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. 

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, depression)

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.

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.