# ‘You Have to Stay Positive — But You’ve Got to Get to That Point First.’ By José Vadi Aug 23, 2021 • 3 min read _Blog post originally written by the AllStripes community team. AllStripes was acquired by PicnicHealth in 2023._ Ten years ago Blaine was in the gym every other day, running 5 and 10K’s, raising a family and working as a retail manager in California, when something out of the ordinary happened at work. “We got a shipment in and I tried to open it with my hand and it was a struggle. Weakness, yes, but also a feeling in the mode of someone scratching on a chalkboard — it was irritating.” He had a similar experience at the gym doing progressively heavier dumbbell exercises. Another time, Blaine was doing yard work when his legs became tangled in some weeds and he fell. This happened in front of his family, who presumed Blaine was joking. “I went down, and I said, _Why in the hell did I fall?_” It’d take nearly four years before Blaine was diagnosed with inclusion body myositis (IBM), an inflammatory muscle disease and [the most common muscle disease](https://my.clevelandclinic.org/health/diseases/15700-inclusion-body-myositis) in patients over the age of 50. Patients with IBM experience muscle weakness and muscle wasting that slowly gets worse over time, particularly in the thighs, fingers, wrists and forearms. Some patients also have difficulties swallowing. There is currently no targeted treatment for IBM. “When you first find out it’s hard not to go into the _Why Me? Why can’t I win the lottery instead of this?_ You have to stay positive — but you’ve got to get to that point first.” Not long after falling in front of his family, Blaine saw a neurologist and received what turned out to be a misdiagnosis. It was Blaine’s general practitioner who performed an MRI and identified an error in his previous diagnosis. He wrote the words “Inclusion Body Myositis” on a Post-it, and told Blaine to look it up before referring Blaine to a doctor 90 miles south of where he lives in California. It was there that further tests — including magnetic imaging tests, nerve conduction tests and muscle biopsies — confirmed his IBM diagnosis in the summer of 2012. “I was ready to give up; the disease is so rare, I didn’t have anybody in town to talk to.” Blaine eventually found Facebook groups of people living with IBM, “which helped tremendously.” He also started participating in events like the 2015 National Myositis Awareness Day with the San Francisco Giants, in part a celebration of former pro-baseball player and longtime Giants commentator Mike Krukow, who also lives with IBM. There, Blaine met other members of the IBM community and worked at a booth hosted by [The Myositis Association](https://www.myositis.org/). “That’s what it’s all about: You’ve got to have people out there that you can reach out to and that know what you’re going through. The first couple years — and I know a lot of people feel this way — you’re alone. You don’t have anybody to reach out to.” When the following year’s awareness day rolled around, a local anchorman interviewed Blaine about his experiences with IBM, prompting a member of the IBM community to call the television station and connect with Blaine himself. The meeting was extremely fortuitous: The caller knew of a doctor who treats people with IBM much closer to where Blaine lives than any of the places he’d been traveling to for care. Now, Blaine is treated much closer to home, all thanks to sharing his story on the evening news. When Blaine encountered AllStripes through a friend’s Facebook group, he told himself, “Why wouldn’t I want to do this?” He’s now an [AllStripes Ambassador](/content/blog/allstripes-ambassador-program/index.html), and draws inspiration from famed musician Peter Frampton’s recent announcement that he’s living with IBM. “He’s out there helping with awareness and raising funds,” Blaine says. “Awareness is the only way we’re going to find a cure or treatment.” ## We know that every person's story is unique and deserves to be heard. Join our early breast cancer registry to be counted and share your story with research. ### Create a List List the names of all the doctors, hospitals, and other facilities your loved one visits regularly, along with those they have visited in the past. Try to go back as far as you can, striving for at least the last 5-10 years, but do your best. Even if you can’t remember them all, having a strong baseline can help you quickly identify gaps in records. #### Ensure You Have the Appropriate Legal Status It is important to make sure that you are fully empowered to make decisions on behalf of your loved one with Alzheimer’s. Your relationship status with the patient may not be enough to legally give you access to your loved one's medical information. It is a good idea to talk to an expert about securing special legal status, such as Power of Attorney (POA), a legal document that allows an individual to name someone as their decision maker should they no longer be able to make decisions on their own. #### Gather and Organize the Medical Records in One Place It’s important to have all of your loved one’s medical records together in one spot. This makes it much easier for you and your loved one’s physicians to accurately map the patient’s medical journey and more easily share information between doctors. Fortunately, tools exist to make record management and access simple. A free resource like PicnicHealth helps you collect and organize all of this information. PicnicHealth’s intuitive timeline allows you to pinpoint data across the medical history, eliminating your need for keeping heavy binders filled with paper records or keeping track of multiple software portal logins. #### Review the Medical Records to be an Informed Advocate The better you understand your loved one's medical history, the better you can advocate on their behalf. Access and understanding of this information will help you to ask informed questions with physicians. Through regular communication backed by the data in the medical records, you can help your loved one’s care team develop a more successful care plan.