Living with Inclusion Body Myositis: Jim Mathews Shares His Uplifting Outlook
In this week’s episode of The Medical Maze Podcast, guest Jim Mathews provides a raw, honest perspective on coping with inclusion body myositis (IBM), a rare muscle wasting disease.
Misdiagnoses Are Common with This Lesser-Known Disease
Jim explains that IBM is often initially misdiagnosed as other more well-known terminal illnesses like ALS. This is largely due to lack of awareness of IBM among many physicians. Jim himself was correctly diagnosed relatively quickly, but notes about 20% of IBM patients get misdiagnosed first, leading to understandable anxiety.
Gradual Muscle Deterioration Over Time
One of the defining traits of IBM is that it causes gradual muscle deterioration over months and years. Jim shares that while exercise can temporarily “tone” unaffected muscles to improve strength short term, IBM slowly progresses without remission. He transparently details the mobility and dexterity losses over his IBM journey.
Uplifting Attitude: Focusing on What You Can Do
What stands out most in Jim’s interview is his admirably positive perspective despite IBM’s disabling effects. He focuses on embracing what capacities remain versus grieving abilities lost. Jim provides real examples of how he adjusted his mindset during his advancing IBM. His uplifting outlook offers encouragement for anyone struggling with rare degenerative conditions.
Latest Research and Clinical Trials
Jim also discusses the latest IBM research, including promising clinical trials of emerging treatments that could slow progression. He explains assistive devices that help maintain independence and disability accommodations available. While a cure remains elusive, progress is being made.
Inspiration to Overcome Adversity
While inclusion body myositis itself may not be well known, Jim Mathews’ incredible resilience certainly deserves wide recognition. His story provides inspiration to persevere and stay encouraged in the face of adversity. Don’t miss this incredibly candid perspective on surviving and thriving while coping with a rare chronic illness.
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