Scott Isn’t Going to Let His IBM Diagnosis Define Him

By

Taylor Kane

May 31, 2021 • 3 min read

Blog post originally written by the AllStripes community team. AllStripes was acquired by PicnicHealth in 2023.

Four years ago, Scott was diagnosed with inclusion body myositis, or IBM. As Scott explains, IBM refers not to the technology company, but a very rare muscle disease.

“I look at it right now as something that’s slowing me down,” Scott says about his condition. “But it will not define me.”

Scott explains that his IBM journey started suddenly. Five years ago he went to his doctor for a routine physical and told his doctor it seemed like it was becoming more difficult for him to stand up from a chair, which he attributed to getting older. Scott’s doctor, however, wasn’t convinced and encouraged Scott to go through some testing to be sure. “They did about 20 tests and they couldn’t figure out why this weakness was happening,” Scott explains.

After meeting with a few specialists, Scott received a diagnosis. His first thought was that he would have to learn to live with this condition, even though he noticed his muscles getting weaker, and he began falling randomly.

“I was still able to pick myself up and dust off my pride,” he recalls. Months later, he fell and broke his ankle which caused him to be off his feet for a long time and lose his ability to walk. “Like magic, I thought I was just going to be able to get up and walk.”

Scott has been making progress thanks to regular physical therapy appointments. When he’s outside of his house, he continues to use a scooter to get around. There is an ADA compliant transportation service to help him get around Seattle, but if his journey isn’t too long, he usually opts to scooter. Just last month, however, Scott’s scooter was hit by a recycling truck. Thankfully Scott wasn’t physically hurt, but he explains that the mental side effects have been grueling. “Ninety-nine percent of the time I feel safe when I’m on the scooter, but the moment of impact was pretty traumatic,” Scott says.

The most difficult part of Scott’s journey thus far, however, is that IBM has no cure. It makes him hopeful that there are drugs in the development pipeline that may be able to halt the progression, but he has not yet met the eligibility criteria for any of the clinical trials. However, he describes himself as ready and eager to participate.

Scott has come to terms with the fact that he’s in this for the long haul, but remains hopeful that he will be able to walk again and do things he used to before his diagnosis, like traveling. He used to head to the Oregon coast once a month, but hasn’t been able to visit in three years. Still, he has done his best to maintain a sense of normalcy about his life. He has his own social media and PR business that he runs from home and makes time to go to baseball games with friends.

Despite all of these changes, Scott explains that he doesn’t want people to feel sorry for him because of his diagnosis: “I’ve had an amazing life. I really have. I’m thankful that if this had to happen, it happened to me later in life. I’ve been married, I’ve had a great career, I’ve traveled.” There is still so much Scott wants to do in life and accomplish, but he feels grateful for his 60+ IBM-free years.

Scott has been proactive in doing whatever he can to help advance research and treatments for himself and fellow IBM patients. He has joined the AllStripes platform to contribute de-identified data from his medical records to IBM research. He also chose AllStripes to “learn about clinical trials and news about IBM in one easy place to navigate and access.”

Since his diagnosis, Scott believes more people know about IBM than before. As an AllStripes Ambassador, he wants to share his story and do his part to raise awareness of this rare disease.

We know that every person's story is unique and deserves to be heard.

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.

Together, we can make a difference.

1. Build a support network.

When you’re juggling appointment times and insurance claims, putting a robust support system together might not strike you as the most urgent task. Investing the time to cultivate relationships with people can turn to in times of need will pay dividends. The next time you need a last-minute ride or just someone to listen, you won’t be on your own.

There are many condition-specific support groups and support groups for caregivers generally in person or online. In addition to the encouragement and empathy they provide, support groups can be a helpful source of tips, resources, and recommendations for navigating caregiving.

2. Stay organized.

The backbone of effective caregiving is organization. Keep medical information, appointment schedules, and medication lists in order. Use a planner or a digital service like PicnicHealth to stay on top of your responsibilities. This attention to detail can prevent future complications and reduce day-to-day stress.

3. Explore treatments and clinical trials.

We’ve seen incredible breakthroughs in treatment over the past couple of years, powered by patients and their caregivers participating in research. Stay in the loop about the latest in medical advancements and available resources that could benefit your loved one. Whether it’s a new therapy option or a community service that aids independence, being informed can make a world of difference in the quality of care you provide.

4. Make time for self-care.

It may seem self-centered to focus on self-care—but when you feel good, you can be a better caregiver. Whether it’s exercise, a mindfulness practice, a soak in the bath, or just time to rest when you need it, carve out those moments in the day when you can unwind, reset, and stay healthy mentally and physically. Think of it as building up your reserves of kindness, patience, and understanding—which can only benefit your loved one. No one can pour from an empty cup.

Having trouble managing your loved one's medical records?

Easily manage all of your loved one's medical records and contribute to ongoing Alzheimer's research with PicnicHealth.

LC-FAOD Odyssey: A Preliminary Analysis, presented at INFORM 2021

Data from real-world medical records:

(from 13 patients with LC-FAOD)

16 yrs old

Median age at enrollment

38% Female

15 providers / patient

7.5 years of data / patient

Data from patient-reported outcome (PRO) survey

(from 13 patients with LC-FAOD)