# ‘Just Keep Grinding’: How Jareb Deals With Wilson Disease

By  
Catherine Cooke

Nov 23, 2020 • 2 min read

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

Have you ever heard of a low-copper diet? No, it isn’t one of the latest weight-loss fads. Rather, it is a lifesaving shift in eating for those living with a rare copper metabolism disorder called Wilson disease.

Things like shellfish, nuts and chocolate are off-limits, but Jareb, who was diagnosed with the disease when he was 12 years old, is grateful for what is still okay to eat: candy!

As a preteen, Jareb was always tired and frequently out of breath. After visiting many doctors, he found out he had an enlarged liver, the first sign that there was something larger going on than just lack of sleep.

He underwent a liver biopsy that revealed he had the incredibly rare disease.

“My life was limited,” Jareb remembers. “The medication I took meant I couldn’t be in the sun as long as others.” And even though switching to a low-copper diet helped, it did not take away his fatigue.

Although he knew he would have to live a more difficult life, Jareb mostly felt “relieved” when he received his diagnosis. “I understood why I was feeling like this. Now, I have a reason. It confirmed that I had a disease.”

When he grew old enough, Jareb began looking for a job, but living in a “desert town without many opportunities” made it difficult. “I applied and applied and never got anything. I always thought they may have talked to people and thought ‘he has a disease, so he may be slow.’”

But the discrimination he faced would not hold Jareb back. In fact, it only fueled him to become entrepreneurial.

“I decided I must be self-employed. I was able to drive, so for six years I drove an elderly man and his son to the grocery store and on chores.”

When the man passed away, the son, who recognized Jareb’s hard work, made sure he found another opportunity. The son connected Jareb with folks who need help with yard work.

Now, Jareb has great clients who understand his limitations and respect the adaptations he makes to be successful in his job: “I wear a big ol' hat, and I know my limits. I can only do three to four hours a day and then will come back tomorrow to finish the work.”

Jareb has connected with others living with Wilson disease through social media, encouraging them to “Just keep grinding. Keep doing what you want to do. Look forward. Don’t look to the past. Know your limitations.”

He’s also joined the Wilson disease program on [AllStripes](/content/program/wilson/index.html), a rare disease research platform with a mission to unlock new treatments for people with rare disease. Jareb is motivated to “help make Wilson disease medication cheaper and more accessible.”

We admire Jareb for his strength and resilience. One of the prime examples of that? Instead of being devastated he had to give up his favorite mint chocolate chip ice cream, he simply switched to vanilla.

## 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.

### Learn more about PicnicHealth’s commitment to the Alzheimer’s community and the Alzheimer’s Association

## 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.