Welcome to PSP Blog and Registry!
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Progressive supranuclear palsy is a rare disorder where cells in some areas of the brain gradually sicken and die off, causing the individual great difficulty in movement and, later, in thinking. Its cause is unknown, but research is active. I’m a medical school neurologist who has been doing research in PSP for nearly 30 years. This blog is both for professionals and for patients with PSP and their families. An important feature is the email address registry, which will allow me to bring special news to your attention quickly, including opportunities to participate in research.
What Is PSP?
Progressive supranuclear palsy is a “neurodegenerative disease,” meaning that it starts gradually and worsens slowly and its cause is a poorly-understood loss of brain cells. PSP is similar to Parkinson’s disease in its general slowness, poor balance and slurred speech. The two most common neurodegenerative diseases are Alzheimer’s disease and Parkinson’s disease, each of which has things in common with PSP and some important differences. For more info on PSP, click here.
Unlike Parkinson’s, PSP is rare, with 5-6 cases per 100,000 population, of whom only 1 or 2 carry the correct diagnosis at the time. This compares to 150-200 per 100,000 for Parkinson’s. Relative to Parkinson’s, PSP’s response to medication is poor to fair, it rarely has tremor, it commonly includes important loss of thinking ability and it almost always causes difficulty moving the eyes. (The “palsy” part refers to this last feature.) PSP starts at age 63, on average, compared to 59 for Parkinson’s. The most common first symptom is unexplained falls or personality changes.
OK, So What’s the Good News?
The good news is that there’s lots of research in progress on PSP. Some more good news is that while PSP outwardly looks very different from Alzheimer’s disease, the abnormality in the brain cells in PSP is very similar to one of the abnormalities in Alzheimer’s. Many scientists believe that the route to a cure or prevention for Alzheimer’s goes through PSP. So PSP commands far more attention from researchers and the biotech and pharmaceutical industries than its rarity would suggest.
This Blog’s Relationship to CurePSP
Even more good news is that you can find plenty of reliable information on PSP at www.psp.org, the website of “CurePSP” (the Foundation for PSP | CBD and Related Brain Diseases). You might like to start directly on their Education page.
CurePSP also offers educational videos, Webinars, pamphlets, meetings and symposia and a Web forum for patients and caregivers.
Full disclosure: I have volunteered with CurePSP for many years and serve as its Director of Research and Clinical Affairs. I wrote many of the things on its Website. Part of my reason for starting PSP Blog is to help CurePSP do its job.
Who Am I?
I’m a neurology professor at Rutgers Robert Wood Johnson Medical School in New Brunswick, New Jersey. I’ve been doing research in PSP since the 1980s and I have a large referral practice of people with PSP and related movement disorders.
What This Blog Hopes to Accomplish
PSP Blog will keep you updated on what I see as important and interesting things related to PSP. Some posts will discuss research findings or new treatments. Others will announce research projects starting to recruit participants. Such posts will include links for people with PSP or their caregivers to learn more and possibly to volunteer. There may be news about PSP clinical centers, opinions of medical products, and interesting scientific ideas in non-technical language.
Some posts on PSP Blog will be in non-technical language and others will be written for professionals. The terms “technical” or “non-technical” will appear in the keywords for each post. But you don’t have to upload a diploma in neuroscience to gain access to the technical-language stuff. Have a go at it, but keep in mind that some technical terms may look like ordinary English words but mean something very different.
The blog’s Comments function is not for medical advice. If you’d like to participate in a forum with other patients or caregivers, CurePSP has a good one. Click here.
I’ve always believed that I learn something new from each of my patients, and the power of the Web can magnify that. I also hope that the exchange of ideas will teach things to caregivers, researchers, medical inventors and pharmaceutical executives as well as to people with PSP themselves.
The Optional Email Registry
Finally, PSP Blog allows you to register for an email list: a registry. That would allow me to send you brief notices about new blog posts on PSP Blog and news flashes about clinical trials and other appeals for volunteers. I am the only person who can send emails using the list. I am sworn by a very serious committee at Rutgers University responsible for such things (ominously called the “Institutional Review Board”) never to reveal your email or any other identifying information to anyone. Nor can I allow anyone else access to the list. In fact, the software doesn’t allow me to do so.
The email Registry offers two options at the time you register. One would accept all of my emails, which would be at most once a week. The other would accept only emails that offer opportunities to volunteer in clinical trials.
Another note about privacy: This blog’s email Registry is maintained not by the company hosting the blog itself (WordPress), but my own medical school. The registration process does not ask for your name or any information other than an email address, and you don’t have to register at all to use the Blog. That address would be protected with the same rules of confidentiality required by Federal law for our medical school’s own patients’ medical records. No blog hosting company offers that level of confidentiality, which is why I’m using my med school’s facilities for the email list. Keep in mind that if you somehow provide your email address or other information to WordPress, it may not be kept confidential.
Comments feature to provide feedback on my posts, to comment on on others’ comments, to run your own ideas up the flagpole, and to suggest how I can improve the blog.