Latest Visit to UC Irvine
My husband and I purchased a new Tesla Model Y and drove it to California for my third visit to the clinic in Irvine. The road trip went well. The car is a lot quieter than the previous model, and we had fun stopping at various places to charge up. It was a great trial run for our upcoming trip to Texas for the annual Myositis Association Annual meeting. I thoroughly enjoyed and gained a lot from other conferences, so I’m looking forward to this year's event. I have found that driving these small to midsize distances works better for me than flying, which has become very stressful for me.
First, a quick reminder about the INSPIRE-IBM study and its importance: it's a natural history study, meaning it gathers information about patients and observes how they change over time. The study also provides each participant with a way to measure their progress. The researchers aim to identify biomarkers and tests that can reliably calculate the progression of inclusion body myositis.
Each of my visits to the clinic is with the same physician assistant, and we’ve become fast friends. As with all the visits, we start with breathing tests, where they measure the length of time you can breathe in and the length of time you can breathe out. My score was 92% at my last visit, but it stayed at 87% for this visit. That was while sitting up. At my previous visit, I was 87% lying down, and at this visit, I was 90%. So it averaged out. I did better on the grip measurement. The right hand was 20% 1 year ago and 25% this year. Thank you, PT and Hyperbaric Oxygen therapy! My left hand stayed the same. Many of the muscle measurements remained relatively unchanged, though my wrist strength did improve. I have been working on exercises to strengthen my legs, and I have also maintained my daily walking routine. Success! The PA had me fight against them pushing this way and that, and my elbows, knees, legs, and ankles were all really strong. Interestingly, my neck strength had improved, and my hands gained strength as well. (See posts of prior visits HERE and HERE.)
Previously, I mentioned that the Myositis Association has a scoring system worksheet to help identify and analyze the progression of the disease, which is based on the number and type of things you need help with or can do independently (e.g., getting dressed, bathing, walking). I check in with it now and again to see how I’m doing, and it looks like, as of right now, I’m stable, rather than progressing to further disability. My elbow break set me back a bit, but thanks to neuro physical therapy and all the work I do to stay as mobile as possible, it looks like I’m back on track.
Again, I’m happy to be part of the INSPIRE study and hope that what they learn from my experience can help others. I hope the hyperbaric oxygen therapy catches the researcher’s attention, as it has made a significant difference for me. I will continue to stay up-to-date with all the studies I can and participate in those for which I qualify, because I know that supporting research into this disease can make a significant difference. Of course, I will keep you posted as I continue down this path.
“All we have to decide is what to do with the time that is given us.”
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.
