Progressive Supranuclear Palsy
Cure PSP psp.org is a national organization with information and resources for living with PSP, MSA and CBD.
IPMDC is working on finding ways to support local patients and families with PSP. We’ve listed the local programs we’re aware of below, so please check back for updates!
3rd Annual MK’s March – Raising funds for Cure PSP
IPMDC was delighted to participate in the the 3rd annual MK’s March, a 5k run or 1 mile fun walk to raise awareness for Progressive Supranuclear Palsy (PSP) on 10/13/2024 At Lake Fairfax Park. ALL proceeds go to CurePSP. For details, please visit mksmarch.org.
Progressive Supranuclear Palsy (PSP) is a rare neurodegenerative disorder that affects movement, balance, speech, vision, thinking, and memory. It is often misdiagnosed as Parkinson’s Disease or other movement disorders because of similar symptoms. PSP is an “atypical” parkinsonism or Parkinson-plus syndrome because there are shared symptoms of Parkinson’s Disease.
PSP primarily affects people over the age of 60 years, but it often worsens more quickly than Parkinson’s Disease and may not respond as well to Parkinson’s medications. It is not a genetic disease, does not spread from person to person, and is not clearly associated with environmental exposures.
PSP often causes difficulties with shuffling feet, impulsive walking, frequent falls (especially backwards), freezing of gait (feeling like their feet are glued to the floor), muscle stiffness (particularly the neck), slow movements, and occasionally tremor. A common symptom in PSP is difficulties using your eyes, especially with trying to looking up and down, which can result in double vision or difficulty reading. Speech may become slow or slurred, and swallowing can become difficult. Other common symptoms include changes in personality, apathy, irritability, and memory loss. Every person’s experience with PSP is different.
PSP is diagnosed through a combination of clinical history and neurologic examination. An MRI of the brain may useful to look for changes specific for PSP. This is a very difficult diagnosis to make and cannot usually be confirmed unless there is an autopsy.
There is currently no cure for PSP. Treatment focuses on managing symptoms and improving quality of life. Medications used to treat Parkinson’s Disease or Alzheimer’s Disease may offer relief for some motor symptoms. Physical therapy and safe exercise are important to maintain mobility and balance, and speech therapy may improve speech and swallowing difficulties.
National Resources:
CurePSP
CurePSP is the leading organization focused on awareness, research, and patient support for PSP. They provide educational materials, patient and caregiver support programs, and advocate for more research funding.
Website: www.curepsp.org
PSP Association
The PSP Association in the U.K. offers a wealth of resources including guides on living with PSP, advice on symptom management, and forums for connecting with others who have the disease.
Website: www.pspassociation.org.uk
Michael J. Fox Foundation
While primarily focused on Parkinson’s Disease, this foundation offers research, support, and information relevant to movement disorders like PSP.
Website: www.michaeljfox.org/news/atypical-parkinsonism#progressive-supranuclear-palsy
Author Mick Reedy, MD, is a Movement Disorders Specialist with
Inova Parkinson’s and Movement Disorders Center (IPMDC)