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My Failed Swallow: A Disability, Not a Mindset

Byline: Samantha Anderson, AustraliaSamantha working at an instore event in one of her galleries

I could have written this from so many different angles. The fear I faced waking up in an unfamiliar body. The frustration of struggling to find help in a medical system so geared to common ailments and diseases and learning that there is no one who can help. The disgust at how women are treated and pigeonholed as “emotional” or “depressed” – being told “Sweetheart, you’ve just forgotten how to swallow” is so demeaning and disrespectful. Being an outsider in your own life – not taking part in family meals or celebrations. Work functions and events that all center around food and champagne. Friends that don’t know how to catch up if not over coffee, and family that can’t come to visit without planning a barbecue. Or how to deal with food, food and more food being shoved in your face everywhere: magazines, billboards, TV, in the streets, friend’s houses, supermarkets, restaurants, cafés, even in your own home. And how when you’re starving, it’s pure torture.

MY STORY

I was a happy healthy 39 year-old mother of 3, enjoying a career that I loved as a goldsmith, and running my own successful jewelry gallery. When, with one mouthful, my world flipped upside down. Life as I knew it ground to a halt.

I woke up one morning as usual, went downstairs, made myself some peanut butter toast and a cup of tea and sat down to eat breakfast. It was a Saturday. I took a bite and chewed as normal, but as I pushed the food to the back of my mouth to swallow, nothing happened. My throat remained relaxed, open. I squeezed my mouth tighter, pushed back harder, still nothing…until I felt it hit my airway. I was choking!

Afterwards I felt shaken, confused, in a state of disbelief. Why would my swallow not start? I tried again – the same thing. This didn’t make sense. My mind was reeling. I pushed my food aside and busied myself with other things, thinking I would come back to it afresh a few moments later. After all, bodies just know how to swallow, just like they know how to breathe or pump your blood. Right? They don’t just stop. This just doesn’t happen.

Well, of course, I know now it does. And sadly for me, that first mouthful was an indication of every mouthful to come.

After a couple of days of this, I was beside myself with hunger, anxious over choking so many times and frustrated at not being able to get the food from my mouth to my stomach. It seemed such a simple task, but try as I may, I couldn’t make it happen. I fared better with liquids, though I still choked repeatedly. Some textures were more successful than others, but I just couldn’t seem to keep my airway clear or control the initiation of my swallow. It just seemed like a lucky dip as to where the food would end up.

It was exhausting. I went to my local doctor. He told me it was stress, and without doing any comprehensive tests, prescribed me Valium. In desperation I took it, hoping he was right. They made me very, very relaxed, but did absolutely nothing for my swallow.

By now I was ravenous, all I could think about was food and how I could get it in. Over the months, I tried hypnosis, counseling, and removing anything remotely stressful from my life. But of course none of this was ever going to work, as stress was never the problem to begin with! When I eventually saw another doctor out of concern for my weight loss, I told her I had a “stress condition.” Luckily for me, she probed further. When she heard how clearly I could describe the malfunction in my swallow, she picked up the phone and called an ENT surgeon right then and there. She sent me straight up to his office.

The ENT specialist I saw that day was the first doctor to give me hope in a long time. He said to me, “You just have something misfiring and it will be a process of elimination to find out what.” It was the first real plan of action I had.

The first step, he sent me for a cine swallow (a video swallow study) with a speech therapist present. She could see a delay in the swallow trigger, and at times it was not starting at all. She also saw a lot of premature spillage (food/liquid going into the throat before starting to swallow). I felt for sure they could do something to help now that they knew what was happening. Instead she said, “I think your answers will lay with neurology.” She asked me to keep her posted, as they see people like me and don’t know what to do to help them.

I felt that the ground was disappearing from beneath me. Like maybe this was going to end very badly. I had an appointment set with the neurologist, but had to wait for a couple of months. In the meantime, the tests continued for illnesses and autoimmune diseases I had never heard of. My hair was sent for analysis to rule out heavy metal poisoning. Even the pearls I had been working on that weekend were sent for forensic testing to rule out mycotoxins! Nothing came from any of this, no answers.

It was six months before I even heard the word dysphagia. By this time, my weight had plummeted and I ended up in hospital, suffering the effects of malnutrition and dehydration. I was scared, confused and trapped in a living hell that didn’t seem to make any sense. At that stage I had never heard of anyone not being able to swallow. Frighteningly my doctors seemed equally perplexed. I felt sure I would die; either slowly by starvation or quickly from choking. My days became solely about survival. Trying to find ways to trick my body to get the food down. I would set goals for myself – a whole tub of yoghurt, a glass of water and two whole strawberries to be consumed by the end of the day. I rarely met them. I was barely sleeping and was consumed by my hunger. I felt broken and desperate. I felt like my body was trying to kill me. I’d regularly choke on my own saliva, often in the middle of sleep. There seemed no escape and no answers. I withdrew from friends, family, the world.

I felt embarrassed, humiliated. How do you explain to someone that you can’t swallow when you don’t even understand it yourself? That it takes you half an hour of constant, focused effort to drink half a glass of water? I felt weak and ridiculous. And my friends withdrew from me, too. Not knowing what to say or how to handle it. Some tried to make light of it, telling me I looked “great” at 46kg (100 lb), joking they wanted to be on the diet I was on.

I felt like crying. I was petrified that I was dying, and felt powerless to stop it. No matter how hard I fought, everyday my weight continued to drop. And it felt like everyone around me was missing the seriousness of it. It’s basic: People need food to live. Without it, they die. Was I the only one who realised this? I felt alienated from the people I once knew, like I existed in another realm now, and I stopped trying to reach out.

Eventually I was put on a “liquid only” diet, as it was deemed it would be “safer for me to choke on that as all that would happen is I may develop aspiration pneumonia,” but that there would be “less risk to blocking my airway.” The speech therapist showed me roughly the size of my airway opening, and told me as long as it fit through there, it would be ok.

I was in shock. Devastated. This was now my life. You will choke. Many, many times a day, but it’s okay?! This was not okay! I couldn’t live like this. This was no life. I began thinking it might be easier to take care of things myself. End things in a way I controlled. I was more scared of ending up brain damaged from lack of oxygen after choking than I was by dying at this stage.

I already felt like such a burden to my family. And I hated seeing my children upset by this. I started eating/drinking in private only with my husband, trying to shield them from what I could. It broke my heart when they came to me, crying, saying, “Mum, I’m scared you’re going to die”. I couldn’t tell them I was too. I needed to be strong for them, but inside I had nothing left and still no answers. Words like MND (motor neuron disease) and MS (multiple sclerosis), among others, were thrown around. When tests ruled things out, other doctors would complacently mention, “You can get false negatives.” I had no idea what I was dealing with or what was coming next.

My symptoms began weeks before my swallow stopped working. Only I didn’t realise it. There was a painful rash in my left ear that looked like a patch of tiny cold sores. And that’s exactly what I thought it was. Knowing doctors could do nothing for them, I put cold sore cream over them and carried on. The pain was excruciating – sharp and stabbing along my ear canal and down the left side of my throat. And my head throbbed, too, more painful than a headache, but different to a migraine.

I could barely think straight. At times when the pain crescendoed, I would have to pull the car over to the side of the road, the intensity causing a “roar” in my head I could hear. I remember at one point realising my left cheek and chin were numb. I sat at the kitchen bench poking and prodding at it with my fingers. I said to my husband, “Wow, these cold sore have really gotten into my nerves! They’re viscous!” I couldn’t have known how prophetic those words would be.

They were not cold sores. It was the Shingles rash. And it was in my ear canal, damaging my cranial nerves, and wreaking havoc that would take years to overcome. My rash subsided within two weeks. I thought that creams I had been using had done their job. I thought it was over. But a little over a week later is when the real problems began.

It took doctors 9 months to figure out that the painful rash that I had had in my left ear had in fact been Shingles. And having been left untreated, it damaged 4 of my cranial nerves. Up until that point, I thought it was unrelated, so had not thought to mention it. After the Shingles discovery, I felt hopeful again and excited to have something concrete to fight.

Tests followed to pinpoint exactly which nerves had been damaged, and I started to get some explanations as to why certain things were happening. But that hope quickly turned to despair when I was informed that there was nothing the doctors could do but “wait and see,” that these nerves “sometimes repair themselves.”

It was a rollercoaster of emotion to end up roughly in the same place. Except for one thing: I was offered a PEG, a feeding tube. I snapped up the chance and felt angry that this had not been offered sooner. It changed my life. I felt full for the first time in almost two years. A huge weight had been lifted off my shoulders; I actually had time to think.

The previous year, drinking nothing but thin liquids had been a blur of 13 drinks a day, each taking me a half an hour to consume. The regimen had evolved while working with a dietician to maintain my nutrition and weight. It was a full time job. My husband had had to use up his long service leave to look after me. My weight gain was minimal, my nutrition borderline, and things like my anemia just seemed impossible to rectify.

Now, with a mere 4 PEG feeds a day (Ensure 2Cal), I could replace all that. And no more choking! My quality of life transformed dramatically. I started feeling like maybe I could do this. By now my friends had dwindled to none. My hospital stays brought no visitors or even well-wishing text messages. I know I fell out of touch, too, but it was hard to think nobody cared about how I was doing. I heard the rumors that people were using words like “phobia” and “breakdown.” I felt judged and betrayed by the people that should have known me better than that.

With more time on our hands now and more of a chance to think clearly about things, my husband and I realised with all of this new information and explanations, none of the doctors we had been working with had experience in treating this. Most just didn’t know what to do, other than monitor things. I was being told after getting my feeding PEG that this would be my life now, and, as far as my swallow went, this would probably be “as good as it’s going to get.”

I wasn’t prepared to accept that. By now I knew that countless others suffered from dysphagia for a myriad of reasons and there’d been many who had been able to eat again. I was determined to be one of them. But I knew I needed to find the right people to help me. We searched high and low within Australia and came up empty. Then, my husband remembered something he had found on the internet – the National Foundation of Swallowing Disorders in the US.

We reached out to Ed Steger. He put us in touch with Professor Peter Belafsky and that’s when the real changes started to happen. While I could write a whole book on what Peter Belafsky has done for me, it pales in comparison to two main things that happened in that first phone call. First, he could explain what was happening to my swallow and what we could do about it, and second, he had empathy for what it was to live with a swallowing disorder. And I will be forever indebted to him for transforming my life.

I had my feeding PEG for 18 months. It restored my weight, gave me back my health and my life, and I will always be grateful for that, as I truly don’t think I would still be here without it. When I had it removed 6 weeks ago, it felt like losing a limb. It had become such a part of me. But on the other hand, I couldn’t wait to be rid of it. It felt like a new beginning. And I am so excited to be able to eat real food again.

The hardest part has been the isolation, being struck down with a condition that nobody, even you, understands. I know there are people in my life right now who think that if I just tried harder, or was braver, I could eat. They just don’t get that it doesn’t work like that. My swallow fails on me. It’s a disability, not a mindset. I try every day. I fight, I struggle, I want to improve. I am determined to eat, even though it’s a long and arduous battle to get through each and every meal.

Sometimes my husband has finished his meal while mine looks barely touched and I am already exhausted. Half an hour of non-stop chewing and swallowing and head positioning and throat clearing and keeping your airway clear and managing spillage and trying to keep a track of where the food in my mouth is…is so tiring. At times it feels like I’ve run a marathon. Sometimes my husband will ask, “How was that?” Truth is, it’s hard to get a chance to register the flavour when there’s so much else to think about with each mouthful. But I’m so happy and grateful to even manage this.

As wonderful as my PEG was at the time that I needed it, having a thick yellow solution syringed into your stomach just does not compare to real food. Psychologically as well, it’s so good to feel like a real person again. While there are still many, many things I can’t eat, the list of things I can is growing. And it’s nice to hear the doctors in my life tell me how amazed they are that I can eat some of the things I do. At my recent cine swallow progress check, the speech therapist was so surprised I’d had my PEG removed. She said that most people with significant dysphagia still have one. This gave me so much encouragement and made me feel like my hard work is paying off.

There are definitely days when I don’t want to get out of bed and face another day of fight and struggle. Days when I’m just tired of it all. And yes, it would be so much easier if the simple things like eating breakfast were easy, or if I could just eat the things I felt like, rather than the things with textures I can manage. If I could just grab a snack when I am hungry instead of having to wait for my husband to come home for our scheduled lunchtime.

But when I think about how far I have come, what I can manage to eat now compared to a year ago, two years ago, I am so happy. For a long time, I thought getting better would be waking up one morning and being able to eat again. It’s taken this long to realise that recovery, if it comes at all, will not be like that. It will be slow and incremental. It will be hard work. And there may come a day when I may have to accept this is as good as it gets.

But I’m not there yet. At my last cine swallow there were still more improvements, small ones, but improvements! And that’s all I need to give me the strength to carry on the fight. I still have my business, but it has taken a back seat (thank goodness for amazing staff – they have really kept things on track).

Samantha Profile PhotoEverything in my life really paled in comparison to the fact that I couldn’t swallow. Except my family. Those guys were my rock. And without them, I couldn’t have done this. When things were at their worst and I couldn’t do it anymore, my husband could. When there were no answers and no light at the end of the tunnel, my husband would find it. He took over, he asked the questions, he booked another appointment at the doctors, he fought for me. When it felt like my life had been reduced to nothing but a series of never ending drinks to choke on, I thought of my kids, of their little faces, needing me, wanting me to fight, and I’d take another sip.

This has been more than a journey. It’s been a trek up the Himalayas, and I very nearly didn’t make it. It’s also taught me a lot, about others and about myself. And it’s brought my amazing family closer together. And it’s not over yet.

 

My Symptoms

Along with my swallow failure, I was experiencing deep stabbing pains in the base of my tongue along with shooting pains that continued to pierce through my ear and down the side of my throat. I had also noticed that my mouth had felt very dry, often feeling like my throat was sticking together. My voice became hoarse and gravelly. And although I couldn’t taste much of the food I was trying to eat, I was overcome by regular episodes of a strong metallic taste. Like I had been licking the bottom of a sink! I was experiencing phantom smells, too, and was convinced many times that something was burning, searching the house for the source. Along with all of this, there were lengthy episodes of irregular heartbeats. It felt as if my heart would miss a beat then beat hard, twice, to catch up, then have a long pause again. At times, I felt chest pain and light-headedness. My symptoms seemed so varied and unrelated. That is, until I found out what had gone wrong. Upon testing it was discovered that I had lost sensation to the back two-thirds of my tongue and my gag reflex had also disappeared entirely – I hadn’t noticed this myself with so much else going on. But with cranial nerves V, VII, IX and X impacted, this explained everything: the lack of saliva, the metallic taste, the numbness, the voice changes, the strange smells, the swallow not triggering, the pain, and even the odd heart rhythms.   These would be later identified as ectopic ventricular episodes, when they eventually put a halter on me to record them, I was found to have an extra 1400 ectopic beats in that 24 hour period, which happens when one of the heart’s chambers beats out of sync from the others, and that was just a mild day! This virus had really done some damage.



31 Comments On “My Failed Swallow: A Disability, Not a Mindset

  1. Carol Letzter Reply

    What an amazing and inspirational journey. As a speech pathologist I am grateful to be able to evaluate individuals with swallowing disorders. It is however so frustrating for me to watch my patients struggle with the simple act of swallowing. But as we know swallowing is not such a simple act. It involves many nerves that must be functioning adequately as well as with precise timing.

    I thank you for this story and wish you continued success in your journey back to improved swallowing.

  2. Lynne Smith Reply

    Oh Samantha what an incredibly hard time you have had, my heart goes out to you, I’m so sorry, I was so touched reading your story. I would like to put you in touch with someone that may be able to help you. Please email message me back so i can talk to you. Thank you Kindly
    Lynne Smith
    (from Gems of the World)

  3. Dr. John Amato, Speech-Language Pathologist and Swallowing Disorders Specialist Reply

    Dear Samantha, I just finished reading your story which I found both frustrating and compelling! I trust that at this time you are receiving active and ongoing swallowing therapy as often as possible and you are continuing to improve. I really don’t know very much about your history, but hope that those who are treating you at this point are more knowledgeable about dysphagia, than the individuals who you described in the early part of your story. It sounds as though you are continuing to experience slow and but consistent progress and that’s a good sign. I just want to reinforce the idea that as slow as your recovery may be, its important that you continue to work hard towards the day when you could very likely enjoy the foods you once did. If your dysphagia was determined to be the result of cranial nerve weakness, then I encourage you to keep working hard, every day, and its not unlikely that the hard work and energy that you have been expending for quite a long time will eventually pay off! I treat people with dysphagia every day, who are experiencing difficulty swallowing for a variety of reasons, and among everything you are told and cautioned about, its important to that nutrition is of the utmost concern. With good nutrition, you’ll stay strong physically, mentally, and emotionally! And always remember…Persistence is essential to success!

  4. Frances Clark Reply

    Thank you so much for this article. I had Shingles in my facial nerves, mine is called Ramsay Hunt Sndrome. I realize now I have had mild attacks of it several times but because my face was not paralyzed then I did not know that was what was happening. The metal taste and the heart problems were there as well as some pain. Thank you again for sharing.

  5. Rosanna Reply

    I am living your life without my coward x-husband and add nasal vomitting and acid reflux! . .So sad for you, I know your pain too well. but happy someone understands me-thank you for posting this. .
    I have been like this for years. Live in the USA and thank God For the
    intenet and goggle! Helping myself this way is how I manage to get doctors to help me.
    I wish you the best. Don’t give up ♡ .

    I live in Northern NJ. I’m all ears if anyone can help.

    1. Member nfosdadmin Reply

      Hi Rosanna. Please feel free to email us at info@nfosd.com if you would like a referral to a qualified specialist. Or, consider reposting this on our “Community Forum.” It may begin a beneficial dialogue. The impact of a swallow disorder on a family can be devestating. It is like pulling the social fabric out from beneath the spouse. This is not an excuse, but an observation. It is easy to marginalize what we don’t understand. – The NFOSD Team

  6. Amanda Reply

    Thank you for sharing your journey! You inspire me to continue searching for answers for my daughter.

  7. julia Reply

    i had a virus in 1995 and stopped being able to swallow- literally woke up one day unable to swallow- i have had to live on puree and liquids- i lost many friends and miss family – my father who was my rock passed away in july- he always understood. I realize now i most likely wont swallow normally again in my life. I am going for another barium and endo in a few months – thank you for sharing your story. I also wonder how one dates or gets a partner if they have this. i guess i will have to pray the right man who will love me no matter what- at this point i will need a miracle and i am open to one- i accept one. thank you for sharing your story. you are not alone. there are others out here like us.

    1. Mary Reply

      I know this was from awhile ago, but how are you doing? I too suffer from not being able to swallow and live on homemade soups. The dating thing is an issue. Let me know how you are feeling. Mary from South Philly

  8. Melissa Reply

    Thank you for your story! I’ve been unable to swallow for 1.5 years now, starting during pregnancy, multiple visits to hospitals have found nothing. I’m still going to a SLT. I’ve been on a completely liquid diet for the last three months. The fact that it affects me both physically and mentally is just unbearable. I’ve lost almost 20 kilos. I’ve not been able to enjoy much of the first year with my son as I’ve not had much energy, the constant hunger made me very agitated. My partner is trying to help but there’s not much he can do, it’s heartbreaking. I don’t have much of a social life anymore as I can’t go out much (because most things evolve around eating). And then the reactions from other people (‘Have you lost weight? Good on you!’ or ‘How can it be so hard to swallow’. Even a ‘I hope you get well soon’ doesn’t cheer me up nowadays) I’ve changed from a cheery person full of life into a depressed human being constantly down in the dumps. I don’t enjoy eating anymore, it’s now as you said, all about survival. I’m hoping we’ll find a solution to this, it’s been taking too long..

    1. Diana Cortés Reply

      Hi melissa i have a desorden deglution And Im like ️you , Few energy, Im sad old day, im si hungry This Is a real nigthmare

      I want a contact you, IS posible?
      Im formo Colombia, excuse me english

      I ned HELP or know People whit that Experience.

      My mail IS: rojacereza@gmail.com
      Whatsapp: (305) 736-6994

      Thanks For read me

  9. Kim Reply

    I have had swallowing issues for 10 years. Had every test imaginable. Have been told it’s stress, it’s all in my head, relax, acid reflux, achalasia, etc. No one can figure it out. It’s so frustrating. I’m still able to eat, so it’s not anywhere as bad as yours, I so understand some of your journey.

    1. Diana Cortés Reply

      Hi kim i have a desorden deglution too
      This Is a real nightmare , i have 1 year in This situation

      I want a contact you, IS posible?
      Im from Colombia, excuse me english

      I ned HELP or know People whit that Experience.

      My mail IS: rojacereza@gmail.com
      Whatsapp: (305) 736-6994

      Thanks For read me

    2. Monica Cordes Reply

      Hi Kim,
      I too have had swallowing issues for 10 years. What are your symptoms? Would love to chat with you. My e-mail address is: mlearth29@yahoo.com
      Monica

  10. Sharon Keasler Reply

    Thank you for sharing your story. I have been experiencing something similar eight years. My epiglottis doesn’t retro flex, my tongue is weak and there is little pressure between my tongue and soft pallet. Liquids are basically impossible. The result is aspiration and breathing difficulty. I don’t feel my food or drink going in the “wrong” place. I work on exercises to strengthen my tongue. I also don’t feel where my food is before I swallow – if I look, it is usually at the front of my tongue or all over the place. It does change your life and friends dint understand. I have hoped also that I would wake up one day and be able to eat or drink whatever and enjoy it plus gain some weight. I keep trying and applaud you for going forward.

  11. Kim W. Reply

    This has just started for me. I am able to swallow most times, but when i can’t it just feels like my brain just doesn’t remember how to do it. Ironically, I have had a bunch of sores in my ear which an antifungal seems to help, but it’s never really gone. I have dry throat so badly at times that it seems my throat is stuck together. I have the metallic taste and just started not being able to taste a lot of the foods i eat. My doctor at the Veteran’s Hospital where I get care, seems to think I have some sort of delusional disorder and basically chalks it up to being a mental health issue.

    Thank you for your story. Never quit before the miracle happens.
    Kim

  12. Anne-Louise Reply

    Samantha I have just read your story on news.com.au today, with tears. I can empathise with the struggles of your condition and your frustration with our medical system. When my third child was 7 he started having difficulty swallowing, eventually gagging and regurgitating, even his favourite foods. He was rapidly losing weight but our GP suggested he was constipated and suggested various treatments for same and “come back in two weeks”. After a couple of GP visits, more weight loss and increasing difficulty then even swallowing liquid I requested a specialist assessment. I was angry and disturbed to be told at the initial paediatrician appointment that he had already decided my son had an eating disorder and had already booked him a bed in the children’s mental health eating disorder unit!!! As a Clinical Psychologist I disagreed with his diagnosis and plan and stated that this child has always loved his food, and does not fit the criteria for an eating disorder. I requested further tests. The specialist who assessed his Barium Swallow met us almost immediately after the examination. He advised that our son had oesophageal achalsia and his sphincter was in complete spasm stopping almost everything but a trickle of liquid through. He had already spoken to the specialists and was arranging treatment. By the time we were admitted he was not much more than a skeleton and they could barely get an IV in. He was so malnourished he had to be fed through a nasogastric tube for two weeks before he was fit enough for surgery. My rage at the system, incorrect assumptions and the state this left my child in, was overwhelming. After two lots of surgery and some speech therapy he learned how to eat again, using water and gravity, as his oesophagus will never work properly. Am happy to say he is now a fit and healthy 14 year old who has learned to manage his disability. Your story has touched us tonight and we wish you well in your journey.

  13. Martine L'Eveille Reply

    Hi Samantha wow a lot of your symptoms sound to me like Achalasia. A rare disease whereby there is little to no peristalsis in the esophagus. I was not able to eat for 8 months in 2011, and would often choke on my own saliva at night, then there were days I couldn’t keep water down and I was constantly throwing up, well regurgitating there is a difference, and that would happen at speed without control. I’d have to carry a bag with me in case I had an accident and started to take taxi’s to work instead of the bus for fear of being sick. At first my doctor thought it was in my head, and told me to go an learn how to meditate and deal with my very stressful life. But I knew it was something more serious. I went to an ENT specialist and had several tests and everything was fine in the upper part so he sent me off to a Gastroenterologist and also sent me to have my thyroid checked and a barium swallow. This was beginning January 2012, after those tests I was diagnosed with Achalasia. I was sent to the top specialist in Sydney who sent me to have a manometary test which 100% confirms Achalasia and that was that. I’ve had 2 unsuccessful balloon dilations and then a Heller Myotomy op and have been ok since but symptoms will come back. I also lost 25kg in a few months. I still have a hard time eating and need lots of water to push the food down, at times it does get stuck but thankfully no night time choking on saliva. The worst with this disease is also esophageal spasms, feels like a heart attack, pain in chest, jaw, neck, shoulder blades, throat and can last minutes or hours… I’m thankful to have connected with FB groups in Australia and the US. Achalasia is often misdiagnosed as dysphagia for one but I feel lucky to have been correctly diagnosed within a week or two of testing. During that year life was so debilitating, no socialising, first question would be where is the bathroom, and in the end I would give up on trying to eat. My hair thinned out but other than that I was remarkably healthy. I guess I kept down the equivalent of one entree sized meal for the entire week! I hope you are doing well, but I wanted to say thanks for sharing your story and I definitely resonate with some of your symptoms. Take care,
    Best wishes
    Martine

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  15. Mark Reply

    I hope that You are completely better now. Such a rough story,I a give You all the credit. Be well,God Bless You in a non holy roller way !

  16. Cindy Olivarez Reply

    Thank you for sharing a very delicate situation happening to my son. He has not had any solid foods since October 2015 but all his test have come negative as well. He is slowly doing muscle exercises and his swallowing is getting better but he has never been diagnosed correctly. He went from 344 lbs to 160 lbs in six months. I’m very happy that you have been able to eat a little. I pray that someday he too will be able to eat solids.

  17. Diana Cortés Reply

    hello I’m so happy I found you
    I took one year suffering from the same problem without any diagnosis, beyond the
    symptom of dysphagia , I feel tired desperate as in a horror movie and have lived all that you tell us in the same way , in my country there is no treatment and
    yp medical opinion that I
    keep taking liquids and get used to living lying
    I’m so tires and this article is actually a light to my problem , i dont know anyone young in the world with this problem like ️you And me, I have 33 years old, 2 children and i Need help .
    I appreciate if I can get a personal contact with you .

    att : Diana cortés.

  18. […] She works from her studio now, despite her previous love of interacting with customers, and her husb... businesskin.com/2016/05/23/id-choke-20-times-on-a-yoghurt-the-woman-who-cant-swallow
  19. Rorosanna. Penna Reply

    Oh Samantha, I have just found this website and am reading your story and all the responses. I feel your pain and the way you described the harrowing effects on your life and lost social life is exactly what I feel. It is such a relief to hear it from someone who understands. I have had people trivialising my situation within my family and it is so hurtful and crushing. So I try to make light of my problem so I don’t come across as ‘feeling sorry for myself’ as I have been made to feel from one particular sibling and her spouse. I wouldn’t wish this problem on a dog and I’m trying so hard not to be bitter about it but the fact is that it impacts on every aspect of your life. I stay away from social events because as you say, everything revolves around eating and drinking. For Christenings and Weddings I will go to the church and then go home. People don’t know what to say, but I find it incredibly hurtful and offensive when they often will say “oh it not all about the food you know, you can converse.” If I sit there watching people eating and drinking it just makes me want to cry so I avoid it. Is this wrong? I have had a feeding peg for 7 long years now and it’s only in the last few years that I have even been able to talk about all the problems facing me. It’s comforting to hear that there are others with similar stories who understand.

  20. Dory Wegrzyn Reply

    Great to find your story. I have been as persistent as you to deal with swallowing issues related both to radiation to head and neck and to damage during a root canal surgery all resulting in my tongue not work and gradually increasing swallowing issues for the last 12 years. My speech pathologist stated I would for certain have to go on feeding. Tube and I want to avoid if possible.. I am 59 and love to eat great food and have an organic farm but I would love to know if you have discovered recipes that you have found to provide great taste and good nutrition to the palate! If you have any resources please send if you would. Email: myredtractor@yahoo.com. Hope all of you efforts pay off. The isolation sucks since eating together is such a social thing and I cannot eat and talk – it’ makes going out to a meal very quiet for me since I cannot eat and talk! But I find I push myself to keep trying.. Best to you! Dory

  21. Jelena Reply

    Thank you for the story, it helped me realize what how my baby probably feels. I have a 5 month old baby girl with abscent act of swAllowing. She is fed trough a Ng tube and I just hope one day she will eat on her on. Carry on being brave as you are!
    If anyone can give me tips how to stimulate my baby please tell.
    Thanks

  22. noel Reply

    Dear Samantha
    I’m so glad finally someone can describes what I am going through now. This swallowing problem is beyond words. No one can understand. I’m a cancer survivor and had had massive radiation on my head, from skull to neck and the side effects are accumulative. Other than my hair, which are still healthy, every part on my head are in trouble due to the impact on my cranial nerves. I cannot swallow, spillage, for the last 3 years. Plus very violent coughing that are uncontrollable. I lost my social life and a lot of weight. I don’t know to further describe the agony and daily coping. It’s a disability for sure except no one knows how we feel. People actually warned me that I should not stop eating to lose weight any more or should not be picky with food. What can I say? Would they ever understand? So Sam, great that at least someone like you knows that agony, that pain. Whatever we can manage to get in, no matter how boring, how tough, we need to keep ourselves alive. My speech is also impacted. It’s very sad that people frowns at you and “have no idea what you are talking about”. Yet, we must be survivors on this long trial. We will survive it. Love you. noel

  23. christine bainbridge Reply

    Your story is truly inspirational and I thank you for sharing. I am at the beginning of this journey. I have dystonia. Its generalised and my swallow problems started more than 4 years ago. I didnt realise how serious it was and ignored it when it started. I have progressed now were I am working with SLT I am only allowed fluids as everything else chokes me. I get my first scan next thursday to see what is causing this. It is affecting my breathing and I have already had pneumonia.
    Stay strong. It is great to read something positive at a time like this.

  24. Matt Reply

    Weeks ago i lost my ability to swallow and have had the camera down my throat, barium swallow im on a liquid diet as iv choked numerous times, but no diagnosis yet.I lost my voice twice due to illness that i didnt get medication for as i thought it was just a bad cold. Im 30yrs old living in the uk, my family say ” im not trying to eat” its fustrating the people that are supposed to support you don’t even understand. I have taken sick leave from work as even liquid is difficult to get down and the embarrassed of choking on liquid at work is not very appealing. This leaves me starving, loosing weight fast (i only weighed 10 stone to begin with) and feeling alone in all this. Im got a hospital appointment on the 16th, 2 weeks from now, so i hope i can get some answers.

  25. Sophie Murray Reply

    Thank you for sharing this – it really hit home and I would love to include a quote in our training if you don’t mind Samantha as a reminder from a patient perspective – would that be OK? I work for a group of care homes for whom dysphagia is a real issue for many.

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