‘I Have More Hope Now Than I Ever Did Before’

By

Taylor Kane

Feb 05, 2021 • 3 min read

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

Amy publicly told her story about VCP disease for the first time in May 2020. She was one of five patient speakers at the Cure VCP Disease Patient Listening Session led by the FDA’s Office of Patient Affairs.

At that point, she had only told some family and close friends about her diagnosis. Amy found it liberating to share her story. “I don’t have to carry this around... I can talk about it,” she recalls.

VCP disease is a group of related conditions caused by a mutation on the VCP gene. The disease primarily presents later in life and affects organs such as the muscles, bones and brain.

Amy had a long history of muscle-wasting disease in her family, with her father, grandfather, aunt, uncle, and sister all suffering from similar symptoms. Unfortunately, many of these family members passed away before they received a proper diagnosis of VCP disease. Amy received her own genetic testing results just a week after her sister’s funeral.

Amy was flooded with grief over the loss of her family members as well as stress about her future. Her diagnosis, however, wasn’t a complete surprise. Two years prior, Amy had noticed weakness in her shoulder when she was lifting heavy weights. “I was getting weaker, not stronger,” she says.

Still, Amy didn’t want to believe that she would suffer the same fate as her family members. After all, the muscle enzyme test she underwent in 2014 had come back normal. Since her dad had been misdiagnosed a number of times -- with ALS, muscular dystrophy and spinal muscular atrophy --- the inheritance pattern of his muscle-wasting disease was unclear.

Amy’s symptoms have progressed from just shoulder weakness to both shoulder and leg weakness. She explains that when she first received her diagnosis, she felt very lonely and suffered from depression and anxiety.

“I’m mourning my life that I thought was going to be,” she reveals.

Right now, her symptoms are manageable but she understands they will progress over time.

Since VCP disease is inherited in an autosomal dominant pattern, Amy knows that her children may also be impacted by the condition later in life. She says she maintains an open line of communication with her children and is more than willing to answer any questions they have. Amy wholeheartedly believes that when her children are older, a treatment will be available for VCP disease.

Amy decided to join AllStripes because of the ease of using the platform to organize her medical records and stay up-to-date on VCP disease research and clinical trials.

“I was really excited that the opportunity came to join AllStripes so it could streamline and simplify that process,” she says. She believes AllStripes helps eliminate the anxiety of doing her own independent research on treatments and clinical trials.

Since her diagnosis, Amy has taken more time to focus on her mental health and self-care. She believes that the mental aspect of the disease is almost as difficult as the physical symptoms. Nonetheless, she has worked to find light in the darkness: “I have more hope now than I ever did before,” she declares. If she could go back, she says she would tell herself to be patient: “There is an army of ridiculously smart people behind you and they are coming to the rescue.”

Being involved with Cure VCP Disease has helped relieve much of Amy’s anxiety. She helps run their virtual happy hour events to help VCP patients connect. “I always tell them they’re my friends I never wanted,” Amy jokes. After the happy hour events, Amy posts a summary on the VCP disease Facebook page to engage patients who may not yet be comfortable joining the calls. She encourages her fellow VCP patients to talk to someone they trust when they are feeling down. She believes that everyone needs and deserves a shoulder to lean on.

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.

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.