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I was employed at Cozen O'Connor, an international law firm. I worked at the largest office in Philadelphia when I had my stroke on April 8, 2009, in the middle of the night. It took me a year to realize I could never go back there. It also took that long to realize I was disabled. I don't embrace the stroke -- not now, not ever -- but I accept it because I have two options: live with the stroke or... well, you know the alternative.

Nov 23, 2015

Holistic vs Homeopathic vs Medical: Who Is More Accurate?

A very long time ago, when I was a college professor (but not anymore because the stroke eclipsed that opportunity), I was teaching a class of freshmen the art of composition. Included in that group was a middle-aged man who, as it turns out, was a Tai-Chi Master, having found out through my first assigned essay, "What's Your Passion." While the unworldly freshman wrote about their passion for video games and shopping, the erudite man wrote about his interest in homeopathic (or holistic) remedies. I remember his words.

"Everything you need to keep yourself healthy is right here on earth, from headache to rash, from stomach pains to diarrhea."

The class laughed when he said diarrhea, totally being freshman, but the man didn't skip a beat and went on.

"The only trick is finding what cures what. But once you find a remedy for your particular ailment, you'll forever stick with it."   

My student, as it turns out, was into homeopathy. But it falls under the holistic umbrella. Mother Nature Network uses this example:

"Feel a cold coming on? You could nip it in the bud with conventional medicine, or you could consider a homeopathic or holistic approach — but what's the difference?

"A holistic medical doctor combines modern, Western scientific treatment with alternative medicine or complementary treatments, such as chiropractic, acupuncture or massage. Both a homeopathic physician and a holistic medical doctor will look at the whole picture. How they differ is that the homeopathic doctor would prepare a remedy in liquid or tablet form, while the holistic doctor would provide a patient with the option of a pharmaceutical drug in addition to alternative treatments, which could include a homeopathic remedy."

The bottom line? Homeopathic medicine looks at the whole person, combining a person’s physical state, diet, emotional and mental state and stress triggers, often not taking into consideration the use of modern diagnostic tests. Holistic medical doctors often encourage diagnostic testing in an attempt to find the underlying cause that led to the disparity in the first place.

I take 10 prescribed pills a day, and I get prescriptions for all of them from a medical doctor. They each do what they're aiming for, like anti-seizure, reflux, asthma, and as a result, no seizures, no heartburn, no asthma. If another stroke happens, (though the odds say it shouldn't because I'm past the 5-year post-stroke demarcation line), I'd choose the holistic approach.  

I wanted choices while in the hospital for 15 weeks and after for 6 years, but all they had were medical doctors. Pill writers. Prescription aficionados. Big pharma pills of the day for which the doctors are wined and dined at banquets in hopes that interest abounds. "Choose the red capsule, choose the pink pill," big pharma screams.

The medical doctors use us as guinea pigs to determine--on us, I repeat--if the pill or serum or what-have-you works. So I can't say who is more accurate--holistic, homeopathic, or medical. What I can say is, to use Ed Koch's line, the former mayor of New York, regarding the choice you make, "If it's working, don't fix what ain't broke."

Nov 8, 2015

Frustration and Stroke Survivors: 5 Ways to Avoid It

Charles M. Schulz is gone now (he died in 2000), but his memory lives on in the characters he created in Peanuts, those lovable little ones who express honesty to a fault, sarcasm to the weak-minded, and the thoughts by illustration of that endearing dog, Snoopy. 

In one scene, Linus is obsessed that there is a Great Pumpkin who will appear on Halloween night and has Sally accompany him to the pumpkin patch. Linus passes out as  the shadow of Snoopy appears instead, rising slowly from the pumpkin patch. When Linus "comes to," Sally, out of frustration, goes into a maniacal rant about missing Halloween and all the candy. That's when she says, twice, "You blockhead!" (https://www.youtube.com/watch?v=7ushQ_mMSqw

I called people blockheads, too, before my stroke 6 years ago. Blockhead was sometimes followed by "Aaaargh!" But that's all. Now, that I don't have any filters after my stroke (http://stroketales.blogspot.com/2014/06/impulses-and-brain-aka-fuck-where-did.html), my words are a lot worse, like prick, shithead, and asshole. If what they did was really bad, I would say, "Fuck you" (but that only happened three times and in the first year after. I ended up feeling sorry for them).

I was frustrated, and still am. I realize that it's not going away any time soon--or ever.

From what I figured out in my post-stroke time with myself, frustration comes about whenever my goals aren't met. I have also decided that there are 2 types of frustration, which I call outie and innie. (Just like the belly button. I stole that from my mother). 

Outie frustration comes from causes that you can't do anything about, like standing in line at Walmart or getting stuck in traffic. Outie frustration is unavoidable. 

Innie frustration is about the disappointment that gets in the way when you can't achieve something you want, the kind of frustration that we can do something about. 

After 6 years, though I'm not done, I figured out 5 suggestions for avoiding my innie frustration, and I'll pass them on to you:

Problem: If I would phone any government agency and the person on the other end didn't understand me, or wasn't listening and had me repeat things, I'll start to get breathless and my throat becomes hoarse from saying it again--and again. And the more aggravated I get, I soon go into hyperventilation. 

Solution: I have friends, you have friends. Have them make the call with the phone on speaker so you can interject (unless you have a rotary phone and I'm simply not going there).

Problem: You have to open a can or jar, you're alone, and you can't.

Solution: Just go to Amazon.com and type these words into the search bar: "can opener with one hand" or "jar opener with one hand." You'd be amazed at the assortment. Holidays are coming. He-loooo!

Problem: You want to eat something, but there's no one home to make your meal.

Solution: Glad makes those Zip Lock bags now. Don't buy the slider bags. They're impossible to get open. Have someone cut up individual portions--sandwiched or whole meals--and place them one at a time inside the Zip Lock bags, placed in the refrigerator or freezer. You can take one out anytime independently and put it in a microwavable-safe container. Voila! A meal in minutes!

Problem: Take a look at your bathroom sink right now. Does it look similar to this? Do you have your toothbrush and toothpaste, cups to rinse your mouth after, your personal grooming tools, any lotions, towels, where they are unreachable? Mine resembled the pic on your right.

Solution: Organization is key. I re-organized the sink area with small containers, putting all my brushes, make-up and mirror (for guys, other grooming tools), lotions, and towels  separated within easy reach.

Problem: You are ready to go to bed and forgot your book in the living room. (If you wear an AFO, you really don't want to back there and get it). Instead, you turn on the TV or the Smartphone or the computer, which is a bad choice. A few years ago, the Chicago Times reported that neuroscientists have found light-sensitive cells in the eye that detect light, which contain a photopigment called melanopsin that is particularly sensitive to blue light. 

"Blue light alerts the brain and suppresses the melatonin, and shifts your body clock at the same time," said Harvard Medical School sleep researcher Steven Lockley. "Your brain is more alert now and thinks it's daytime because we have evolved to only see bright light during the day."

Solution: Reading before bed--good choice. If you don't have a night stand, you can pick up one for cheap at places like Goodwill or thrift stores in your area. Store another book in there. 

And there you have it. Easy-peasy. Quick remedies. So come on. Get going. You don't want to be called a blockhead, do you?

Oct 25, 2015

If You Have Aides, 3 Things You Have to Remember About Acting Like Your Own Boss, aka YOU'RE in Charge!

It's so hard to deal with people. I had aides in New Jersey and had to find even more aides for my stroke care when I came to Pittsburgh. I called them personal assistants to give the job a more elevated status. It didn't help.

One was allegedly addicted to cocaine. One brought her boyfriend every time.  One told me I was discriminating against her when she couldn't lift my wheelchair anymore. One took her 2 whining children along.

One smoked wherever she went, even when there were "no smoking" signs posted. It was like a revolving door. I hired and then I fired. But what they all had in common was they needed money--my money. It took me a year to finally figure it out.

There are tons of aides, I later found out, through various websites. But the trick is finding great ones. You have work ahead of you as well. These 3 tips will help you find and keep the aides you want!

1. Establish your role from the start

Unless it's your wife or husband, they're your employees, not the other way around. They work for you. And as your employees, give them a fair chance of doing things their own way. Then, if you don't like the way things are done, speak up. That was the hardest part for me, realizing that they work for me. But once I did, that was the end of feeling like they were in charge. Plus, they're not mind readers. You have to tell them what you like and what you don't!

2. Appreciate your employees
When you're your own boss, you're dealing with people who, as a matter of fact, are sensitive souls. Say thank you a lot, but don't overdo it. I used to say "thank you" roughly 100 times a day. (I started counting because I knew I was doing it too much). Now, I say thank you for above-and-beyond activities, like opening a box of tissues when not asked to do so, anticipating my bad allergies, or complimenting them on a good suggestion.

3. Give employees the resources to do their jobs

Provide them a list when they come, on things you want to get done for the day. Always stock up on kitchen and bathroom wipes, the antiseptic kind, like Clorox or Lysol. Have something to dust your furniture, and even dry washcloths will do. Keep your vacuum in top-notch condition by showing the aides how it works, i.e. filter placement and emptying it to avoid clogging. 

When all is said and done, it's really up to you. 

Oct 4, 2015

Stroke Survivors Could Easily Handle a Power Nap. But Do They Want To?

Everyone feels tired at some point. But I fight napping. If I nap, even for 15 minutes, during the daytime, I'm hit with insomnia at night and go to sleep at 4am. It all started when I stayed up later and later to write this blog and other things.

Karl Doghramji, MD, Medical Director of the Sleep Disorders Center, Thomas Jefferson University, Philadelphia, reports, "The avoidance of naps has been proposed as a method of enhancing sleep continuity on the following night." 

Truer words were never uttered. When it comes to strokes specifically, The National Stroke Association (NSA) says that post-stroke fatigue, or PSF, affects as much as 70 percent of stroke survivors, especially in the early years. PSF happens without warning. PSF is not just feeling tired and wanting to take a nap. With PSF, you have to take a nap. 

The NSA identified 3 types of fatigue for stroke survivors:

Cognitive (like mental fatigue, difficulty focusing)

Physical (like function limitations, spasms, pain, muscular weakness, interrupted sleep)

Emotional (like crying and laughing at odd intervals,

I encountered all of them. On the cognitive 
side, even six years later, I still have mental fatigue and usually rest once a day; just resting, not necessarily napping. I have all of the physical ones randomly. As for emotional fatigue, I am still, somehow, motivated, but I cried and laughed at the wrong times and places the first few years. And depression? I still have it, though rarely, but doesn't everybody?

The top 10 foods, according to the NSA, that can help ward off fatigue include:

1.   Walnuts
2.   Pumpkin seeds

3.   Quinoa
4.   Yogurt
5.   Whole grains
6.   Wheat bran cereal
7.   Red bell peppers
8.   Tea
9.   Watermelon
10. Dark chocolate (Watch your intake and your waistline!)

I tried all of those on the list, but I'm back to insomnia again. 

According to strokeassociation.org, survivors expend more-than-normal energy to do everything.

“You may have less energy than before because of sleeping poorly, not getting enough exercise, poor nutrition, or the side effects of medicine. You have as much energy as before, but you’re using it differently because of the effects of your stroke. Things like dressing, talking, or walking take a lot more effort. Changes in thinking and memory take more concentration. You have to stay 'on alert' all the time--and this takes energy,” says the association. 

So if you fight napping and still have trouble with Circadian rythym, where you wake up later and your days go until 4am, for example, try these methods coming from UCLA's Sleep Disorders Center:
  • Poor sleep habits can also disrupt your sleep pattern. A sleep specialist can help you adjust your behavior to promote better sleep. Maybe you have sleep apnea.
  • Bright light therapy may help shift the circadian system and reset the body's clock. Properly timed exposure to bright light can help advance or delay the sleep cycle. The television or computer, for example, may interfere with bedtime because of the bright lights. 
  • Studies are exploring the use of melatonin supplements to treat circadian disorders. Melatonin is a natural hormone. Your body produces higher levels of it in the bloodstream at night. It is believed that melatonin helps signal your body to go to sleep. It may also play a role in resetting the biological clock. Talk to a doctor before taking melatonin. 
I want to join the world at 7am and go to bed at 11pm. But I'll conquer insomnia. It just takes time, the experts say, and that's the response I like the least.

Sep 19, 2015

Aging Gracefully, Dammit! aka I Can't Blame My Stroke on This One

Sarah Jessica Parker was the sex columnist, Carrie, in the television show "Sex and the City" and Shania Twain is the rockin' Country star and Kevin James is the hilarious comedian, but what do they all have in common? They've all turned 50 years old, (emphasis on "old"). How did that happen? They were 40, and then, in the blink of the eye (from my perspective), they've probably lived longer to date than they're going to live in the future.

I count myself among them because, at the age of 67, I am going into the sunset of the rest of my years and a senior citizen, and I, too, passed the midway point of life.

I hired a new aide who's 24-years-old. We were talking about her mother who's 51. She was saying when her mother and she walked into a store or restaurant, everybody who didn't know them thought her mother was her sister.

"She really looks young," she said, "and people can't believe she's that old." Old? She thinks 51 is old? I let that go, didn't go rogue or anything.

I look younger than I am, too, so I asked the aide, who already knew my age--67--what other people would guess my age to be.

She replied, "You don't look a day over 62." 62? I think I look late 40-ish, early 50's at the most. Maybe I am delusional. Or maybe my vision is poor. Her comment got me to thinking, "What's our obsession with age?"

In How to Overcome Age Obsession, Sanjay Gupta, CNN's Chief Medical Correspondent, writes, "If you think about it, whichever stage of life that you’re at, if you look back at the other stages, you will realize that you had a good time then but you probably will not want to go back there."

The Huffington Post reported on a segment of Today Show, Why Are We Obsessed With Looking Younger? where make-up artist Bobbi Brown says, "It's about resetting your brain. It's not about how you look; it's how you feel and how you think."

I say (this is the delusional part) that age is only a number, when I'm alone and trying to convince myself that age doesn't matter. But let's face it. We're one year older than the year before, which is why Jack Benny, when he celebrated his 39th birthday in 1933 on the radio air, stuck to that magical number for the next 41 years, no matter what his age really was.

It's not an original story. My mother gave me hell after I threw her a surprise 65th birthday party, and my cousin, Joseph, came up to her, according to my mother, and said, "Now we know how old you are." She was embarrassed and didn't talk to me for a week. She was age-obsessed, too.

You want to get a harsh reality check, to feel really old? Think about your kid's age. My older son is going to be 40 in January. My other son is going to be 35 in April. I can still remember the seemingly millions of stories, when Andy had to be rocked incessantly in the middle of the night when teething for every tooth, when Jordan climbed out of his crib at 11 months and landed on the floor at 4 am. 40 and 35? That's when the truth really sinks in.

There was a Bingo tourney in the community room of my apartment building yesterday. The 24-year-old aide asks, "Do you want to go? They're giving away a designer handbag."

"I detest Bingo," I reply. B-15. O-52. "I get shudders from the boredom," and from the age-related insult. (I always thought, Aren't most who play Bingo over 70?)

She goes on. "While you're playing Bingo, you could meet some of your neighbors in your home."

And there it was--"in your home." Let me tell you something about my "home." It isn't a home for the disabled even though I had a stroke. It's an apartment building, not an assisted living facility, already beginning to feel defensive about my age. And furthermore, I continued to myself, feeling my anger almost turn into rage, I don't like Michael Kors handbags with the MK highlighted all over the bag. I shuddered again. I realized I was going into topics she didn't even broach. And I knew, just knew, I was on the edge.

"I have an idea. Let's go shopping for a new I-phone case," I insisted, yearning to appear hip.

And shortly, I returned to the Verizon store, lost the anger, and was, in my mind, 48 again. 

Sep 3, 2015

5 Hilarious Thoughts about Campers and Stroke Survivors

J, a good friend, and I accomplished the 2-hour drive from my place to the campground in Ohio, stopping at Cabela's in West Virginia, the hunting, fishing, and outdoor gear emporium that also had bison burgers and deer meat custard if you wanted to take a break from shopping. (Only kidding about the custard). I bought a long-sleeved shirt because I didn't pack any and the air took on a chill even though, technically, it was still summer. Going to Cabela's put J even more in the mood for camping, but I just kept muttering that line to myself that Dorothy says in The Wizard of Oz: "There's no place like home."

J and I traveled the gravely, rutted road for one mile once we got off the highway and then we were there--Seneca Lake Resort--which was 300 lots filled with 300 trailers. This time was the first for me since my stroke 6 years ago that I agreed to go. It was a gargantuan step that took me out of my comfort zone of television, writing, and exercising in my own apartment. I was ready for the challenge.

As we pulled up to her trailer house, J had an addition--an attached, screened-in porch as do some of the people, and some people have ongoing projects--an extra bathroom in progress, a built-out kitchen soon to be completed, an almost expanded bedroom. And some people only have the original trailer. But all of the people enjoy camping. I mean, really enjoy camping.

I can't expect anybody who hasn't experienced a stroke to know, at exactly the point of our arrival, what dangers lie ahead. I hadn't fallen for over a year and yet I saw all that lay before me--a high step up to the screened porch, four  wooden steps to get into the trailer, throw rugs as my eye could visualize, a back deck with a high step, and 5 rocking, unstable recliners throughout the porch. But I had come this far and I wasn't going to renege. I just wasn't. I had to pee and it was a decision whether to go up those wooden steps or hold it in. (I held it in for a little while longer).

The weekend was great, but the challenges even more so. So I present the list: 5 Things You Have to Remember about Camping as a Stroke Survivor.

#1: Forget your fear of bugs. This is camping. The first time I saw a wasp in J's trailer, I thought life as I knew it was coming to an end. I'm allergic to anything "bee-like." Then my mother's words returned to me: "If you don't bother it, it won't bother you." My mother's words weren't at all true, but you have to forget about the flyin' and/or creepy crawlies when you go camping. You have to pretend that they're your friends. (Come to think of it, some of my friends have stung me, too, but I digress).

#2: Lose your fear of food. Sometimes, you just have to go with the flow. I am a picky eater. I eat the same things every day and only the combination varies: yogurt, bread, cheese, turkey, peas, bananas, and oatmeal. J served spicy-hot chili with meat one night, sausages with fried onions and peppers the next night. I ate sparingly, but not sparingly enough. No more information needed. 

And it was shocking  when J's husband, who has Southern roots, announced that dessert was boiled peanuts. I never had boiled peanuts and the thought of those little legumes jumping and sloshing around in scalding hot water made me sad. But after I tasted them, I was hooked and I didn't feel sorry for those peanuts anymore. I started thinking if boiled peanuts were offered on Amazon, the website where I should own stock in the company, I'd order them.

#3: Don't ever say, "Eeeew." We went fishing, just the three of us. Their son stayed with a friend and they were catching bugs to put into the ant farm that I bought him as a gift (also known as a child's self-created apocalypse. Beetles and ants? You can imagine). Anyway, I was sitting on the rocking boat and I was pretending that I wasn't sea sick, when all of a sudden, J's husband caught a big one--a flapping, pissed-off bass that was putting up a pretty good fight. 

After reeling it in, J said, "Here, you hold it by the line while I take a picture." There were a lot of things wrong with that picture, but at the top of the list is the fact that the fish, now going bonkers, was spraying lake water on my body. I was a little OCD now from my stroke, and once we returned from fishing, I couldn't take a shower after because the trailer's tub is too high, but I promised myself that I wouldn't say the "E" word even once, so I let the fish have his agony while she snapped a few pics. But that doesn't prevent me from saying it now, safely back in the comfort zone. EEEEEEEEW!

#4: Do what the other campers do. Mostly everybody had a golf cart on their property for visiting other campers or just snooping at the other 299 trailers to see what they had going on. I saw them going by, golf cart after golf cart, many of them driven by young kids. The park didn't care as long as your foot touched the pedal. J had a golf cart, too, and said she wanted to give me a tour of the park-like setting. The golf cart's speeds were "off" and "beyond-your-wildest-dreams-fast, aka "Indy 500-car fast." There were no seat belts, so her husband used a spare garden hose to keep me from falling out. That gesture really wasn't necessary because I wasn't going anywhere. Seeing the setup beforehand, I grabbed tight to the bar right behind J's head, and the garden hose belt fell off 50 feet from the trailer when we started. 

We were off! I kept me eyes open in a wide-eyed stare, waiting for my eventual death, going around sharp curves and hard bumps in the road, but after a few minutes, I enjoyed it. My hair was shot to shit because the golf cart didn't have a windshield either. But the amazing thing about all the campers we passed on that mini road trip is that they didn't care what I looked like. If you ever want to feel accepted, go camping. The reason? Everybody in the camp looks like shit, too.

#5: Relaxation is the key. For 3 days (except for the aforementioned), I was totally relaxed. I lay in the sun thinking only good thoughts. I sat in the recliner and saw, through the screened-in porch, scores of cardinals, hummingbirds, and yellow finches traveling to and fro to the 5 bird feeders, hanging from strings to keep them out of the raccoons' reach. I reclined by the fire pit and was thankful for J sharing this experience with me and the lily pads she pointed out on the lake, for J's husband who was all about safety, and J's nine-year-old son for offering to help me to traverse the flagstone walkway and showing me the frogs he caught (and let go). 

Soon as I got home, it was back to the same old, same old, but for 98% of the 3 days I was there, I had found nirvana.

Aug 8, 2015

Depression and Stroke, aka If It Comes to Depression, You Know What Hell Feels Like

I think of depression as an inverse proportion formula--the longer you live with the stroke, the shorter you think about depression. It was that way with me, but it isn't that way with everybody.  "P" says on Facebook, "I'm still depressed 20 years later. How come you're not?"

Well, "P," the last time I thought about depression was 2 days ago. The time before that? I don't know, but it wasn't much in the last 2 years. So what prompted my depressing thought? I'll tell you.

My personal assistant said, "Do you have to wear that brace forever?" But that comment, even though it was horribly depressing, didn't give me depression. It just gave me, for a fleeting moment, sad thoughts about all the things I couldn't do anymore, like tennis, square dance, run. But I didn't dwell too long on that thought--maybe 5 minutes at most--because what's the alternative?

Plus, depression comes in many forms:

Major Depression (5 or more symptoms for 2 weeks or longer--loss of interest in your activities, sleep problems, weight fluctuations, energy level changes, feelings of guilt, trouble concentrating, thoughts of suicide)

Dysthymia (2% of people have it for a year which can be indicated by low mood  sadness, trouble concentrating, fatigue, and changes in sleep habits and/or appetite)

Bipolar Disorder (patterns of excessive highs and lows)

Seasonal Affective Disorder also known as SAD (most often during winter when the days grow shorter and less sunlight is available)

Psychotic Depression (seeing or hearing things that aren't there, incorrectly believing that others are trying to harm you)

Postpartum Depression (comes right after childbirth, lasting a week or even months)

Premenstrual Dysphoric Disorder (once-a month mood swings, trouble concentrating, irritability)

'Situational' Depression (death, divorce, financial woes)

Atypical Depression (increased appetite, sleeping more than usual, arms and legs heaviness, overly sensitive to criticism, all of which a positive event can temporarily improve mood)

If you recognize depression in yourself or others, and you or others want to get help, there is help available. (The operative word is want). Talk therapy and drugs help, but only if you want it. I can't stress "the want" enough.

Three of many studies about depression that caught my eye appeared in the Journal of the American Heart Association:

So those findings helped me to generate ideas.

1. Rehab therapists, on the whole, don't give reasons why you're batting the foam ball, why you're putting round pegs in round holes, why you're standing up and sitting down with 10 reps and 2 sets.

If they took time to explain why you're doing those things, maybe stroke survivors would realize the importance, not just silly games to waste time, to try and decrease or even eliminate depression.  

Sometimes, therapists don't listen. I heard them talking. They're more concerned with the schedule (oh, God, I have 3 more patients to see) and the order of the room (I must return the ball to the basket) than they are with explanations (the exercise I am asking you to do will improve your balance, endurance, your future life!)

2. Our no-nothing Congress should pass a law (yeah, that's gonna happen) that there should be a psychiatrist or psychologist or a licensed social worker in those first weeks or months in the rehab center after the stroke to avoid depression and regularly see patients and scare them "straight" into rehabbing all they can, by telling them "do you want to have a hand and foot that are dead?" or "you have to try and pronounce each syllable. TRY!"

For me, it would have made all the difference from keeping me in Hell, aka depression, for those first years. Then I went to talk therapy. Fortunately, I was only a visitor in Hell and I got out. But I wanted to escape the torments of depression. 

Remember what I said earlier? I can't stress "the want" enough.

Jul 26, 2015

Wheelchairs and Stroke Survivors, aka Talk to Me When You're Talking to Me

China had the first-recorded wheelchair in the 6th century, made of plant reeds and iron wheels, and then Spain, Germany, and England later, ably transported, mostly through wars, the disabled by other wheelchair materials. Many centuries later in the 1700s, in Bath, England, the most popular wheelchair, albeit cumbersome, looked like this: 

Now we have this


Look how far we've come. But I'm here to talk about wheelchairs in a different capacity.


There are two Mark Zupan's. There is Mark Zupan, the famous dean of the University of Rochester's Simon School of Business, but I'm talking about the other Mark Zupan, who earned a soccer scholarship to Florida Atlantic University


Mark Zupan

A football and soccer star in high school, and after a soccer game in '93, when he was 18 years young, Zupan got buzzed at a bar along with some of his soccer team and fell asleep in the back of his friend's truck. His friend, driving drunk, went off the road and Zupan landed in the canal, clinging to a branch for almost 15 hours, resulting in hypothermia and, ultimately, to quadriplegia.  


Even though he stands and walks short distances, Zupan ended up in a wheelchair for life and became a quad rugby champion twice. Zupan went on to become a TV and movie personality, appearing many times as "the guy in the wheelchair."  


Zupan's autobiography, "GIMP: When Life Deals You a Crappy Hand, You Can Fold---or You Can Play" and his notable championships make him famous.

But to me, he is most famous for his words: "We're normal people," says Zupan. "Don't be scared because we are in a chair. People don't understand that. They think, 'Oh, a wheelchair, something's wrong with their heads, something's just not right.' Well yeah, we may be a little twisted, but no more than anyone else." And there it is: "no more than anyone else." 

Maybe it's only me, feeling diminished by the wheelchair. I can stand and walk with a quad cane so sometimes, when I'm in the wheelchair, I raise the leg rests and stand so I'm on the same plain as everybody else. I'll explain.

When I go to a doctor or a store and I have a lot of walking to do, I'll go in the wheelchair, of course with a friend because I can't drive (seizures in the first year, and this is my 6th, but still...). The doctor or the salesperson always addresses my friend, like, as Zupan says, they think "something's wrong" with my head.

I was almost to the point, many times, of telling them "to look the fuck at me." But I didn't. Except one time. I was, to use on old expression, at my wit's end.

Kristin C, working with the elderly, says in an email, when looking at somebody in a wheelchair: "I think we can only learn this from exposure to [the wheelchair]. If we all realize that it is the person in the wheelchair who counts, and not the wheelchair, and actually look at the person, we will get better at it from practicing it."

But how many people do that? 10 percent? Less? Fuck. Not many at all.

Now I have a new line, much more genteel, to redirect attention back to me: "Talk to me when you're talking to me." You can use it for the doctor or salesperson. If asked, say you just thought of it. Don't say you read it somewhere. Don't give me credit. Just use it. And it works every time.

Jul 10, 2015

For Immediate Attention: An Email Just Received

I just received an email from Douglas Lowell, President of Find a Cure Panel for debilitating diseases including stroke. Here is what he said:

Subject line: Cryptogenic stroke (which is known as a stroke of unknown cause) qualitative research

Find a Cure Panel specializes in patient research for rare and serious diseases and conditions including strokes.

Douglas Lowell says, "Patients who have no idea what caused the stroke and the doctor lists 15 reasons but can’t settle on one, and nobody agrees…that’s cryptogenic and as long as they do not have AFIB, then they qualify."

In the next few weeks, FACP has some patient and caregiver research for people who have suffered a cryptogenic stroke (which is also known as a stroke of unknown cause) but have NOT been diagnosed with AFIB.

It’s very easy to participate. It’s one confidential and anonymous call with one moderator talking about your experience. FACP gives you a 1800 number to call in and schedule the call at your convenience.

To qualify:
1) You must live in the US;

2) You must have suffered a cryptogenic stroke (stroke of unknown cause)

3) You must be over the age of 50

4) You must NOT have an implanted cardiac device (ie. Monitor or pacemaker)

5) You must NOT have been diagnosed with AFIB

6) Must NOT be using Veteran’s insurance.

If you do the call, FACP will donate $100 to a non profit of respondent choice.

If you are interested in participating, please email us at info@findacurepanel.com and reference cryptogenic stroke.

As my grandmother used to say in her broken English, "Oy. It couldn't hurt."

Jul 8, 2015

10 Things I Learned About Living as a Stroke Survivor

I live a life of peacefulness. I'm not rich and don't want to be. I am a Goodwill addict. And I've never accepted the stroke fully, but I'm close, getting to recognize that I am competing with myself--one more step to climb, yet another minute on the bike, an additional hour standing.

I have solitude now, but I'm not lonely. When it's quiet in my apartment, I am thinking all the time--of this blog, another book to read, another book to write. And the ten things I learned about living as a stroke survivor. Here they are:

1.  I find people staring at me, like an oddity of sorts among the "normals." I used to return their stare, angry and maniacal, but now, I like myself enough to not care.

2.  I'm worthwhile, making a contribution, albeit small, to society at large, by giving my knowledge about strokes to anybody who affords me the opportunity to speak. There is always a stroke group who loves to hear the stories behind a stroke survivorship.

3.  I pursue my love of reading to keep my brain at optimum level. If my eyes tire and can't read the words on the page, I use audiotapes.

4.  I always use the computer since I am a writer. But you don't have to be a writer to stay in touch with the world via the computer, with CNN or Google news, for example. My iPhone and my iPad do the same thing. 

5.  The last cry for help was the last. Having Life Alert, a direct connection to the emergency crew by pushing a button on a necklace that's always around my neck, makes me and my sons more comfortable. The cell phone, if it's charged, works the same by calling "911." (The operative word is "charged"!)

6.  Most of my falls were in my kitchen. But now, I bought a used wheelchair and a new cushion that I keep in my kitchen to prevent falling--sit, retrieve, and stand.

7.  I speak from the gut now to medical professionals, telling them, for example, if they missed a question on the "new patient" form or if they don't let me finish my thought, always preceded by, "With all due respect...."

8.  I like to be organized to simplify my life and to accommodate all my OCD (which many stroke survivors have) tendencies. So I have a file cabinet and a desk which I bought at Goodwill for $15.

9.  I set the alarm on my iPhone when I have to take medication by speaking to Siri, the intelligent personal assistant that comes with Apple products. It takes the guesswork out of remembering. I also set the alarm to keep from napping longer to avoid insomnia at night.

10. I live each day with appreciation for the love of my sons, their respective significant others, and the friends I have obtained coast-to-coast in America and around the world.

As I say in the intro to the blog, "I don't embrace the stroke -- not now, not ever -- but I accept it because I have two options: live with the stroke or... well, you know the alternative." 

I am here, alive, and trying my damnedest to keep it that way for a long time.