Ann was diagnosed with bulbar onset MND within the last 6 months (in 2006), after speech and swallowing difficulties. She is about to have a Percutaneous Endoscopic Gastrostomy (PEG).
Ann had previously had breast cancer and a mastectomy. Ever since the operation she had been unable to cough properly, and then began to have some speech and swallowing problems and occasional choking. She wondered whether it was a result of scarring in her throat from having a tube inserted during the mastectomy operation. She was referred about 9 months ago to an ear, nose and throat specialist (ENT) by her cancer team, but nothing significant was found. Her speech continued to become slower, and she went back to ENT who referred her to a neurologist. After having tests done, she was asked to come back for another appointment with her daughter, and was told there was no doubt that she had the bulbar onset form of MND. To her, the appointment, at which two medical students and a registrar were present, felt very clinical and unemotional. For her daughter it was a terrible shock, and she feels with hindsight it was not fair to tell her to bring her daughter along. Immediately after the diagnosis, they saw the nurse and MND co-ordinator, and felt overloaded with information. She would have preferred to get this at a later stage once she had absorbed the news.
Ann’s daughters wanted her to get a second opinion and her GP supported them fully. The new consultant said it was 97% certain that the diagnosis was correct. She found it helpful at the time to have this small degree of uncertainty. As a former speech therapist and MND Association visitor, she has seen many patients with MND and in some ways knows too much about how the condition may progress. She understands why some of her former patients experienced denial and frustration. She felt very low and depressed after the diagnosis, but her daughter and partner took her away on a series of holidays in Europe. She found this really lifted her spirits and made her feel whole again, though she worries about becoming a burden on her family. She recognises the need for support, but does not want to be overwhelmed by it or to let MND take over her life. She tries to keep intellectually active, for example through adult education courses, travelling, and discussion groups, although as her speech becomes slower this has become more difficult. At the same time she feels it is important to be practical about matters such as arranging nursing home care, and updating her will and power of attorney.
Looking back, Ann wonders whether the MND was triggered by the chemotherapy and radiotherapy she had for breast cancer. She has always reacted badly to drugs, and as a result has decided not to try riluzole. However, she has decided to have a PEG (Percutaneous Endoscopic Gastrostomy) in the near future to help avoid swallowing and choking problems. She feels that if your life is shortened, it is vital to get the best possible quality of life.