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• Nerves & brain >> Motor Neurone Disease >> Telling others >> Telling others

Telling others

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• Nerves & brain >> Motor Neurone Disease >> Carers >> Tess - Interview 44 >> They get up early so she can help her partner get ready for work before she goes to work herself. She tends not to talk much to colleagues about it.

Tess met her partner, who had already been diagnosed with MND, when volunteering at a sailing club for disabled people. She now lives with him and is his main carer. (See Marcelin, MND37)

• Nerves & brain >> Motor Neurone Disease >> Carers >> Dick - Interview 42 >> His employers encouraged him to work at home whenever he wanted, to be with his wife. They offered him counselling if he needed it.

Dick was married to Di, who was diagnosed with MND two and a half years ago (2004). She died 6 months ago, aged 64.

• Nerves & brain >> Motor Neurone Disease >> Carers >> Bev - Interview 47 >> Being present at her mother's diagnosis was devastating. For the next week she felt as if they were on a desert island. She couldn't face the world.

Bev's mother died about a year after developing speech and swallowing difficulties and being diagnosed with bulbar onset MND, aged 72. Her family were unhappy with many aspects of the care received.

• Nerves & brain >> Motor Neurone Disease >> Bulbar onset >> Mike - Interview 23 >> Gill's first thought was how she was going to tell the family. Mike was calmer than she was. It was hard supporting others when still in shock themsel

Mike was diagnosed with bulbar onset MND 2 years ago in 2005. He is now unable to speak, so was interviewed through his wife Gill. He uses a whiteboard and Lightwriter to communicate. He has a PEG (Percutaneous Endoscopic Gastrostomy).

• Nerves & brain >> Motor Neurone Disease >> ALS- amyotrophic lateral sclerosis/MND aged 50-64 >> Sandy - Interview 36 >> He told his son first as they were going to a football match after the appointment. He told his wife when he got home and his daughter and colleagues

Sandy was diagnosed 5 years ago (2002) after noticing weakness in one arm. His arms have been worst affected, and now his speech and neck muscles are deteriorating, but he can still walk well.

• Nerves & brain >> Motor Neurone Disease >> ALS- amyotrophic lateral sclerosis/MND aged 50-64 >> Jack - Interview 03 >> His grown-up children have all reacted differently. One son has been more emotional than he expected.

Jack was diagnosed with MND a year before interview (2003), after some years of leg pain and stiffness. Symptoms have progressed slowly, still mainly leg weakness. He now uses a walking frame. (Wife Mary present, also interviewed separately MND04).

• Nerves & brain >> Motor Neurone Disease >> Rarer forms - PMA (progressive muscular atrophy) >> Jim - Interview 18 >> It was upsetting having to explain the diagnosis to lots of different people and make them understand how serious it was, but he couldn't move forward

Jim was diagnosed 2 years ago (2005) with Progressive Muscular Atrophy (PMA) form of MND. His legs and arms are affected but not speech.

• Nerves & brain >> Motor Neurone Disease >> Carers >> Peter & Olivia - Interview 46 >> They set up an email group to tell people and keep them informed. It gave them great emotional support and showed them the true meaning of friendship.

Peter's daughter Olivia (aged 22) died within a year of developing pain and weakness in her leg, in late 2006. Diagnosis of MND remained uncertain, as aspects of her condition were unusual.

• Nerves & brain >> Motor Neurone Disease >> Rarer forms - familial/inherited >> Ken - Interview 34 >> They put a note in their Christmas cards explaining Ken's diagnosis. Most friends have been supportive, but some are unsure whether to come and visit.

Ken was diagnosed with rare inherited (familial) form of MND less than a year ago (2006). He has limited arm and leg movement, has a PEG and uses a Lightwriter to speak, but carried on working until a month ago. Interviewed through his wife Chris.

• Nerves & brain >> Motor Neurone Disease >> ALS- amyotrophic lateral sclerosis/MND aged 65+ >> Sylvia - Interview 25 >> She told friends she was ill in her Christmas cards, because she thought they'd feel awful if she died and they hadn't known.

Sylvia was diagnosed a year ago in 2005, after noticing difficulties walking. She can move around at home with a trolley, and uses a wheelchair or scooter outdoors. She uses non-invasive ventilation regularly.

• Nerves & brain >> Motor Neurone Disease >> Bulbar onset >> Ann - Interview 24 >> Some people have been supportive, others have stopped phoning altogether. She has not yet thought how to tell her old school friend.

Ann was diagnosed with bulbar onset MND within the last 6 months (in 2006), after speech and swallowing difficulties. She is about to have a Percutaneous Endoscopic Gastrostomy (PEG).

• Nerves & brain >> Motor Neurone Disease >> Carers >> Bev - Interview 47 >> After her mother was diagnosed she took her on holiday with one of her mother's friends. She was shocked that the friend was unsympathetic because of

Bev's mother died about a year after developing speech and swallowing difficulties and being diagnosed with bulbar onset MND, aged 72. Her family were unhappy with many aspects of the care received.

• Nerves & brain >> Motor Neurone Disease >> ALS- amyotrophic lateral sclerosis/MND aged 50-64 >> Phil - Interview 28 >> He felt very vulnerable telling his employers but they were fantastic. He liked it when people treated him as if it was 'business as usual'.

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.

• Nerves & brain >> Motor Neurone Disease >> ALS- amyotrophic lateral sclerosis/MND aged 50-64 >> Phil - Interview 28 >> He knew he could no longer demonstrate cars. He worried how his employers would react and how he would continue to earn a living.

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.

• Nerves & brain >> Motor Neurone Disease >> Rarer forms - PMA (progressive muscular atrophy) >> Paul - Interview 09 >> His advice is to keep life as normal as possible and think positive. At the same time you need to anticipate what you may need in future.

Paul's diagnosis of progressive muscular atrophy was confirmed 2 years ago (2004) after several years of leg pain and weakness. Now unable to walk and he has limited arm movement. Uses a ventilator, but his speech is not affected. He worked until 6 months ago.