Malcolm received his PSP diagnosis in February 2024. He and his wife, Ann, were left with nowhere to turn.
Below, Ann shares how PSPA helped them find support, community and clarity following Malcolm’s diagnosis.
“When Malcolm received the PSP diagnosis, we had nowhere to turn. With no local services and no follow-up appointments, I felt isolated until an online search led me to PSPA.”
“Thank goodness for PSPA. I really don’t know how we would get through this without them. We just have PSPA and the local hospice—there’s not much support around us locally.”
“Once I reached out, PSPA swiftly connected us with others through the Newly Diagnosed Group. The diagnosis made us feel incredibly isolated, so just knowing there were others out there going through something similar was very comforting.”
“Beyond the initial comfort, PSPA also provided practical guidance. I attended the Rare Resilience course, where connections blossomed into a vital support network.”
“Some of the carers still stay in touch. They have been so helpful as I navigate the needed steps and equipment for adapting our bathroom.”
The Gift of Mobility
It was at a local Kent Support Group meeting that Ann spotted a solution for Malcolm’s growing unsteadiness: a rollator.
The family applied for and received a PSPA Support Grant, which helped cover the cost of the mobility aid. The impact has been profound.
“The rollator has made a huge difference; it’s really Malcolm’s link to the outside world,” Ann says. “He is so unsteady, I feared he would fall, even while holding onto me (and potentially taking me down with him). Now, the rollator gives him stability and helps me get him out to coffee shops and garden centres about four times a week.”
Support for the Carer, Too
The support didn’t stop with Malcolm. Ann discovered PSPA grants are available to carers as well. When she mentioned needing physiotherapy to strengthen her knee—a necessity due to the physical demands of caring—PSPA stepped in.
The grant covered private physio appointments, using ultrasound and acupuncture to reduce swelling. Ann credits the treatment with strengthening her knee and helping her avoid replacement surgery (for now).
Most recently, PSPA is launching their Befriending Service, which is connecting Malcolm with a male volunteer for regular chats.
“Not being able to get out and about has meant Malcolm misses male company. He is really looking forward to it.”
“Caring for someone living with PSP is all-encompassing—I’m always on high alert for falls, and I have a never-ending list of tasks to tackle,” Ann concludes.
“But knowing PSPA is on the end of the phone, and has a range of services that can help, that’s truly reassuring.”
HELP MORE PEOPLE LIKE ANN AND MALCOLM
You can help more people like Ann and Malcolm by donating to PSPA’s Christmas Bauble Appeal.
You can donate on our website or by giving us a call on 01327 322414.
