‘There Really Isn’t Anyone Else Who Understands’

By
Catherine Cooke
Jun 04, 2020 • 2 min read

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

"Be ready for some big change, buddy,” is what Gary told himself on the day he received a diagnosis for his rare disease.

It was 2016 when Gary learned the news that he had a disease with a life expectancy of only 10 years from onset. Having already suffered symptoms for four years, it meant he likely only had six more years to live.

It began with problems swallowing. He would aspirate, or inhale food into his airways, a lot and couldn’t understand why. When he also started falling, he sought answers for what was going on. But his doctor didn’t have any. It would take four more years before a neurologist would finally give him an answer: He had progressive supranuclear palsy (PSP).

PSP causes a deterioration of brain cells in areas that control movement, coordination and thinking. It is characterized by a loss of balance, falling, and impairment of vision, speech, swallowing and memory.

In Gary’s words, “You can’t read anymore. You can’t see very well. You lose all track of everything. Your balance is lost. You fall all the time.”

Prior to his diagnosis, Gary was a fitness instructor. He was able to join a fitness class for people with Parkinson’s disease, which shares many of the same symptoms as PSP. But after a while, he was unable to continue participating as his condition deteriorated.

Today, he needs a caregiver to help him with most of his daily tasks.

One bright spot is that his daughter obtained a work-from-home job and moved in to take care of her father.

“She kind of knows [what I’m going through], but there really isn’t anyone else who understands me,” he said, calling out the isolation that many rare disease patients can feel. He hasn’t found people to connect with who share the disease and there is no current treatment or cure.

But Gary did find a way to take back some power and take action. He joined AllStripes to connect with others in the PSP community and be on the forefront of new research. By contributing his de-identified medical records to AllStripes, he can participate in multiple research efforts for PSP from home. He is also notified of developments in the research program and will receive research insights from the PSP community.

“I hope they find something real soon. It would open up all kinds of doors,” he said. “At night when I lie in bed with my eyes closed, I feel normal, but when I get up, I can’t move. I want to get my driver’s license back. I would do all kinds of things.”

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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.