Valerie’s Story with RP
Valerie is in her mid-fifties and is currently living with Retinitis Pigmentosa. She works as a professional geologist in the oil energy industry. She lives with her husband, 3 teenage boys and a dog. She was diagnosed in 2015 after a series of unexplained issues with her eyes.
“All of a sudden, I found that I needed my phone torch on when leaving a dim area like the cinema. I just could not see well in the dark. While I was out running, I would start to get strange shimmering lights in my eyes. I also started bumping into door frames unexpectedly…I really had no idea what was happening to me, vision loss was not something I was expecting. There is no vision loss in my family.”
After a pretty shocking and unexpected diagnosis of RP and subsequent genetic testing, Valerie was asked to inform the DVLA about her limited field of vision as it was close to the limit for driving. She was asked to stop driving shortly after. This has a huge impact on Valerie, her husband and three boys.
“At the time, I had three small boys aged 5, 7 and 9, and I was working full time. It was a huge challenge. Friends and neighbours rallied around to help with lifts for our boys’ busy sports schedules, to which I will be forever grateful.”
To deal with losing her driving license yet having useful vision, Valerie took to walking and running more. “I saw this is a way for me to get fit and look at the silver linings here,” she says. However, with dark winters, as the years progress and after a number of falls, Valerie has had to be more careful running.
“Bikes are hard for me to detect as they are silent and fast,” she says. “I have had a few near misses, almost running into bikes. I now just run on shorter, local routes that I am very familiar with”, she continues.
Today, Valerie manages well despite a steady progressive decline in her vision. She has around 12-14 degrees of central vision remaining. She has big praise for the support NESS and the various people she has met there since 2015 to the present day.
“I have received immense support from social services there over many areas. I have had valuable support helping me to gain Access 2 Work and support with IT equipment. I have had invaluable social support from a social worker who allows me to voice my worries and fears and helps to seek solutions.”
More recently, as her vision has declined further, she decided to do cane training with the help of NESS. “This has been something that has always filled me with dread and something I never thought I would have to do,” she says. “Meeting and working with Lindsey (the Rehabilitation for Visual Impairment Officer) at NESS has been wonderful in that it has helped me understand the various cane types and taught me the essentials. I have learned to have fun using different tools and techniques in what could have been a traumatic event,” Valerie continues.
“I have learned to accept that using a cane is something that will help me in the future, despite how difficult it still is to use. It has become a needed mobility aid, as I still have useful central vision, despite significant peripheral vision loss. I struggle going down steps, especially in the Granite city where pale grey steps are everywhere! Learning to use the cane has helped me overcome some of these difficulties and allows me to feel more independent. Losing my independence with vision loss is a significant blow, and over the years, I have stopped many activities I once enjoyed.”
Valerie has gained confidence in using her cane little by little and has been uplifted by the improvements with cane design and colours that RNIB offer online.
“I plan to get a colour co-ordinated cane soon, one that will go with my outfits a bit more. It may feel more like an accessory to me and less like a symbol of disability. I am not using my cane fully right now. If I know my route and the lighting is good, then I do not need it. I tend to carry it in my bag, so when I feel unsure or in a new environment, it is there to help me. We live in an able-bodied world, and I face daily ongoing challenges. I am grateful for my remaining vision and try to make the most of it. Gentle exercise, sea swims with friends, yoga and being in nature are ways in which I have developed resilience against this disease.”
Today, Valerie manages to continue working with different working patterns that help her to be as productive as she can be and enable her to continue to bring her skills and knowledge to the workplace. “I have a strong identity as a geologist and have worked for so long with rocks which are ‘grounding’ to me in many respects,” she says. “I enjoy trying to work out the complexities of the subsurface geology and I especially enjoy getting to see interesting rocks when we travel on holidays. I think my family are used to that by now!”
Carla Marchbank, statutory services manager at NESS, said:
“Val’s story shows us the journey some people experience learning to live with vision impairment. We try to be around for them while they are on their journey, and while they need different sorts of support at different times.
“Val has benefited from the range of input from different members of the team as she has adapted to her new circumstances.
“She has shown great resilience, and I am proud of the role our staff has played – we will of course continue to be here to support her in the future.”
