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Inclusion Body Myositis: I'd like to talk with others

Autoimmune Diseases | Last Active: Oct 20, 2023 | Replies (97)
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@monicasue

I am 68 years old and was just very recently actually diagnosed with IBM thru a muscle biopsy. However, I have been dealing with the disease for about 16 years. I attributed my issues to old age or arthritis. My Dr. says the disease has progressed very slowly in me. It all started out years ago as mild issues when climbing stairs and slight balance issues. I am one of the lucky ones who also has dysphagia and it is my real issue. It has gotten pretty severe and I have lots of prbs getting some foods down. I am learning what to eat and how to deal so that I don't end up with aspiration pneumonia (twice already) I am ready to learn as much as I can about how others deal with this disease.

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Replies to "I am 68 years old and was just very recently actually diagnosed with IBM thru a..."
John, Volunteer Mentor | @johnbishop | Jul 30, 2019

Hello @monicasue, Welcome to Connect. You mentioned that dysphagia is your real issue and it's hard to getting some foods down. Are you able to share a little more about what you've learned that helps you? Maybe you've seen some of these but I thought I would share them just in case.

NIH -- Dysphagia
-- https://www.nidcd.nih.gov/health/dysphagia

5 Easy Swallow Strengthening Exercises for Dysphagia
-- https://www.napacenter.org/swallow-strengthening-exercises/

Swallowing Exercises: How to Do Tongue-Strengthening Exercises
-- https://www.hopkinsmedicine.org/health/treatment-tests-and-therapies/swallowing-exercises-how-to-do-tonguestrengthening-exercises

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Becky, Volunteer Mentor | @becsbuddy | Jul 30, 2019

@monicasue. Welcome to Connect! I have a couple of suggestions for you. Check with a recreation center near you to see what they offer for seniors. I found a strength and balance class that mostly focuses on balance issues. I have severe osteoporosis from steroid use trying to control my autoimmune disease. I also use yaks tracks on my shoes when it is snowy or icy. They are a system of sharp cleats that you can pull on over your shoes. Just great! Also, if there is a hospital nearby, you can ask your doctor for a referral to a speech therapist. They were able to help me speak and swallow again. And Medicare paid. 🤗. I certainly hope you’ll stay in contact with us and let us know your progress!

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