North-east man with rare condition thanks charity through video promo donation
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A north-east man left unable to work because of a rare autoimmune condition has thanked a sensory charity for its lifeline support by donating a promotional video.
Innes Gregory on the left and Faustas Talacka on the right holding a camera.
Innes Gregory and cinematographer friend Faustas Talacka produced the film for North East Sensory Services (NESS) after his vision was impaired by ocular myasthenia gravis (OMG) a form of myasthenia gravis. Innes, from Aberdeen, developed OMG in September 2018 when he suddenly began suffering from double vision and was unable to open his eyelids. He was referred to Aberdeen Royal Infirmary Eye Clinic where he was diagnosed with OMG.
It is estimated there are 1,847 people living with myasthenia in Scotland and approximately 12,000 across the UK. The disorder interferes with the passage of messages from the brain to the muscles in the body. It affects the muscles and nerves around the eyes, leading to blurred or double vision and drooping of the eyelids. In some cases, more muscles continue to weaken, which can lead to problems speaking, swallowing and chewing. Powerful steroid medication helped Innes’ eyelids reopen but the former oil worker turned drone pilot was left housebound.
The hospital recommended Innes contact NESS, where he received support in accessing benefits as well as practical help with mobility and daily living skills. The 55-year-old still suffers from impaired peripheral vision, and long-term fatigue.
Innes“Although I was lucky to get a quick diagnosis, I was left with quite severe double vision. I was housebound. I couldn’t shop. I couldn’t work. I couldn’t do anything else. I lived on a second-floor flat at the time and tripped on the stairs. It was not a massive fall but big enough to scare me into thinking ‘I really need people to help me’. It's difficult to do that because I'm very independent. NESS helped me turn my life around at that point. They understood what I needed.
NESS supports thousands of people with visual and hearing impairments across Aberdeen, Aberdeenshire, Dundee, Moray and Angus. The charity’s main objective is to help people with sight or hearing loss live as independently as possible. This includes social work, employment support, rehabilitation for visual impairment, support for young people, equipment to support daily living, British Sign Language services and lipreading classes.
Innes and Faustas, who met through drone filming, came up with the idea of helping NESS raise its profile through film shortly before the Covid pandemic hit. As lockdown restrictions finally eased they began work interviewing some of those it has helped, alongside staff and volunteers. The video includes former Royal Navy sailor John Derek Mitchell, who has macular degeneration, discussing how the charity helped him regain his independence through its cane walking course. It also features Sonia Seivwright, who has hearing loss, describing how NESS helped her get a bus pass as well as housing, employment and equipment support.
Faustas travelled from his home in Glasgow for the shoots in Aberdeen and Dundee. He filmed, edited and produced the film and also assisted with subtitles. Innes helped Faustas as much as his own condition allowed, arranging interviews and setting up equipment.
Innes“We wanted to do all we could do to give back to NESS as a way of thanks for all the help it got me to where I am now. We thought the best way to highlight its incredible work was for people to share stories and encourage other people to come in and seek help if they needed to.”
Graham Findlay, chief executive of NESS“We are immensely grateful to Innes and Faustas for giving up their time and resources to make this amazing video highlighting the person-centred support available to service users. While financial donations and legacy gifts are vital to our work, gifts in kind like this save us costs on much needed goods and services. We want to make sure everyone in the north-east with a sensory impairment is given all the support they need to live as independently as possible and participate normally in society. Thanks to Innes and Faustas, we can make a huge difference to the lives of thousands of blind and deaf people across the region.”
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