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Hal - Interview 26

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.

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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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Being told he had PLS gave him extra strength to fight it.

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How did it feel being told it was PLS?

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.

 
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He was glad he'd already chosen to retire before diagnosis, rather than being forced to stop work.

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When, when you retired, was that because of the symptoms, or was that independent?

No, no. Totally independent. And I'm glad it was. Because had I retired after the diagnosis, I would have felt as if I'd given in to it, whereas I retired about 6 months before, an engineered retirement through a company take-over. And, you know, it was something I wanted to do, rather than having to do.

 

He told his family not to look at the MND Association website because he feels the information...

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I'm a person that's a bit like an ostrich, I bury my head in the sand. So I didn't really know an awful lot about MND at that point, and - but I knew it wasn't good. Obviously my wife was very upset, and when we told our children, one of the things we told them was not to look at the website, because it would - I always think it's negativity. I know sometimes it's really hard to get the level right, but the prognosis on the website is like two to three years, whereas every case is different.

 

He tends to put MND to the back of his mind and lives life how he wants. He uses the motto 'make...

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As much as I can, I try and put the MND to the back of my mind, and live life as I want. Again, it's a bit of my mindset of being an ostrich. And it's working to its favour, really.

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...

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I would say the main message is given by the MND Association, 'Make every day count.' It isn't a rehearsal. And I suppose the other thing is fight it, don't give in to it.

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.

 
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He found it difficult to control his emotions. He was worried about becoming reliant on an...

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MND plays havoc with your emotions, and at times it becomes very difficult to control them, whether it's laughter, happiness, or sadness. The emotions began to manifest themselves in the inability to control tears whether they were tears of happiness, even down to watching someone win a game show on TV, or sadness if they didn't win!

It also affected my sense of humour to the point that I didn't have one, the process is so slow and gradual that my wife did not realise it was happening.

About 9 months ago my consultant recommended that I take an anti depressant, which I resisted for a while but eventually agreed to and was prescribed citalopram 10mg tablets. The reason I resisted is probably down to two issues, the main one is that I do not like taking tablets on a regular basis, and secondly is the addiction to this type of drug. On the second point I was assured that the type of drug being recommended was the least addictive of this family of drugs.

In reality the drug has helped tremendously particularly with my overall demeanour and sense of humour. My wife realised at this point that my sense of humour was back (she was not sure this was a good thing!).

It also helps with the control of the emotions, but there is still a tendency for them to surface very quickly, but I am on the smallest dose of the medication possible and want to stay there.

 

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.

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I mentioned earlier that one of the people we saw at that initial visit was a social worker, who at the time got us to sign two forms. When we came away, we hadn't got a clue what we'd signed. And in actual fact the consultant that we saw had been instrumental in getting MND recognised as a' illness which qualified for Disability Living Allowance. And that was one of the forms I signed, and my wife actually signed a form for a Carer's Allowance. So yes, we have made benefit from what is available to us. Other benefits that have become available is we get a free pass on the M6 Toll Road [laughs], which is great.

Wife off camera' And your car tax.

And road fund licence.

Oh right.

Yeah, that is free.
 
 
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He likes to be out in his car because he doesn't have to speak. It's the one place where he feels...

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Has it affected your driving at all, the right hand?

No. Obviously it is a DVLA [Driver and Vehicle Licensing Agency]-notifiable disease, so the DVLA are aware of my condition, and obviously it affects my licence, but no restrictions as yet on my licence, and I get the road fund tax paid for me. 

And do you have to go for tests, re-tests with the DVLA?

Not as yet, no, no. I think it's a situation between me, my GP and consultant. Obviously if they see a deterioration, then who knows? But as yet, I'm fine. Driving is one of my - I wouldn't say hobbies - but I like vehicles. And I feel totally normal behind the wheel. I don't have to speak, and it's the one situation where - certainly at the moment - I totally feel normal.

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