PSP Association looking for volunteers

The Akhtar family

Volunteers are needed to sign up for a new role with a charity looking to expand its support for people living with Progressive Supranuclear Palsy (PSP), a little known neurological condition.

PSP is a Parkinson’s like disease, which slowly robs people of the ability to walk, feed themselves or communicate effectively.

For Nadia Akhtar and her sisters Farrah and Natasha, from Rochdale, their world fell apart when they heard their father was living with the rare neurological condition.

The three sisters had spent two years watching their intelligent, sociable and active father become a former shadow of himself. He was less and less interactive with his family, becoming withdrawn and forgetful, but doctors could find nothing obviously wrong with him.

So, when Munir Akhtar began experiencing difficulties with his balance, Nadia and her family sought further specialist help but were still not given an answer. It wasn’t until Mr Akhtar began to fall two to three times a day that the family were finally given a diagnosis of PSP.

Nadia remembers the shock of being told her dad had PSP.

“We were all a bit perplexed when we were given the diagnosis,” said Nadia.

“We wanted to get our hands on as much information about it as possible to get different perspectives. I remember reading the bit about average life expectancy being seven years. It was so unbelievable. I was appalled and horrified. We just didn’t want to talk about it and we didn’t want our parents to know what it was.”

Eventually Nadia, Farrah and Natasha found the strength to speak to their parents about PSP.

“The symptoms seemed text book for my dad,” said Nadia. “We were upset there seemed to be no doubt that this is what he had. The next six months were just horrendous. I thought we would never get past it, but it’s amazing how you do.”

Former Independent Financial Advisor Mr Akhtar, 70, is fortunate to live in an area where there is a neuro-rehabilitation team and so receives support from a range of health and social professionals including physiotherapists, speech and language therapists and occupational therapists.

The PSP Association (PSPA), the only national charity supporting people living with PSP and related condition CBD, is launching a pilot project in Manchester and is looking for volunteers to come forward to help.

The project is a Support Worker Scheme, aimed at enhancing the lives of people living with PSP and CBD by providing them with one to one help and support within their homes.

Support Workers will act as an additional link between the Association and those affected by PSP and CBD, including people living with the conditions, their families and carers. They will make and maintain regular contact with families living in the area, offering confidential support and accurate information to enable those affected to make in-formal decisions.

Each support worker will be supervised by a volunteer team leader, who will be working alongside Association staff to develop and manage a team of support worker volunteers in their area.

The Akhtar family attends the PSP Association’s Manchester Local Group, which offers friendship, support and advice.

“There is something reassuring about knowing other people are going through the same experience as you,” said Nadia. “It has been really helpful to be in touch with the PSP Association and because it is a small charity, it has a family feel to it. People know who you are.”

“We are the lucky ones,” she added. “We have a lot of support from health and social care professionals. This sadly isn’t the case for everyone, even within the Manchester area.”