Fall Upon Fall: The Wheelchair Was the Logical Next Step

I received the news as what I perceived to be a bevy of people sitting in my living room four years ago. It was me against them, so many of them, I thought. And it actually wasn't a bevy.

"I regret to tell you that you're going to be in a wheelchair, now that you had six falls in the space of four years, until you build up your leg muscles," said the social worker, who was surrounded by a physical therapist, an occupational therapist, my caregiver, the nursing coordinator, and a student nurse who was looking sorrowfully at me. 

I thought the social worker was smug and must have said those words to other stroke survivors, and actually eleven falls in three years, to be precise, and I scoffed at the idea. Me, in a wheelchair. I was using the cane at the time, but with every fall, I regressed in my ability to walk, and my narrative followed.

"I just want to be where I was before the fall," I pleaded every time. But every time, my ability to walk was further back than it was the previous time. 

"It will be safer," the social worker continued. Safer, a favorite word of every PT. Nobody asked me if I'd rather be safer. Maybe I don't want it to be safer, I thought, obstinate, stubborn to a fault. Maybe I'll take my chances, see where things end up. 

Fast forward five years. I'm still in the chair, actually a transport chair, which a person behind me has to push once my legs get tired after 10 minutes of propelling myself. 

But when I took yet another ambulance to the Emergency Room and needed thirty stitches to close the tear on my good leg right down to the joint after hitting my leg on the dresser which had sharp brackets, leaving behind a bloody mess in the bedroom, I knew, at that moment five seconds after the fall, I would have no more. No more of any of it.

While I was in the hospital for three days, three things happened. First, my son and my aide rearranged the bedroom where my leg could hit nothing. The dresser was moved to the opposite wall. 

Second, I got a floor-to-ceiling which my younger son installed that helps me with both exercise and transfers. 

And third, Sara and I founded Brain Exchange, exclusively for stroke and other TBI survivors to write ongoing emails in a 1:1 partnership which keeps me busy throughout the day and is helping me forget about the nursing home hellhole I was situated in for five weeks.

The renowned Daniel Gu who had a stroke, the founder of Strokefocus, developed the sign-in form and logistical meetings among Daniel, Sara, and me, and ever-pleasant Anne Tillinghast, who didn't have a stroke, the musical director of The Backstrokes (a band of stroke and other TBI survivors of which I am a member playing keyboard, the others mostly string and percussion, singing and playing every week) assists the effort.

So all of this is to say, I'm better now, still having physical therapy at home, and thankful for the Thanksgiving that I will attend later today with my sons and son's girlfriend.

I haven't fallen for four months. Will I fall again? How the hell should I know! After every fall, I said it would be the last, and you see how well that turned out.

Can You Rid Yourself of Bad Habits and Thoughts Like Smoking and Strong Dislike With BWRT? It Worked So Far for Bobbie!

Hypnotist and Bobbie

As a stroke survivor, I once considered hypnotism as a way to walk fast again. The doctor said hypnotism doesn't cure weak, atrophic body parts. But then there's Bobbie.  

First, a little background. Bobbie is my caregiver, a word I hate except when Bobbie says it. She is a "real" caregiver, state-licensed, not somebody who goes into caregiving as a hobby or, worse yet, a past-time to get money for alcohol or drugs. I  had a few caregivers like that. (https://stroketales.blogspot.com/2020/12/being-comfortable-in-mind-and-spirit.html)

Anyway, Bobbie goes through, at least, a half of a pack of cigarettes daily. She smokes in the car with the window rolled all the way down and it doesn't bother me except for the fact that she has COPD, high blood pressure, and one heart attack around five years ago, and I don't want to lose her. Bottom line: Cigarettes aren't good for anybody, especially with her medical history. 

Since the day she arrived, she always said she wished she could stop smoking cigarettes, but she never did until now. She hired a hypnotist at $100 per session who uses Brain Working Recursive Therapy, or BWRT, as a method. She had her first session last Wednesday, and hasn't had a cigarette since. Two more sessions to go to reinforce.

Oh, she still has urges. She just squeezes her thumb in the fold when she feels that longing, most likely learned when she was "under." She takes care of her 80-year-old mom who lives 110 miles away on the weekends. That long drive is tough on Bobbie because automatically, she'd reach for that cigarette. But since Wednesday, she hasn't touched one. 

Bobbie will continue with BWRT because that method also aligns with getting rid of bad thoughts. Her sister and brother tried to pry guardianship of mom away from Bobbie in a couple of court cases, citing phony physical, emotional, and financial abuse. Her sister and brother lost every time. I know her mom and met her on many occasions. A more loving duo between Bobbie and her mother does not exist!

But Bobbie wants to be done with the hate and repulsion she has for her sister and brother. BWRT to the rescue! Her hypnotist says BWRT will work for that loathing, too.

As Mark Twain said, "The secret of getting ahead is getting started." And you got started, Bobbie! Woo-hoo! 

And if you have bad habits and/or thoughts, and who doesn't, find a hypnotist and ask about BWRT first before you spend your money. You'll eventually find one. It's worth the wait.  

Pen Pals: The Destined Duo of Me and Sara

The trend of Pen Pals started during the 1930s. But the second World War came in 1939, and many of those Pen Pals disappeared--moved or died, never to be active again. Once it ended in 1945, life settled down at last.

This story caught my eye about Pen Pals. Carole Lechan of Massachusetts and Jane Anderson of New Zealand have been pen pals since they were nine years old. Last week, after 56 years of writing, they finally met.

 RACHEL MARTIN, HOST, as printed in NPR (National Public Radio):

Back in 1959, a little girl from Queens, N.Y, sent an airmail letter to another little girl in Sefton, New Zealand. The New Zealander wrote back. And the two began a correspondence that has lasted for 56 years. The two lifelong pen pals never met until last week. When Carole Lechan and Jane Anderson spotted each other at Logan Airport in Boston, they each smiled and locked arms in a huge embrace. Five decades after they first began writing, Anderson had finally come to find Lechan, who now lives in Massachusetts.

The old friends told The Boston Globe that they wrote each other five or six times a year, sending letters written in longhand that could take weeks to reach their destination. Carole Lechan said, quote, "when someone writes you a letter, you are bound by responsibility and courtesy to respond. So we just kept writing."

The two had updated their correspondence to email in recent years. But as strange as it may seem, they had never even spoken on the phone. I was just really surprised she would make this investment to come see me, Lechan says. But we're not getting any younger. And this is the time to do it.

I read those words and they seemed unlikely to happen to me. One in 100 million, I thought. But I have a Pen Pal now, too.

I never met her. We never talked on the phone. But in late Spring of this year, she inquired where she can find a copy of my book, The Tales of a Stroke Patient. Or she read my blog, The Tales of a Stroke Patient and More. I can't remember. It's as if she has always been here. Her name is Sara.

And so it began. I worry about Sara. She worries about me. I get her misery; she gets mine. We email or text, sometimes both, almost every day. She knows my children's names; I know hers. I know her husband's name; and I am happily divorced. I know her favorite things; she knows mine. But at the crux of it, why are we so connected? We are both stroke survivors. 

There was something about Sara that charmed me. So I sent her my book after she gave me her address. She has favorable qualities--smart, friendly, attentive. I convinced her to join my Zoom support group so we could look at each other.

She was thinking of writing a book and her stroke misadventures. When I wrote my book, in the dusty back room of my ex-partner's house, he was always upstairs, I later knew, partly to escape me. I believe I repulsed him because the roles were reversed, much to his disdain, and I couldn't do the things I once did like go market shopping, help with the gardening, prepare meals. The only positive thing was I had no problem finishing the book which took two years. There wasn't a week that passed when I didn't say to myself, I wish I had an editor to help me with wording choice, chapter order options, proofreading.

So it was natural that I came to assume editorship at no charge of Sara's book. In Google docs which are shared between the two of us, I read all of her chapters to date--she has six--and I plan to stay with her not only until the book is published but for the long haul.  

I feel a kinship and I'm inspired to starting a Pen Pal program among brain injury survivors--someone who understands, someone who gets you. Me and Sara--I think that's reason enough to get the ball rolling.

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.

--------------------------

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.

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There! Very thought-out mission accomplished.