First In-person Support Group
Many of us like to talk with others who have experienced what we are going through to see if we are on track or if we can learn anything that might apply to our own lives.
I volunteered to restart the Myositis Association support group for Arizona and Nevada after its previous leader felt their disease had worsened to the point that they needed to pass on their duties to someone new. I had not attended any of those meetings, but I randomly attended one on the TMA calendar page to see what they were about. I was impressed that people felt safe enough to share what they were going through and that everyone committed to confidentiality in the meetings.
Another person with IBM in my town with whom I walked periodically said she would be a co-leader, so I signed us both up. We’ve facilitated three support meetings so far via Zoom. Other than one session with a technical glitch, we get about six or eight people each time. We immediately heard that people had enjoyed the occasional in-person meetings they’d had in the past, so my co-leader and I took the lead.
My neurology clinic volunteered space for our meeting, so we met on January 11th there. Thirteen folks attended, though I expect that number to grow as communications and outreach improve. Two folks were in wheelchairs, so we appreciated the room's accessibility. One individual brought their support dog. It was a great mix of folks with varied experiences coming together to share.
Some were newly diagnosed, others have lived with the disease for some time. And, of course, people experienced the disease differently, some losing strength in their hands, some with difficulties swallowing, some became very weak in the legs early on, and the pace of deterioration varied greatly.
We talked about the various challenges we’ve experienced and solutions we’ve found, and it was like each person there had a piece of the puzzle we could put together to get a good image of how to live with IBM. We also shared less tangible things, like how it feels to be given the evil eye when getting out of the car in the disabled parking space, since our disease is, in its earlier stages, invisible to others. There are a lot of emotions tied to becoming physically weaker and more vulnerable, and it was a safe space for us to share.
We left the meeting with some questions to find answers to, like how to get help from the Veterans Administration, how to decide on which equipment to purchase and when, how to better understand remodeling issues and find good contractors, what kinds of trials might be going on, and how to know which medications and supplements are contraindicated in the disease. Some of those I might work on and share here. Others will explore some of the other questions. Getting together as a group with a common challenge lets us put our heads and hearts together.
Some web resources surfaced in the meeting, which I’ve put below.
Kourage Health This is a free online exercise program with a doctor’s note.
Hyperbaric Oxygen Therapy This is the place where I go.
Honor Health Neurology Clinic Dr. Hatch is the physician in charge of my care and my favorite by far, but two other physicians specialize in IBM at the clinic.
Ability 360 is a gym in Tempe that accommodates people with disabilities and hosts assistive sports teams and outdoor recreation. It is part of a bigger organization that offers additional services, such as help with remodeling homes and some live-in facilities.
Wonder Pole: This is a moveable, tension-mounted floor-to-ceiling pole for helping folks get in and out of bed or chairs, in and out of showers, etc.
This website allows you to look up pharmaceuticals by name to view contraindications and side effects. I would look for any side effects having to do with autoimmune, inflammation, and muscle issues, particularly as IBM is not well studied.
This website does the same for vitamins and supplements.
Thanks again for reading my blog and for your support. It’s important to remember that we don’t face life and its challenges alone.
“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.
