A PSP Wish List: Common Items People Impacted by PSP Might Need

Angela Jocson

Oct 09, 2020 • 3 min read

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

Progressive supranuclear palsy (PSP) is a neurodegenerative disorder that affects movement, vision, speech, swallowing, personality, and cognition. PSP worsens with time, and patients will eventually experience slow, stiff movements that make walking difficult or impossible. Gradually, patients can have trouble completing everyday activities. As the disease progresses, it is important for both the patient and caregiver to be equipped with tools and resources to make managing PSP and its symptoms a little bit easier.

Members within our PSP community shared their insights on items that can be helpful for daily activities, such as:

Patients often experience difficulty trying to feed themselves or physically being able to eat. A common symptom of PSP is dysphagia which could increase the risk of aspiration.

Curved spoons and grip utensils can help a patient hold onto their utensils and/or keep control when they are attempting to feed themselves.
Plates that can be elevated. Looking down at a plate can often be disorientating or difficult for a PSP patient to see. Plates that can be elevated can make it easier for a patient to see the plate.
Fluid / Food thickeners slow the flow of liquids to allow more time for airway closure.

Patients who experience a loss of balance, coordination, and mobility may need assistance to navigate their homes, doctor offices, and other venues safely.

A scooter
Chairs that can be lifted and set down. This can be very helpful for caregivers to help a patient move around or aid in orienting a patient in different positions.
Ankle Weights. This can make it easier for patients to stay upright and prevent falls.
Learning to stand in a three-point stance. A three-point stance is a common technique done by athletes to make it easier to catch yourself when you fall. The stance is typically done by standing feet shoulder-width apart and during a fall, you stagger one foot back and one hand down so you are able to catch yourself when falling forward.

Both patients and caregivers need to make sure that they have the support needed.

Speech therapy to help a patient communicate verbally as long as possible.
Community support, whether specifically for PSP or more general support groups including those aimed at caregivers. Any organization that offers moral support, including those hosted by a place of worship, may help a patient or caregiver get the support they need to face the challenges of PSP.

Are any of these items relevant to you? We would love to hear feedback and add to this resource to spread awareness and resources for the PSP community and beyond. If you are a patient, or family member of a patient, with PSP and are interested in contributing to this list, email us at support@allstripes.com.

Acknowledgments

Special thanks to PSP advocates Tim Brown and Patrick Dixon who have been amazing resources to help the AllStripes team better understand the experience of individuals living with PSP and caring for them.

Tim Brown, an AllStripes Ambassador, created The PSP Chronicles to document his strength and positive approach to life despite his PSP diagnosis. You can read more about Tim and his inspiring story, The PSP Chronicles, at www.timbrownauthor.com.

Patrick Dixon, the author of HeHo, dedicated the proceeds from his book to CurePSP, in honor of his mother who had PSP. In HeHo, Patrick describes his six-month hike from Mexico to Canada along the Continental Divide Trail. You can learn more about Patrick’s book at www.goodreads.com/book/show/54010278-heho.

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 as well as general caregiver support groups available both in-person and 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 informed about the latest 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.