After living with a misdiagnosis of Parkinson’s for around 10 years, Mary was diagnosed with PSP in 2020.
Here Mary’s husband John, shares details of their diagnosis journey and why they wanted to donate to PSPA’s Understood Research Appeal.
“Mary has been living with PSP for around 14 years now.
“The first indication that something was not right, was when her handwriting became minuscule so that she couldn’t even read it herself! Initially she was diagnosed with, Parkinsons after a CAT Scan in Oxford, and she lived with, and received good support from national and local Parkinsons groups, until early 2020 when her diagnosis was amended to that of PSP. The diagnosis was amended due to progressive symptoms including multiple falls and loss of her speech.
“Mary’s major symptoms have been loss of balance (leading to falls), and loss of speech and these have intensified, and been added to by problems with her eyesight.
“Up until recently, she has been able to use her banking background and experience to run the family finances and administration, but this is now under threat due to her eyesight problems.
“Mary’s balance is now so poor, that she doesn’t attempt to walk anywhere within the house without my being there to support and guide her, which at least, has greatly reduced the number of falls. For any trips outside the house, she always uses a wheelchair which is kept in the car.
“At present, she can use her computer to manage our financial affairs, but this can’t continue for much longer unless I take a more hands on support for what she is doing in that regard.
“Her intellect is amazingly resistant to what PSP is doing to her brain, but it appears to be much more damaging to her physical condition.
“We are able to get out and attend classical music concerts both locally and in London and enjoy holidays together both in the UK and abroad.
“We are fortunate to be able to support many charities and have recently donated a substantial sum to PSPA’s Understood research appeal. PSP has been a cruel burden to Mary, but, remarkably, she never complains, and we both realize that there are many others living with this awful disease who have not been so fortunate, and have much more quickly, contracted this disease, and died from it, within a much shorter time span.”
PSPA’S UNDERSTOOD APPEAL
Visit our Understood Research Appeal web page to learn how you can help us to achieve our goals of unlocking
- Quick and accurate diagnosis
- Immediate treatment
- Consistent standards of care providing symptom management within two months.
