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.