Robyn
Robyn is 35 and is married with one child, who is four. She works full time. Ethnicity: white Scottish.
Robyn’s dad Jim died of MND in 2018, after living with the disease for around 14 years. Since he has died, Robyn has suffered from health anxiety. Although she sometimes worries about developing MND, she has decided not to have genetic testing at present.
Robyn’s dad Jim was diagnosed with MND when she was 22, though the family believe that he had symptoms several years before this point. Robyn cannot remember exactly when she realised that MND was inherited in her family- she thinks it is probably something I;ve always know. However, growing up she didn’t know much about the disease and did not think that it would affect her immediate family. Jim unfortunately died of pneumonia in 2018, and although losing him was hard, she is grateful that he did not get to the end stages of the disease or have to cope with the pandemic.
Robyn has traced back her family tree to try and understand where MND came from. She found multiple other relatives who have been affected, as far back as 5 generations. Although she found it fascinating to learn about their lives, she stopped doing this research because she was making herself ill with worr.
Robyn hasn’t been told any statistics about her likelihood of developing MND in the future, and feels that this would be hard to predict. In her great grandfather’s generation, he was the only one in 12 siblings to develop the disease, yet two of the six siblings in her grandfather’s generation died of MND. Robyn questions the influence of other genes and factors in whether a person will develop MND.
When her dad was ill, Robyn’s main concern was for him. However, since he has died she has suffered from anxiety, particularly around her health, which has a profound impact on her life. Although this extends beyond MND, developing the disease is something she worries about, particularly when she gets a twinge or cramp. Although she feels more concerned as she gets older, she perceives the risk to her brothers higher than to herself, as the disease has only affected males in her immediate family. Because Jim developed his first symptoms in his late 40s, she takes the attitude of doing the things she wants to do now, as she doesn’t know what will happen in the future.
Robyn has talked to her mum, Sheenagh, about the results of her dad’s genetic testing. Robyn has considered pre-symptomatic genetic testing, but was advised against this by her GP, who didn’t think it would have any benefit. Although Robyn felt her GP was dismissiv, she is happy with her decision not to pursue testing; she feels that receiving a positive result would make her worry more. Whilst she would like to know that she doesn’t have the gene variant, as she would be less concerned for her son, she knows she would still worry about other things. Robyn would reconsider testing if she was in a better place mentally, or if effective treatments became available.
Robyn would be keen to take part in research to help future generations. She looked into donating her son’s umbilical cord for MND research but could not do this because he was premature. She is hopeful for a treatment or cure by the time her son is older.
Although Robyn appreciates the care that Jim received, she would like to see more support available for families after a loved one has died. She encourages others in a similar situation to cope with MND in whatever way works for them and emphasises that it’s okay for people to worry about themselves as well as other relatives.