No Use in Hiding It Anymore. I Have Aphasia.

Aphasia is one of those conditions you can't hide for long. You can say, "I'm having a senior moment," but when you say it all the time and you're a stroke survivor, you have to come to terms that it may likely be  aphasia.

Here's a quick rundown of the 2 million people, in the US alone, who have lost all, or part, of the ability to use words to communicate:

• Aphasia is an impairment of language that can affect both the production and comprehension of speech and impair a person’s ability to read and/or write.
• Aphasia is always caused by an injury to the brain.
• Stroke is the most common cause of brain injury that leads to aphasia.
• Other brain injuries from head trauma, infections, or tumors can also cause aphasia.
• Aphasia can be mild and only affect a single aspect of language OR it can be so severe that is incredibly difficult to communicate with the patient.
• Most commonly, multiple aspects of communication are impaired.
• Some people can recover from aphasia, but if they have it longer than 2 or 3 months it is unlikely they will recover.

Aphasia is defined as an impairment language caused by an injury to the brain, usually due to stroke, but it could happen from any type of brain injury.

Before April, 2009, I used to be a public speaker, communicating to crowds of people in an extemporaneous fashion, the words flowing with no effort, ad-libbing in an  impromptu fashion. Now, I know my limits and I'm scared.

Are there differences in types of aphasia? There surely are, and thanks to the UK Stroke Association for this quick guide:

Broca's aphasia (non-fluent aphasia)

Broca’s aphasia or expressive aphasia is when people find it very difficult to find and say the right words, although they probably know exactly what they want to say.

People with Broca's aphasia may only be able to say single words or very short sentences, although it’s usually possible for other people to understand what they mean. This can be very frustrating.

The features of Broca's aphasia are:

• Severely reduced speech, often limited to short utterances of less than four words.
• Limited vocabulary.
• Clumsy formation of sounds.
• Difficulty writing (but the ability to read and understand speech). 

Wernicke's aphasia (fluent aphasia)

Wernicke’s aphasia or receptive aphasia is when someone is able to speak well and use long sentences, but what they say may not make sense. They may not know that what they're saying is wrong, so may get frustrated when people don’t understand them.

The features of Wernicke's aphasia are:

• Impaired reading and writing.
• An inability to grasp the meaning of spoken words (producing connected speech is not affected).
• An inability to produce sentences that hang together.
• The intrusion of irrelevant words in severe cases. 

Anomic aphasia

The features of anomic aphasia are:

• An inability to supply the words for the very things the person wants to talk about, particularly the significant nouns and verbs.
• Speech that's full of vague expressions of frustration.
• A difficulty finding words in writing as well as in speech.  

Primary progressive aphasia (PPA)

Primary progressive aphasia (PPA) is a condition where language capabilities become slowly and progressively worse, leading to a gradual loss of the ability to:

• Read.
• Write.
• Speak.
• Understand what other people are saying.

Deterioration can happen slowly, over a period of years. Other mental functions such as memory, reasoning, insight and judgement are not usually affected.

It's important to get an accurate diagnosis for PPA. This is to rule out other degenerative brain disorders like Alzheimer's disease where language and memory and reason are affected.

The operative word here is "may." I have mostly Broca's aphasia, but I have no trouble with written expression. In fact, words come about easily through writing rather than speaking. 

I was a Communication prof so being able to say words clearly was important in my playbook. Am I disgruntled at my speaking ability? You bet. Would I ever accept the stroke? No way. But if I don't fall anymore, that would be good enough for me. 

Yes, You Should Use Global Warming and Stroke in the Same Sentence

If you haven't been under the proverbial rock, you have some idea of what global warming is. First, some background dummied down for the population--of which I was one.

The combustion of fossil fuels is the reason temperatures are higher now, that is, hydrocarbons heat up the planet to produce the greenhouse effect. As a result, it causes interactions between the Earth's atmosphere and incoming radiation from the sun. Thus, too many gases trap the radiation from going skyward again and heating up not only the earth but the seas and melting ice caps. 

Burning fossil fuels like coal and oil puts more and more carbon dioxide into the air. Too much of these greenhouse gases can cause Earth's atmosphere to trap more heat because the abundance of gases can't dissipate anymore and go back to the atmosphere.  

Here's an example. Carbon dioxide up to the second Industrial Revolution in the mid 1800s was about 280 parts per million. As of 2018, the  CO2 in the atmosphere was 407.4 ppm. And that's how bad the global warming is, and it will go up if we don't change our daily routine. 

There was talk in the 1990s about car-pooling so there wouldn't be so many cars on the road, but Americans (of which I am one) need the freedom to go wherever they want and when they want as I did, too, before the stroke so most of them drive their own damn cars.  There was also talk of solar and wind power. But much of that talk has died down. 

So we only have to blame ourselves because humans have been rapidly changing the balance of gases in the atmosphere. So where does stroke come into the picture? 

1. In one study from 2016, which used data from the United States and China because those two countries emit the most greenhouse gases, is one of the first to examine the interaction between air quality and the number of stroke cases.

Led by Longjian Liu, M.D., Ph.D., lead study author and an associate professor of epidemiology and biostatistics at Drexel University, across the two countries, researchers found that the total number of stroke cases rose 1.19 percent for each 10 micrograms per cubic meter of air increase of PM2.5 and also found that temperature had an impact on air quality and risk of stroke.

Thus, people living in the South of the United States had the highest prevalence of stroke at 4.2 percent compared with those in the West who had the lowest at 3 percent, Liu said.

Researchers also found that temperature had an impact on air quality and risk of stroke.

"Seasonal variations in air quality can be partly attributable to the climate changes," Liu said. "In the summer, there are lots of rainy and windy days, which can help disperse air pollution. High temperatures create a critical thermal stress that may lead to an increased risk for stroke and other heat- and air quality-related illnesses and deaths."

2. In a more recent study by Dr. Guoxing Li et al focused on YLL (years of life lost) and found that models used indicated projections to estimate temperature-related YLL in the 2050s and 2070s the monthly analysis to be a significant increase occurred in the summer months, particularly in August, with percent changes >150% in the 2050s and up to 300% in the 2070s. 

So future changes, beginning right now, in climate are likely to lead to an increase in heat-related YLL.

3. And from 2021 comes this: Dawn O. Kleindorfer et al, in a study which focused on lifestyle factors, such as a healthy diet and physical activity, are key for preventing a second stroke. [A second stroke. I can't even imagine.]

Low-salt and Mediterranean diets are suggested for reducing stroke risk. Patients with stroke also are at risk for prolonged sitting, and they should be motivated to perform physical activity in a safe way.

If THAT doesn't convince you.... So check air quality, stay cool, eat healthy, and get up once in a damned while. Have a good day, everybody!

A Horrific, Honest Email From Sara Riggs: A Heartfelt Story I Had to Place on My Blog in Its Entirety

I usually get similar emails all the time, slightly different in location, length, and effects. But this one from Sara Riggs is different, so different that I felt I should share it with my readers. If it was on Facebook, I would feel strange giving it a "like." And trust me. You won't like it. 

But yes, Sara, in the blink of an eye, it's all gone: confidence, empowerment, self-love. And now you have another job. You, like me, will probably never accept it, the final stage of grieving, and no, it's no reason to celebrate with those inane stroke-versaries, but what's the alternative! You should make it the best life you possibly can and join support groups, as many as you can find.

Here are two of the best support groups out there on Zoom:

Daniel's group meets at 1pm PST every Tuesday: The Zoom link is 

https://zoom.us/j/3249406839

The other one run by Keith at 3pm PST every 2nd and 4th Tuesday is

https://zoom.us/j/2671668755

I, too, was opposed to joining a stroke support group for many years, but once I joined, I go every Tuesday and I never regret it. There is joy and laughter, not at first because you're new, but eventually.

Maybe write a book? As an editor, perhaps I can advise you.

So here it is, Sara Riggs' experience: 

Today

May 24, 2021

This morning when I woke, my first thought was the same as every other day:  What day is it and what needs to be done: calls to make, appointments, is it trash day?  Today is Monday and I have two calls to make to doctors.  Then I realized the date and began to cry.  3 years ago on May 24, 2018, my world changed forever.  I wonder who besides me will remember.  I wonder if I want anyone to.  If no one does, will it hurt me?  If someone does, what is there for them to say anyway?  Last year, in the same internal conflict, I wrote 2 short sentences of what I wanted to say, if it was mentioned.  Nobody remembered, and the words were not needed.  I am most fearful of those who want to celebrate today.  They will say I should be happy; what I should think about today.  While I understand why others would think that, I also know it will not be understood why I do not feel that way.  Why I dread today.  For this reason, I will not, cannot, remind anyone.  This is not a happy day for me.  I do not celebrate.  It is not an anniversary.  Anniversaries are happy times to celebrate joyous events.  When the annual observance of the day a loved one died, it is a reminder of a loss. Sometimes a sad day, reflecting on the events or days prior to the passing. Perhaps reliving memories.  Today is the annual reminder of such an unimaginable and unexpected loss.  A reminder of the death of a loved one, the loss of a life loved – mine.

I am drawn into memories of May 24, 2018. I remember how the day was spent and with whom.  The activities of the day before.  My mind walks through the timeline.  I remember a life of meaning.  A happy, full life of excitement and joy for an anticipated future.  Following a nice dinner with a good friend, with wonderful conversation and good wine, I was glowing.  I remember a terrible pain in my head and an ambulance ride.  I remember every article of clothing and piece of jewelry I wore (none of which was returned to me).  The memories are painful, knowing that this life was erased only a few hours later.  I remember waking in a hospital bed, an empty, nonfunctioning shell.  The ability to move, gone.  Sensation on half of my body, gone.  My vision, gone.  Half of my skull, gone.  The joy of a life loved, gone.  From glowing to the anguish of profound permanent loss in the blink of an eye.

For me, this day is an annual painful remembrance of the loss of a loved one.  A day of mourning.  Not an anniversary.

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Need I say more? I don't think so.

5 F***in' Phrases We Should NEVER Say As Stroke Survivors to Each Other, In My Opinion

This post, I predict, will anger some people, but I'm entitled to write what's on my mind. A handful of stroke survivors recovered completely. So disregard please. But it's my blog. And I've been writing this blog for close to 10 years, so I'm somewhat of an aficionado on stroke survivors. I wrote a post about a decade ago about the 10 things nobody should say or do to stroke survivors (https://stroketales.blogspot.com/2011/05/the-top-ten-things-you-should-never-say.html). 

But now,  I'm reaching the breaking point of pure frustration when I hear stroke survivors talk about themselves or other survivors with the following phrases. If you want to use these 5 phrases, please go right ahead. But for me, these phases are absolutely non-sensical and inane! And yes, I'm judging you. 

1.  "My stroke-versary [a play on anniversary] is coming up next month!" often said with a grinning emoji. Like this: 😀

Or worse, like this:

I get that anniversaries are once-a-year events, but there's a celebratory air, and really, what's there to celebrate, when your life has to be re-adjusted, re-evaluated, and basically re-done forever, and when you have other "things" wrong with you that you didn't have pre-stroke. Some people would say, "I'm lucky to be alive." But that's the nature of survivors. You lived. Everyone knows that by your presence. In my view, it isn't a reason to throw a party.

2.  I don't like words "handicapped" or "disabled" when stroke survivors talk about themselves. "Survivor" or even the newer "thriver," yes! C'mon, people, let's get positive. Handicapped or disabled seems to venture in the area of less cognizant, or competent, than the normal person. And speaking of normal, I don't like word either. Nobody is normal if they have eccentricities, or neuroses, or psychopathies, of just plain weird behavior. Everybody in the world has a funkiness about them. 

3. I get shivers when shouting between stroke survivors is not corrected on the spot. You might say, "Hey. I'm a stroke survivor. I am not deaf!" (By the way, deafness always ranks under blindness. When some can't see, it's a tragedy. When someone can't hear, it often brings out giggles even though one of the senses is lost. That, too, is a tragedy).

4.  My anger increases when a stroke survivor says, "If you put your mind to it, you can do anything." That statement is not true for the majority. For example, most stroke survivors can't drive anymore, especially if they had seizures. Any activity requiring two, stable  hands? Even holding a paperback book, or putting on a jacket, or clapping? Out of the question. 

5.  I believe in God, but some survivors bring religion into the mix heavily. I heard one survivor say, "If you pray every night, God will reward you and improve your condition." And if you don't pray every night? God will punish you? I don't think so. 

The above is just a rant, to get those points on the screen so maybe you will read them again and give me a pass, and know what it's like if a stroke survivor is having a really bad day. 

Invisible Disability: Determined TV has another episode!

The fan base keeps growing! This time, an Air Force veteran, a dentist, and a healthcare advocate? This particular episode is about 3 people who share something in common. Stroke! See what each of them has to say on this topic: 

Invisible Disability  

Then the audience can ask intriguing questions and make pointed comments. And don't be afraid to disagree. Mark Garman, who hosts the channel of Determined TV, chooses resilient people who can stand up for themselves. 

If you or a family member want to appear on Determined TV or have suggestions for a topic, here's the way you do it: 

Visit our website at: https://www.determined.live

Visit our YouTube channel: https://www.youtube.com/channel/UCEqH9lSoc4jxKgI71gHE_vA

Visit our Facebook page: https://www.facebook.com/DeterminedShow/

Would you complete the short survey to help improve 

this channel? Just click on the link below! 

https://forms.gle/ckiB14JtL2YCmJgf8

Sponsored by Strokefocus, for all brain-injured people

About Caring for the Elderly, of Which (Gulp!!!) I Am One

I like to write my own stuff, love it actually. People ask me all the time if I would sponsor their guest articles, and my answer 99% of the time is a kind albeit emphatic no. But this time, I differed from the pattern. Whatever the condition, I believe it would help many. So here it is, written by Claire Wentz for Caringfromafar.com, asking the correct questions all who are in this situation should consider.

Claire writes:

For more insight into life as a stroke survivor, be sure to bookmark

The Tales of a Stroke Patient and More.

Image courtesy of Pixabay

Ease Your Mind (and Financial Burden) by

Planning for Long-Term Care

More of us are living well into our golden years than ever before. While it’s a wonderful thing to live longer, that often means requiring long-term care at some point. What are your plans for long-term care? If you require care, how will you pay for it?

Planning Starts Today

Statistics indicate the majority of people over the age of 65 will need long-term care at some point. As many as 58 percent of men aged 65 and older spend over two years requiring care, and 79 percent of women over 65 require long-term care for over three. With that in mind, how likely are you to need care?

Assess Your Need

Ask the following questions to determine whether you may need long-term care now or in the future:


Are there any home modifications you need to make? Many people opt for aging in place, and home environments usually require alterations to support that choice.

What lifestyle choices are you making now? How can you reduce the risk of injury or onset of illness? For instance, do you participate in high-risk hobbies such as mountain climbing or skydiving? Do you enjoy an unhealthy indulgence like cigarettes?

Are there hereditary illnesses and conditions that could impact you? Many people are predisposed to cancers that run in their families or issues like diabetes or heart disease.

Paying for Care

Understand Costs and Living Options

Long-term care can be expensive. While what you will pay depends on where you live and the amenities you want, it is not unusual to pay $90,000 per year or more. Are you counting on assistance from Medicare? It’s important to understand that Medicare doesn't cover long-term care after the first 100 days. (At that point, Medicaid coverage may be available, if you’re eligible.) Furthermore, as CNBC points out, you need to qualify financially for these services, and you can’t have more than $2,000 in assets to do so. The best way to discern the costs for long-term care is by talking to and visiting various communities in the Philadelphia area. Single out a few different options that offer the amenities you want, and take tours. Even if you don’t need LTC right now, some communities offer future residents the chance to put down a deposit.

Think Things Through

These concerns may seem far off, but you or a loved one may benefit from investing in a care plan right now. For instance, long-term care insurance premiums are lower if you invest in a plan at a younger age. You can also use pre-tax funds from your health savings account (HSA), if you have one, to pay for care.

Think about these issues when deciding on your course of action:

How close are you to retirement? You may have temporary disability insurance through your employer, but that won’t help once you retire.

What are the savings and insurance programs available to you now to help pay for long-term care? Many health insurance plans don’t cover long-term care.

How do you plan on paying for the costs of long-term care?

Other Options

In addition to long-term care insurance, there are a handful of options available for financing care costs. US News & World Report explains veterans can receive special assistance through the Department of Veterans Affairs, or you can use an HSA or get a reverse mortgage to pay for care. While reverse mortgages are an increasingly popular option for seniors who are 62 or older to supplement their income, you should consider this option carefully, as it comes with pros and cons.

Other avenues include tapping into your retirement accounts or selling the family home. If you opt to sell, you’ll want to find a realtor who is familiar with senior moves like this and who can help you get the best price for your home.

Ease Into Your Golden Years

Planning for long-term care is a healthy choice. Weigh your needs and options, and determine how you will manage should a need arise.

For more information, write to Claire at claire@caringfromafar.com.

Attachments area-----------------------------------------

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There! Very thought-out mission accomplished. 

Determined TV has another post!

Jayesh Patel had a sweet family and was living a good life when his existence was interrupted by tuberculosis and meningitis which led to a subsequent stroke. 

He got stuck in Japan as his situation deteriorated. The family has set up a donation link. Click the button "Help Jayesh" below and it will lead you to the link.

His family is experiencing financial challenges to sustain the current situation and would like to bring him back to India because the Patel family has exhausted all of their savings through costly medical care. Help Jayesh, please!

Below is the interview by the Determined TV with Varun Patel, Jayesh Patel's brother- in-law.

Jayesh Patel is in need of so much help though donations to bring him back to India. If you can donate, that donation will be so appreciated in helping the Patel family. And forward it to people who you think can help. 

Do you think that this program is an effective way to help stroke survivors? 

Mark Garman through his Determined TV would like to do more to help survivors.

Please spread the word if you want to see more, helping other families exist despite the challenges that confront them. 

Do you know any families who need support? Use any of the links below to help other families in need!

To follow the Determined TV,

visit our website at: https://www.determined.live

YouTube channel: https://www.youtube.com/channel/UCEqH9lSoc4jxKgI71gHE_vA

or our Facebook page: https://www.facebook.com/DeterminedShow/

We tried a new way of group discussion. What do you think?

We had a great meeting involving stroke support groups and survivors from around the country. Tell us how you like the format. Would you be interested in participating in the future? What topic would you like to bring to the meeting?

Here is the video of the meeting. We discussed Depression after Stroke. Depression is a common challenge stroke survivors face.

If you like this format and would like to participate in the future, follow the team: https://determined.live or https://www.facebook.com/determinedshow

 Three guest speakers for our first meeting:

Jessica Kruse

Jessica worked as a director of marketing of an architectural firm. In 2016, at the age of 36, a tear in her right carotid artery as a result of unknown neck trauma  caused an ischemic stroke.

Jessica is currently recovering from a coma caused by stroke-induced epilepsy.   

Frank Plemons

Frank Plemons works as a Dell sales coach. He is an avid biker. Years ago, when biking with friends, Frank ran into an accident which nearly killed him. He suffered a head injury which led to a stroke. Frank is otherwise very strong and healthy.

Cam Compton

Cam Compton is a stroke survivor, Her journey of recovery started after she suffered a stroke in 2012 the day after her 52nd birthday.

At the beginning, she could not walk or understand what was happening. After 8 years, she regained most of her functions and explored many things she did not touch before stroke, including yoga, tai chi, circuit training. She helped create a number of online media programs including hosting brain injury talk show and hand-in-hand show, the podcast program for Strokefocus.

WTF! They're Living People, For Cryin' Out Loud: The Sad Saga of Futile Trauma Transfers

I subscribe to everything related to health and stroke, and this article amazed even me, who rarely gets shocked anymore. 

This article by Jenna Basset appeared in General Surgery News: Futile Trauma Transfers Uncommon but Costly. The reprint follows here; rather blasting comments appear at the end. 

Despite making up less than 2% of trauma transfers, unsalvageable patients present a significant cost burden to the health care system, researchers report. 

Researchers at the University of Kansas Medical Center (KUMC) investigated the rates and costs of futile transfers within their organization between June 2017 and June 2019. Futility was defined as a patient who had a stay that was no more than 48 hours that resulted in death, implementation of hospice care or discharge with no major operative, endoscopic or radiological intervention. 

Within the study period, there were 1,241 trauma transfers. Among the 407 trauma transfers with hospitalization time less than 48 hours, 18 patients (1.5% of the study population) were deemed futile. In both the futile and nonfutile groups, the majority of patients were transferred for traumatic brain injury and the need for neurosurgical consultation or intervention. 

The researchers evaluated injury severity among transferred patients using the Injury Severity Score (ISS), a validated score that correlates with morbidity, mortality and hospitalization time after trauma. Scores above 15 indicate severe injury. image Futile transfers were older, with more severe injuries as indicated by a median ISS of 21 versus 8 in nonfutile patients. 

Specifically, futile patients had more severe injuries to the head and torso. The median cost of treating futile patients each was $56,396, and the total cost to the health care system exceeded $1.7 million during the two-year study period. 

The authors estimated that elimination of futile transfers would result in a cost savings of over $27 million annually in the United States. 

“Our study clearly has limitations in that our data represents the retrospective experience of a single institution serving a large network of rural referral facilities,” explained presenting author Craig Follette, DO, a general surgery resident at KUMC, in Kansas City. “The data may not be able to be generalized to other trauma networks but could be compared to similar regional networks.” 

Dr. Follette also added that the study definition of futile was conservative, which may affect study conclusions, and the data do not show the intricacies of what occurs in the period surrounding a trauma transfer. 

“It is possible that patients received therapies not available at referral centers, although, in our experience, this would be extremely unlikely in the absence of ongoing consultant care.” 

To optimize trauma transfer, the researchers propose a new trauma transfer paradigm that incorporates a telehealth support component that could be used to extend specialist support to critical access hospitals. 

“While beyond the scope of this paper, we believe that this future state will involve enhanced means of communication through telehealth/tele-trauma, and the overall sharing of Level I trauma center expertise beyond the walls of the center itself,” Dr. Follette said. “I believe the next step is collaboration with other centers in multicenter studies to truly define this special patient population and guide further resource utilization region by region.” 

The authors concluded that additional work is needed to avoid futile care and ensure appropriate allocation of health care resources to patients who will benefit. 

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Let me tell a story to set up my comments. A college friend 50 years ago (this is a whopper of a story accounting for why I remember it) told me that her husband's grandmother was dying and was in hospice at the facility in Florida. He lived in Pennsylvania, but his brother was a Florida resident. The two of them came up with a plan. Since grandma was at death's door and lived in a ritzy apartment, her hubby took a car trip and a huge trailer to Florida, met his brother, and went to Grandma's apartment to divvy up whatever appealed most to each of them. Even the marble floor was chipped away carefully. 

After they were done, with the large apartment empty and, satisfied with their "inheritance," her hubby took the car and the trailer back to Pennsylvania where he unloaded all the wonderful contents. He placed them in his gorgeous house, even the marble floor.

One problem: their grandmother lived, survived hospice care, and stayed in the hospital until she strong enough to return. Her hubby took all the contents back to Florida, even the marble floor. His brother did the same, too, and "restored" her apartment with the same things two weeks after they had taken them. 

Lesson learned: Just because the person appears "futile," life is over when it's over, not a second before. 

"Futility was defined as a patient who had a stay that was no more than 48 hours that resulted in death, implementation of hospice care or discharge with no major operative, endoscopic or radiological intervention" and is pointless. 

If that were the case, I wouldn't be here today because "no major operative, endoscopic or radiological intervention" in under 48 hours was done. The doctor had enough compassion to wait, and that waiting saved me. 

Every hospital should try, by any means and no time factor present, to keep the patient alive. That person is someone's parent or sibling or cousin or friend or colleague. 

Yogi Berra, celebrated baseball played and New York Yankees manager, is said to have originated the phrase "The game isn't over till it's over."

Exactly my point, Yogi.