How little other people understand what we go through

[Rip Van Winkle]

During these past 8 years of being unable to eat, I have felt so alone and desolate in this private hell. People have no idea how being denied the pleasures of eating pervades so much of one’s social interactions. I hope this forum will bring together our fraternity and sorority of sufferers to help one another cope and commiserate. It seems extraordinary to me that I do not come across others with chronic dysphagia. Perhaps I will meet some here.

I tried to get the staff at Yale-New Haven Hospital in New Haven CT to form a support group. While the chief of Otolaryngology thought it was a great idea, the effort failed. After a year and a half of fits and starts, over 400 letters were finally sent out to patients at YNHH who were targeted as suffering CD (chronic dysphagia). There were 4 responses, and all of them complained of dysphasia (a language disorder). Not a single response from anyone with CD. I can only surmise that the study was flawed. Faced with my conclusion, the organizers declined to proceed, saying the lack of responses proved it was not so much of a problem.

So, in the words of The Big Lebowski, I abide.

[nfosdadmin]

Hi Rip, Thanks for your efforts in trying to start a support group.

I have a friend who has not been able to eat or drink for about six months. I don’t know if that’s chronic – but to me, it seems like a long time. I can’t imagine facing that challenge for 8 years! I wondered if you had any ideas of good “social activities” that don’t involve eating or drinking. I suggested going to the movies last time we got together, thinking that wouldn’t involve eating or drinking, but the smell of the popcorn was hard for us both to ignore.

Thanks in advance for any ideas you – or anyone else – might have!

[Rip Van Winkle]

Hello, Elizabeth,

So sorry about your friend. While there are lots of things to do that don’t directly involve eating, as so many people never tire of telling me as if it would assuage my unhappiness, it is the indirect effect of chronic dysphagia that is so very trying. Snacks, having a nice cold drink, seeing those luscious pizza commercials with the dripping cheese and dipping sauces, watching movies with the meal scenes, attending dinner parties, and all day outings without a place to use one’s tube. Then there are the insidious side-effects—in my case, loss of the sense of taste and vastly diminished saliva production which results in not being able to exercise vigorously.

But I do watch movies at home—hurray for cable TV—I read a lot, and I take half day trips to museums or to play golf. Of course, it’s when it comes time to have a bite at the museum cafe or join my golf friends in the grill room for lunch that the CD is particularly odious. The loss of social interactions in those instances just adds to the depression one feels with CD. So I abide.

The best you can do for your friend is be positive, but never downplay his condition in an effort to make it less onerous. CD is undoubtedly the worst infirmity I can imagine. I met a guy who was a quadriplegic and had CD, and he said the CD was infinitely worse than his loss of mobility. In short, no amount of lip stick will make this pig pretty.

Rip

[tonick3540]

Hi Rip,
I too know exactly how you feel.Back in November of 2013 I had a larger than golf ball size brain tumor removed. In the process cranial nerves 7-12 were either damaged or destroyed.Up until that point I was,for all practical purposes normal.That of course changed,not only did I lose the total ability to swallow,I also lost my ability to stand and walk, talk normal,hear out of my right ear, and my entire right side is weakened with Bells palsy on my face. One of the biggest challenges for me to deal with or try to overcome is(in general)people have absolutely no idea how life altering chronic dysphagia is to a person. I get tired of hearing, “don’t give up”,”keep a positive attitude”, all the time they have just had a fattening and/or big meal or they’re going out to eat & drink,not thinking for a moment IF it was them in this situation would they be so positive. It is now 2016 and 12 operations,and 8 procedures later I’m still fighting to swallow. I have recently begun to swallow small amounts (3oz-5oz) of water because of a surgery that I had back in December 2015. Dr Peter Balefsky and his team at UC Davis were a GODSEND.I cant say enough about him, he has given me real hope for the near future and beyond. Good luck to you on your future IF there is any question you have for me please feel free to ask.

[Rip Van Winkle]

Hi, Tonick3540,

Glad you found this forum, and are sharing your experiences.

I totally agree with you about well-meaning friends saying “be positive,” when we know there is no amount of positivity that will reverse or ameliorate our respective conditions. But that’s what friends are supposed to do: try to make us feel better. That they are there is a good thing, though, and for that we should be grateful.

If you enjoy reading, here are some authors whose works are real page turners, and have helped me enormously to escape: Ken Follett. Nelson de Mille, Alan Furst.

To this I add be strong, my friend.

Rip

[Katwoman57]

I too, struggle with dysphagia on a daily basis and have for almost 9 years. From the outside, I look fine to other people, but the battle and suffering within are sometimes unbearable. My difficulty is in swallowing liquids instead of foods, unless it is something juicy like fruit or soup. I had several episodes while drinking water or coffee in which my larynx would completely close and I could not breath, cough, or talk. I just had to wait it out and eventually my throat would start to open back up. These events were so terrifying that I was afraid to swallow liquids in fear of it happening again. I went to and ENT and he discovered I had GERD which had caused inflammation of my larynx so that was probably why it was occurring. He put me on Nexium to heal the larynyx and sent me to a speech therapist because by this time I could no longer swallow properly. I could no longer swallow without concentrating on it and trying so hard not to choke. I went to speech therapy and did exercises etc until I could no longer afford it. It did not help. I then thought that maybe a hypnotist could help me. No help there either. I had to start taking anti-depressants because I was becoming depressed, anti-social and withdrawn. It is so awful to be so thirsty and not be able to quench your thirst. I am chronically dehydrated which has affected my skin and hair. I have a lot of UTI problems. I then tried going to see a clinical behavior psychologist to try and change the way I think about swallowing. I attended several sessions, with little help, but had to stop because of financial issues. It has now been almost 9 years and I still battle this every day. I have to get up an hour earlier than normal just to try and get 8 ounces of water down before I go to work. I don’t dare take a sip of anything in front of anyone. I am afraid of choking in front of people. When I eat, I can eventually swallow, but the food lays in the back of my throat until it “feels” right and my swallowing function finally kicks in. I feel that my swallowing muscles no long know how to work correctly. I feel like I fight this battle alone, that no one understands, and there is no one else who could possibly have this problem. I find myself watching other people drink a glass of coke, tea or whatever and I just wish so much that I could do that again!! I found this website and I am looking forward to being a part of it. Thanks for listening.

[Rip Van Winkle]

Hi,Katwoman57,

You are so brave with this struggle. Of course, I know exactly what you are going through and you have my heartfelt sympathy. I have just passed the 9th anniversary of being unable to swallow, so I thought I’d share with you some the ways I cope with what you described. You are so fortunate you can still swallow, and even though it is difficult, your swallowing muscles are being exercised when you use them.

In my case, I use a G-tube (gastrostomy tube) to take all my food, which is, obviously, liquid. It is called Boost Plus, and it is by prescription from my physician and covered by insurance.

With respect to drinking, as I am unable to swallow (the muscles at the base of my tongue that govern swallowing were fried in the course of radiation for Tonsil Cancer), I must let gravity do the work. I take a breath, take a sip, tip my head back, and let the liquid (coffee, water, tea, scotch, vodka) flow down. But the key thing I must remember is to take that breath and hold it before I take the sip. It is vitally important to take that breath. Otherwise I have that dreadfully frightening reaction you described.Sometimes I forget to take the breath, and I really have to work to get some air in in order to resume breathing.

Once I have quote swallowed unquote (I’m not really swallowing), I then let out the breath and it moves what little bits of liquid still remain in my esophagus. It sounds easy but took me quite some time to figure it out.

I wish you the best, my dear, and hope this has been helpful. Keep on posting, and we’ll stay in touch that way.

[Katwoman57]

Dear Rip,
Thank you so much for that response. It is so comforting to know that you are not alone. I am so glad that you are able to get nourishment through your G-Tube. I have often thought if that is not the answer for me as well. At least some way to get water into my body. The last nine years of chronic dehydration have wreaked havoc on my health. I no longer can exercise or exert myself because I cannot drink when I am thirsty. If I take a long walk, I get dizzy, faint and nauseous. My hair is falling out by the handfuls. My skin is wrinkling SO fast. I am looking so old and it is depressing. I used to have people compliment me on how much younger I looked than I am, but no more. I look older than my age, in my opinion.
I want you to know that you are in my thoughts and prayers with your struggle. Thank you for your response and for taking time to listen. I am going to try your technique!! Hopefully, in time, we will both get victory over this. Continue to heal, my friend.

[dianewolff]

I am the author of a series of eBooks for the dysphagia kitchen. I consulted with an eminent speech language pathologist by the name of David Fagen, who practices in Florida.

David told me that he wanted his patients to be able to join in the social events of life, not to be excluded.

So I wrote an eBook called “The Purees of Fall: Game Day.” I included recipes that could be made for a social event, such as a Game Day, but could also be pureed. The person with dysphagia can eat a tweaked version of the classic American dishes.

I use a healthy cooking method, the electric pressure cooker, to render the food moist and tender for the puree. I use quality go-to ingredients. The sauce is the medium of flavor.

I have a Free Download of the “Master Sauce Guide.” My blog contains tips, tricks, tools and techniques, for bringing flavor and enjoyment to the puree kitchen. You can check out Essential Puree on Twitter and Facebook.

http://www.essentialpuree.com

From Diane

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