Staying Out of a Nursing Home

Today I got a splinter in my sound hand as I walked down my front steps while holding onto a wooden railing.  Thank God I know how to remove a splinter one-handed so I do not need live in a nursing home to get nursing care.  My mother removed splinters by picking at the skin over the splinter with the end of a sewing needle.  This was painful and required delicate fingertip pinch.  A stroke took away my ability to grasp a needle between my thumb and index finger.

My solution is to use a rasp which removes callouses on the bottom of the feet.  I trap the rasp on a counter with my affected hand.  Then I rake the rasp over the splinter.  I apply gentle pressure and make repeated passes to slowly remove skin.  Today the splinter popped out as soon it was fully exposed.  I followed with Betadine solution.  CAUTION: This method only works for splinters that are close to the surface.

I also know how to put a band aid on my finger one-handed.        I put the band aid close to the edge of a counter.  I put the affected area of my finger on the pad in the center.  Then I roll my finger to the left to get the left side of the band aid to stick to my finger.  Without lifting my hand I roll to the right so the right side of the band aid sticks to my finger.  There is usually a small tail that is not stuck down so I grab it with my teeth and stick it to my finger.  A 2nd reason I do not need to live in a nursing home to get nursing care.  homeafterstroke.blogspot.com

Knock, knock! I Was At Death’s Door. And Then I Wasn’t, aka The Issue of Turning Off the Life Support Machine Too Early

When I had my hemorrhagic stroke in 2009, my boys knew I had a zest for life from the way I lived it up to that point. I didn’t have it written anywhere, but they just knew that I wouldn’t want to die then at 60. Having put me in a medically-induced coma with a feeding tube and more wires that seemed to me, at the time, of going nowhere and everywhere, the doctors held little hope that I’d survive at all, and they thought surgery would finish me off completely, and only blood thinners would sustain me, if at all, in the life I now have.

Reported by The Daily Telegraph, a London newspaper, in 2013, an American study suggested that one third of patients who suffer a specific form of stroke are having their life support machines switched off when they might recover.

The study from the University of Washington Stroke Centre in Seattle looked at two groups of patients who had suffered brain bleeds. They matched 78 patients whose life support was turned off to 78 patients that still had the machines on.

The researchers found that 38% of those who life support machines were utilized after some reasonable time period made a reasonable recovery, and kept progressing. (About 10% of strokes annually are intracerebral hemorrhages (ICH), that is, brain bleeds). But only 4% of those whose life support machines were turned off made this comparable and early level of recovery, despite the fact that the two groups were compared evenly on stroke severity.

Dr. David Tirschwell, the main author of the study and co-director of the Stroke Centre, said, “Greater patience and less pessimism may be called for in making these life-and-death decisions. These results are yet another piece of evidence suggesting healthcare providers may be overly pessimistic in their assessments of these patients’ prognoses, leading families to choose withdrawal of life support before the patient has had a chance to recover from their stroke.”

Professor Steven Greenberg, chairman of the International Stroke Conference, and professor of neurology at Harvard Medical School, said, “The finding that fully a third of ICH patients in whom life support is withdrawn might otherwise survive is staggering.”

A more recent study in 2019 entitled A Fate Worse Than Death: Prognostication of Devastating Brain Injury, by Pratt et al says,
“[Doctors] should consider the modern literature describing prognosis for devastating brain injury and provide appropriate time for patient recovery and for discussions with the patient’s surrogates. Surrogates wish to have a prognosis enumerated even when uncertainty exists. Respect for patient autonomy remains paramount.”

Also in 2019, reported by Dr. Robert Truog, is when someone encounters a traumatic brain injury [and stroke is one of them] and is unresponsive, how soon can doctors say if the person has a reasonable chance of recovery? New and stricter guidelines from the American Academy of Neurology prompts making the choice more difficult.

Truog writes that the practice now in most ICUs is to help families make a decision about whether to stop life support within the first 3 to 5 days after the injury. After 72 hours of observation, the physicians are likely confident in predicting a poor outcome as “extensively supported in the literature.” But is that enough time?

Take me, for example. On life support, my medically-induced coma lasted over a week. And the doctor still wasn’t confident of any projected outcomes close to a month later in the ICU. My sons would have been devastated if the doctor recommended stopping life support. I owe my thanks to my sons to counter any thoughts of stopping the machine. And to the doctor, of course, for listening to them.

Brain injury survivors or not, do it now! If you have any future brain injury, write down that you want to live, to enjoy all life has to offer you, for as long as you can. Write it down now to not rush the termination process, and put it on the refrigerator with a magnet. Or place it somewhere else that even a terrible searcher can find it.

Three to five days is nowhere enough to predict outcomes. I am living proof.

As Marcus Tullius Cicero, a contemporary of Caesar, said, “While there’s life, there’s hope.”

Amen to that, brother. 

The post Knock, knock! I Was At Death’s Door. And Then I Wasn’t, aka The Issue of Turning Off the Life Support Machine Too Early appeared first on The Tales of A Stroke Survivor.

Downsizing Begins

After my visit to an independent living center in Michigan, the reality of downsizing became real. After I drew my furniture on a grid it became clear that the one bedroom apartment I can afford is too small for my beloved oak furniture.  For example, it took me two days to empty my desk and find a tiny alternative.  I am testing the efficiency of my new arrangement instead of waiting to figure it out as I unpack in a new environment.  It is better to find out now what I really need and what I can live without.  I took photos to help me remember the complicated new configuration.  homeafterstroke.blogspot.com

From 200 pound monstrosity to

 

My old night stand

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Visual Deficit of Any Kind or Just Fatigue from Stroke or Other Brain Injury? OrCam Read to the Rescue!

 

I was tired after 9 hours from multiple projects when, pre-coronavirus pandemic, I went to a famous vegetarian restaurant with a person I was going to interview, which also served vegans (of which I am one). I was told they had excellent food (first-rate grub is not at all uncommon for Portland) and we were seated when the server handed us the menus.

My anxiety kicked in when I saw the printed menu. Though the lighting wasn’t dim, the items were too small to read and my double vision went off from fatigue, both of which made for impossible reading.

It was a small place, and I could have asked him to read the menu to me, but it was embarrassing and awkward. I closed the menu as if I read it, and so did my interviewee, motioned the waiter that we were ready to order, and asked the server instead, “I’ll have that dish with tofu,” upon which, being confused about which dish I meant, he rattled off several dishes with tofu, and I chose one.

Almost the actual size

Enter OrCam Read (albeit six months later), the magnificent marvel which is five inched long, less than an inch wide, who reads anything to you from the printed page. It is totally portable, and you could zero in to only part of the document, like for a newspaper or read the whole page of a book. I got one on a loan to write this blog post because my heart is with stroke and other brain injury survivors whose after-effects, except for the lucky ones, include visual deficits.

The two founders are: Prof. Amnon Shashua holds the Sachs chair in computer science at the Hebrew University of Jerusalem, and his field of expertise is computer vision and machine learning, and Ziv Aviram who holds a B.Sc. in Industrial Engineering and Management from Ben-Gurion University. They both have a healthy history in safer ways to observe the environment, and that led to OrCam Read.

Impressive indeed. But I wanted more. I sometimes, to this day, have double vision.

The instructions say, “OrCam Read is a personal AI [Artificial Intelligence] -driven device for people who have mild or low vision, reading difficulties, including dyslexia and reading fatigue, and anyone who is consistently exposed to large amounts of text – at work or school, or for leisure.”

Aside from the restaurant where I would have used OrCam Read, it doesn’t need WiFi so no disruptions for pilots on airplanes or captains on ships. One could even use it to read books for enjoyment or serious stuff like final exams. The battery in constant use lasts about four hours.

Not only does OrCam Read have screen selection, but there’s a laser pointer, too, if you want people to read a chart or bullet points during a presentation.

OrCam Read features:
• 13-megapixel camera in front
• Built-in speaker
• Only 4 buttons
Power
Trigger
Plus – increases volume or rate of speech
Minus – decreases volume or rate of speech
• Bluetooth connectivity
Functionality:
2 reading options
Capture a block of text with a box-shaped laser beam
Choose where to start reading with an arrow-shaped laser beam
• No need to scan text or follow a line, all you have to do is hold the device in front of the text, push a button, and the text is read aloud instantly
• No internet connectivity is required and there is no connectivity to the cloud
Warranty:

1 year warranty

Oded Tsin, the Business Development Manager for OrCam, said, “Once you press the trigger button, the first button next to the +, the laser guidance will appear. You can keep holding the trigger button and aim toward the script. Once you will release it, the device will capture the image and read to you.

“If you want to switch between the two laser options, you will double click the trigger button same way you double click a computer mouse.”

So OrCam Read couldn’t be easier. I tried it a bunch of times with the loaner. I used it to read a book for an hour and it took the stress of double vision out of the mix. I used OrCam Read to read a printed newsletter from Stroke Awareness Oregon and it did a perfect job. I even used OrCam Read to read an invitation to a baby shower! It’s a sure bet that it will work every time.

Now for the cost for which you can pay it out according to your needs: $1990 and it’s not covered by any type of insurance (though it ought to be). Perhaps your organization can buy OrCam Read to share among those with visual deficits.

I want to thank Oded Tsin and also Chris Braswell, Area Sales Manager with OrCam, for letting me try the OrCam Read device.
For more information about OrCam Read, please click here and enter your contact information:  https://orcam.co/30bEOvV
Post-note: In case you were wondering, I received no compensation for promoting OrCam Read. So why OrCam Read? I’ve dedicated the rest of my life to helping stroke and other brain injury survivors and, with many having visual deficits, they’re among the ones that will benefit the most from this extraordinary device. Now you have the answer…in case you were wondering.

Perspectives in Medicine: Why a Generalist Specialist is Crucial for Excellent Care

“A child looked after by seven nannies is without one eye.”  Russian Proverb

“Too many cooks spoil the broth.”

 

On this first week of the new interns, I wanted to share with you about the importance of becoming generalist specialists, and how patients truly benefit from having an astute primary care physician.

 

As a student, I once worked with a cardiologist who had his own primary care patients. When he first started out his practice, he didn’t had start out in a thriving practice.  After several years, his cardiology practice picked up, though there were still some primary care patients that he saw.  It was interesting to see that he would refer out many things to other physicians.  If the patient had diabetes, he would refer them to an endocrinologist. For routine pap/pelvic examinations, he would refer them to a gynecologist.  Some of his patients with have more than three physicians for various needs.  He would treat the high blood pressure and atrial fibrillation, but often would focus on these issues over general health concerns during the visits.

After I completed medical school and began residency, I gained a greater appreciation of the importance of a generalist in the care of a person.  The medical school I attended had a strong emphasis on primary care for health management.  In small town Ohio, where access to specialty medicine meant delays in being seen, these doctors often managed the complete healthcare of their patients.  This became the substrate of my growth as a physician toward a training in comprehensive care as an internist.

 

What would it be like for a person to be seen by different physicians in the emergency medicine department only for more urgent needs?  Or to see a doctor for each system without a primary care physician?  Do too many physicians hurt the patient’s care?

One way of looking at a primary care physician (PCP) is a collaborator of care. After seeing the same physician for a few visits, a patient is on their way to developing an important bridge into their medical care.  The physician may function as a window to understanding how behaviors can be obstacles in health.  With the rapport developed, a patient can earnestly describe his or her health concerns to a physician who is aware of the prior medical history, medications, habits, and challenges.

pexels-photo-1179229
Photo by Brandon Montrone on Pexels.com

A PCP is the “forest for the trees” specialist – a “generalist” specialist.  He/She may have knowledge of a patient’s history that can better assist them in health conditions, with a multi-disciplinary whole-patient approach.  As an internist, it was quite common that a patient would schedule an appointment with me to go over the specialist’s recommendations, before they started a prescription.  Not only did they want to keep their PCP up-to-date with health issues, they wanted to have me look over the medication options and confirm the plan with them.

A PCP is not a reflexive med-prescriber who renews prescriptions written by prior physicians or other specialists; s/he is not a pain or sleep medication writer without stepping in deeper into the expectation of treatments.  A PCP probably should keep the greatest guard for new-patient visits or ER new patient follow-ups, when medications at higher risk of abuse are involved and “doctor shopping” behavior is suggested.  This includes checking the controlled substance prescription database and discussing the medication history with their prior provider.

A physician must find a balance of being a collaborator yet not an enabler to someone’s harmful behaviors, including poly-pharmacy.  A lot of friction could be prevented, if a patient and physician were to have these conversations in the beginning visits.  If ulterior motives exist, the patient may not reschedule a follow-up visit and continue to look for a provider that will prescribe the medication.

One visit format that I would see patients is a “medication renewal” visit.  This typically means that they would come in for new prescriptions of the same medications.  Yet, they are not the “same” person.  Our bodies change as we age, so that medications for a younger age may be potentially more harmful at an older age.  Or the patient wants the refills but doesn’t want to talk about the behaviors that are antagonizing the health conditions.

I had a thirty-five year old patient come in once who had a very straight forward request:  he needed me to refill his albuterol for his asthma, lipitor for his lipid abnormalities, and zoloft for his depression.  This shouldn’t be too long of a visit, I thought.

A deeper dive into his history revealed that his father had had a heart attack in his late forties.  He also reports he enjoyed a “good old American habit” of drinking beer nightly, sometimes four to six a night.  He was taken aback when I asked further about the habit. He was not aware that the amount of alcohol he consumed could contribute to all three health issues.  I pointed out that not addressing the alcohol problem, which would be considered alcohol dependence, would be like trying to put out a fire while there is still a gas leak.

On a second visit, he brought his girlfriend and we performed a health assessment, a blood pressure check, and reviewed his blood tests which were basically normal.  He wondered if he should be on blood pressure medications.  We talked about the role of the alcohol habit again; she was also concerned.  He became defensive and said, “how come you bring this up each visit,” and that he “enjoyed this American past-time.”

He could not or would not acknowledge that his dependence was an obstacle to his health, including his mental health.  He straightened it out in his mind by taking three medications.

 

As a primary care doctor, it was my obligation to discuss these issues with my patients. Along with this comes a review of the purpose of each medication, and placing a hierarchy of importance to them, in the hopes of stopping many of them (check out the poly-pharmacy section).  Many medications have side effects and drug interactions, which are not always checked by the prescribing specialist.  Some medications may be more harmful than helpful.  I have been known to find several medications that are either duplicates or high-risk for harm and toss them in a garbage before the patient leaves (PHI protected bags).  The patient reaction is one of both concern and relief.

Another point: since chronic disease is a result of a multi-systemic imbalance, many diseases, for which we have separate treatments, are inter-related.  The medications are only producing a side-effect that has an activity toward reducing the severity of the problem, but not without other, less tolerable side-effects.  No medication has a guarantee on health that eating a natural diet and keeping an active lifestyle do.  There is no greater joy as a physician than to providing health empowerment and seeing a patient improve their health.

 

Below are some of the potential consequences of having many physicians and how a PCP can mitigate harm and enhance care:

  1. Multiple prescribers of one or more medications can lead to polypharmacy and drug interactions.  One risk factor to over-prescribing is more than one prescriber.  I once saw an established patient in the clinic who was prescribed an anti-anxiety medication by a cardiologist.  The medication instructions were “off,” and not only was I not a prescriber of benzodiazepines,  She was taking a it four times a day “as needed”, and she needed it each time.  She became increasingly anxious.  These medications can trigger anxiety when dependence develops.  She came to see me for a follow-up visit and I discovered that this was prescribed by her specialist.  I instructed her of a safe way to come off; and asked the cardiologist if he intended to work with her on this dependence and tapering.  To avoid this, collaborative communication is key.
  2. Lack of integrative care and responsibility.  Although a specialist may have prescribed a medication, there are times when patients may find it more challenging to get in to see that specialist and depend on a PCP instead.  Without one, there is a bottleneck to getting seen and having more acute issues addressed.  It is a common practice that with multiple physicians, there is a greater risk of focused care without tackling the behavior aspects and other risk factors.  The PCP serves as the quarterback for the patient’s treatment plans.
  3. Increased risk of medication and treatment errors.  This problem occurs a lot with patients who see urgent care or emergency care doctors for their general health issues, that may become more acute.  For instance, a patient that has asthma develops a viral infection and has an exacerbation.  Without detailed records of a person’s history and an inappropriate setting to discuss health factors, sometimes a patient may be treated with a “just in case” approach or given a medication without knowledge of underlying health issues.  For instance, I saw a patient hospitalized for acute renal failure and delerium after he was given three times his adjusted dose of valacyclovir (used to treat shingles) for his decreased renal function.  The doctor prescribed the usual dose for the condition, but, in this patient, it quickly reached toxic levels in his body.

 

Summary

I hope that this encourages you to enjoy the doctor-patient relationship, whichever side you are on.  There are so many important benefits of having a health coach as a physician, one that will not only help you along your rough patches of disease but one that will help you find your way to health.

Please share this article if you found this useful, and stay tuned for future posts on Perspectives in Medicine.

 

“There are, in truth, no specialties in medicine, since to know fully many of the most important disease a (person) must be familiar with their manifestations in many organs.  Sir William Osler.

Meike and the Microbiome Bunch *New Book Release*

Did you know that we more bacteria on and in us than we have cells that make up our body? Estimates of bacteria to human cell ratio varies from 1:1 to 10:1.  Our bodies are a chimera of human and bacteria.  Just in the digestive system alone, or the “Big Colon” there are 100 trillion bacteria populating it.  One teaspoon of stool outnumbers the stars in the Milky Way Galaxy.

The microbiome helps our body in more ways than we realize.  Our bodies have adapted to this internal and external environment that abuts our cell lining.  The microbiome has earned a designation of “honorable organ,” with its weight of 2-6 lbs.  Other important organs weigh about the same (LIKE THE BRAIN!).

Synopsis:

Meike (MI-KAY) is a microbial journalist reporting the events that occur in and on our body.  She introduces children to a universe of bacteria on each and every one of us.  She explains what are factors that promote harmony and how bacteria can cause infection.  She introduces children to the microbiome in each of the systems of the body.

Children will familiarize themselves with the microbiome and some of the ways that bacteria grow.  The story will open their eyes to how our health affects our microbiome and how we can be stewards of it.  The book has a few fun features in it, that I am sure kids will love, including cute bacterial caricatures and artwork, a gallery of the microbiome bunch, and a sneak peak of the sequel, which I am sure will leave your child fascinated.

About the Authors:

The book was written by Christopher Cirino and Alicia Scheffer-Wong, a long-time frined and colleague.  Back in college, we were microbiology majors and lab-rates together.  I am grateful to have collaborated with her on this.  Already decades in our careers, I am an infectious diseases specialist and Founder of Your Health Forum and Alicia is an entrepreneur and microbiome expert (POOP!) with her company Floragraph Inc.

Please support our cause to make microbiology exciting (we already know that it is important!) and accessible to children and adults alike.

The book can be purchased on Amazon either in a Kindle Ebook ($6) or paperback ($9).

PICK UP YOUR COPY!!!

 

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Meike in her office preparing for her report

The post Meike and the Microbiome Bunch *New Book Release* appeared first on Your Health Forum.

Bathing Can Be Exhausting

As an OT I did not know how tiring a.m. care is because I never watched a stroke survivor do one task after.  Here is why bathing leaves me feeling refreshed instead of exhausted and frustrated.

Washing.  I do not struggle to soap up a washcloth one-handed or chase a bar of soap after I drop it.  I pour shower gel on a nylon poof and knead it a few times to get it soapy.  To wash my sound arm, I use a gross grasp in my affected hand to hold the nylon poof.  I do not struggle to wring out a washcloth one-handed.  I hang the nylon poof on a suction-cup hook, hose it down, and let it air dry.  I use shampoo suds to wash my face.

I press down on the nylon poof that is resting on my thighs to squeeze out suds so my sound hand can soap up my crotch.  Before I could hold the shower hose with my hemiplegic hand,
I used my forearm to press the shower hose against my stomach to rinse my crotch.  Water runs downhill.  This freed my sound hand to deal with the nooks and crannies.  If my husband was alive I would still want to bathe this private part of my body.

Drying.  My towel rack is next to the shower so I can reach it while sitting on my shower chair.  I drape the towel over one shoulder while I dry my arms and trunk.  When I get out of the shower I stand to dry my crotch with the towel draped over my shoulder.  My shoulder carries the weight of the towel so it is easy for my sound hand to manipulate the free end.  I never hold up my affected leg to dry it.  I don a terrycloth bathrobe which dries my buttocks and thighs and I let my calves air dry while I brush my teeth and comb my hair.

Dressing.  For the 1st year after my stroke, dressing was easier if I rested after bathing.  I laid on the bed in my bathrobe with a towel under my wet hair and listened to music on the radio.  homeafterstroke.blogspot.com

How I Escape from Covid-19

I have been reading e-books on Hoopla to pass the time while sitting at home during the covid-19 pandemic.  I recently reread My Antonia by Willa Cather.  This book brought back fond childhood memories of my father driving across Illinois and Iowa to visit my grandparents before there were interstate highways.  State highways built before World War II wove through miles of wheat fields that moved in the wind like ocean swells.  When we came to an intersection we could see cars for miles in all directions because the land is so flat.  One of Cather’s characters described the land this way – “I wanted to walk straight through the red grass and over the edge of the world which
could not be far away.”

When I moved east to New Jersey I freaked out for years when I drove on narrow state and county roads with sharp curves.  Not being able to see on-coming traffic around a bend was unnerving.  For years I also missed seeing the horizon at sunset.  I have gotten used to the closed-in landscape of the densely populated east coast, but the open vistas of the middle-west still thrill me.

I am grateful that a stunning writer who won a Pulitzer Prize helped me reconnect home and
happy memories.  homeafterstroke.blogspot.com