Dysphagia - Does anyone have this?

By lorider70 Latest Reply 2013-02-22 09:07:23 -0600
Started 2013-02-20 19:58:47 -0600

I am a type II since 1989. 69 yrs old, 5'9", 146 lbs. BS is usually around 110 fasting, last A1C was 6.8 in December I have had dysphagia for several years (inherited from my Mother) I am tryins to find someone else that has this and what they do to contend with it. At present I have to be careful to eat and drink slowly to avoid choking and coughing. I know there are procedures to correct this; but have heard that once a person has it done, you have to have it done again periodically and I am not too sure I want to start doing that too soon. I am also trying to gain a little weight; but with the dysphagia and having to eat slowly; I seem to fill up pretty quickly and therefor can't eat any "extra"

3 replies

Nick1962 2013-02-21 19:02:32 -0600 Report

I do not have it but had to cook for patients who did while I was still in the business.
You probably already know there are different types, stages and causes, as well as different treatments.
You may have to see an ear, nose, throat, head, and neck doctor, a speech-language pathologist, or a neurologist. I have not heard of a “medical” procedure to correct it, but more like physical therapy.
In nearly all cases, the thinner liquids we had to prepare (juice, coffee, tea, broth base soups) all had to be thickened. We had a tasteless thickener we could get from a pharmacy (which was basically arrowroot or egg white) that worked well. I did have to eat the stuff myself for quality control purposes, and thickened coffee isn’t great, but just like being diabetic, you’ll adapt.

Solid foods like meatloaf or hamburgers (or basically any meat) we’d slice like normal but grind up just enough to hold its shape, and then serve with gravy. Again, not attractive, but edible. Cauliflower was also similarly mashed. In extreme cases we’d puree foods and re-mold using the thickening agent - no chewing needed. We had molds to make pureed chicken look just like a natural chicken breast. I have made complete thanksgiving meals, and even managed to put out a pretty convincing and tasty pizza for a young one who was temporarily suffering during chemo treatments.

Cream soups always seemed to be popular, and basically any broth soup can be put in a blender and thickened while still remaining tasty. It can be done, but without knowing your extent or if it’s permanent, I wouldn’t want to make any further suggestions (but I can).

lorider70 2013-02-21 20:33:04 -0600 Report

My Mother had this for years, and refused any treatment for it. She passed on in 2004 at age 91. By then she had to have her food pureed. I have had it for 3 or 4 years now and can handle almost any food as as i don't get in too much of a hurry or try to wash something down with a drink of any kind. Just keep chewing and drinking separate. Funny part to me is that pizza, a burger, etc is easier to handle than mashed potatoes for example. The last bite of anything never wants to down easily, feels more like it wants go up instead of down. The only "treatment" I've ever heard of for it was a dilation proceedure the Dr. suggested to my mother and she was old enough at the time that the thought of that scared her and she refused it. I've heard that once you try that, it usually has to be repeated as the problem will reoccur somewhere further down the line.I have been checked out and there isn't a real "cause" such as injury, tumor, etc, so that was good to hear. It does however make gaining any weight nearly impossible since slow eating seems to go hand in hand with filling up quickly. Being a type II diabetic isn't in my favor for gaining a litttle weight either unless I throw the BG levels to the wind.I don't have much of a problem with drinking as long as I take smaller sips…it's a strange thing to deal with to say the least. I would be interested to hear the physical thearapy that applies to this if you have the time to explain it a little and then I could approach my Dr. with it and see what we could set up to try. Thanks for your response, I really appreciate it

Nick1962 2013-02-22 09:07:23 -0600 Report

I had it explained to me by a speech therapist so i could understand the dysfunction and prepare the food accordingly. Few people ever think about the swallowing process - how the tongue actually works like a shovel to get the food to the back, where your esophagus takes over and moves the food down your throat like squeezing toothpaste in a tube. Depending on where those seemingly automatic functions fail is where the treatment is determined. Sometimes the tongue works, but the esophagus just isn’t in sync (I think that’s called “high” dysphagia). Other times the failure is further down the throat where everything up top works, but there’s something that prevents it from proceeding on down. It can be nervous system issues like multiple sclerosis, muscular dystrophy, or Parkinson's disease, or an immune system problem that causes swelling. Esophageal spasms (the esophagus suddenly squeezes) also prevents food from reaching the stomach.
I think it might be worth seeing an ENT, neurologist, and/or a speech pathologist because it could be that just a few neck muscle exercises could help. But then I’m not a doctor.
The pizza was an interesting challenge. We got a pizza hut meat lover’s pizza, stripped off the meat and sauce then put the crust in a food processor and ground it up enough so it didn’t need to be chewed (the kid was just too weak to chew and wouldn’t take a feeding tube). We spread that out on a cookie sheet, replaced the tomato sauce, added some goat cheese to the mozz, and ground up the meat and spread it out in little pepperoni shapes and re-baked the whole thing. Looked like a cartoon pizza, but just like real pizza, the flavors changed by the mouth full and it could be eaten with a spoon – no chewing necessary. Washed down with a slightly thickened chocolate milk and the kid was full and happy. We went on to create a whole list of things like mac & cheese (with the help of a creative cake decorator) that looked and tasted pretty darn close to the real thing. It was a lot of work, but it can be done.

Next Discussion: So I Have To Ask.... »