Manuel Wants to Make Sure Newcomers to the IBM Community Get Support From the Start

By
Taylor Kane
Mar 11, 2021 • 3 min read

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

Six years before his diagnosis, Manuel noticed he had to slow down and drink more water while eating but didn’t think much of that warning sign at the time.

Soon after, Manuel realized he was having trouble standing from chairs and noticed his bicep muscles getting weaker. Rather than addressing the issue, his doctor told him to exercise more. Manuel eventually went to a neurologist who later diagnosed him with IBM. He considers himself lucky that he received his diagnosis only one year after first seeing a neurologist, explaining that most IBM patients wait “five or six years.”

Currently, IBM has no treatment. For the first year after his diagnosis, Manuel tried to keep living his life as normal and not be too concerned about the future. But this attitude didn’t last for long. Manuel began to search for other IBM patients and attended a conference where he met people with his condition for the first time. He also joined a patient-founded Facebook group so he could stay connected with this community year-round.

“It became a very important thing for me, because I could actually see and exchange with other patients,” Manuel says.

Manuel has even taken it upon himself to help new patients once they join the Facebook group. He wants to ensure they feel supported and are getting the right information from the beginning. Having a marketing background, Manuel thinks a lot about the best ways to communicate information to the members of his group and keep them engaged.

Since connecting with members of his rare disease community, Manuel has become dedicated to bringing patient-centered support into research, calling it “his newfound mission.” He wants to help bring the patient voice into clinical trials, urging research investigators to listen to patients and understand what their needs are: “Don’t second guess patients,” he advises.

Manuel thinks it’s extremely important for every rare disease community to be involved in the research arena. One of the reasons he joined the AllStripes IBM research program is to contribute his data to researchers working on his disease.

“The moment to act is now...we are really doubling our efforts in our support groups to bring education about AllStripes and look at the opportunities we have,” he explains.

Unlike most rare diseases, IBM is an autoimmune disease and is not thought to have a genetic origin.

“In genetic diseases, at least you have the gene. Autoimmune diseases are more difficult because we really don’t understand what causes them,” Manuel says. “We have to be even smarter and find more data points.”

While Manuel’s advocacy efforts have escalated since his diagnosis with IBM, so too have his symptoms. He describes the disease as chronic and slowly progressive, and says it usually takes 10-20 years from the onset of symptoms for IBM patients to become paraplegic. However, he explains that every patient’s progression is different. Right now, Manuel is six years into his journey and usually uses a cane to get around.

Manuel sees the people around him as his greatest strength, and believes that finding the IBM community has given him purpose. He views himself as a positive person and chooses to see the silver linings in his life. At the end of the day, he wishes people understood that even though IBM has caused his body to change, his spirit remains the same.

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.

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.