The rare progressive condition often misdiagnosed as Parkinson’s disease – key differences

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An article published by Parkinson’s UK back in 2017 described research published in the scientific journal Neurology, which explained what is meant by the term “parkinsonisms”. This umbrella term describes conditions that share some of the symptoms of Parkinson’s such as a tremor, rigidity and slowness of movement. One of these conditions is progressive supranuclear palsy (PSP), which is often initially misdiagnosed as Parkinson’s due to the similarity of symptoms. In addition, the symptoms that do allow doctors to make a specific diagnosis appear slowly, over a longer period of time, and as the condition develops.

PSP is a rare disorder that causes problems with movement, walking and balance and eye movement.

The National Institute of Neurological Disorders and Stroke explains that the condition comes as a result of damage to nerve cells in the brain that controls both thinking and body movement.

One of the key differences between PSP and Parkinson’s is the progression of the two conditions. PSP affects individuals far more quickly than Parkinson’s.

Other differences between the two neurological disorders include the following:

  • People with PSP usually stand exceptionally straight or occasionally tilt their heads backward (and tend to fall backward). This is known as “axial rigidity.” Those with Parkinson’s disease usually bend forward.
  • Problems with speech and swallowing are much more common and severe in PSP than in Parkinson’s disease and tend to show up earlier in the disease.
  • Eye movements are abnormal in PSP but close to normal in Parkinson’s disease.
  • Tremor is rare in PSP but very common in individuals with Parkinson’s disease.

In addition, the way the two diseases respond to drug treatment also differs. Those with Parkinson’s often take the drug levodopa which is proven to cause significant benefits. The same drug however only has a minimal response to the same drug.

The progressive supranuclear palsy association (PSPA) is a charity based in the UK that helps individuals with the rare condition. It stresses that for every individual the condition is different and every case is unique.

Yet some of the common symptoms of the condition include:

  • Movement and mobility issues
  • Behavioural changes
  • Lack of bowel control
  • Trouble eating and swallowing
  • Build-up of saliva
  • Slurred speech
  • Overwhelming fatigue
  • Pain.

Another key symptom and sign is changes to vision, if you or someone you know experiences any of the following, it is always best to get checked by a GP or optician, even if they do not have PSP:

  • Double vision
  • Tunnel vision, where the field of vision is reduced
  • Blurred or misty vision
  • Slow, jerky eye movements that can make it hard to read from one line to the next, or look from one point to another.
  • Difficulty looking down. This can cause problems at mealtimes and increase the risk of falls
  • The inability to deal with bright lights
  • Involuntary eyelid closure, difficulty opening the eyes.

One person who has had first-hand experience with PSP is Bradley Payne, who’s late father lived with the condition and struggled to get an official diagnosis from medical professionals.

Sharing his experience with PSPA Bradley explained: “We knew something was wrong with my dad’s health when he began to have balance problems during the summer of 2016.

“He was falling a lot, backwards, and quickly progressed to using walking aids from 2017 onwards, in order to still get about. He starting using a wheelchair in 2018, after a bad fall resulted in multiple bone breaks and a stay in hospital.

“As his symptoms progressed, dad lost the strength in his arms and well as the ability to eat standard meals. Mum was his main carer and he largely stayed at home.

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“Unfortunately, due to the rareness of PSP, the healthcare professionals really struggled to diagnose what was wrong. Eventually, following multiple investigations, they discharged dad, saying there wasn’t anymore they could do to help.”

It was not until Bradley’s dad and his mum moved to Devon that doctors started to suspect he had PSP, but his diagnosis was not fully confirmed until he had sadly passed away.

When diagnosing PRP, there is no singular test. The diagnosis is instead based on the pattern of your symptoms.

As Bradley touched upon, the diagnosis must be made or confirmed by a consultant with expertise in PSP. This will usually be a neurologist (a specialist in conditions affecting the brain and nerves).

In addition there is currently no cure for the condition, but treatment aims to relieve symptoms and ensure that individuals with PSP have the best possible quality of life.

The NHS explains that treatment will be tailored to meet the needs of each individual. This can involve:

Medication to improve balance, stiffness and other symptoms

  • Physiotherapy to help with movement and balance difficulties
  • Speech and language therapy to help with speech or swallowing problems
  • Occupational therapy to help improve the skills needed for daily activities
  • Botox (botulinum toxin injections) or special glasses to help with eye problems
  • Feeding tubes to help manage dysphagia and avoid malnutrition or dehydration.

Unfortunately, as the condition is progressive it will gradually worsen until the end of an individual’s life.

Symptoms such as difficulty swallowing can also cause choking, or inhaling food or liquid into the airways. The NHS continues to say that this can cause pneumonia, which can be life-threatening in some circumstances.

The PSP Association estimates there are around 4,000 people with PSP living in the UK.

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