that growing on me — could it be skin cancer? Have you asked yourself this question? During the pandemic I ignored a couple of what I thought were pimples because I was terrified to go inside a building. According to Wikipedia…
Squamous cell carcinoma of the skin is usually not life-threatening, though it can be aggressive. Although the nonmelanoma skin cancer basal cell carcinoma (BCC) is rarely life-threatening, it can be troublesome, especially because 80 percent of BCCs develop on highly visible areas of the head and neck.
Mayo Clinic
Apparently I have, or had, both. After a few biopsies, a topical chemotherapy treatment, and now Mohs surgery, I hope this closes a chapter. Yet it seems nearly inevitable that there will be a recurrence. And thus my education on this topic is in its genesis.
A few takeaways from this experience — don’t leave the house without sunscreen protection and learn more to successfully advocate for myself.
Here’s an entry from a chronic illness blogger about her ordeal with skin cancer.
Falls don’t always happen when you’re standing. Although balance and fall prevention classes help increase your odds of preventing a near fall, some falls are just unusual accidents. Like sitting in a chair where the seat gives way and your derriere hits the ground. That’s one unusual fall.
Fortunately, movement and flexibility classes improve your chances of diminishing the impact of the fall.
For more information on Balance and Fall Prevention, listen to this podcast episode with UCSF Physical Therapy Professor, Erica Pitsch.
The Mat Pilates class offered by BORP is described as: Designed by and for people with spinal cord injuries but open and beneficial to all, the Adaptive Pilates Mat Class is a unique class essential for those that sit in a chair all day and are able to get up and down off of the floor or have access to a raised mat. Liz Ann will lead the class through the basic principles of Pilates, helping you to get stronger, more flexible and even to have improved coordination. Pilates also uses specific sequential breathing methods combined with intense concentration on a specific body part to create an effective exercise routine.
To find out about other adaptive/accessible online movement classes, join the Facebook group: Movement Challenge.
Telling a patient story can be a highly emotional task for anyone. Thankfully, there are people who can help. Emily Newberry – author, speaker, coach – at the Kaiser Permanente in Oregon, is one of those people.
Emily was a natural story teller having spent part of her youth helping others tell their stories through song. Over the years she’s perfected the craft and simplified the process. It’s not rocket science, she says, just remember two facts and a feeling.
As part of Kaiser’s Person & Family Centered Care, high impact storytelling is important for patients as well as healthcare professionals. A patient story can create a call for action.
This is part 2 of a conversation with Dalia Kinsey, RD, LD, SNS. We talk about becoming our authentic selves, how trauma impacts our physical and emotional health, and the need for inclusivity and intersectionality in public health messages.
This is the most stressful year of our lives. We’ve got the pandemic going. We already knew about police brutality, but never have we been to a point where every time you turn on the television, every time you open Facebook, every time you look anywhere, you’re seeing another black or brown body being abused. The trauma is massive and I don’t see anyone really addressing it. And I feel like racism is what I know, that racism and all kinds of systemic abuse, these are public health crises.
~ Dalia Kinsey
The first part of our conversation can be found here. To learn more about Black Joy, check out this article or video series.
People with anxiety, autism, blindness or low vision, deaf and hard of hearing, mobility challenges, chemical sensitivities, or PTSD may face unique challenges visiting a dental office. Now with the additional barrier — the COVID-19 pandemic — many people are postponing or cancelling routine dental appointments.
Dr. Helena Caballero, a dentist in Northern California, discusses oral health and hygiene, how COVID-19 has changed dentistry, and modifications for people with disabilities.
For additional information, you can download Creating Disability Friendly Dental Practices from The Independence Center. For those with Parkinson’s Disease, additional information is provided to maintain dental health. For those with neurological disorders, there is an article, “Dental Visits Made Easier” offering helpful tips.
Here is an article that discusses the little dental coverage that Medicare offers.
We’re not talking about your financial investments. How much of a health risk are you willing to take during the current pandemic? Do you wear a facial mask when you leave your home? Do you maintain six feet of physical distance from people who do not live with you? Are you avoiding crowds? Postponing health appointments?
As our cities and towns gradually open up, will you change your behaviors or wait for a reliable vaccine?
Transcript
Welcome to a science fiction movie. I can’t be the only one taunted by images from movies like The Andromeda Strain. Maybe you’re not familiar with that movie? I saw it in my youth – when I was most impressionable – and I often think about it. But more for its metaphoric value, not literally. I won’t delve into the plot; you can check it out online…somewhere. I wanted to share other movie references so I googled “movies about viruses” and it auto-filled…so, I know we’re all in this together. Suffice it to say, yesterday someone wrote an article, “The best movies about disease outbreaks.” Sure enough, The Andromeda Strain is on the list. This is not a film genre I’m fond of but I have seen several others on her list.
A few days ago I went to purchase N95 face masks on Amazon and I realized many resellers jacked up the prices…today I checked Purell sanitizer and the pricing is insane. I believe there is a special place in hell reserved for people who try to profit from those with illness, disability, and vulnerability.
Are we taking it to an extreme? If,, for some reason you haven’t guessed…I’m talking about the coronavirus or what is now being called Covid-19. Is that a character in the new Star Wars movie?
I wrote a short blog post a few days ago called Hand Washing – which is what everyone is talking about. It’s bigger than the Macarena. Do you wonder as you’re washing your hands…am I doing this right? Geez, maybe you have a college degree? Or you operate heavy machinery? Or you guess correctly for 90% of Jeopardy questions? Sure, a little soap, rubbing vigorously under water, move your fingers between the fingers on the hand…sing Happy Birthday twice if you want. I think most of us have mastered the task of hand washing. What else? Give me more practical advice…you think to yourself? Or, at least I do.
So…right now there are no travel restrictions within the United States yet I see plenty of signs that life is changing dramatically. I saw a post from someone who works for Microsoft in Washington state; he received a company email advising employees to work from their own home for the month of March. Today I heard Amazon and Facebook are doing the same.
In a Facebook group for people with my disease, someone in Australia posted that people are stock piling toilet paper, hand sanitizer, bottled water, dry goods. Apparently a woman at a Sydney grocery market pulled out a knife over not being able to get toilet paper; the shelves were empty.
I’m not going to attempt to deliver any facts about the virus. Every other email I receive has something to do with it whether it’s from a health organization, a retail company, or a politician. I think the best source is the CDC website – that’s the Center for Disease Control – which is updating the information daily. Anything you read on Facebook or hear through friends should be taken as anecdotal. Like I just shared two Facebook stories with you – Microsoft and Australian supermarket. I assume they’re the truth but I won’t rely on it. Anyhow, they have nothing to do with what you’re most concerned about.
I think Trevor Noah on The Daily Show knows what we’re most concerned about. Their new nightly segment is called “Is this how we die?” I have a link to it on the Glass Half Full website. Anyhow, isn’t that what you’re thinking? I am! Sure, it’s morbid and totally depressing…but…having a chronic health condition with respiratory weakness…come on!? I’d have to be a fool not to take this stuff seriously.
The other day I went to lunch with a few yoga friends. Of the 9 or 10 of us gathered, most are in fine health. One woman is in her 70s and has a blood cancer which she receives treatment for. She told us that another woman – let’s call her K — wouldn’t be joining us. K is a world traveler, had just returned from India a few days before, and told a few people that she had a cough. As we were settling in with our food, K showed up claiming she had been given a clean bill of health after seeing a doctor and receiving a diagnosis of bronchitis.
Before K showed up, our conversation had already been focused on the coronavirus. One woman brought a big container of Clorox antiseptic wipes which we all used. We shared little tidbits of what we knew. One woman told us her daughter – who lives in another state — is worried about her because she’s in her 60s. As far as I know, she’s healthy. Only two of us at the restaurant had chronic health conditions. Did K think about us when she joined us? Even with a case of bronchitis it’s probably not wise for her to be out and about in public.
Perhaps unbeknownst to K, we struggled to make room for her at the table… at the far end of the table, away from the woman undergoing cancer treatment and myself. Everyone was polite but I could almost see the thought bubbles bouncing about.
Before our lunch gathering I debated whether to attend. I enjoy these women and only see them once each month now that I no longer attend the same yoga class. I knew K had been on an international trip but I wasn’t aware of her health status.
This virus presents many social obstacles. Do I stay at home to avoid contact with the general public? Do I attend my regular exercise classes and occasional lunches with friends? Do I partake in larger, public gatherings for music, performance, or even a sound bath meditation which attracts 100s in a facility such as a church? Do I continue to have my monthly book club welcoming 10 or more people into my home for a few hours of food, fun, and discussion? Do I hug friends when I see them at my home or out in public?
Here’s a term I was not familiar with – social distancing. According to Wikipedia,
Social distancing is applied to certain nonpharmaceutical infection control actions that are taken by public health officials to stop or slow down the spread of a highly contagious disease. The objective of social distancing is to reduce the probability of contact between persons carrying an infection, and others who are not infected, so as to minimize disease transmission, morbidity and ultimately, mortality.
Social distancing is most effective when the infection can be transmitted via droplet contact (coughing or sneezing); direct physical contact, including sexual contact; indirect physical contact (e.g. by touching a contaminated surface); or airborne transmission (if the microorganism can survive in the air for long periods).
I saw a Facebook post promoting the use of jazz hands to greet people. This may be a joke…but…consider alternatives to hugging. I am.
To what extent we change our habits, our rituals is really up to the individual. If you listen to a recent podcast episode, The Flu is Not for You: how to build immunity, my interview with a physician reviews general helpful practices to avoid contracting the flu and other airborne viruses. Washing your hands is one step but the other key behavior is to avoid touching your mouth, nose, and eyes. It’s hard but I know you can do it.
As far as limiting my exposure, I am now avoiding places where large groups gather and space between others can be…cramped. Right now my places of exercise do not fall into that self-determined barrier. And when I see friends, I’m not hugging. Thankfully I have no travel planned until May which involves air travel. It’s a rare disease conference so I’ll wait to see if it’s still scheduled as the date approaches.
This weekend is my birthday and in recent years my partner and I go away for a couple of days. Our local venture will be to Santa Cruz; I have made hotel arrangements and purchased tickets for a steam train ride; it’s open air and a short trip. We will go to restaurants but most of the time we’ll be outside at the beach or a local redwood forest. There is one indoor activity I want to do and I’ll investigate when it’s the least crowded. There’s some app available for that. anyhow, it’s Skee Ball at the Santa Cruz pier. I’ve loved playing skee ball since I was a kid…especially with the wooden balls. I promise to bring copious amounts of hand sanitizer.
I’ve debated whether or not to cancel this trip. At this point, most of our infrastructure remains the same. Schools are open. Domestic flights are happening. Restaurants have regular hours though I’ve heard many Chinese restaurants have fewer diners…which is really sad to hear. I mean, this virus is all over the world. Have people stopped eating pizza because Italy is shut down.
I’ve decided the trip is still on and I will be mindful of where I go, what I touch, and I will maintain my social distance, especially if I hear coughing or sneezing. I already do that.
We can live in fear every day for all types of situations that are beyond our control. I live in California and for the past 30 years I’ve heard that the big earthquake is coming. Any day now. I’ve done all that I can do to prepare for the big quake. I’ve taken several different types of disaster preparedness training courses. We have all of our supplies – in the house, in the car.
We live in a suburban area where crime does occur – car and home break-ins. What can I do – home security system, outdoor lighting, locking doors and shutting windows. We do what we can do.
A threat like a pandemic flu is a real test of our ability to deal with uncertainty. And so many things are outside of our control which can make life scary or exciting. I’m not suggesting that contracting the flu would be exciting…just that once you accept the uncertainty you can be open to joyous surprises as well as real challenges.
I wish I had more advice to offer. I am trying to be mindful…very, very mindful. Mindful of my actions and thoughts. I don’t want to get caught up with the panic and drama that can so easily happen when we’re faced with these overwhelming situations.
If you are listening and you are a caregiver or a person who doesn’t have a chronic health condition, please try to be extra mindful of others who are potentially more at risk. If you have any respiratory symptoms…maybe it’s just a cold…but know that being around someone like me…I’ll hear your sniffles, your cough…and I’ll get a little nervous. So, if you’re someone like K – with bronchitis – stay home to avoid passing anything on to those with less robust immune systems.
Get the flu vaccine even if you’ve never had the flu. Have you heard about herd immunity? If not, google it.
I came across a recipe to make your own hand sanitizer. Check out the podcast notes on Glass Half full for the link to the recipe. I’m going to make some.
Also, the 4 year anniversary for Glass Half Full is on March 16th. It’s a virtual party on Facebook and I promise we’ll take all necessary precautions so no germs are spread. The celebration begins at 5 pm Pacific time. There will be an interactive quiz with prizes so bone up on your knowledge of previous podcast episodes.
How is the threat of Covid-19 (coronavirus) impacting your life? Beyond fierce hand washing, are you changing how you relate to others? Is social distancing keeping you indoors? Are you second-guessing where you go, what you do, and with whom you spend time?
You’re not alone. People with chronic illness and/or compromised immune systems need to be vigilant as well as mindful.
For a few practical tips, listen to this podcast episode as well as the earlier episode, The Flu is Not for You. Here’s a recipe to create your own hand sanitizer. And if you’re ready for a little levity, check out this reoccurring segment on The Daily Show.
