Purpose and anonymity
I’ve created a series of articles to share my experience of what happened after a close family member was diagnosed with PSP, in the hope that it will be useful and valuable in some way.
In order to protect the identity of the person I’m writing about, I’ll refer to the family member as Roger.
What is PSP?
PSP stands for Progressive Supranuclear Palsy.
How did it all begin?
Roger experienced a range of symptoms within a year or so after which the GP organised tests and referred him to a Neurologist.
The symptoms included weakness on one side of the body and changes in speech and gait.
The Neurologist diagnosed him with having Parkinson’s Plus and they referred him to another Neurologist to get a second opinion and a more accurate diagnosis.
Parkinson-Plus syndromes, also known as disorders of multiple system degeneration, is a group of neurodegenerative diseases featuring the classical motor features of Parkinson’s disease (tremor, rigidity, akinesia/bradykinesia, and postural instability) with additional features that distinguish them from simple idiopathic Parkinson’s disease (PD).
The atypical parkinsonian or Parkinson-Plus syndromes are often difficult to differentiate from PD and each other. They include multiple system atrophy (MSA), progressive supranuclear palsy (PSP), and corticobasal degeneration (CBD).
Source – Cambridge Centre for Parkinson-Plus
Parkinson’s Plus includes the following conditions:
- Progressive Supranuclear Palsy (PSP)
- Corticobasal Syndrome (CBS)
- Multiple System Atrophy (MSA)
Rapid decline
In less than 12 months, Roger was struggling to open his mouth fully which affected him during mealtimes, his speech and voice projection changed and he was falling more often.
At this point, he had been given a possible diagnosis but was waiting for another opinion.
He decided to go to a health farm in India to improve his health. However, when he arrived his entire body was stiff and he was unable to move without assistance. We later discovered that this was because 3 weeks prior to the trip, he stopped all his medication in a quest to find out which one was making him feel dizzy.
A family member suggested that he pay for a private room in a hospital where he could have Physio and Speech Therapy daily. The benefit was huge! We could see and hear the difference when we spoke with Roger on the phone.
Shortly after, he accidentally fell and fractured his hip. He had Physiotherapy every day and made an amazing recovery but his health took a turn for the worse. He developed a couple of infections and his body was struggling to fight them. The Doctors told us that his family needed to be with him and from the tone of the messages and reading between the lines, it was clear that they weren’t sure if he was going to make it.
We flew out that day.
Part 2 of 11: ‘Why we dropped everything and rushed to India‘
