Coping with Dysphagia 2
I wrote a blog piece about dysphasia in May and you might want to read it. HERE it is.
Dysphagia means difficulty swallowing, and it has a variety of causes. The cause of my dysphagia is IBM, and unfortunately, it’s a common symptom, particularly among women. Having dysphagia for any reason increases the risk of aspiration pneumonia, which is quite severe, so I have been searching for anything that might help.
I read that the vagus nerve is responsible for the swallowing muscles. I read that drinking very cold water and then gargling a mouthful of cold water stimulates the vagus nerve. So does singing or humming. So, my wonderful husband hears plenty of my off-key singing these days. I seldom get the words right, either. I am so grateful to have the kind of support he gives me. (Here is a book on the vagus nerve.)
I also have written a post about hyperbaric oxygen therapy (HBOT), which has profoundly helped improve all my symptoms, including dysphagia. During the first two weeks of treatment, I went in five times a week. After that, I signed up for treatments of 1-hour sessions twice a week. I felt more energy quickly, and my complexion became rosy again. What led me to HBOT was a case study I’d read of a woman who had been using the treatment for something not IBM-related but subsequently had noticed improvements in grip strength and swallowing.
During the first several weeks of my treatment, I doubted whether it was any help at all. One day, after 30 treatments, I picked up a water bottle in my car and twisted the cap. To my surprise, I got it off. So then I started trying things I had been unable to do, like opening the dishwasher, unplugging my Tesla, and twisting off the caps of other bottles and jars. I was able to do most of them! So I decided it was worth doing all those treatments, even if that was all I got out of it. I also had improved stamina, increased lung capacity, and better sleep.
Even though I had stopped hoping against hope that it would fix my swallowing, I kept on doing treatments. This last month, I have been measuring how much water it takes to get through dinner. I had to take a bite, drink, swallow, and repeat, and I drank about four 12-oz glasses for most meals. Lately, my husband has been bringing me a sandwich for lunch, as I’ve been doing some things on the computer that I don’t want to interrupt, and he always brought plenty of water. One day recently, he forgot the water. Without thinking about it I started eating and found I did not need the water anyway. Since then, my eating has been more and more pleasant as I get better and better at swallowing. When I am exhausted, the dysphagia flares up, or if I am talking too much while eating. Because I do not want to aspirate while eating, I am very cautious, but I can honestly say it is less stressful to eat out and is improving a little bit each week.
Here is a book on HBOT.
I have been keeping my weight at the right place for my doctors’ orders for two months and can relax slightly, which seems connected to better swallowing. There is no guarantee, of course, that this will continue to be the case as this disease progresses, but I want to hold off the harmful effects for as long as I can. Therefore, I eat healthy and exercise, but it isn't easy sometimes.
I have said this before, but adjusting to a new way of life is challenging emotionally. I have to give myself time to adapt and learn. We celebrate even the most minor victories along the way. I reach out to friends and family for encouragement and tell them my dilemmas when going somewhere together so they don’t get surprised. They are usually still up for the challenge. And this blog continues to help, too.
I appreciate you!
“All we have to decide is what to do with the time that is given us.”
We have a bookshop store HERE where you can find books Linda has read or that look helpful for folks dealing with chronic diseases of various kinds. You may see links to those books in the text of our blog posts. We do get a small financial reward if you purchase a book through the shop, but the price to you is the same. It also helps support independent booksellers. Thanks!
This blog post is based on personal experiences and is not meant to provide medical advice. Always consult your healthcare professional for personalized guidance on your health journey.
