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 discordinating 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 upward 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.
