The story of Liz
My name is Liz Cunningham, I have lived Belfast all my life. I have been married 35 years and have two girls in their 30s getting married this year. I was diagnosed by a psychiatrist who had been treating me. She had sent me for 2 previous scans which showed nothing. She then sent me for a Pet CT Scan which showed that I had Alzheimer’s, I was 47. When I was then passed over to the Dementia Elderly Services the Consultant sent me for a 3D Scan, this showed I had 3 parts of my brain affected, back, left side and frontal left lobe. I was told I had Posterior Cortical Atrophy.
Alzheimer’s is a brain disease that causes a slow decline in memory, thinking and reasoning skills. The most common symptoms are consistent with damage to the posterior cortex of the brain, which is responsible for processing visual information. It is progressive and terminal, the brain tissue shrinks which causes loss of cells. The difference between Alzheimer’s and PCA is that language and memory deteriorates more slowly. I have been told I’m at level 6-7 so I have already been prepared for palliative care. It affects my skills such as literacy with recalling the exact spelling of words or using a word in the right context. Following text when reading, loosing a word, sentence or rows of text and writing and typing. Numeracy is affected, as mental arithmetic is out of the question, I have major problems with money so I try to only use my card. Making movements or gestures is Awkward, and doing most household tasks takes forever to do and I still have days that disasters happen. Visual Perception causes problems trying to shower, using the correct shower gel instead of conditioner, and dressing myself at times cannot be done without help, e.g how to put my bra or pants on or buttoning a shirt. The most difficult is having visual problems, the brain does not send the signals to my eyes.
When did you first notice the effects of this disease? I was an I.T Teacher and I would have assessed people for adaptive technology. I began to get very disoriented going from my office to other offices or to the toilet. I had to ask someone how to get to my office, they thought I was joking. I had to to write substantial reports throughout the week. I couldn’t make a sentence or spell words correctly or find a word to use in the right context. I became emotionally distraught. I found it difficult to teach as I could not follow instructions and forgot how to teach the software we were using. Basically I was sitting at my computer just looking at the screen most of the day. Having meetings was a nightmare as I couldn’t remember anything about the students or how far they had progressed. The final thing I done before I ended out ill and off work until I retired. I had to hold a conference for local employer’s, government bodies, the directors, staff and student’s. I had to inform them about all the adaptive technology we had, what I had designed for some student’s, how they could work in a local work environment. Instead the words did not come, I was making no sense at all. I could not understand what I was talking about and by looking at everyone’s faces they look embarrassed. As I packed up my stuff, tears began to fall and I could not get them to stop. I eventually managed to ring my husband to pick me up at the hotel. When he got there, I got into the back of the car and lied down, I couldn’t stop crying.Â
What is Dementia NI and how has the group helped you as an individual? Initially when I was diagnosed I want to find people who I could relate to and understand what is happening to our bodies. I met one of the co-founders of Dementia NI John McElelane. I was then introduced to the rest of the group. This was exactly what I want, to be able to talk and help other’s come to terms with their diagnosis. It has been a breathe of fresh air being part of the group. Lot of groups have asked us could we go out to help them with training with Dementia, how to communicate to people that have dementia and talk to radio and make a film later on in the year. The thing that is good it is the individuals that have Dementia going out to speak to different people, not paid staff who really don’t understand what is happening in our bodies. I love being part of a group that respect person with Dementia to enable them to have a life after diagnosis.Â