Dec 082013
 
Using my techniques, I am now able to eat a varied diet.

Using my techniques, I am now able to eat a varied diet.

Like most people with inclusion body myositis, I have weak swallowing muscles. This causes me to have trouble forcing food to go down the esophagus and as result it will try to go down my trachea. Over the years I have had several swallowing studies including two at UCSD Medical Center. These merely confirmed what I already knew, however they also allowed me to see, by way of the fluoroscopic studies, exactly what was going on. I was able to see that the food got trapped in pockets near my vocal chords. This explained why, when I would try to speak while eating or shortly afterwards, I would almost always end up choking and having a violent coughing spell.

The doctors had several suggestions, including having my throat expanded, or having Botox injections, or even stopping eating altogether and having a feeding tube inserted in my stomach. I have known people who have pursued each of those routes. The first two generally do not produce lasting results and the feeding tube would require a higher level of care. So I decided to take what I learned and figure out a way to eat successfully. I’ve been observed by a speech therapist while eating and he said that I was using the techniques that he would normally teach to someone to help them overcome swallowing difficulties. With that kind of encouragement, I have decided to publish a video showing me eating accompanied by my own explanation in the hopes that it might help others who are struggling with this problem.

As always, I caution you that I am not a medical professional and that this is not medical advice. I am simply showing you what works for me and I cannot predict whether it will work for you.

  12 Responses to “Dining with Dysphagia”

  1. Thanks, Mike. My IBM generally is not as far advanced as yours except for the dysphagia.
    Like you I don’t fancy the knife or the Gastric Peg as a solution. You have put all the things I have gradually learned to do myself in such a logical and easy manner. About the only difficulty I have is drinking more than sips of water. I avoid cold drinks, fizzy drinks and sharp flavoured drinks. They just close my throat up. My wife laments that I don’t even have a glass of wine any more although a sip of port does seem to help my talking. I use a thickener such as guar gum to slightly thicken liquids and it seems to help a great deal. I now know how an old bull feels chewing his cud. Cough it up, chew it again, swallow a smaller bit at a time! Once again, thank you. Lox Cabassi

  2. thank you mike. this is a great resource. i’ve had trouble with peas and beans but will try them again. your sip suggestion might be helpful too. i’m trying to avoid the “tube” as long as possible. appreciate your sharing.

  3. I’ve had the big D for several years and after a couple of really scary incidences with lettuce, I finally had to give it up. . The only lettuce I can eat is iceberg lettuce. Unfortunately I’m not a big fan because of the lack of taste and nutrients in it. I really miss salads and am interested in what kind of lettuces you are able to eat. Great video and your website is outstanding!

  4. Mike, great advice for folks that just start having problems with swallowing. I do admire your spunk and courage at how you learned to adapt whenever it becomes necessary and find the solutions that best fit your own situation.

    Observing the loss of your hand and arm function is heartbreaking to me but also gives me a sort of a reality check since I will have to face a similar fate in the future. I do admire you for posting this video, hang in there and I hope you will continue to be able to still find joy in your life. Carpe Diem!!

  5. Mike, you’ve done an excellent job showing how to cope with dysphasia. I have IBM, and swallowing is not really a problem yet, but I really appreciate your showing me what to anticipate. Keep up the good work!

  6. Thanks for the great video, Mike. You express in words things I have noted for myself. I rather liken my experience of eating with having a pouch someplace in the back of my throat where food would accumulate. My IBM hasn’t quite come to the sling-shot method of food delivery, but it is close. The tips are wonderful to have.
    BTW, I noticed the art work on the wall. I’m guessing that you painted a number of the beautiful pieces. You are a wonderful person.

    • Thank you Carolyn. I really appreciate your comments. The paintings on the wall behind me are a mixture of mine and my late wife’s. I believe the one on the far right was done by my wife’s instructor.

  7. I believe that most of my coping skills, clever adapting devices and Ideas about remodeling have all come from you. Thanks loads.
    John

  8. Thanks, as a Speech Pathologist, I thought this was brilliant.Really appreciated you making this video. I’ll be showing it to any students I take on from now on.

    • Thank you! It is very rewarding to know that I am on the right track and that my video could be helpful.

  9. Mike, A friend of mine also with IBM has introduced me to your book and website. As an occupational therapist I have found them very valuable and with your permission would love to share these resouces on the AOTA discussion group sites. Lynn

    • Lynn, I would be very happy to see my material receive wider readership. Please feel free to use whatever you find useful.

      Mike

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