On Thursday April 14, 2016 I reached a turning point regarding my disability. However the story behind this incident had been coming for a very long time. It’s taken me four days to write and rewrite the story. I can’t just tell what happened. I have to put it in the context of events that event evolving for years.
Good News/Bad News
Having Spinal Muscular Atrophy Type II is always been a sort of “good news/bad news” kind of situation. Although I’ve often described it as a type of muscular dystrophy, it doesn’t progress as rapidly or severely as the most common type of MD which is Duchenne muscular dystrophy. All of my friends that I went to school with who had Duchenne muscular dystrophy died in their teens or early twenties. Actually SMA technically isn’t muscular dystrophy. It is more closely related to ALS or motor neuron disease most famously contracted by Lou Gehrig and Stephen Hawking. Both SMA and ALS affect the motor neurons and are progressively degenerative. But again the good news is that SMA does not progress nearly as rapidly as ALS. Having known people who were spinal cord injured, I counted myself lucky that my disability was not from some injury. They seem to have the added trouble of the reality that they had once been able-bodied and then lost that ability. Although I’ve had to struggle with the slow progression of by disability, I’ve always had some severe kind of disability. I haven’t had to deal with the sense of loss as much as they would. Similarly I’ve counted my blessings that I don’t have the communications difficulties of someone like my late friend Christopher Lee who had severe cerebral palsy and could not talk so that the average person could understand him. I guess one of my coping mechanisms has been a “glass half full” approach to my disability.
The bad news about SMA is that even though it’s not as bad as a number of other kinds of related disabilities, it does have its serious challenges and it is decidedly progressive. Last summer I turned 60 years old and that caused me to reflect on the progression of my disability. Also the fact that I could no longer drive my power wheelchair using my hand on a joystick has heightened my sense of the progression of my disease. It’s taken me nearly a year to get a new wheelchair that I operate and even then it’s not going to be easy. I could see the inability to drive my chair looming in the distance for many years. I knew it was coming and I put it off as long as I could before giving up on using my hand on the joystick and going to rate mouth controlled system.
Other than the wheelchair driving difficulty, another ticking time bomb of the progression of my disability has been swallowing difficulties. Because my disease progresses so slowly, it’s difficult to pinpoint a particular point in time when a new symptom actually occurs. The problems sneak up on you in the way that you don’t really notice. It’s a bit likely apocryphal proverb about putting a frog in a pot of water and turning up the heat slowly. If you turn it up fast, the frog jumps out. If you turn it up slowly the frog will cook. My disability “turns up the heat” on me very slowly.
At some point perhaps 25 or 30 years ago I was noticing that food would stick in the back of my throat. I didn’t really choke on it most of the time. There would just be a little chunk of ground beef or perhaps a piece of hotdog about the size of a pencil eraser that would get caught somewhere in my throat and could stay there for hours. It would get stuck there during supper and many hours later when I would go to bed, as my head would get tilted or my neck twisted at a strange angle, it would get dislodged and I would spit it out or swallow it again. As long as it was something somewhat mushy or rubbery like a piece of meat I would not choke on it and it would not give any problems except for a funny feeling in my throat. My normal diet does not include raw vegetables or salads. I just never had a taste for them. But something like the hardshell of a piece of popcorn would easily get caught and because it was hard with rough edges. I had to give up even popcorn altogether so long ago I don’t recall when I had my last piece.
Somewhere along in my 30s, I had a nasty case of pneumonia that landed me in the hospital for over a week. On two different occasions during that stay, they had to stick a tube down my throat and suction the gunk out of my lungs. While the doctor was doing that, I asked him to see if there was something unusual in my throat as he put the scope down it. It always felt like there was a shelf or a flap where the food would sit with it would get stuck. He reported that he saw nothing unusual. During the procedure a couple of times he asked me to swallow and I could not. His attitude was that I was being uncooperative or nervous or something. He managed to do what he needed to do anyway. I wasn’t uncooperative. I just simply could not swallow with my head in that position.
I think it was shortly after that suctioning situation that I became more concerned about my swallowing problems. It was becoming more likely that I would choke on certain foods. Because my lungs are very weak to begin with it is very difficult for me to cough up anything when I do choke. When it gets really bad the only way I can deal with it is to lay down in bed flat so that I’m not fighting gravity. Then I’m able to cough up what I need to cough up.
After discussing it with my doctor, we decided I should have a fluoroscopic swallowing study. It’s a type of real-time x-ray using a video screen. They have you chew up and swallow food that has been laced with barium. That makes it show up on x-rays screen. It should have been a simple procedure if I could’ve done it sitting in my wheelchair but instead they had to sit me up on the edge of an exam table. Mom and dad had to hold me in position and hold my head up straight while we did it. The x-ray technician was a real asshole. I would try to tell her something about what I was needing and she wouldn’t stop to listen to me. My mom chewed her out really good. Nothing would set my mom off on an angry tirade than if someone didn’t listen to me or treat me with respect. This particular incident was one of my favorites. Anyway the end result was that the report said I was swallowing terribly. The recommendation was that I should stop eating solid food immediately. My response was to laugh and basically say fuck no. They said that when a normal person swallows, the esophagus raises up and elongates. Mine isn’t doing that at all.
I just did a Google search and a YouTube search and found the following video that illustrates exactly what they are talking about. I wish I had a video of my actual tests to show you. This video is not me but if you watch when the person swallows you can see the upward motion that they were talking about when the person swallows. Apparently I don’t do what you see in this video.
The end result of all of this was that I just learned what to do and not to do when I’m swallowing. I’m pretty sure that by this time I had already given up on things like popcorn. But I started being more careful about what I would eat and how I would eat it. For some reason I can eat ordinary potato chips okay however corn chips like Doritos chew up to be more gritty and present a choking hazard. Fortunately I’ve not ever been a big fan of corn chips. If there was something gritty that I wanted to eat it would help if I would chew it up with something else like bread. The doughy food protected my throat from the hard scratchiness of something like bacon. Even as my throat has gotten worse over the years, bacon is one of the things I’ve not been able to give up completely. I saw standup comedian at one time on TV talk about his fear of flying. He said that every time he gets off of an airplane safely he considers it a failed suicide attempt. I thought that it was so funny that I adopted that phrase for myself. Every time I swallow bacon I consider it a failed suicide attempt 🙂 Some days bacon is worth risking your life.
I mentioned earlier that when I do get a coughing spell sometimes the only way to get over it is to lie down. That can make it especially dangerous if I’m not somewhere where I can lie down. On a couple of occasions I’ve had choking spells in dangerous situations.
I recall one time on Thanksgiving at my sister Carol’s house I got a piece of turkey caught in my throat. With the help of my brother-in-law Joe, dad had to pick me up and laid me down in her bed until I got things coughed up. Getting me out of my chair and into a bed without my Hoyer lift is difficult but not impossible especially if you have two people to do it. I don’t weigh so much that a single strong person could not lift me however it’s harder on me to be lifted by one person because my arms or legs to get tangled up in a weird way. Getting me back into the wheelchair is a bit more difficult because as you lift me, my back brace shifts around. When I’m getting into the bed I don’t care how the brace gets messed up. Typically even if you pick me up with a Hoyer lift, once I’ve laid down we had to redo the brace from scratch because it gets shoved out of place. The process of putting me back in the chair with the lift doesn’t mess up the brace too much. I start with the brace on me lower that it should be and as you lift me it tends to slide up hopefully into the right place. When lifting me by hand the brace slippage is more unpredictable. I usually end up sitting uncomfortably after such an incident. Even under ideal conditions if I had to lie down and get back up again during the day it never feels like the brace gets back on me properly the second time. It’s just something about twisting my body in unusual ways in the middle of the day that messes me up.
The Thanksgiving incident wasn’t too bad because I was in someone’s home and both my dad and another strong person were available to lift into a nearby bed. A somewhat more frightening incident occurred one time when I was out to dinner with my friend Judy Chapman. She has a much better memory for dates than I do and after discussing it with her recently we concluded this was probably sometime in the fall 1999. We went out to eat and then we were planning to visit her dad in a nursing home or hospital. I got something caught in my throat and began choking.
I suppose I should explain that when I say “choking” it isn’t one of those situations where your air gets cut off completely and you start turning blue and someone has to do the Heimlich maneuver on you. It’s more of a situation where I start coughing because the food is scratching my throat. Your natural defense mechanisms create lots of mucus to help you try to clear whenever is caught. The mucus does help dislodge whatever I’m choking on but because my lungs are so weak I cannot cough up the mucus. Of course your nose starts running as well and you start blowing those nasty snot bubbles which looks really gross in a public place like Shapiro’s Delicatessen. Sometimes it’s just a case of mind over matter where you have to will yourself to not cough or gag. Both are an automatic reflex that with concentrated effort one can override mentally. We got back in my van and went straight home without going to see Judy’s father. On another occasion I did get to visit him in the hospital before he died. As a side note… He died on December 1, 1999 which was the same day that my dad had heart bypass surgery in the same hospital. While I was waiting on my dad’s recovery, I went upstairs to see how Judy’s dad was doing. He died just a few minutes before I arrived. At least I did get there to give Judy and her family a hug shortly after that.
I can’t say for certain that the dinner date with Judy was the last time that I ever ate out in a restaurant with a friend but it might actually have been the last. I know for certain that was not the last time I had ever eaten out in a restaurant with family. We would routinely stop for dinner at the Steak’n’Shake on our way to the lake. I would try to be especially careful swallowing because we usually stopped at the one on the south side which was a good 30 – 45 minutes from home or the lake. In recent years the only place I’ve eaten out has been the Golden Corral Buffet or Denny’s or Applebee’s all of which are just 10 minutes from home. I’ve avoided a lot of pitch in dinners at church. When I was managing the poker tournaments at the church festival I was always careful what I would eat. Sometimes dinner at the festival consisted of nothing but French fries because they are mushy enough not to get caught.
The incidents I’ve been describing have all been more than 15 years ago. The swallowing study was probably 20 or 25 years ago. Over all these years I’ve just been managing the situation as best I can. Gradually certain foods have continued to drop off my menu. Within the past couple of years I’ve had to give up one of my favorites which is steak. In order to get food to go down I have to chew it up so thoroughly that it takes forever sometimes just to get down a single bite. If you chew steak that thoroughly it eventually loses all flavor. And unless it is extremely tender steak of the highest quality I couldn’t get it down at all. Normally we would only eat steak on special occasion but I finally had to tell dad a few years ago that I was giving it up altogether. The frustration I had in trying to swallow it was ruining any pleasure I was getting from eating my all-time favorite food.
Somewhere along the way I corresponded online one time with a guy from Australia who also has Spinal Muscular Atrophy. He said that he was 60 years old. I don’t know how old I was at the time but I’m going to guess 45 or 50. I remember thinking that it was good to hear that a guy with SMA made it to 60. But I don’t think 60 was extremely far off. I searched through all my emails back to 2004 and cannot find the correspondence. I must’ve been using a different email system back then. He said something that really surprised me. He wasn’t eating anymore. He had to have a gastric feeding tube inserted into his stomach. They do a minor surgical procedure that inserts a tube into your abdomen and into your stomach. You have a large syringe approximately an inch in diameter to which you pour or force with a plunger some sort of protein liquid.
A few years later after this correspondence my mother had to have a g-tube because the radiation treatments for her cancer had irritated her esophagus and she could not swallow anything. She had problems that the syringe didn’t want to stay connected to the g-tube unless you held it in place. My dad put to work his sheet-metal maker skills and made a little bracket to hold it in place. Unfortunately mom was pretty weak and she would routinely fall asleep while she waited for the liquid to drip into her. She ended up spilling it anyway on many occasions. Fortunately she only had it for a month or two.
Another foreshadowing of what was to come occurred on February 2, 2006. According to IMDb.com that was the air date for an episode of “ER” season 12 episode 13. It featured a guest star appearance of one of my favorite actors James Woods. He typically plays brainy, self-confident, sometimes arrogant characters. I wonder why I like those kind of characters 🙂 I also liked his starring role as a smart, arrogant, lawyer in a short-lived TV series called “Shark”. This performance for ER was a typical character for him. He played a college professor Dr. Nate Lennox who had ALS. Actually as I was preparing this blog I had thought his character had SMA but when I looked it up I saw it was actually ALS which as I had previously mentioned is similar. (I was confusing it with an episode of “House M.D.” which featured a character with SMA). Woods’ performance in that episode of ER earned him an Emmy nomination for Best Guest Star. He should have won but didn’t.
The episode titled “Body and Soul” was told as a series of flashbacks as the professor made various trips to the ER. Each visit showed a different stage of the progression of his disease. About 15 minutes into the episode it shows an incident where he is at a fancy dinner where he is about to receive an award. He’s in a wheelchair is being fed by his caregiver. She is a former student and assistant named Fran. (Hell of a coincidence isn’t it?) Just as they are announcing she is the winner of the award he begins choking on his food. They rush him to the ER. The following conversation takes place…
ER doctor: Well, his chest x-ray is negative for aspiration. You got lucky, Nate.
Professor: Yeah. (sarcastically) I’m the luckiest man on the face of the Earth.
ER doctor: It’s time for a feeding tube.
Professor: No, it’s not.
ER doctor: Well, your chewing and swallowing muscles are getting pretty weak.
Professor: Fran will have to cut my meat smaller (looks at Fran) …won’t she?
Fran: Takes him an hour to eat a meal.
ER doctor: He’s lost 10 pounds.
Professor: More like 5. (sarcastically) The rest is water weight.
ER doctor: Weight loss accelerates the progression of ALS. The extra calories from the tube feeding will mean increased strength more energy and longer survival.
I can attest that cutting your meat smaller doesn’t really help and apparently the professor knew that. He agreed to have the G-tube installed. I already knew that there was probably a G-tube in my future. The sentence that was a bit of an eye-opener for me was with his caregiver friend says “Takes an hour to eat a meal”. I had not really thought about that before. I thought to myself that when it was taking me an hour to eat a meal I would know that I needed the G-tube as well.
In other flashbacks earlier he resisted getting a CPAP to help him breathe at night. In another flashback when it came time to put in a trach because he couldn’t breathe at all there was a difference of opinion as to whether or not he consented to have the trach installed and to be put on a ventilator. I had already been using a CPAP for many years and had seen the benefits of it. I was already prepared for the possibility of a ventilator some day and while I don’t look forward to it, at least I know it’s coming. I won’t spoil the rest of the episode but it has a very dramatic conclusion with a plot twist. If you ever catch it on a rerun be sure to check it out. In preparation for this blog I purchased a copy on Amazon prime video for $1.95. I can show it to you. It is brilliantly well-written and acted.
I Don’t Give a Spit
One of the consequences of all of this isn’t just about eating food. You probably don’t think about it but hundreds perhaps thousands of times a day you swallow spit. My mom had a problem one time one time unrelated to her cancer in which she got a pill caught in her esophagus. It was not in her windpipe so she could breathe okay. She just couldn’t swallow. At first when it was stuck she just tried swallowing lots of water but eventually her esophagus got so irritated that it closed up completely and she couldn’t swallow anything. She ended up having to go to the ER and they were able to go down her throat and get it dislodged. But it really called home for all of us who heard about it the fact that you do need to swallow spit on a regular basis. Until she got it taken care of she had to carry a cup to spit into.
For some reason my saliva is exceptionally thick and viscous. When I brush my teeth and I need to spit, we have discovered it’s easier if I spit into a drinking straw rather than to try to lean forward and spit into a bowl or a glass. No matter how hard I blow into the straw as I finish spitting, when you pull the straw away from my mouth there is always a long strand of saliva that stays connected. It’s not uncommon for me to produce a strand more than a foot long. I have often joked that I have industrial-strength spit. I keep threatening to donate a sample to NASA or some other scientific research agency to see if they can make some sort of superglue or lubricant out of it.
As I said earlier, you probably don’t think a lot about swallowing spit but I’ve had to give it a lot of thought. It seems that when I tried to swallow something I could only get down about two thirds or three fourths of what I’m trying to swallow. When it’s something solid it seems like the only way to get something to go down is to have something in front of it to push it back down. That means there’s constantly something un-swallowable in my mouth all the time and when I’m not eating that something is spit. If I leave it resting and in its un-swallowed location at the back of my throat then there is a risk that if I inhale quickly through my mouth it would get sucked into my lungs.
Most of the times that I’ve choked on food it was because there was a small crumb resting at the back of my throat and if I inhale quickly through my mouth it would get sucked in. One of the strategies I’ve had to develop while I’m eating is to pay close attention to how I breathe. Talking is also a problem. We all learned “”Don’t talk with your mouth full” but the proverb should say “Don’t talk with anything in your mouth”. The problem is when you can only swallow a percentage of what is in your mouth, your mouth is never completely empty. Because my lung capacity is so small, it is very rare that I can get out a complete sentence without having to gasp for a breath in the middle. It’s usually during one of these midsentence gasps that I’ve lost concentration about what’s in my mouth and something gets sucked in.
On various visits to the hospital they have used a suction device just to clear my mouth of spit or phlegm. At first I thought they were calling it a “yanker” because it would yank the stuff out of your mouth. Actually it’s called a “Yankauer”. According to Wikipedia it was “…developed around 1907 by American otolaryngologist Sidney Yankauer (1872-1932), the Yankauer suction instrument has become the most common medical suction instrument in the world.”
In recent years as it has become more and more difficult for me to empty my mouth by swallowing. I’ve considered trying to get a suction device. At one point I talked to my lung doctor about it and mentioned the extreme viscosity of my saliva. My chronic sinus problems make things even worse. He seemed reluctant to sign off on purchasing such a device. He suggested using an expectorant medicine like Mucinex or Robitussin. For many years now I’ve been using Robitussin DM which contains not only an expectorant but a cough suppressant which helps alleviate the scratchy feeling and to suppress my cough/gag reflex. I discovered that the sugar-free Robitussin DM isn’t as thick and syrupy as the usual kind and is easier to swallow. I’ve never been a big fan of cherry flavor syrup anyway.
The constant collection of spit in my mouth has been especially troublesome in recent years while trying to sleep. My mouth tends to dry out at night which helps alleviate the problem somewhat. There have been a number of occasions if I was lying on my back that I would wake up coughing because the spit had gotten into my windpipe. Most of the time I lie on my right side and the result has been a nasty pool of spit on my pillow. When I’m on my side we have been putting a dry washcloth tucked under my cheek which makes it easier to clean up later on.
During the day one of the strategies to manage the spit is to swallow as much as I can. Then I retrieve what’s left over from the back of my mouth and tuck it into my right cheek. I know that it looks weird. It adversely affects my speech. Sometimes it messes up my speech so much that my dictation software can’t understand me. Stuffing the spit in my cheek is basically a gross thing to do but it has been the only coping mechanism that I have come up with. On many occasions friends have offered to help me spit it out but I have to explain that if I did that, I would just have to do it again every 10 minutes. Also the quantity of spit we are talking about is more than could be easily put into a tissue or handkerchief. I could carry around a cup with a straw to spit in but that I would require dealing with the foot long strands of saliva dripping all over the place.
The bottom line is, spit management has become increasingly troublesome prospect on top of all of my other swallowing and coughing difficulties.
The Sinus Connection
Unless I lose concentration or something unusual happens, I have been managing the food choking issues pretty well in recent years. However the sinuses have complicated the situation. I’ve always had allergies during the summer. There is a particular flowering bush called “Rose of Sharon” that has a beautiful purple flower with a fuzzy yellow center that is devastating to me. It usually blooms in July around my birthday. I may be allergic to other kinds of pollen but I know that one for
[image rose of Sharon]
Additionally having a CPAP machine blowing air up your nose all night long tends to aggravate your sinuses. Furthermore I take Flomax prescription medicine for my prostate to make it easier for me to urinate. Flomax doesn’t just make your urine flow. Apparently it makes your nose flow to the max as well. A runny nose is a well-documented side effect. All of these sinus situations cause drainage in my throat and tend to make the thick saliva worse.
At some point I’m guessing maybe two years ago I started having coughing spells even when I wasn’t eating. My sinuses would drain in my throat and make it scratchy. That would cause a mucous reaction which would also make my nose run worse which would cause more drainage which made it worse and worse. Sometimes the spells were associated with eating and possibly caused by a crumb but often it would come out of nowhere. These incidents were often more severe than the food related incidents as they would worsen much more quickly. At first I would try to fight them off by willpower but the mucus was so thick that I would find myself unable to breathe at all. I can’t begin to count the number of occasions where we rushed to my bedroom to lie me down and we barely got me there in time before I was in full respiratory arrest. Once I lie down and catch my breath I can usually cough everything up and be ready to get dressed and up again in about an hour. If it occurs in the evening I usually just stay in bed. My recent adaptations of being able to use my laptop computer while in bed have lessened the impact of that decision to stay down. I’ve had to train myself to not wait until I’m in such dire distress before giving and going to bed.
A year ago when I started shopping for a new wheelchair we made the decision to get one that would tilt and recline. Not only would it solve the problem of what to do if I choked when I was away from home, our hope was that reclining even at home would be easier. It’s quite a process in that you have to hook me up in the Hoyer lift, transfer me to bed, and remove my back brace. Removing the brace makes it easier to breathe and the brace to be completely redone before getting me back up anyway. The way my bladder operates, within a minute of lying down I have to pee. When I’m lying down it’s easier to prop up the urinal if you pull down my pants. Even if I don’t pee, we had to take my pants down to get the brace back on anyway. Because we have to roll me around the lot to get my brace back on later it’s easier to roll me with my shoes off so I take them off as well. Basically I get 95% naked just cough up a piece of food or gunk in my lungs. Avoiding all that with a reclining chair was going to be a lot easier and of course it might actually save my life.
The day that I did a test drive of a reclining chair, while I was reclined I coughed up a small piece of White Castle Hamburger that had been stuck in the back of my throat for a couple of hours. It was not bad enough that I was choking on it. But lying back in the reclining chair and being able to get it dislodged proved to me that the reclining chair was going to work. And given the suddenness and severity of the sinus related incidents, a reclining chair might just save my life. As I write this blog I have had the new chair about a month and I already have had one sinus related scratchy throat incident in which I stopped what I was doing and had dad recline me. I was able to successfully cough up the phlegm that had already collected and relax until the Robitussin and Sudafed kicked in.
The Chris Young Pharmacy
It’s not just Robitussin that has become a staple item around here. I’ve tried every type of nasal steroid spray. I’m currently using two different kinds that have been the best I’ve used so far. One is the over-the-counter Flonase generic name Fluticasone and the other is a prescription called Azelastine. They make a spray called Dymista that is the combination of both of those sprays but my insurance won’t pay for it. It will pay for them separately but not together. The other go to drug is Sudafed. It’s the only decongestant I found that will dry out my nose. The doctor has warned me that is bad for my heart and I believe that. It can’t be good for you. It’s banned from the Olympics because it’s a stimulant. Also it is the main ingredient in cooking crystal meth. Even though it’s nonprescription, you have to sign for it at the pharmacy. At the rate I take it I’m probably on some DEA watchlist :-). I tried using the ephedrine free version it actually made my sinuses worse. Seriously I never take more than one dose per day and even if I’m going through a bad spell I generally only take it three or four days a week. Sometimes only once a week. Sometimes I don’t take any for long periods of time.
While we are on the topic of drugs, most of the medicine that I take on a daily basis is pretty small. Three times a day I take isosorbide for my heart. It is about the size of a baby aspirin. I take one dose of digoxin for my heart. I take a half of a pill of diuretic called bumetanide. When discussing my sinus medication I neglected to mention I also take a Zyrtec over-the-counter sinus pill. To help prevent urinary infections I take a very mild antibiotic called trimethoprim. I’ve never had any difficulty swallowing the small pills but that oval-shaped one has sometimes been a little difficult. Occasionally I would break it in two. The Flomax is a rather large capsule but I discovered that the capsule is only about a third full of powder. If you leave it in your mouth for a few seconds the capsule gets soft and you can smash it flat. That makes it much easier to swallow. Sometimes I end up chewing it up completely.
I take a lot of Tylenol for sinus headaches, body aches, and ordinary headaches or fever when I’m sick. Long ago I became unable to take a regular Tylenol capsule. For a while they were making a tablet that was chewable or dissolvable in your mouth. It was about the size of a large antacid tablet and had a mild minty flavor to it. They were pretty expensive and I guess they never took off in the marketplace because they discontinued them. Soon after that, they began making a liquid Tylenol in an adult dose. They had been making with children’s Tylenol for a long time that you needed to take a lot of it to get the adult dose. I’ve always been worried that they would discontinue the liquid adult Tylenol and in fact under the Tylenol brand I think they had discontinued it. But you can get store brands at Walgreens and Mejer’s. We always buy several bottles at once because it’s not always in stock. I’m not fond of the cherry flavor Tylenol but that’s all I’ve been able to find.
For things like sinus infections or colds or flu I usually get some sort of ampicillin or other penicillin like antibiotic. They usually all are available in liquid form. My usual antibiotic for urinary infections is Levaquin. The normal dose is 500 mg and I discovered that if they give me two 250 mg pills instead then I could get those down. They are a hard pill shaped like a capsule but they are very long and very skinny compared to most capsules. For a long time I was able to swallow them. All the pills I mentioned except for Levaquin fortunately do not have a very nasty taste if you end up having to bite into one or if they dissolve in your mouth. But Levaquin is probably the foulest tasting thing I’ve ever put in my mouth. It has a protective coating but if something goes wrong and that coating melts you definitely don’t want to experience that taste. At one point I discovered that Levaquin came in a liquid form. I tried it once and decided I would rather choke on the pill that ever take that liquid. It was the same horrible taste I’ve experienced if the pill melted in my mouth and they tried (unsuccessfully) to mask it with a strong bitter lemon taste. Over the past couple of years however even the long skinny 250 mg Levaquin has been too difficult to swallow so we crunch it up into a powder and mix it in with chocolate pudding. The pudding doesn’t completely mask the nasty taste but it is tolerable. The song is correct… A spoonful of sugar does help the medicine go down.
I’m guessing it’s been for the past couple of months that even the small pills that I used to be able to swallow easily have not been going down very well. Fortunately none of my regular small pills had a nasty taste and I end up just chewing them up and swallowing them. Speaking of chewing pills… I forgot to mention that at one point I tried an alternative to Flomax to help loosen up my prostate. It was the weirdest shaped pill I’ve ever seen. It was completely cylindrical with a flat end on each end not the rounded end you would expect. It was divided in two different colors. I learned that one half was a quick release and the other half was time-released. When I tried to swallow it, it’s got stuck in my throat. The only way to get it down was drink lots of water which sped up the dissolving of the time-released part. I got horribly sick from the overdose. Nothing dangerous but I only took one of them and said to hell with that. Anyway the point is about able to take anything that has a time-release to it because you are not supposed to chew up or crush such pills.
Speaking of drugs… Back before Bill Cosby was infamous for being a drug wielding rapist, he had some pretty funny comedy routines which I greatly admired. It really pisses me off that Cosby turned out to be such a pervert. I’ve so much enjoyed telling his stories and emulating his style. I’m going to continue to appreciate, enjoy, and remember fondly his humor and skill as an entertainer. Just because I quote his well-crafted humor or make references to it should not be considered support for his nefarious activities. I will continue to emulate the better parts of his character. My natural storytelling style is similar to Cosby with his passion for telling a story in complete context with a lengthy set up. Somehow unlike him, I’ve managed to do so without drugging anyone.
My favorite of his long stories were his original routines about his childhood friend “Fat Albert”. On one of his comedy albums he tells a very long story, the purpose of which was to illustrate through multiple incidents just how fat that Fat Albert actually was. Then he pauses to take a breath and says…
“So… I told you that story so I could tell you this one.”
He then proceeds to tell a story about how he tricked Fat Albert to run up a flight of stairs to see something cool. At the top of the landing he placed a giant cardboard cutout of Frankenstein’s monster that he had stolen from a local theater. Unfortunately as they were running up the stairs, he remembered too late that he was behind Fat Albert. You are left to imagine what happened when his rotund friend came charging back down the stairs to escape the monster and ran over Cosby. Cosby is such a vivid storyteller he doesn’t need to finish the rest of the story. He spent 10 or 15 minutes explaining why Fat Albert deserved his nickname just so he could tell you a two minute story about how that chubby chum once ran over him running down a stairway.
I’ve always loved that line where he says “I told you that story so I could tell you this one.” I find myself quoting it frequently. I’ve written 6000 words in this blog post already and I still haven’t gotten to the story that I wanted to tell you. But I wanted to tell you the Cosby story just so that I could write the next sentence.
I told you that story my history of choking and coughing so I could tell you this one.
The Day in Question
On Thursday April 14, 2016 I couldn’t eat my lunch
All of the history I have just described in over 6000 words was leading up to this day when I couldn’t eat my lunch. Now I need to tell you about what I usually do for lunch.
When I was a kid, I would eat a bologna sandwich with pickles and ketchup every day for lunch. Somewhere along the way I switched to eating a tuna salad sandwich everyday for lunch. Mom would mix up a very simple recipe using Chicken of the Sea Tuna. She used the kind packed in spring water not the kind which is packed in oil. She would mix it with Hellmann’s Real Mayonnaise and sweet pickle relish. Somehow through four years of college I managed to make such a sandwich survive spoiling in room temperature from when I would leave in the morning until lunchtime. I would also add potato chips and a Coke. When I went to work after college I ate cheeseburgers at the student union building cafeteria. But when I had to quit work I went back to mom’s famous tuna fish exclusively. Sometimes I would switch it up and do bologna with yellow mustard.
In recent years I’ve gotten into a pattern of doing bologna one day and tuna the next day alternating every other day. Whether tuna or bologna I would include a handful of ripple potato chips and a Coke. Rather than eating the bologna in a sandwich, I just take two slices of bologna and cut it up into bite-size pieces. It’s sort of like a homemade grown-up version of the kids snack “Lunchables”. On Sunday I eat a leftover White Castle. The alternating bologna/tuna pattern has been pretty much constant for seven or eight years. Thursday April 14, 2016 was a bologna day.
I’ve had a home health aide for just over seven years. I’m allocated two hours per day. They give me a bed bath, dressed, in my wheelchair, and they feed me lunch. When we first started seven years ago that entire process could be completed in about 90 minutes especially if I did not need to shave or sit on the toilet. For the past three years I’ve been taken care of by a guy named Rick. He moves a little slower than some of the caregivers I’ve had. Unfortunately his health has been deteriorating and he has to stop and rest for a minute or two several times during the process. We were easily filling up and sometimes going 5 or 10 minutes past the allotted two hours. I didn’t mind because Rick did such a good job.
Last November Rick’s health issues became so severe he had to quit and go on disability himself. We remain good friends and stay in touch on Facebook. He also attends my church sometimes. I’m now on my third caregiver since Rick left. The current girl is named Quita and she does a wonderful job. She works quickly, efficiently, and safely. She’s been working here maybe five or six weeks.
it still takes us two hours. I couldn’t figure out why. Things always go slow when a person is first learning the ropes but she has been here long enough that she’s going at a decent speed. She wasn’t as slow as Rick. We should have been able to do it easily in 90 minutes on a day where I didn’t shave or sit on the toilet. I didn’t think I was taking any longer. Somewhere over the past couple of weeks I began to realize it was in fact me who was taking longer. We were getting done dressing me in a reasonable amount of time. The change was that it was taking me longer to eat.
I have become Professor Nate Lennox as portrayed by James Woods in his Emmy nominated performance from season 12 episode 13 of the hit television series “ER”.
In that story they said it took him an hour to a meal. It was taking me a good 40 minutes to eat one half of a tuna fish sandwich, eight potato chips and a Coke. Or 2 slices of bologna, chips and Coke. I should’ve been able to scarf that down in 10 or 15 minutes. I also noticed gradually that dinner was taking longer. Dad is always finishing his dinner way ahead of me. About 9 PM every evening I eat a snack while watching TV. It consists of 3 Chewy Chips Ahoy chocolate chip cookies, a half a glass of milk, and a bottle of Ensure. I used to start the snack while watching a sitcom and I would finish before the sitcom finished. In recent weeks that’s taking me 35-40 minutes which is longer than a sitcom especially since I fast-forward through the commercials on my DVR.
On Thursday April 14, 2016, as I said was a bologna day. It was a severe struggle to swallow every bite. For some reason it just didn’t want to go down. Even drinking a Coke was next to impossible. Sometimes if I drink something that is too cold my throat would tend to close up and make it difficult to swallow. But on this particular day nothing would go down. The Coke wasn’t too cold. The bologna isn’t especially gritty. The chips were my regular potato chips. My throat simply would not cooperate. I normally cut the bologna into eight wedge-shaped pieces and it took me 40 minutes to eat three of them. Dad was out running errands somewhere. My caregiver Quita had to leave to go to her next client. I just gave up eating lunch.
Dad got home a few minutes after she left. I told him what had happened. I decided I had to try to eat something. I had dad feed me a container of Activia strawberry yogurt which I really enjoy. I managed to finish it completely and drink the rest of my Coke. I don’t recall what we had for supper that evening but somehow I managed to get it down.
As you can see after reading all of the above, this day had been coming a long time. The G-tube that was once a long way into my future now seems not only inevitable but imminent. Over the next several days I managed to eat more or less normally but it was still taking a very long time. I discovered that the tuna fish sandwiches were going down much easier than the bologna. A few days later I tried the bologna again but gave up after a few bites and switched back to tuna. I mentioned that some food goes down easier if there is bread with it. For example when swallowing bacon I have to chew it up with a piece of toast to get it to go down. So for lunch one day I tried eating the bologna in a sandwich. One of the problems with sandwiches is that because my disability causes all of my joints to stiffen, my mouth doesn’t open very far. We always have to smash it down very flat. Two slices of bologna and ordinary sandwich bread turned out to be just slightly too thick even when smashed as flat as possible. So I ended up eating it open faced. I was able to get it down but not as easy as the tuna.
Peyton Manning Is Right
It is currently April 30th as I’m composing this portion of the blog. It has taken me three days of writing to get here. I have had good days and bad days. The only food that I’ve had to give up on completely is another one of my favorites. Apart from steak which I gave up a couple of years ago perhaps my next favorite food except for pizza is chicken parmesan. And as Peyton Manning famously sings to the tune of the Nationwide Insurance jingle “Chicken parm you taste so good”. We usually get one that is in a TV dinner. A few days ago I had about four bites of one and up. I told dad to cross it off the list.
What to Do Next
Writing a blog is therapy for me. It helps put things in perspective. It gets things out of my system or off my chest or provides catharsis or gives me closure or any of those other psychological mumbo-jumbo terms. I think telling the story here has been a necessary step for me to get up the nerve to make a doctor’s appointment and see what my options are.
I’m not ready to schedule G-tube surgery because I am still eating. Although liquids are difficult to swallow I’m still swallowing them. Can a person live on Ensure alone? Are there other protein supplements or forms of liquid diet available? I had an ear ache recently and I think that was caused by Ensure that I swallowed funny that went up the eustachian tube from the back of my throat into my inner ear. A couple of times over the past few weeks when I was trying to swallow something liquid it would uncontrollably come out my nose and it wasn’t because somebody made me laugh.
Comedian George Carlin once said as a kid in school it was his mission to tell jokes and make food come out your nose. Carlin says says “Michael Davies once passed an entire cheese sandwich out his nostrils. Sister Annunciata thought it was a miracle. ’Come with me young man’ and she whisked him away to the principal. Apparently after a miracle you have to be debriefed by a priest.” That’s a joke funny enough to put food through your nose. I miss George Carlin and its fun to be able to quote a comedian and not have to apologize for quoting a drug wielding rapist like Bill Cosby.
So if swallowing ordinary liquid can give me an earache or make milk come out my nose without anyone telling a joke perhaps a liquid diet isn’t enough. Maybe it really is going to be a G-tube after all. But I won’t know that until I talk to a doctor and my current plan is to call him on Monday. I don’t know if I need a surgeon or a nutrition counselor or an ear nose and throat doctor or what I might need but he should be able to tell me.
Anytime I’ve had to have general anesthetic it’s been a risk for me. I currently have 2 wisdom teeth that need to be surgically removed. One of them has cavities. The other is impacted at a 90 degree angle. Fortunately neither of them are currently giving me any problems but I put off doing anything about them because I didn’t want to risk surgery unless it was absolutely necessary. If I do have to have a G-tube there won’t be much doubt that I really need it. I can’t go without eating and I can’t risk aspirating food. If I’m going to risk the anesthetic for the G-tube I might as well have the teeth removed at the same time. And it’s not like I need them anymore 🙂 Also the irony has not escaped me that just as I get a reclining wheelchair that might save me from choking, I might not be eating anymore. I guess is not a total waste because I still get coughing spells from my industrial-strength spit and my sinus drainage.
The emotional strain of all of this has come right in the middle of a very strenuous time to begin with. It’s taken me 10 months to get my new wheelchair and nearly another month to get it working properly. In the middle of all of that, we purchased my late cousin’s wheelchair van because my old lift won’t safely lift the new wheelchair. It’s just been a lot of change with a lot of emotion tied to it. I said at the beginning that having a lifelong disability has been somewhat easier than having one that with onset in the middle of your active life. But as my disability has evolved, there have been moments like this that have been especially tough to swallow. Both figuratively and literally.
I will keep you posted when I know more from the doctor.