Swallowing, a Simple Thing You Take for Granted

Almost 7 years ago, when I was brand new to the constantly changing, faceless group known as stroke survivors in the rehab facility, I was more absorbed with my lack of right-sided movement than with anything else. And I was on intravenous, plus a feeding tube for 5 weeks that injected "formula" directly into my gastrointestinal tract to keep me alive in name only. I had no appetite anyway because the noxious depression, accompanied by random seizures, kept on going, never stopping, even for mealtime.

After 5 weeks, I was subject to a swallowing test where, if I passed in the dimly lit room with an accompanying screen with video imaging to see if my throat muscles moved correctly, I could eat what is known as a mechanical soft diet, a collection of foods that disgusted me, just because: soft mashed potatoes smothered in gravy, jello, pudding, overcooked vegetables--those sorts of things, soft things. The first time, I failed the test. I wasn't swallowing correctly and my tongue was going awry, but I didn't even know. But a week later, I passed.

There was a separate section set up for all those who passed that test, the controlled feast as I called it, and across from each person sat a speech therapist taking notes on the progress while the people ate the mechanical soft stuff. It made me nervous and a little edgy, but I ate, albeit drooling with food occasionally falling out, little bits at a time to avoid choking, to keep the feeding tube removal on schedule.

So all tolled, 6 weeks, and then I could eat without the intent gaze of the speech therapist watching me, the feeding tube was out and, as I say in my book, the tuna sandwich, which I ordered first, never tasted so good.

You might take the act of swallowing for granted, but stroke survivors shouldn't. Neither should anybody else. Swallowing, as I came to find out, is a complicated process where any one thing could go wrong. Swallowing food or liquid involves moving the substance from the mouth, down the back of the throat, through the esophagus, and into the stomach.

The condition is called dysphagia, when a food or drink substance that is swallowed enters the airways and/or lungs, sometimes resulting in pneumonia. In most people, aspiration (or the sucking of food or drink) would produce a ferocious cough, often expelling what is in there. In stroke patients, food or liquid could go down the wrong way, and they wouldn't even be aware of it because of the paralysis. Thus, the test that was given to me.

Suzanne Kowler, a speech and language pathologist at St. Mary's Medical Center Acute Rehabilitation unit in San Francisco, says, "If all the muscles on one side are weak or paralyzed, it's going to be difficult to chew. They'll have something sticking on the right [or left] side of their mouth. Normally it takes about a second to swallow. Even a small disruption places that person at risk for aspiration into the lungs."

Through Kowler, I understood the test better. A diagnostic tool called a modified barium test, or videofluoroscopic swallowing study (VFSS), allows the therapist to watch a video in real time of a stroke patient consuming various liquids and foods.

"We can see if the food is going into the airway or not. And we can see when the patient coughs if they're effectively expelling food from the airway," says Kowler. The test also demonstrates which muscles are not functioning.

The National Institute for Health says aside from stroke, conditions like traumatic brain injury, cerebral palsy, Parkinson disease and other degenerative neurological disorders such as amyotrophic lateral sclerosis (ALS, also known as Lou Gehrig's disease), multiple sclerosis, progressive supranuclear palsy, Huntington disease, and myasthenia gravis could experience dysphagia.

The overwhelming research says to eat slowly and don't recline--or worse, lay flat on your back--when you eat. Eating shouldn't be a hazard. But you already knew that, didn't you?

One more thing: I couldn't drink water years after my stroke because it brought on a choking fit. The speech therapist said that water is "the thinnest liquid that there is--you have to drink a thicker substance." After that explanation, instead of apple juice which was my only drink for the next year and high in calories, I switched to ginger ale. When I found out a few months later the ginger ale had high fructose corn syrup adding pounds, I diluted it with water. And then more water was added to the ginger ale.

I went to a festival about a year after that, and all they had was water. I was so thirsty it left me no choice but to drink it, bracing myself for the coughing spell. And you know what? I didn't cough, even one time. I've been drinking plain water for about a year now, and that diluted ginger ale was a blessing, the training, it turns out, to drink water again.

Can't Do's and Can Do's: A Stroke Survivor's Thoughts

I was in one of those moods recently, a gloomy day sitting by the useless sliding doors that lead out to the decent-sized balcony. That's what put me in the mood to begin with, those useless sliding doors that you need two hands to operate. My son, who is 6'1", strong as an ox, and also has two hands, had trouble opening them, even with 3-In-One Household Oil applied.

So I started making a mental list of all the things I can't and can do anymore. My depression left me 4 years ago, and it was almost 7 years post-stroke, so I wasn't in jeopardy of succumbing to depression again. My right arm is paralyzed from my hemorrhagic stroke, and I use it for a visual aid. Ergo, the can't and can.

Besides opening those sliding doors, here's the favorite list of 10 can't do's:

• Clap at a good performance (slapping my thigh wouldn't be heard above the thunderous crowd)
• Knit my sons scarves (even with the imperfections)
• Play the piano (I know, I know, there are pieces for only the left hand, and I wish I had a dollar for all the people who told me that, but the piano is supposed to be played with two hands, knucklehead)
• Run like the wind (it's all relative)
• Cook something that isn't a sandwich (I always dropped things so I gave up)
• Open a package or a bottle without using my teeth (my dentist would kill me)
• Go to a buffet (it's self-explanatory))
• Do a manicure by myself (I could paint the right hand, but the left? Smear, smear, smear....)
• Style my hair (scary when I let it air dry)
• Read a paperback book (the book sometimes closes involuntarily and I lose my place)

Here's the favorite list of 10 can do's:

Me with the can do's

• Enjoy a movie (I can still hear)
• Sing along with Pandora (my best app for music on the iPhone)
• Drink water (I couldn't until recently because of the stroke. I coughed violently; now easy peasy because I trained my throat with diluted ginger ale, adding more and more water)
• Ride my recumbent bike (I do 50 minutes, almost my goal of an hour)
• Tie my shoelaces one-handed (albeit slowly but impressive)
• Feel comfortable in my skin (I don't know when that happened, but I'm glad it did)
• Walk through the halls (because I can)
• Pour my own tea from a manageable pot (I have a routine that just took some practice --take the tea of the burner, and have the cup at the ready, and put the tea on another cool burner. Amazon: http://www.amazon.com/gp/product/B004MH2Q8G?psc=1&redirect=true&ref_=oh_aui_detailpage_o01_s00)
• Commune with nature (in short walks)

And this is my very favorite of all:

• WRITE THIS BLOG (I'm not a touch typist anymore, but I'm also not in a rush)

Disability Etiquette: It's for "Normals"!

This post should be read by everyone without a disability! Those WITH a disability will chuckle as they read. Or cry. That leaves EVERYONE!

I use the transport chair when there's a lot of ground to cover, like Walmart or the grocery store. It's also the only chair my personal assistants could lift up. The only bad part: the transport chair is un-wheelable since its tiny wheels don't allow me to propel myself forward like a regular wheelchair.

Otherwise, I walk, getting as much exercise as possible, with my personal assistant trailing behind me with the transport chair in case fatigue sets in and I can't walk anymore. (I don't like caregiver, caretaker--which, by the way, is for a parcel of land, not a person, companion, or aide so I single-handedly upgraded the job to personal assistant, or PA).

There is an interesting phenomenon that I noticed for almost the past 7 years since my hemorrhagic stroke. I feel invisible while sitting in the chair while the people to whom I'm speaking always direct the conversation to my PA, like I'm talking funny or I'm mentally incapable of understanding them. Sometimes I say, "Talk to me when you're talking to me," which works for some people and, if they still persist in having the conversation with my PA, I'll stand up from my chair and say that line a little louder. That always works.

My most recent event is when I went to the bank to get a certified check just 2 days ago. The assistant manager persisted in addressing my PA as if it's her account, and I stood up and repeated that talk-to-me-when-you're-talking-to-me spiel.

"Yes, ma'm, I think you talk good and I completely understand you."

It's "talk well," not "talk good," but I let that one slide.

After that exchange, she addressed me, not my PA. See? Always works.

I was talking to my friend, Benadette, who is one of the "normals" and who used to work in a stroke rehab facility. We got on to talking about "disability etiquette" somehow, an expression I never heard before, and she suggested a lady in the hospital who was an expert on that subject, but I decided to do some research of my own. That term was right up my alley, given that event in the bank and so much more, and there were articles galore.

Here is what I found. They're divided into do's and don'ts and they're for "normals,"--aides, caregivers, and all of the health professionals--all of the people we "disabled" people have to interact with on a daily basis. My top 10 favorites are:

DO: Speak directly to people with disabilities, not to the people who may be accompanying them. (Did you get that, bank manager, grocery store clerk, doctor's office receptionist?)

DO: Be patient rather than try to fill in the gaps or speak for the disabled person.
(Why the rush? Give us time!)

DO: Think of a wheelchair or other mobility assistance as a part of the user's personal space.
(Why lean on it, push it without asking, put your feet upon it, all of which happened to me?)

DO: Avoid patronizing people with disabilities by speaking extra slowly or patting them on the head, hand, or shoulder.
(One man even used baby talk with me, and I don't think that was a come on!)

DO: Pull up a chair or bend down to speak to someone in a wheelchair to make us both on the same level.
(I always feel, when somebody towers over me, diminished!)

DON'T: Describe people with disabilities as "superheroes," "inspiring," "courageous."
(People with disabilities just want to fit in. You get it?)

DON'T: Ask long questions with several parts. Many disabled people are, or have become, a one-tasker.
(Don't take a chance. Disabled people, even "normals," would rather you asked the question without several parts, like focusing on the second part and forgetting the first part. I have to laugh at our debates between the Dems and the 'Pubs. I used to teach Public Speaking and can just tell when the candidates forget one of the parts! A look of despair comes over their faces!)

DON'T: Pet a service animal.
(Just don't. Ask first. The service animal is hard at work!)

DON'T: Describe people with disabilities as "handicapped," "disabled," "victim," "crippled," or "damaged." Use "people with disabilities" instead.
(People are not defined as being less than perfect. By the way, nobody is perfect).

DON'T: Stare. We may be funny to watch, but still....
(Enough said!)

If people used their common sense, just their God-given smarts, they'd know most of these points. If that's true, and I really think it is, then why do they act stupid when it comes to "people with disabilities"?

As for me, (and I hope you, too), I am not defined by my disabled state. I just want to be one of the bunch, who forgets the key to my apartment a millisecond after locking the door, who becomes ditsy when my favorite group, Journey, comes on the radio, and who gets all mushy when someone wishes me a Happy Valentine's Day. Just one of the guys. Don't know why it's not possible.

Aspirin Desensitivity: I'm One of the 2%

It all started with Motrin.

About 30 years ago, I took a Motrin pill for back pain. About a minute later, my throat almost closed up, I started wheezing, and I had labored breathing, finding out later I was doomed to go into anaphylactic shock. But I didn't. The kids, then10 and 5, were downstairs playing, but I couldn't even call to them for help. I just waited for death, but luckily, the trauma passed a half hour later. I was 37 then. Lucky 37.

I hadn't taken aspirin since I was a kid, and Tylenol was recommended by my doctor anyway. Aspirin is an NSAID (Nonsteroidal anti-inflammatory drugs) and Motrin, too, over-the-counter medications that can be used to relieve mild aches and pains, and reduce inflammation. So apparently, I was allergic to NSAIDS. No big deal--until now.

I found out about 10 years later after that trauma that I had Samter's Triad, a condition that consists of only 3 things in conjunction: asthma, NSAID allergy, or commonly known as aspirin allergy, and nasal polyps. Samter's Triad was confirmed again about a year ago when I went to Dr.  Lee, an ENT (ear, nose, and throat) expert for nasal polyp removal.

She said I am under control with my asthma by taking Advair every day, but there is a doctor who can most likely rid me of aspirin allergy in order for the nasal polyps not to grow back. I thought, I had the polyps removed 3 times in Philadelphia, but I wouldn't have to do it again if I was desensitized to aspirin. Huh!

But, and I'm extrapolating, aspirin, too, is a blood thinner and I'm already on Warfarin , a blood thinner as well, and there is a risk for bleeding. That was about the 100th time I heard that--risk for bleeding--because I had a hemorrhagic stroke and that means bleeding in the brain.

I went to see Dr. Petrov as she suggested, an immunologist with smarts.

The overwhelming majority are helped by aspirin desensitivity, he said. I seen to recall only 2% are not desensitized. With the odds in my favor, I had an appointment for December 7 when I would go into the hospital for 4 days with a heart monitor and be observed. The heart monitor would be used if I stopped breathing, for example, monitored constantly by the nurses on the heart floor.

I'll give you the timeline because I kept a diary of the events and here it is. Stop here if you are faint of heart.

December 7:  Went into hospital in the evening to desensitize me from aspirin allergy. Desensitization would start early the next morning.

December 8:  Took 30 mg at 8am progressing to a baby aspirin, or 81 mg, throughout the day. Went through a rough spot as I was going through desensitivity for 12 hrs.

December 9: Called the nurse at 2am and said I was leaving in the morning. Desensitivity too much. She said desensitivity is rough but I had to hold strong. I repeated the baby aspirin at 8am. Progressed more during the day to an adult aspirin. Wheezing was off and on, but the energy level was at its lowest. Had to sit on a recliner in the hall before going back to my room.

December 10: Released from hospital with, presumably, no aspirin allergy any longer. Told to take 2 baby aspirin in the morning and again at night. Not convinced. Time will tell. Dr. Petrov's associate said that if I stop the aspirin for more than 24 hours, I would have to repeat the hospital procedure all over again.

December 11: I had more-than-usual fatigue. Coughing and wheezing.

December 12-13: I was occasionally breathless and minorly coughing, still off and on wheezing.

December 14-26: I thought I had contracted the flu somehow.

December 27-January 6: Still had lingering symptoms, but I thought I had contracted a cold.

January 7-14:  Left for Portland for a family reunion and started to wheeze there. Coughing and extremely fatigued.

January 15: Left for home and thought I had contracted another cold.

January 16-20: Started getting more breathless, increased wheezing and coughing, fatigue continued.

January 21: Went to give talk to Stroke Support Group and had nurse co-chair deliver my speech. After the event, went to ER on advice of nurse where they found nothing through blood tests, and wasn't admitted. Told them about the aspirin desensitivity, but no knowledge surfaced.

January 22-26: Still panting, coughing and wheezing intensified, and got the feeling it was the aspirin. "I'm poisoning myself by still taking aspirin," said to no one in particular, but continued with the aspirin. 

January 27: I finally stopped the aspirin myself in the morning. Went to a different ER where the doctor who gave me aspirin initially practices--same symptoms but increased intensity. They gave me a chest xray, chest scan, and blood tests; admitted for observation.

January 28-29:  Status changed to in-patient where full-blown wheezing, intense coughing, panting like a canine, and lethargic prevailed. Doctor confirmed I was one of 2% the aspirin desensitivity doesn't work for.

January 30: I was released with new medications--narcotic cough medicine, Predisone to reduce the inflammation, and Mucinex to cough up the congestion. Today, I see an improvement. Little wheezing, mild coughing with once-a-day flare ups, no breathlessness, no fatigue. 

January 31-today: No wheezing, just a rattle in the chest from congestion, still coughing at random times, nothing else. Energy restored!

I'm going to see the lung expert who will once again assure me it's not pneumonia (I already know that) and Dr. Lee to convince her that the worse that happens is I'll have to repeat the nasal polyps surgery some day, now that the aspirin and other NSAIDS allergies are back to stay--forever, I imagine.

I don't hold Dr. Petrov responsible at all for the unsettling events that took place in the last 2 months. He said, as I recall, 98% would be desensitized. The odds of aspirin desensitization were in my favor. It was a gamble and I lost. But at least I tried. Trying means not giving up. And trying is the only thing that matters.

Status Time: Almost Seven Years Later from the Stroke

It seems like a few years ago that I had the stroke. But it's almost seven years ago. April 8, 2009, is the date that is burned into my consciousness. The date follows me around, like the devil that it represents. Playing piano by ear, knitting scarves, clapping when required, all gone. People say, "Be positive," but sometimes, I just can't. A stroke doesn't make me stronger. It just reminds me how fragile the human body is. Some people say "re-birthday" when they celebrate the date on which the stroke happened. "Re-birthday?" Give me a break.

That being said, looking back, I have accomplished some things that make me know that I'm progressing. There is my book, "The Tales of a Stroke Patient," published in 2012, that documents all the time before, during, and after the stroke. I liked writing the book. For me, it was a catharsis, a chance to scream about awful CNAs, nurses and doctors who pretended not to hear me, all the time keeping the names of the rehab facility and the nursing home out of the book. (It was Bacharach Institute for Rehabilitation and Absecon Manor Nursing Home, both in Southern New Jersey. I don't give a shit now).

I started a blog called the same as the book, "The Tales of a Stroke Patient," in 2010. I still write it, as long as there are people to read it. (There are 15 million strokes a year worldwide so I imagine I won't run out of readers). Currently, I have almost 112,000 people reading my blog, though some are faithful fans who read it several times. My dashboard tells me I'm read in 6 out of 7 continents, Antarctica the holdout. I don't have anything against the Antarcticans. They are probably busy with global warming.

This month, the University of Pittsburgh Medical Center and I are starting two new stroke support groups (well, one's a group that needs to be resurrected and the other is new), and I am the leader in both. My mission is to help stroke survivors get an improved sense of self, to achieve for them what I couldn't achieve for myself back in the day: dignity, self-esteem, and empowerment. You'll be amazed at the speakers we'll book.

Nobody understands a stroke survivor aside from stroke survivors.
People write to me at least once a month saying, "My [husband, wife, friend] had a stroke and it's so difficult to talk to my [husband, wife, friend] because of the anger and frustration coming out."
"Of course," I say. "How would you like your life turned around in just a millisecond?"
Some people get it. Most don't, and that applies to health care providers and caregivers, too.

I fell, sometimes hard, breaking different parts of my body, I'm misunderstood though that's getting less and less, I drop things that need two hands to hold, but through it all, I'm still here. Why? It's like I told you. I have a mission, and it won't be completed any time soon. I'm moving to Portland, OR, soon, and the mission goes with me. Always the mission....

New Year's Resolutions for Everybody--EVEN ME!

I think of myself as more "normal" now, not altogether damaged by the stroke, thanks to the help of my therapist, Theresa, who says, "Everyone is damaged. It's called 'being human.'" I believe her now. And thus, even though I write the blog "The Tales of a Stroke Patient," I'm not as damaged as I thought. I now say, "Damage is a state of mind." I believe that, too.

I call this post "New Year's Resolutions for Everybody" because I think of myself as just a human now, one of the bunch, not especially damaged, struggling with life's obstacles put in my path to make me stronger. "Deal with it," I now say to myself. "Get over it." "Stop it." Expressions like that. So now, having my life almost in order (I'm still seeing Theresa though), on with my resolutions! As my mindset has changed, I promise myself:

#1: to revise my bucket list to include things, with assistance, like shopping and visiting favorite people in New York and traveling across the United States. In fact, I'm going to travel in the spring, headed for Nashville again, my favorite place to be with the Grand Ol' Opry's headliners, musicians filling the streets on Broadway, and southern cooking everyplace.

#2: to lose the 20 lbs I gained and stay thin forever. I realized the weight gain when I attempted to stand up from the sofa and it took me two tries. It's only a 20-lb loss to achieve my goal, but a thin person can move around a lot easier. But you already know that. Just before I got out of the hospital after 15 weeks in, I thought I was totally familiar with the layout of the therapy rooms. But much to my surprise, hidden behind a support column, I discovered a full-length mirror I hadn't seen before. I was surprised to see how a 20-lb loss made such a difference in how I looked and moved. I'm determined to do that again.

#3: to read faster. I had double vision right after the stroke that lasted for about 6 weeks. I covered my good eye to get the weak eye stronger and it worked. Now 6-1/2 years after, I read like I always did, reading every word like a recitation, but I want to improve the speed. I'm forcing myself to take in a group of words now and reading it all at once. Look at the picture to the right that explains the power of the brain. It takes practice so it rates as a resolution.

 #4: to use a new word every day, especially with dysarthria. There are several websites that offer word-a-day options.

http://www.oed.com/
http://www.merriam-webster.com
http://wordsmith.org/awad/index.html

#5: to enjoy the moment--any moment. I don't know when it exactly happened, and it wasn't recent, but as soon as I accomplish something, I'm on to the next thing. The memory fades. (I don't do that with friends--only experiences. I like those people that I consider friends). But let me give you an example. My second book, The Tales of a Stroke Patient, was published in 2012, and the next day, I lost the excitement and thought about the next book I would write. So in 2016, I'll concentrate on being happy in the moment. (My guess is I will not keep this resolution because "finding the next thing" is part of my personality. But I'll try).

Last year, I did 10 resolutions, and the year before that the same. I'm not tired of writing now, just satisfied with the new resolutions. Send me yours if you have a chance.

So this will be it until next year, just 12 days away. Happy New Year to all those who celebrate it. If you don't celebrate it, you're not missing much. It's the biggest non-event of the year! But resolutions, on the other hand, last the whole year. I have until December 31, 2016, to satisfy each of them. If I don't, so be it. Resolutions are between me and, well...me!

Dementia, Alzheimers and Stroke Survivors: Is There a Connection?

I always wondered, if Ronald Reagen, the 40th President of the United States, could get Alzheimers, with a plethora of decisions and strategies he had to accomplish, then anyone could get Alzheimers. When he died on June 5, 2004, at 93-years-old, it was pneumonia that killed him, a complication of Alzheimers. He wrote in a public statement early on in the disease in 1994, "Unfortunately, as Alzheimer's disease progresses, the family often bears a heavy burden." And indeed it does. My mom had Alzheimers.

Age is known as the most significant factor for dementia, the early stage of potential Alzheimers. Though it is uncommon to get dementia before 65, it happens. After 65, the likelihood of developing Alzheimer's disease doubles about every five years: 1 in 14 people over the age of 65 and 1 in 6 over the age of 80. The risk factors include increasingly higher blood pressure, changes in the immune system, and an increased incidence of some diseases including stroke.

But what is the reason, I ask. As it turns out, there are multiple reasons.

1. Folks who experience depression are more likely to develop dementia. STROKE SURVIVORS EXPERIENCE DEPRESSION.

2. People who have had severe head injuries are at increased risk of developing dementia. STROKE SURVIVORS ARE CONSIDERED BRAIN INJURED.

3. Diet can affect people's risk of developing many kinds of illnesses, including dementia. Too much saturated fat (read the labels) can cause narrowing of the arteries, making stroke more likely. STROKE SURVIVORS OFTEN ATE TOO MUCH SATURATED FAT.

4. Exercise helps to protect against many conditions, including dementia. Regular physical exercise helps to keep the heart and vascular system healthy. STROKE SURVIVORS WERE OFTEN COUCH POTATOES.

5. Smoking has a disastrous effect on the heart, lungs and vascular system, including the blood vessels in the brain. STROKE SURVIVORS OFTEN WERE FORMER SMOKERS.

6. Drinking alcohol in excess increases the risk of developing dementia and ultimately Alzheimer's. However, research suggests that light amounts may protect the brain against dementia and keep the heart and vascular system healthy.
STROKE SURVIVORS WERE SOMETIMES HEAVY DRINKERS.

(There is little research that "brain games" such a crossword puzzles lighten the risk of getting a stroke or of developing dimentia. Remember Reagen? He had to do a lot of thinking when he was President, like ending the Cold War).

And then there are the rest of us, who don't why the stroke occurred at all. I'll take a guess that what caused my stroke all began with an antibiotic. But I don't really know.
(http://stroketales.blogspot.com/2014_07_03_archive.html)

So the takeaway is this, to avoid a stroke or any other complication such as dementia or Alzheimers:

Do you know anyone who suffers from depression? Suggest a therapist.

Do you know anyone who is involved in activities that could cause head injuries? Get another activity.

Do you know anyone who eats junk food? Tell them the risks.

Do you know anyone who doesn't exercise? Urge them to get off their butts.

Do you know anyone who smokes? Advise them there are medications to stop.

Do you know anyone who is a heavy drinker? Encourage them to lighten the load.

I know, I know. Easier said than done. And they may still get a stroke or dementia or Alzheimers. But there's no harm in trying. Strokes suck. But so do the other two.

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."

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 a standing lamp for cheap at places like Goodwill or thrift stores in your area.

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?

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.