[Congressional Record Volume 170, Number 89 (Wednesday, May 22, 2024)]
[House]
[Pages H3408-H3409]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




                           PSP AWARENESS WEEK

  The SPEAKER pro tempore (Ms. Malliotakis). The Chair recognizes the 
gentlewoman from Virginia (Ms. Wexton) for 5 minutes.
  Ms. WEXTON. Madam Speaker, as you may know, last year I was diagnosed 
with progressive supranuclear palsy, or PSP. It is basically 
Parkinson's on steroids, and I don't recommend it. It has affected my 
ability to speak, so I am using this text-to-speech app to make it 
easier for you and our colleagues to hear and understand me.
  I rise today in support of PSP Awareness Month. Over the past year, I 
have come to personally know how scary and devastating a condition PSP 
can be for those of us battling it and for those close to us who love 
us and want us to be well again.
  Despite its life-changing impact on more than 30,000 Americans, PSP 
remains relatively unknown to the general public. I am on a mission to 
change that. For those of you who are not familiar, PSP is a 
neurodegenerative condition that occurs when a buildup of a protein 
called tau damages brain cells, particularly in the parts of the brain 
that control speech, balance, coordination, and eye movement.
  With a rare disease like PSP, there is a lot of confusion about what 
it is and also what it is not.
  As you have noticed, it has affected my mobility. In less than a 
year, I have gone from striding confidently into and around this 
Chamber to relying on my walker to get around.
  PSP affects how loudly and clearly I can speak, which is not an ideal 
situation for a politician.

[[Page H3409]]

  In conversation, I have asked people to just ask me to repeat myself 
if they can't understand me or find a quieter space to talk so I can be 
heard. I am grateful that I have received such accommodating support 
from my colleagues and the staff here in the House that allows me to 
use this text to speech technology to be able to participate in 
committee hearings and to speak on the floor.
  PSP has no cure, and its cause is unknown. Some medications may help 
temporarily alleviate some symptoms, and an active lifestyle and 
physical therapies can help to slow its progress. Whatever your 
politics, when it comes to illness, progressive is not a good thing to 
be.
  While I will never train for or compete in another triathlon, by 
working out regularly and doing physical therapy I have improved my 
posture and balance to help prevent falls, a common source of serious 
injury for people with PSP. I have a rescue inhaler and certain 
medications I can take immediately before social engagements that can 
help improve my affect and my speech.
  While PSP has clearly taken a toll on my body, it has not affected 
who I am inside. My fellow women Members know I will still chime in on 
the group chat with a joke or barb, which do not need to be repeated on 
the House floor. I still keep my staff on their toes by riding down 
ramps around the Capitol complex on my walker as if they were mini 
roller coasters, and I am still just as dedicated to doing my job of 
serving my community in Congress as the very first day I got here.
  I share the personal details of my journey with PSP not because I 
want to be told how inspiring I am or for you to feel sorry for me. I 
speak about what I am going through because there are tens of thousands 
of other Americans out there who are fighting the same battles I am, 
and many of their loved ones, colleagues, and neighbors are having 
similar struggles with how to deal with the rapid and scary changes 
happening to the person that they know and love.
  They are likely spending months or even years going to doctor's 
appointment after doctor's appointment anxiously hoping for answers but 
are left with more questions because too few medical providers are 
familiar enough with PSP to know what telltale signs to look for and 
diagnose.
  In fact, one of the most common ways to diagnose and to differentiate 
PSP from Parkinson's is signs of brain atrophy seen on an MRI scan 
which appears in the shape of a hummingbird. The hummingbird sign has 
become a symbol for PSP, which is why I will be wearing a PSP Awareness 
hummingbird pin today.
  Raising awareness of PSP can mean a quicker, accurate diagnosis; the 
development of more effective treatments; and more time for those 
battling PSP to take on this disease with all the resources and support 
available.
  I am determined to use my platform to raise awareness of what PSP is 
and the urgent need to do more to fight against it. I am proud that 
over 80 of my colleagues from both sides of the aisle have joined me on 
a resolution to recognize May as PSP Awareness Month.
  I have also championed the National Plan to End Parkinson's Act that 
would help bring greater resources to discovering the causes, effective 
treatments, and a cure for Parkinson's and related parkinsonisms like 
my PSP. This bipartisan legislation passed the House last year with 
overwhelming bipartisan support, and I hope that the Senate will take 
it up very soon and send it to President Biden's desk.
  Madam Speaker, I have spent my career uplifting the stories of those 
in need. I am committed to continuing that work now on behalf of the 
PSP community and making the most of this platform that I have for as 
long as I am able.
  I urge my colleagues to join me this month to raise awareness of PSP 
and work together to fight this terrible disease.

                          ____________________