Progressive Supranuclear Palsy (Symptoms, Stages, Treatment, and Life Expectancy)

Question:

Please share your experience with progressive supranuclear palsy or PSP. Submit Your Comment

Comment from: Uraljjb, 65-74 Male (Patient) Published: April 20

My progressive supranuclear palsy started in 2015 with double vision. I was dizzy in 2017 and diagnosis was in late 2017. Progression has been huge this year. Most symptoms started in early 2018.

Comment from: opdep6, 55-64 Female (Caregiver) Published: November 13

My wife was diagnosed with progressive supranuclear palsy (PSP) approximately 5 years ago. At first there were subtle changes. As the disease progressed she had to use a walker. In the last stages she was unable to walk and could barely communicate. We knew though what she needed. Medications were a challenge as her swallowing suffered. It became necessary for us to feed her which she hated. In the last days she became unresponsive and listless. When she was discharged from the hospital we had hospice. She passed away from this disease on September 13th of this year.

Comment from: Machen2014, 65-74 Female (Caregiver) Published: July 27

I am the main caregiver for my spouse. It has become increasingly difficult. She was officially diagnosed with progressive supranuclear palsy (PSP) in 2013 after seeing many doctors from many disciplines. A neurologist, whose specialty was movement disorders, finally figured it out. In the beginning my spouse was going to a medical day care since being wheelchair bound since 2013. However, eventually they were unable to care for her any longer because the medical issues became too intensive. In February of 2017 she had a G-tube placed surgically due to dysphasia. That also was a problem because she had had gastric bypass in 2010 so her stomach is not in the right place. So, due to vision problems, she 'watches' TV like a radio. She listens to music CDs. We have tried Botox in her neck to try and relax the muscles, but that no longer works. She is unable to stand alone and needs constant care. I am a teacher so I am with her all but 8 hours a day. I have found a wonderful CAN (certified nurse assistant) who watches her while I am at work. She is a godsend for me. I have grown children who also try to help out, but, they have their own families to tend to. It is also difficult financially as we are not eligible for any aid because she has a pension. We pay the CNA, her diapers and other supplies out of pocket. This gets expensive, but we marry for better or worse not convenience. Sometimes I feel very alone with this disease. No one seems to know enough about it and how it affects everyone in the family. I have looked into a support group but geographically it is too far away. I am still researching this avenue. I am aware of the ultimate outcome and find myself procrastinating about wills and legal paperwork and other things that need to be addressed.

Patient Comments & Reviews

  • Supranuclear Palsy - Symptoms

    What signs and symptoms do you experience with supranuclear palsy?

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  • Supranuclear Palsy - Symptom Treatment

    What medications or medical treatments have helped with PSP symptoms, and improved your quality of life?

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  • Progressive Supranuclear Palsy - Tips to Manage Symptoms

    Please share what lifestyle, safety, diet, and exercise tips that have been helpful in managing symptoms of the disease and maintaining your quality of life.

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REFERENCE:

Nelson, S. "Hummingbird sign in PSP." June 24, 2013.
<https://www.aan.com/residents-and-fellows/e-pearl-of-the-week/June-24-2013/>

Kato, N. et al. "Study of the rostral midbrain atrophy in progressive supranuclear palsy." J Neurol Sci. 2003;210:57–60.
<http://www.jneurosci.org/content/by/year>

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