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Motor Neurone Disease

People's stories

ALS- amyotrophic lateral sclerosis/MND aged 50-64

Phil - Interview 28

Phil - Interview 28

Age at Interview: 60
Sex: Male
Age at Diagnosis: 59
Background: Phil is a retired transporter fleet controller, married, with 2 adult children. Ethnic background/nationality: White British.

Brief outline:Phil was diagnosed just over a year ago, after nearly 2 years of leg weakness. He is still able to walk at home but uses a wheelchair and scooter outdoors. He has some weakness in his right arm.

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Once you've accepted you have the condition you can start to get support in place and look forward to the future.
Print But I think the biggest motivation is trying to get people to accept it. If you embrace it, like I said before, then because you've embraced it you can then do something about it. You can go and talk to people who have been through it, share their experiences. The equipment that's available to you is easier to get if you ask for it, rather than hide the fact that you've got it or not acknowledge the fact that you've got it. It's, there are benefits that you can gain, monetary benefits, and other things as well. Because once you've accepted that you've got motor neurone, you need to start looking at the future. Because you've got a future, guys, you know. It's, it's not over today. You've got a future, and you've got to plan that future as best you can, you know. And my advice is, “Go on a bloody good holiday to start with.” You know, as soon as you know you've got it, if you can afford it, go and have an holiday. Because it never gets better. I say to myself each morning when I get up, “This is the best I'm ever going to feel. So make the most of it today. Because tomorrow I'm going to feel a little bit worse.” And you've got to do that, you know.

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