Bringing a Creative Approach to My Access Tools

By 
Maria McClellan
October 19, 2022
Blog post originally written by the AllStripes community team. AllStripes was acquired by PicnicHealth in 2023.

Pretty much my whole life I’ve done arts and crafts — origami, drawing, sewing, painting. My grandfather’s an artist on my mom’s side and my father has a Masters in fine arts, so he always encouraged me to do art. We always made Christmas cards — we made them. All our Halloween costumes too. As a kid, I’d say, I’m bored! And my dad would just hand me paints and a canvas and put a vase of flowers in front of me and say, paint this, draw this.

This energy is partially why I bring a creative approach to the access tools I use. Being born with a disability that has evolved or progressed in my lifetime, I’ve had to adapt every moment. 

Luckily, both my parents are pretty creative and willing to do more than just provide the basics. 

I started as a fairly average kid walking but progressed into using crutches to walk and then to using a wheelchair. Beside the usual medical equipment I had to purchase, we wanted to find a way for me to open and close the doors, curtains and drawers. I find these potential solutions and discoveries a fun adventure and something I like doing. 

I usually find inspiration for my projects from other people who have done some living adaptation themselves and take one small part that could work for me but change it to solve my issue. Sometimes I see products that are very expensive and make them a different version for myself.

A rope to close doors

One thing I used to use was a string on my door to close it, but once I got a service dog I upgraded it to a rope. I hadn’t realized how much easier it is for me to use. I not only use this on the front door, and other rooms in the house but also the fridge doors and drawers to operate them. Yes, my dog can open and close these items for me, but I love that I can do it too! And that it saves me some of my wrist pain and exhaustion.

Window curtains

Being that I’m only 3’2” tall, I couldn’t open and close the curtains. So I took a long PVC pipe (that can be found at any hardware plumbing supply store) and tied a string to it for the fabric to stay with the pipe. It is not the prettiest rod, but it is functional. One day I will replace the curtain and rod with something nicer. I remembered in hotels they have a stick and thought, Why can’t I do  this at home? So this was born!

The sink

This sink is the main sink in the kitchen. Both my 6’ brother and 3’ myself use it. We took the doors off below the sink for my wheelchair’s footrest to go under, and we put the faucet on the side front instead of the back. I love that I can easily reach it, but my parents love that they can now put a big bucket on the floor and fill it up. They say it doesn’t make much sense for the faucet to be in the back. We all love it.

As life goes on, I am continually having to find new ways to adapt to my living situation. The sink is my latest adaptation version — many years before, I had a whole separate kitchen setup that worked for me, but as an adult I found myself needing a larger sink. So this, like my other adaptations, was born. 

Luckily for me, my father does construction for a living and we are able to come up with new inventions that work for me. They are not going to work for everyone else who uses a wheelchair or a dwarf like me, but they do represent ways to take ideas from and put your spin on it. 

Life is a work in progress, especially when you have a disability that is changing your own abilities overtime again and again. I hope every invention I’ve made is permanent, but I also know they’re not. As I age I learn to enjoy these tools for the amount of time I find them helpful.

Maria McClellan is the founder and president of Morquio Community and has Morquio syndrome.

About 

Maria McClellan

About PicnicHealth

Empower people to own their medical records. Advance medicine. We’re a passionate group of doctors, patients, data nerds, engineers, and builders, who believe in making something real that changes lives today and in the future.

Sign Up

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.

Learn More

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

Learn More

Together, we can make a difference.

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

Learn More
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.

Learn More

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)

We hope you found this session informative! Sign up for PicnicHealth’s Alzheimer’s research program below.

Join Now
Tip: Download or print the poster at the end of this article to review before your next appointment!
However, it's important to consult with a healthcare provider or registered dietitian to determine the appropriate amount of protein for your individual needs. In general, a diet with moderate protein intake (about 0.8 grams per kilogram of body weight per day) is recommended for people with kidney diseases.

Learn more about contributing to IgAN research with PicnicHealth. 

Learn More

Save The Top-10 List

Download this list to save onto your phone or print it out for your fridge!

Download PDF

Keep an Eye on These Test Results

Download this poster to save onto your phone or print it out for your fridge!

Download PDF

Resource Flyer

Explore the essential takeaways from Victoria's Webinar, along with some resources that she shared.

Download PDF

Pre-Appointment Worksheet

Prepare for your loved one's next appointment

Download PDF