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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. |
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He told his family not to look at the MND Association website because he feels the information about life expectancy is too negative.
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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. |
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He tends to put MND to the back of his mind and lives life how he wants. He uses the motto 'make every day count'.
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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. |
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He thinks it's important to fight MND and make every day count. But sometimes tiredness hits you like a brick wall and then you need to stop and rest.
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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 antidepressant but it has made him calmer and restored his sense of humour.
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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. |
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They met a social worker on the day he was diagnosed. She organised claims for Disability Living Allowance 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 normal.
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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. |
