Motor Neurone Disease (MND)

Hal - Interview 26

Male
Age at interview: 60
Age at diagnosis: 57

Brief outline: Hal was diagnosed with MND nearly three years ago in 2004. Diagnosis revised to primary lateral sclerosis (PLS) a year ago. His speech is affected, but mobility is still good.

Background: Hal is a retired software company managing director, married with 2 adult children. Ethnic background/nationality' White British.

Audio & video

Hal first noticed symptoms about five years ago in 2002, when he started losing dexterity in his right hand. His GP referred him to a neurologist, but after lots of tests MND was ruled out. Two years later he noticed his speech was becoming slurred so he was referred to another neurologist. He did not realise he was being assessed for MND, but while he was getting dressed after the appointment his wife asked the consultant was his specialty was. It was then they discovered they were at an MND clinic and that this was Hal's diagnosis. They were devastated, and the drive home that day was terrible.

The whole family found it very difficult to come to terms with the information they were given that many people with MND were not likely to live more than two or three years. Hal felt he really did not want to know too much at that stage, and describes himself as an ostrich who put his head in the sand. However, his symptoms did not progress very fast, and about a year ago the diagnosis was revised to Primary Lateral Sclerosis (PLS). This has given him new hope that he can continue to enjoy life for many years to come. His right hand is a little worse than it used to be and his speech has become more slurred, but he has no swallowing difficulties and his mobility is generally very good. He has continued to play golf with friends until recently when he broke his hip in a fall, but hopes to play golf again once his hip has recovered. 

Being in hospital with the broken hip was one of the worst times for Hal, because the staff on the orthopaedic ward did not know much about MND, and because of his speech he found it difficult to make himself understood. Otherwise he has been pleased with his care, and impressed by the social worker who made sure they obtained all the benefits to which they were entitled. He now volunteers at the hospital to help with staff training, so doctors in training can examine him and learn about MND.

Hal had already retired when he was diagnosed, and he and his wife have taken every opportunity since to go away on holiday, as they love travelling. He still drives, and enjoys the feeling of normality and freedom when he is out driving. Although sometimes he feels tired or depressed, he has been determined not to worry about his condition or let it take over his life. He takes to heart the MND Association motto 'Make every day count'. 

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