Second Visit to UC Irvine
We’re so excited to have been writing this blog for one year now.
Thanks so much for being part of our journey!
I wrote in an earlier post about the INSPIRE-IBM study that aims to gather information about folks with IBM and my first visit to UC Irvine as a participant in that study. This post is about my second visit this June, which took place at the actual Research Center on the campus, a fantastic facility. The PA who worked with me took their time and I really felt listened to, which was great.
First, a quick reminder about the study and why it’s crucial. First, it is a natural history study, meaning it gathers information about patients and observes how the patients change as time passes. Natural history studies are extremely important for rare diseases because a common denominator might be found among those participating. They also give each study participant a way to measure their own progress. The question they are hoping to answer is, “Can the study identify IBM biomarkers, tests that could be used to reliably measure the progression of inclusion body myositis?”
Participants are asked to answer questionnaires each visit, which are sent in advance by email and are 31 pages in length. I will repeat the survey three more times so scientists can identify any changes.
Once again, a Physician's Assistant performed various muscle tests to see how much pressure it took to keep me from holding different positions with arms and legs. Physical therapy repeated these tests, using tools that gave objective measurements, e.g., 20#s of pressure. This second visit included comparing the test results from my last visit. Most of my scores have risen or improved. I had even increased my lung capacity, possibly due to the hyperbaric oxygen therapy (HBOT) I’ve been talking so much about. My legs were better than last visit, only by very small decimals, but at least they were better. My one-hour walks every morning on weekdays are paying off. My arm and shoulder strength is the one thing that got worse, so I’ll bring this up with PT on my next visit here at home.
I am also applying to get into the Zoom classes at Kourage Health - a nonprofit that believes Exercise is Medicine. They help folks with chronic diseases do as much exercise as possible to remain at least where they are and get no worse when possible.
Previously, I mentioned that the Myositis Association has a worksheet to help identify and analyze the progression of the disease. It is a scoring system based on the number and type of things you need help with or can do independently (e.g., getting dressed, bathing, walking). The INSPIRE folks ask the same questions and compare the baseline measured at the first visit to subsequent visits like this one. All my scores were better except for my hands, which didn’t surprise me. I can thank the occupational therapy and the HBOT treatment for those.
I went to Irvine with the same friend as last time. Once again, we slated extra days for fun, including eating out, walking the pier, playing dominos, checking out the Queen Mary, and hanging out together at the seaside. This time, I requested a wheelchair to the plane, to be safe in the airport. I can undoubtedly understand better how challenging it must be for folks who need a wheelchair all the time. With someone else pushing, it really can feel out of control. We even nearly bumped into people and some of the bumps in the floor were pretty jarring. There were steep slopes and tight squeezes, making it clear that there is much work to be done in disability accommodations, particularly in the travel industry.
I’m happy I get to be part of the INSPIRE study and hope what they learn from my experience can help others. It’s been an exciting journey for me so far, with some things helping and others seeming not to. I hope the HBOT gets the researcher’s attention, as it’s made a big difference for me. Regardless, I feel good about supporting research into this disease that can make a difference.
“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.
