Ken

Age at interview: 59

Age at diagnosis: 58

Brief Outline:

At the time of the interview Ken was 59 and Chris was 60, with three adult children. Ken worked as a soft furnishing workroom manager before retiring. Chris retired when she reached 60 to help care for Ken. Ethnicity: white British.

Ken was diagnosed with MND in 2006, around 10 years after his brother died of the disease. The family did not know the condition could be inherited, so his diagnosis was a shock. Ken was interviewed through his wife Chris.

More about me...

Ken’s interview is from our MND section which was published in 2008 (See Ken's MND profile). As he had an inherited form of the disease, some of his experiences have been included in this module on inherited MND.  

Telling Ken’s neurologist that his brother had died of MND caused “alarm bells” and prompted further investigations.

Where do we start, really? Well, ten years ago Ken’s brother died of MND. He had it for five years. It affected him very differently to Ken. We didn’t know at that time that it was, there was a hereditary strain, so when Ken was diagnosed it was sort of a real shock. Ken had been going to the hospital with problems with his sinuses, because he was all, felt like he had trickling down the back of his throat, and that was getting worse. So, he’d been going to the hospital to have various head scans and X-rays and all that sort of thing.

 

But then in 2005, about sort of September time, he started, if he was eating anything, he would involuntarily cough. And so, while he was at work, he always took a packed lunch. And he got to where he would go to lunch later so that he didn’t have to sit with anyone, because he knew that he’d start coughing. And we just put it all down to all this like phlegm he was building up in the back of his throat. And we had a hospital appointment and Ken happened to mention - and he sort of piled it on a bit, really, because we felt we wasn’t getting anywhere with the hospital. And so, you know, we thought if he made it sound - well, it was getting bad - but if we made it sound worse they might speed things up. And so Ken sort of said about his coughing food and that, and then they said, “Was there any neurological problems in the family?” So, we mentioned John. Well, with them it sort of started sending out alarm bells. And the doctor got up and went and brought some other people in and they sort of gave Ken a, got him to do various things, didn’t they, with your arms and that. And, and then sort of they started looking up on their computer. And I said, “Well, MND isn’t hereditary.” And the doctor said, “Yes, it can be.” It’s a very small percentage, apparently. But they would send Ken for tests and things to confirm it.

Ken found losing his voice to be a “barrier” in social situations, as it is difficult to keep up with conversations whilst using his speech software. Staying in touch by email is important.

Chris: Ken can only communicate through this - I mean we do it as a family. Like because it was my birthday Sunday and everybody came round for tea and there was a lot of us, and, and poor old Ken, you don’t do it on purpose, but he, you know, he has to sit in the background. And I mean people do sit and talk to you and that, don’t they? But you, sometimes you realise that Ken’s not being included. Because it’s hard to do small talk, isn’t it? You know, he can’t, by the time Ken’s typed in something he wants to say. And when we’ve gone visiting and like Ken will type something in and then he does his ‘uh-oh’ bit, and the whole room goes quiet so that we can listen. And, and its drawing attention to yourself. And, you know, it’s just something you have to sort of live with really. But it is, you know, it can be a problem, can’t it?

Ken: Barrier.

Chris: Sorry? Barrier. It is, it is a barrier, yeah.

You can’t present yourself any more in a way, can you?

Chris: No, that’s right. That’s why being able to email people, Ken can write up, and he’s got a bit of a sense of humour, haven’t you? So, you do write funny things. And people love getting Ken’s emails, because he tells them stories.