Progressive Supranuclear Palsy (PSP): Understanding Symptoms and Stages

Progressive Supranuclear Palsy (PSP) is a rare and complex condition that affects movement, vision, and behavior. In this post, I share a clear overview of the key symptoms and stages of PSP – alongside my personal perspective – to help patients, caregivers, and readers better understand what this journey looks like.

Why I’m Writing This

I have written so many blogs but have never actually articulated in one place the symptoms and the stages of the disease. This is because each of us has a slightly different journey and there are differing strands of PSP – PSP-P, PSP-RS – and it is all highly confusing.

Yet, it is important to have a sense of the key symptoms and stages to understand where you are, to understand where your partner is, and to make it easier for people to grasp what you are dealing with.

I am following much of this path but in a bit of a random way – some of the symptoms are stage 1, some stage 3, and some very minor, especially my cognition, which is thankfully doing well. I pray it continues and that I outstrip the prognosis by leaps and bounds. This is important medical information, but it is critical to have faith and hope and retain a positive frame of mind,

A Personal Perspective

It is in that context that I feel a slight apprehension writing so much about PSP because I know I am an outlier. If you try to work out how many people have had PSP for 5.5 years, remain cognitively strong and alive, are able to blog in English, and haven’t succumbed to the cognition symptoms, it is a tiny number – possibly in the hundreds or low thousands across the world.

I don’t want my story to be considered the default case. There are clearly many who simply have it so much worse than me.

That is why I felt it is important to try to set out the picture of the symptoms and stages. There are many sources, but the one I actually found the most straightforward was that of the famous Penn Medical, whose information I have used here.

Please comment if you disagree or have other sources. On my blog are many other resources which give more detailed information.

You will see from the stages and the approximated time (different with PSP-P versus PSP-RS) that it is truly not pleasant and that the strive for positivity for carers and patients is hard—but one I will work incredibly hard at.

https://www.pennmedicine.org/conditions/progressive-supranuclear-palsy

Symptoms

Penn Medicine groups PSP symptoms into two main categories:

Motor symptoms of PSP may include:

• Stiff or slow movements in the limbs, trunk (axial rigidity), or neck
• Problems with walking, balance, clumsiness, and frequent falls
• Tendency to lean or lunge forward to avoid falling backward
• Problems with moving the eyes, looking down, keeping eyes open, and sensitivity to bright light
• Changes in facial expressions/deeply lined face
• Tremors or muscle spasms (especially in the jaw or face)
• Difficulty speaking/swallowing

Non-motor symptoms of PSP may include:

• Behavioral changes, including impulsivity or poor judgment
• Dizziness
• Dementia (mild-to-moderate memory loss, difficulty with reasoning, making decisions, and solving problems)
• Personality or mood changes (depression, anxiety, irritability, laughing or crying without reason)
• Sensitivity to bright light
• Sleep disturbances (insomnia, rapid eye movement sleep behavior disorder)

Stages of Progressive Supranuclear Palsy

Doctors track the progression of PSP in four stages:

1. Early stage usually occurs within the first year after disease onset. These symptoms may look like normal changes associated with aging. At this stage, people may have trouble with balance and walking. Visual problems may impact the ability to read. Voice changes start to occur with reduced speaking volume. Some people experience mood and behavior changes, including apathy, anxiety, and decreased interaction with other people.
2. Mid-stage PSP usually occurs between the second and third years with the condition. People with PSP often need walking aids and experience more vision problems. Speaking and swallowing may become more difficult.
3. Advanced stage PSP usually occurs between years three through six. People with PSP have significant problems with walking, muscle stiffness, and pain, often requiring a wheelchair for mobility. They depend on others for most or all care aspects. Vision, speech, and swallowing are significantly impaired. The risks for inhaling food (aspiration) and developing pneumonia are very high.
4. End-of-life PSP typically spans six to eight weeks. Reduced consciousness and marked deterioration in the ability to eat or drink resulting in rapid weight loss occur during this stage. A fall, major fracture, or infection may also occur during this period.