Hal - Interview 26
More about me...
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'.
He told his family not to look at the MND Association website because he feels the information...
He told his family not to look at the MND Association website because he feels the information...
He tends to put MND to the back of his mind and lives life how he wants. He uses the motto 'make...
He tends to put MND to the back of his mind and lives life how he wants. He uses the motto 'make...
What about, has it, has it changed your outlook on life?
Oh, very much, yeah, yeah. A friend said some time ago that this isn't a rehearsal. This is it. The motto of the MND Association is 'Make every day count', and that's what we've been doing.
Has it changed you from being an ostrich, or do you still [laughter] stick your head in the sand?
I tend to still stick my head in the sand, and try to live life very much as I want. Because I like travelling, and in the last three years we've had a round-the-world trip, we've been to Malta, South Africa, a cruise in the Caribbean, a cruise in the Mediterranean, amongst others. So I'm certainly making every day count.
He thinks it's important to fight MND and make every day count. But sometimes tiredness hits you...
He thinks it's important to fight MND and make every day count. But sometimes tiredness hits you...
Mmm. Do you, you clearly feel quite strongly that you fight - it's a, it's quite a...
Yeah.
...determined thing for you.
Yeah.
Yeah. Are there, are there times when you feel you can't fight it?
Yeah. MND is a weird disease. Most of the time you can fight it. There are times when I would describe it as hitting a brick wall, and you have to rest, sit down. At those times, listen to your body, because it is a brick wall, and unless you're aware of it you can't get through it. It maybe lasts throughout a day, but listen to your body. But generally fight it.
Mmm. When you were told it was PLS, did that kind of give you extra fight, or how did it feel being told?
Certainly there was a - I won't say relief - but it did give me extra strength to fight it, to live life as best as you can, as normally as you can. And I think normal is the word you've got to use in every day situations. Be as normal as possible.
They met a social worker on the day he was diagnosed. She organised claims for Disability Living Allowance (now Personal Independence Payment) and Carer's Allowance without them even realising.
They met a social worker on the day he was diagnosed. She organised claims for Disability Living Allowance (now Personal Independence Payment) and Carer's Allowance without them even realising.
Wife off camera' And your car tax.
And road fund licence.
Oh right.
Yeah, that is free.