Raising awareness of rare palsy condition
A FRASERBURGH man is raising awareness of a rare degenerative brain disease and aiming to create a North-east support group.
Fred Smart is the sole carer for his wife, Isabel, who is affected by Progressive Supranuclear Palsy .
This debilitating disease progressively kills neurons in the brain, resulting in loss of balance, movement, vision and the ability to swallow.
While PSP can cruelly remove the ability to do the simplest of tasks away from those affected, the person usually remains mentally alert as if trapped in their own body.
PSP itself can be a difficult diagnosis to make, with the early symptoms of the disease resembling other conditions such as Parkinson’s or Alzheimers. This being the case, many people are, at times, misdiagnosed and, as a result, the true number of PSP sufferers in the country could actually be much higher than those who have already been diagnosed with the disease.
Affecting people from their 40s and above, PSP worsens over time and so the average life expectancy of those diagnosed may only be a matter of years.
In Fraserburgh, Fred Smart recently hosted a fundraising event to raise awareness for the Progressive Supranuclear Palsy Association (PSPA), raising the fantastic sum of £1,127.
Caring for his wife at their home in Fraserburgh, Fred is looking to create a support group for those affected by the disease in the local community.
He said: “If we can get the support, we’ll do it. Not a lot of people know about it. The people at Aberdeen Hospital, when Isabel was diagnosed, couldn’t tell us if there was a group we could contact. People are coming out of hospital feeling lost.”
Isabel began showing symptoms of PSP in 2007, but was not diagnosed with the disease until 2009.
Fred sought help and advice from the PSPA which is dedicated to the support of people with PSP and Cortico Basal Degeneration (CBD), and those who care for them.
PSPA funds research to better the understanding of PSP and CBD, to find ways to better diagnose and treat the diseases. It also offers help nationwide in the form of local support groups and fund-raising events like the one held in Fraserburgh.
The work of the PSPA is wholly dependent on the donations of the public, with the association accepting donations on their website at www.pspeur.org.
PSPA also produces a magazine to share the stories of those affected by PSP which is often the first step towards discovering what support is available to them.
Retired and dedicated husband Fred has rejected the opportunity for carers to look after his wife, instead taking on the role himself.
He said of living with the disease: “It’s very difficult. Isabel can’t walk, her speech is going, she has difficulty swallowing, and her sight is sometimes affected by it.
“We get a speech therapist, Emma, who comes pretty regularly to help, and we get the physio up from the hospital.
“We’ve had a lot of help locally, and the social services have been spot on,” he added.
But sadly, as Fred admits: “At the moment, there is no cure or treatment.”
The couple’s daughter, Susan, added: “It is difficult, especially seeing my dad coping with it.”
Fred continued: “I want to make people aware of this disease and find out how many local people have it. There is support available.
“The support group will be to help one another and make them aware of the PSPA. You can learn about things that you wouldn’t have previously known about.”
Mr Smart added that the PSPA had recently loaned the couple prism glasses, spectacles which help those with PSP to see downwards as many with the condition have difficulty watching television, reading a book or even eating while seated.
Those interested in contacting Fred Smart about the creation of a support group can contact him on 01346 518716.
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Wednesday 19 June 2013
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