Do I Have Parkinson’s or Progressive Supranuclear Palsy (PSP)?
There are medical conditions that exist that are called Parkinsonian-like conditions or Parkinsonian-like syndromes. These conditions mimic Parkinson’s disease (PD), but they are considered their own separate entities. These conditions often present with similar PD symptoms, but may be treated in different ways or have different outcomes. An example of a PD-like condition that can be hard to distinguish from PD is progressive supranuclear palsy (PSP).
What is progressive supranuclear palsy (PSP)?
PSP is a progressive neurological condition that causes weakness (palsy). Specifically, PSP impacts areas of the brain near nuclei. Nuclei are brain structures that contain collections of nerve cells. These nerve nuclei are often found in the brainstem and can impact vision, swallowing, speech, and more. PSP commonly affects individuals over 60, and has a relatively quick rate of progression, with many experiencing significant, life-altering symptoms within three to five years. PSP is considered a rare condition, with fewer individuals affected by PSP than with PD.
In PSP, proteins called Tau proteins build up in cells and neurons. When Tau protein builds up in a neuron, it can impact that neuron’s ability to talk to other neurons, and may even cause the neuron to die. This is what leads to the symptoms of PSP and creates progressive weakness. One area that can get damaged near these nuclei is the substantia nigra, which is also where PD damage occurs. This is a reason both conditions can present with similar symptoms, however, PD treatments will not work for PSP since it is a different condition with a different underlying issue going on.
There are no curative treatments that exist for PSP, and as mentioned, PD treatments usually don’t have an impact on PSP symptoms.1-3
Symptoms of PSP
Symptoms of PSP can be very similar to PD, with a few exceptions. Some of the most distinguishing symptoms of PSP are eye-related symptoms. These include, but are not limited to:
- Relatively sudden changes in vision
- Blurriness or double vision
- An inability to focus on objects in front of you
- Difficulty moving your eyes up and down
- Problems following an object with only your eyes (needing to move your whole head to follow something)
- Sensitivity to light
- Needing to tilt your head forward or backward to see certain things
- Trouble clearly seeing things below you like a plate or a book
- Problems controlling your eyelids (eyelids that seem to be opened too wide, involuntary closing of the eyes, difficulty re-opening the eyes after closing them, or changes in blinking)
- Burning or dry eyes
- Difficulty maintaining eye contact when talking with someone
Another hallmark symptom of PSP that may separate it from PD is the relatively sudden onset of cognitive, behavioral, or emotional changes. PD can have all of these issues too, however, PSP tends to have these issues present relatively early on, and may lead to inappropriate outbursts. For example, someone with PSP may randomly and inappropriately burst out into laughter or tears for no apparent reason. These outbursts may impact an individual’s ability to function properly within professional or social settings. Other cognitive and mental issues, such as difficulty finding the right words, problems making decisions, depression, apathy (lack of concern or care for things), judgement changes, problem solving issues, forgetfulness, or irritability may all arise relatively early on in PSP, but also may eventually arise in PD.
Other symptoms of PSP, like difficulty swallowing, speech issues, rigidity, balance issues, walking issues (gait disturbances), trouble with movement, mask-like facial expression, and monotone speech directly overlap with PD. However, one interesting difference that may be present between those with PSP and those with PD is within their posture. Individuals with PSP may stand up very straight and tip their head backwards when moving, causing them to be off-balance or fall. This is called axial rigidity. On the other hand, those with PD may be more likely to lean over or bend forward when walking. Additionally, individuals with PD will often have a tremor, whereas someone with PSP is less likely to experience this.1-3
How do I know if I have PSP?
It can be extremely challenging to determine if someone has PSP (or PD). Asking yourself the following questions may help determine if you may be showing signs of PSP. Although many of these may be normal on their own, responding yes to several or more of these questions may indicate that it’s time to see a healthcare provider for further investigation.
- Have I recently noticed significant changes in my vision?
- Is it hard for me to focus my vision on things in front of me?
- Am I having trouble following an object as it moves in front of me?
- Do I feel like things above or below me are often hard to see?
- Do I need to significantly move or tip my head to walk upstairs or eat from a plate below me?
- Is it hard for me to maintain eye contact when someone is talking to me?
- Do bright lights bother me in a way they didn’t used to?
- Am I falling a lot? When I fall, am I falling backwards?
- Have I noticed sudden and significant changes in my ability to swallow or speak?
- Do I feel more rigid, slow, unstable on my feet, or like I can’t move my face as easily as I used to?
- Do my eyelids seemed to be too widely opened or close on their own frequently?
- Has anyone told me my posture or the way I walk has changed recently?
- Am I having unexplained or inappropriate emotional outbursts, such as crying or laughing spells?
- Have I noticed a recent change in my mood (such as being depressed or uninterested in things I used to love) or cognitive functioning (ability to find the right words, make decisions, or solve problems)?
- Have I been diagnosed with PD but have experienced no changes in my symptoms while taking PD-related treatments?
When and how should I talk to my healthcare provider?
If you currently have no diagnosis and answered yes to several of the above questions or have been diagnosed with PD but think you may be showing signs of PSP instead, further work-up from a healthcare provider may be necessary. Bringing a list of symptoms you have been experiencing, especially ones that may be PSP-specific, may be helpful to guide your appointment with your provider. Asking specifically about PSP and if your symptoms may be a result of this condition may help further guide your appointment and lead to the conversation and answers you’re looking for.
For those with a current PD diagnosis who are not experiencing any changes as a result of treatment, it may be helpful to ask your provider the following:
- Should I have noticed any improvements in my symptoms as a result of treatment by now?
- Is it possible I may have a condition that mimics PD and isn’t really PD?
- Are there any tests we can do or treatments to try that might help determine if this is something else besides PD?
- Conditions that Mimic Parkinson’s. Parkinson’s Foundation. https://www.parkinson.org/Understanding-Parkinsons/Diagnosis/Conditions-that-Mimic-Parkinsons?gclid=EAIaIQobChMI5beC0syC5QIViZ6fCh2cPAv9EAAYASAAEgL6WfD_BwE. Accessed October 15, 2019.
- Progressive Supranuclear Palsy Fact Sheet. National Institutes of Health: National Institute of Neurological Disorders and Stroke. https://www.ninds.nih.gov/disorders/patient-caregiver-education/fact-sheets/progressive-supranuclear-palsy-fact-sheet. Published August 13, 2019. Accessed October 15, 2019.
- Progressive Supranuclear Palsy. Mayo Clinic. https://www.mayoclinic.org/diseases-conditions/progressive-supranuclear-palsy/symptoms-causes/syc-20355659. Accessed October 15, 2019.