A Daily Log of my experiences by Jack Eadon
[Editors note. The NFOSD published Jack Eadon’s story in mid-November. He has a website, www.jacksgettingback.com where he has chronicled his medical and personal journey. On January 14, 2013 he began an intensive two week “Boot Camp” to try and regain his swallowing ability. As President of the NFOSD, I communicate with a lot of people suffering from dysphagia. One of the pleasures of this position is meeting other people, like Jack, who are determined and committed to do what they need to succeed. The NFOSD wishes Jack the best and hopes this intensive approach to therapy opens a new avenue in our arsenal for fighting dysphagia.]
NOTE: PROGRESS WILL BE ADDED TO THE BOTTOM OF THIS ARTICLE
Click here Day #1
Click here Day #2
Click here Day #3
Click here Day #4
Click here Day #5
Click here Week #1
Click here Day #6
Click here Day #7
Click here Day #8
Click here Day #9
Click here Day #10 (and two week summary)
Setting the stage: My medical background and Expectations of the “Boot Camp”
I’ve been through tons of medical procedures over the last 34 years. They began in 1978 with my first of five brain surgeries to deal with a recurring Epidermoid Tumor in my right posterior Fossa. The tumor, wrapped around my brain stem, had been there, growing since birth.
In 1978, on a business trip to San Francisco, I felt nauseous and suddenly saw double, signaling the exact moment the tumor touched my fourth cranial nerve, which controls eye coordination.
Since then I’ve had five brain surgeries, all except the last one to partially remove the tumor. Each surgery left me fairly normal. During the most recent surgery in 2010, however, the tumor was totally removed; the impossible had been accomplished. Because the removal was so complete, there was significant trauma to Cranial nerves V, VI,VII, VIII, IX and X,. These last two nerves control swallowing. Nerve VIII controls balance; Nerve VII, facial muscles. I am working a lot on balance therapy and the accurate formation of words with my face, which has been a real challenge. I have managed to get more stable from extensive balance physical therapy.
However, my swallowing nerves were profoundly traumatized during the surgery and they haven’t come back yet. As a result, I haven’t had a thing to eat or drink for almost 2 plus years. I’ve received nutrition by G-Tube inserted inserted directly in to my stomach wall during the surgery. So, since August, 2010 I’ve lost over 105 pounds; I’m back to my high school weight. While all my numbers, from blood pressure to cholesterol, are the best they’ve ever been, not eating real food has been a real challenge as I watch holidays and barbecues and Super Bowls fly by. While other people are enjoying the camaraderie that goes with food, I only sniff the food to get some kind of sensual reward. To deal with this struggle I’ve invoked various strategies, from sucking on hard candy to going over to Taco Bell with a friend and sniffing my favorite dishes! It’s been rough on my marriage, but Karen has been a real trooper and we now have routines that are well-established to make the tube feedings less of a hassle. I can now use my G-Tube in a plane or car (or anywhere at any speed), although bumpiness can be problematic!
At the recommendation of my ENT, I took a train ride to Sacramento and UC Davis and met with Dr. Peter Belafsky, renowned in his field as a pioneer in the treatment of dysphasia. Dr Belafsky connected me with Liza Blumenfeld at Scripps Memorial Hospital. She is aBRS-S recognizes Speech Language Pathologist who has had some success with patients long after surgeries have caused their dysphagia. Swallowing, done an average of 2,000 times a day, is thought to be one of the most complicated physiologic mechanisms in the human body. I have no ability to swallow, so while the average person swallows a quart or so of saliva daily, I swallow very little. I use a portable suction device to remove most of my saliva… my portable dentist office.
After doing some speech therapy with Liza for several weeks, once a week, Liza felt that a more aggressive approach was required to have any effect on my “profound” dysphagia. So, she suggested an intensive, focused “boot camp” of two weeks with daily speech therapy, biofeedback, exercises, and tests to monitor the strength of my swallowing mechanism. I said, “when?”
My Expectations
I’m a real optimist, so I have to be careful here. On the upside, I want to jump-start my swallowing mechanism and encourage muscles and nerves to wake up and do what they were meant to do. After all, there was no nerve damage, but there was a lot of trauma, so the areas need a lot of stimulation. I expect to get that during the boot camp.
At the very least I want to fine-tune the components of my swallowing mechanism to get them as well-honed as they can be. Liza will determine, over the course of the two weeks, whether this “boot camp” will be enough to allow me to begin swallowing again or whether other, more aggressive, strategies are required.
For me, the important thing is that I’m doing something! I’m not just sitting around and wishing for my problem to go away. I hope that everyone with some form of dysphasia will take whatever steps they can take to get rid of the liquid food and G-Tube and get back to swallowing and a normal diet!
So, as I go though my Swallowing Boot Camp, I’ll report in daily and let you know how it’s going. One thing: Everyday I’ll be jazzed over the intensity of this and look forward to sharing my experience with you!
DAY #1 – Monday, January 14, 2013 (A log of my experiences by Jack Eadon)
After arriving at my room at the Residence Inn, we went toScripps Centerfor Voice and Swallowing, where my friend Adolfo dropped me off. I said hello to Candace, assistant to Speech Pathologist Liza Blumenfeld and went in to see Liza.
Boy, we got right to work!
Liza (pronounced Lee-sa) first spent some time talking about how my two weeks would unfold. She explained that I had “profound” dysphagia on a continuum from light-to-medium-to-serious-to-profound; there isn’t much happening in this man’s swallowing mechanism! So, for the next two weeks, I will seek to fine-tune and improve what I do have and, if that isn’t enough, explore other steps.
But, right now, I need to see how I do just with concentrated therapy. Prior swallowing therapy was once a week. The Boot Camp takes place daily and for a longer period of time. Plus, the plan is to use the e-stem stimulation technique during each session.
First on the agenda was keeping the e-stimulation electrodes around my neck to stimulate my larynx muscles. Next, Liza scoped me with a tiny camera so I could see on a video what my swallowing function looked like. It ends up a lot of my saliva is pooling up at my upper esophageal sphincter and not going down my esophagus; that’s just what food would do. The door isn’t opening to let anything down!
Liza gave me a set of exercises to do today to ascertain if there was any physical posture that improves my swallowing. I also downloaded an app for my iPhone that is a continuous countdown timer. Every 45 seconds an alarm goes off and reminds me to swallow. I do the best I can, but then rate the swallow on a one-to-ten scale. I’ve been doing 2 to 3 1/2 because not much is going down my esophagus. We’ll see if that gets better! I’m trying to gain a sensitivity to and gain control over the tiny muscles that control my upper esophageal sphincter in order to manage my secretions better. This must be improved before I can successfully swallow food.
Stay tuned for more tomorrow. Now back to my room for some liquid food through the G-Tube in my stomach wall, boring, fill up the tank!
Day 1 photo – Jack being scoped with the e-stimulation electrods in place
DAY #2 – Tuesday, January 15, 2013 (A log of my experiences – by Jack Eadon)
Good Grief! What a start!
All yesterday afternoon I swallowed every 45 seconds, thanks to cuing from the repetitive iPhone app applicably named Interval Timer. The purpose is to strengthen the tiny muscles that comprise my swallowing mechanism.
Liza Blumenfeld asked me to try to determine if there were any physical positions that seemed to foster a better swallow. I didn’t find any obvious ones, but I have noticed that the right side of my throat, which was partially paralyzed during my 2010 surgery, appears to be less responsive than the left, although that’s getting better as the right side “wakes up.”
I stayed up WAY too late last night, writing and swallowing every time I heard birds chirping or the sound of a wind chime (my 45 second repeating iPhone timer). By the time I got to bed it was 2:00 AM! I set my alarm for 6:00 AM because we planned to get an early start. Boy, when they said “boot camp” they meant it.
Ring!!
Before I knew it, the alarm had chimed! I hit snooze and promptly fell back asleep only to be shaken awake by a phone call from Liza at 8:00 AM! As I rushed to get ready, I turned on my repeating timer and began swallowing every 45 seconds. I had my liquid food, turned on some Nicholas David music, and cleaned up my room, which is already getting to be a mess.
After swallowing so much yesterday and last night, I feel a little numb and tired around my larynx! I guess that’s good! Liza can’t see me until 3:00 PM today, so I’ll take the 2:00 PM shuttle over to the Voice and Swallowing Center.
BTW, thanks to all for all your words of encouragement. It propels me through the day along with strains of my Nicholas David music. Thank you, Nicholas!
I’ve been using the iPhone app and already notice that I am not drooling involuntarily as much onto my computer keyboard. And, importantly, I didn’t use my suction machine a single time during the night nor so far during the day. That’s very good news. (Remember, effectively managing secretions of saliva must precede successful swallowing of food.)
My 3:00 PM session – I tried to swallow some ice chips. When I turned my head all the way to the right, as Liza suggested, I managed to get a pretty good swallow, so tomorrow I’ll do more of that.
I also did an exercise where I pressed down on a meter to measure the amount of pressure I was supplying by my tongue to the roof of my mouth. I did pretty well, but could be better. The news of the day was the effectiveness of turning my head all the way to the right.
This is exhausting but we’re learning a lot. I would encourage everyone with dysphagia to really charge at your condition. With persistence, I’m optimistic. Stay ON THE PATH and don’t stay up too late. You’ll miss out on the fun or Liza will make you do an extra set of push-ups!
Day 2 photo – Jack having his tongue pressure measured
DAY #3 – Wednesday, January 16, 2013 (A log of my experiences by Jack Eadon)
This was a lot smoother than yesterday!
Wednesday I was determined to get it right! I slept like a baby and didn’t use my little but very noisy suction machine once; that’s twice less than normal (good news!). I woke promptly at 6:00 AM and threw myself out of bed, shaved, took a shower, and was ready for a text / pickup at 7:30 AM.
I went into the Center for Voice and Swallowing and started the session with a tongue-pressure warm-up—important for a good swallow; I had a higher reading than yesterday, so the back of my tongue is getting stronger! Liza then began feeding me ice chips. I would swallow them as I looked to the extreme right. I had a lot of 3’s and 4’s, but nothing as good as that one swallow yesterday. After all, regaining swallowing is a journey, not an “on-off switch.” You have to stay on the path and be persistent about exercises, and one day it’ll all click in. You just gotta understand this boot camp; your daily exercises are NOT a guarantee, nor a panacea. You won’t automatically be successful. You just have to stay on the path. Then, like yesterday, when I saw a little success, there’ll be another day like that, then another, then finally—
Today was more of the same intense process as yesterday. My iPhone app went off with birds or a wind chime every 45 seconds. Those were my signals to swallow, again and again and again . . .
Many people have said things like, “I hope this helps; I hope you’ll be able to swallow. You know what I think? That hope has nothing to do with it and implies that there’s a chance I won’t regain my swallow. With no damage to my nerves, there’s only been nerve trauma, so, my swallowing will come back; it’s only a matter of time and my dogged determination. I’m getting the almost otherworldly strength to persist and that’s what’s keeping me going, day after day, month after month.
So, tomorrow I shall swallow more ice chips, try multiple positions, and Liza will keep on the e-stimulation for my whole session. Swallowing purposefully every 45 seconds has been exhausting, so, I’ve changed it to once a minute for the whole day. To sweeten my mouth, I’ve sucked on Werthers’ hard candy about 50% of the time. That produces saliva that gives me something to swallow and tastes good. Mmmm.
Interesting, I seem to have a reflex—sort of clearing of my throat—which I recognize now is an effort to clear the saliva from around my upper esophageal sphincter, which I saw in the video Liza made of it on Day #1. I recognize that my mission, in this boot camp and beyond, is to get in touch with it and train it, to open and close when it’s supposed to, to protect my airways when I swallow.
It’s funny how knowing what that area looks like, and being a writer, allows me to “transport” myself to that location like in the movie Fantastic Voyage, where little spacecraft were sent into the veins of a body to repair a disease.
But, I am exhausted from swallowing and I feel like I have a saddle of numbness that stretches from one ear, down around my larynx, then up to my other ear. I really feel like I’ve been in boot camp, exercising these little muscles!
It’s been a good day and I look forward to more of the boot camp tomorrow!
Day 3 photo – Jack being fed ice chips so he can concentrate on feeling the swallow
DAY #4 – Thursday, January 17, 2013 (A log of my experiences by Jack Eadon)
Pace yourself!
Making the effort to relearn how to swallow after having a surgery that stole the function away from you is darned hard. It’s easy to feel the pressure of the world as they eagerly await you to get back to normal, a bodily function routinely taken for granted without a thought. Encouragement is what I need, not tapping your foot impatiently, expecting some kind of Hollywood ending!
I’m sure a lot of you would love me to suddenly and magically swallow during these two weeks. I think about that expectation a lot. What I have to keep focused on, however, is my journey. After a successful session yesterday, I stayed up too late and forgot to push the ON switch on my iPhone alarm. So, I WAY overslept and missed my appointment!
But, I recovered, re-scheduled for 10:00 AM, and went on over.
After warming up with some tongue pressure exercises on the meter, we thought I’d try eating some sugar-free Jell-O. I tried just a little bit and it appeared to get lodged right at my esophageal sphincter, so it didn’t go down. Darn!
I then tried to replicate the good luck I had the other day with ice. I was not any more successful with that. Stay “On the Path,” I keep telling myself. This session wasn’t exactly successful because it wasn’t moving forward. That’s what I mean by “Pace yourself!” It’s our panacea-style Western ways that teach us to believe that the only way we advance is by constantly moving up hill. Not true. All I can control is what I do. I will stay on the path and I will swallow because I am doing all the right things – all the time.
There are no Hollywood endings.
Day 4 photo – Jack attempting to swallow Jell-O
DAY #5 – Friday, January 18, 2013 (A log of my experiences by Jack Eadon)
Just a bit of a rebound on Day #5
This morning I was up bright and early and ready for my ride at 7:45 AM. Liza and I got right to work at the Center for Voice and Swallowing.
Today, and this is important, I found that a tongue exercise I’d been doing over the past two years, I was doing INCORRECTLY. I didn’t understand that the base of my tongue – WAY in the back – was the area I needed to focusing on; not the front of my tongue.
When Liza pulled and held my tongue for a count of three, I felt isometric muscular tension infuse the rear of my tongue; that was a new feeling. The resistance it created was like an exaggerated Shaker maneuver, an exercise I’ve been doing for two years. By focusing on the tongue base, I really felt a different muscle being strengthened. Previously, only the forward part of my tongue was gaining strength. Now, I’m feeling a lot more effort is being made by the back of my tongue! As Liza explained, I really need that strength to precipitate a plunging action on each swallow. Yea!
I guess I had to hit bottom yesterday to leave me open to find some new insights today! That’s a good lesson. I look forward to week #2. I’ve got to be willing to ask myself, “What could I be doing wrong and what can I do better?”
Every day, and in every way, I’m getting better and better.
I think I’ll use that to open a book!
Day 5 photo – Jack IS Getting Back
Week #1 Recap
– What I’ve learned about beating Dysphagia (by Jack Eadon)
In summary:
- It’s a Journey, not just a destination
- Base of my tongue may be the key
- Focus, focus, focus in Week#2
The most important thing I’ve learned this week is that I am, indeed, on a journey. I need to accept where I am, yes, but I need to fuel myself with the hope within me that springs eternal. That’s why I keep a list of 35 things I would love to eat once I’m on a normal diet. I read the list often. By becoming very good at who I am right now – dealing with tube-feedings and the rest of it – but also reading my favorite food list, I will stay realistic, but, more importantly, full of hope.
So, last fall, I needed to prove I was OK despite my having profound dysphagia. I took what I call my “Great Forest Train trip” from Santa Ana, CA to Canada, then back to UC Davis, where I met Dr. Peter Belafsky and established a world-class team to deal with my dysphagia. That took fortitude and guts. I had to take two weeks of liquid food in a 4-wheel cart to Seattle and then by ferry toVictoria Island. I am somewhat “balance-challenged” after my surgery, so the train constantly tested me with its version of rock ‘n’ roll! Listen, I know I sort of did the impossible. Some folks at the Seattle train station even thought I was a deaf, homeless man! I probably looked like one. But I persisted, and that got me to this Swallowing Boot Camp in La Jolla, really Leg II of my Great Forest Train to regain my swallowing.
These two weeks I’m really focusing on learning about and more intensely treating my dysphagia. Liza helped me see that the base of my tongue was not creating enough plunging action to successfully swallow. It was something I had to address.
So, all day today I’ve been exercising it and realize now, even after several years of speech therapy, that the “base” strength may be what I need to swallow again. When Liza held my tongue and I retracted it, I felt the back of it being exercised like I had not felt before. Ahah!
Last night I tried to replicate that specific feeling as I lay there in bed. I thrust my tongue backward, toward the rear of my throat, and found that I could quite easily breathe through my nose. The base of my tongue had successfully become a plunger and separated my breathing from my swallowing! Bingo! So, I did more of this “Great Forest Train” maneuver as I lay there, smiling.
I look forward to focusing during Week #2 of the Swallowing Boot Camp and thank all of you for your support and well-wishes! Stay with me!
Week 1 photo – Jack Eadon, 1971, Band Khazad Doom
DAY #6 – Monday, January 21, 2013 (a log of my experiences by Jack Eadon)
Changes at the beginning of Week #2 with new tools
After doing a lot of swallowing exercises all weekend and on my way to La Jolla today, I was eager to start Week #2 of the Swallowing Boot Camp. We started at 2:30. Right away Liza put the e-stimulation electrodes on both sides of my neck.
She also used a machine to monitor my inhalation and exhalation (see photo). She explained that I would swallow most successfully when I inhaled and plunged down, and then actually exhaled as I swallowed. So, that machine stayed attached to my nostrils the whole time, so I could calibrate my swallow to my breathing. I was all wired up!
We developed a routine: First, we did isometric tongue-pulling to strengthen the base of my tongue. (I did great after all of my exercises); second, I metered my tongue pressure (for the first time, I surpassed 40 on the scale!); third, I attempted to swallow a teaspoon of crushed ice. I had mixed results here, and managed to get some down, all the time breathing appropriately, bearing down, and keeping my head turned to the right.
With persistence each day, I’m sure I’ll get as much as I can out of this week. Maybe I’ll even swallow . . . or move on to another approach. We’ll see . . .
After my revelation about the strength of the base of my tongue, I am optimistic about my future. I can’t imagine what things would be like if I hadn’t done this. In the way that I titled my book: LIFE is in the TRYING. I love that title!
Day 6 photo – Nasal inhale / exhale graph
DAY #7 – Tuesday, January 22, 2013 (a log of my experiences by Jack Eadon)
Kicking into gear!
How did I do today? Liza felt this was the best day yet! A lot of all that I have been learning has kicked into gear. We did all the same things as we did yesterday – remember, I said persistence was the key – but started getting some good measurable results.
In the tongue-pulling exercise, I about pulled out Liza’s hand off with the strength of my tongue . . . so, it’s really getting stronger. On the tongue-pressure metering machine, I went over 40, not once, but twice.
What was most impressive was that I went the whole session, and several minutes beyond it, without having to use my suction machine. This compares to using it five times a session at the beginning of last week. So, despite all the oral stimulation, and there was a lot of it, I was able to manage my secretions for over and hour – a beginning.
Remember, I said you have to be able to manage secretions before you can hope to move onto food. Admittedly this is slow progress, but it is progress nonetheless. I am optimistic.
I am convinced that even if I have to consider some sort of minor surgical intervention, perhaps to open the esophageal sphincter with a small balloon, I will swallow again – and it might be sooner rather then later. Plus, I am fine-tuning my swallowing mechanism, there’s no doubt about that.
Even as I write this, I’m giving myself liquid food through my G-Tube. Residual air in the tube makes me cough spasmodically / involuntarily every once in a while. If I’m having my food and I start to cough, the liquid over flows the syringe and shoots up like an oil well… and gets all over!
Well, that just happened so I’m going to have to call this log to a close with a little bit of realism – and clean up this mess before housekeeping comes!
Whoops! I noticed that as I was typing, I drooled onto my computer’s track pad, endangering the electronics, so now I have to clean up two messes: the floor and the computer.
See, it’s easy for a bulk of the population to compartmentalize dysphagia as just another benign sort of affliction not having much impact on the afflicted (I mean, they can’t swallow, so, what’s the big deal?!).
But, when you have to deal with these random messes through no fault of your own, it becomes a pretty big deal to you, physically and emotionally. Bet you’ll see dysphagia a little differently now.
DAY #8 – Wednesday, January 23, 2013 (a log of my experiences by Jack Eadon)
Well, today was a weird day at my Swallowing Boot Camp.
It literally started out with a bang. When we got to the Center, I got out of the car but didn’t notice that my leg had fallen asleep. I turned, lost my balance, and fell! Liza came to my aid to see if I was OK. I said yes, but, even though I resisted the idea, Liza took good care of me. We went to the emergency room to make sure I was OK.
First, they double-checked me. I talked to a neurologist and had a blood test. They wanted to do x-rays, an MRI, and a CT scan. With my history of brain surgeries, I’m fodder for every test in the book. The folks at Scripps, however, were prompt, friendly and professional.
This gave me plenty of time to think, too. I recognized, however, that people who hardly knew me, like Liza, Candace and the crew at the center were all concerned. Karen, my wife, when reached by phone, was, too.
You ask, “What does that have to do with Dysphagia?” Well, actually a lot. Caregivers, friends, spouses, and children (or parents) have to live with Dysphagia along with the afflicted. They have to live with the pressure, irritability, and random messiness that accompany a diet of liquid food; not to mention the crimp in the number of their own visits to restaurants, barbecues, and social activities of all kinds.
So, Day #8 is a big shout-out to all of them.
Oh, I also want to say that after my ER stay, I went back to my room and continued lots of swallowing and exercises. After all, even with visits to the ER, a boot camp is a boot camp!
DAY #9 – Thursday, January 24, 2013 (a log of my experiences by Jack Eadon)
It feels strange but I have to remember it.
I took the shuttle to the center early and we got right to work. On the tongue pulling pressure gauge I reached 50 today! Plus, I could tell, I pulled with the WAY BACK PART OF MY TONGUE as I learned to do late last week.
Then, along with looking right, tucking my face, inhaling, bearing down (like I’m going to the bathroom), and keeping my mouth closed, I tried to swallow. And guess what?
There was an audible gulp!
Now, if you can imagine me in a restaurant doing all this to take a sip of thickened soup, it’s sort of a funny image. But, it’s a beginning. Importantly, after my swallow I was able to speak without that garbled liquid sound many of you have had the patience to tolerate. You don’t just think I’m angry because of the way I talk!
After that first swallow, I didn’t manage to do it on every attempt, but I did manage to have five audible swallows during our session. That’s a real beginning. I think the Boot Camp has been successful, don’t you? I think I should do this every month.
Day 9 photo – Jack with e-stimulation machine
DAY #10 – Friday January 25, 2013 – My last day, but maybe my first day . . . Summary (a log of my experiences by Jack Eadon)
A lot has happened in these two weeks. Most of my goals have been met. My first and foremost goal was managing my saliva secretions, something I have to do before I can hope to handle food.
I have substantial anecdotal evidence that borders on the empirical. The canister on my suction machine normally fills up in a day or so – a quart of spit – yuck! My canister didn’t fill up ONCE during the entire 2 week boot camp. This morning, after 10 days of intense exercises, purposeful swallowing, all kinds of speech therapy, daily electrical stimulation, and sucking constantly on Werther’s hard candies – my suction canister was only 20% full!
THAT’S EASILY AN 80% REDUCTION IN SECRETIONS; THIS DESPITE ALL THE THERAPY, EXERCISES, AND SUCKING ON WERTHERS CANDIES.
To get a first objective view of how I’ve done, Liza scoped me once again to get photos. This time I was trying to swallow some crushed ice. While I wasn’t able to initiate a good swallow like I did yesterday, my esophageal sphincter looked totally different! At the beginning of the Boot Camp, it was literally bathed in saliva: front and back – all around. This morning I didn’t see any saliva on it – none at all. After years of seeing doctors’ offices photos of esophageal sphincters bathed in saliva, seeing this one all pink-and-pretty-and-devoid-of-saliva was a change not to be believed!
My second objective was to clear up my garbled voice. Well, Candace and Paul at the Center commented (unsolicited, mind you) that they noticed how my voice had become much clearer over the two weeks and that I didn’t use my noisy suction machine nearly as much.
Listen, I’m no doctor, but if the spit isn’t drowning my vocal chords, and I’m not suctioning near as much, then the spit must be going somewhere: perhaps, down my esophagus? If the average person involuntarily swallows hundreds of times a day, maybe, even with my profound dysphagia, I’m starting to get some of my saliva down the “right passage way.”
My voice was even clear after swallowing those melting ice chips. That’s major evidence! No gurgles here!
The third objective I had was to strengthen my tongue because of its important role in effective swallowing. At the beginning of the Boot Camp, my tongue pressures were metered at 32. Now they’ve been hovering around 40, with a few higher.
Also, the base of my tongue is a lot stronger. It can now tolerate and sustain moderate to maximum pressure during tongue-pulls. That, and really focusing on my position and timing, probably helped me initiate those audible swallows and signals a road back for me. This “tongue-pulling” was the most “boot camp” of all my exercises. The rear of my tongue in particular got a daily workout!
My fourth objective was to learn the intricacies of the swallowing mechanism: my body position, breath support, and timing, and to close all the “valves” that, when opened, can decrease the pressure my body creates to initiate a good swallow.
Fifth, I would have loved to regain my swallow in earnest during these two weeks, but I’ve made significant progress, especially those five audible gulps on Day 9!
I look forward to what Dr. Peter Belafsky and Liza come up with for their recommended course of action on the next leg of my Great Forest Train to Swallowing. I want to thank them and Ed Steger, the president of the National Foundation of Swallowing Disorders, and give a big call-out to my assistant Pam for her dedicated support. And, importantly, I want to thank my wife Karen, for all of her driving to get me here both weeks!
IMPORTANT FOOTNOTE: It’s now the day after boot camp and I’m about to send this out. I was sucking on a Werther’s hard candy and, without any contorted head position, I just had a single audible gulp. Yea! [Where’s there’s one, there’s two; Where there’s two, there’s four; and so forth.]
[Editors note. We thank Jack and the staff at Scripps for allowing us a peak behind the curtain. We were all uncertain two weeks ago were this would lead. We knew Jack was determined; we just didn’t know how determined. Now we know. Hundred of people have viewed Jack’s journey over the past two weeks. Many have left Jack comments of encouragement and support on Facebook. We’re hoping Jack will keep us posted with his Great Forest Train trip. Stay the path Jack and once again thank you for giving other’s hope in their journey. Ed Steger]
Day 10 Photo – Jack and Liza
