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• Nerves & brain >> Motor Neurone Disease >> ALS- amyotrophic lateral sclerosis/MND aged 65+ >> Shyam - Interview 35 >> He says he has never felt worried or upset by the diagnosis. What saddens him is feeling that he is a burden on his wife.

Shyam was diagnosed with MND about six months ago (2006). He has difficulty walking and uses a wheelchair. His speech is slowing down and his voice is changing.

• Nerves & brain >> Motor Neurone Disease >> Rarer forms - familial/inherited >> Liz - Interview 39 >> She had already met her future husband at university before her father died of MND. They assumed it was unlikely to affect her until she was much olde

Liz was diagnosed with inherited form of MND in 2004. (Her father and uncle both had MND). Weakness in her legs progressed to her arms; she is now in a wheelchair. Her speech is unaffected.

• Nerves & brain >> Motor Neurone Disease >> Rarer forms - familial/inherited >> Liz - Interview 39 >> Her father did not have a known mutation so she did not have genetic testing. She had already been diagnosed before she and her husband would have tho

Liz was diagnosed with inherited form of MND in 2004. (Her father and uncle both had MND). Weakness in her legs progressed to her arms; she is now in a wheelchair. Her speech is unaffected.

• Nerves & brain >> Motor Neurone Disease >> Rarer forms - familial/inherited >> Liz - Interview 22 >> She might not have had children if she'd known she had familial MND, but she's glad she has them. She wants them to have positive memories of her life

Liz was diagnosed with rare inherited (familial) form of MND 8 years ago (1998). Sixth member of her family to be diagnosed. Has weakness in her arms and legs, and some speech difficulties. Has a PEG but does not use it yet.

• Nerves & brain >> Motor Neurone Disease >> Rarer forms - familial/inherited >> Liz - Interview 22 >> So far her children have decided not to be tested for the SOD-1 gene mutation. At the moment neither of them wants children.

Liz was diagnosed with rare inherited (familial) form of MND 8 years ago (1998). Sixth member of her family to be diagnosed. Has weakness in her arms and legs, and some speech difficulties. Has a PEG but does not use it yet.

• 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 >> Carers >> Ann & Barry - Interview 48 >> She wants to care for her husband herself as long as she can. He does not want carers' working hours dictating what time he gets up or goes to bed.

Ann's husband Barry was diagnosed with MND about 10 years ago (1997) at the age of 49, after two years of symptoms and tests. (Since identified as primary lateral sclerosis - PLS).

• Nerves & brain >> Motor Neurone Disease >> ALS- amyotrophic lateral sclerosis/MND aged 65+ >> Sylvia - Interview 25 >> Her husband was upset when she considered having outside help with washing and dressing. Now he helps her and it has made them closer.

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 >> ALS- amyotrophic lateral sclerosis/MND aged 20-49 >> Kim - Interview 10 >> Having strangers washing and dressing you is difficult, but she felt it was better for her marriage and her family to have carers coming in.

Kim was diagnosed with MND (ALS) about a year ago (2005). Now unable to walk she needs help with most daily tasks, but is still working as an occupational therapist and able to drive. Her speech is not affected.

• Nerves & brain >> Motor Neurone Disease >> Rarer forms - familial/inherited >> Liz - Interview 39 >> Having paid carers is fantastic because she doesn't feel guilty asking them to do things for her. The only downside has been the lack of continuity of

Liz was diagnosed with inherited form of MND in 2004. (Her father and uncle both had MND). Weakness in her legs progressed to her arms; she is now in a wheelchair. Her speech is unaffected.

• Nerves & brain >> Motor Neurone Disease >> Carers >> Bev - Interview 47 >> She felt worried and unprepared for dealing with her mother's PEG. To be feeding the person who had always nurtured her seemed a strange role reversal

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 >> Carers >> Ann & Barry - Interview 48 >> She felt she had become a carer when her husband needed to use ventilation every night. It was strange when he started using it but she is used to it

Ann's husband Barry was diagnosed with MND about 10 years ago (1997) at the age of 49, after two years of symptoms and tests. (Since identified as primary lateral sclerosis - PLS).

• Nerves & brain >> Motor Neurone Disease >> Carers >> Ann & Barry - Interview 48 >> She has been depressed about the loss of their future as a couple. She takes an antidepressant, but has also learnt to accept the things she can't cha

Ann's husband Barry was diagnosed with MND about 10 years ago (1997) at the age of 49, after two years of symptoms and tests. (Since identified as primary lateral sclerosis - PLS).

• Nerves & brain >> Motor Neurone Disease >> Carers >> Una & Bill - Interview 49 >> Becoming a carer has crept up on her. Each step feels like a mini-bereavement but it's amazing what she has got used to. A practical focus helps.

Una's husband Bill first noticed symptoms at the end of 2005 and was diagnosed aged 63. A ventilator greatly improved his energy levels for nearly a year. He had a PEG fitted but does not yet use it for feeding.

• Nerves & brain >> Motor Neurone Disease >> Carers >> Tess - Interview 44 >> Sometimes she tends to look on the dark side, but her partner's positive attitude rubs off on her.

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 >> Ann & Barry - Interview 48 >> It is sad to have changed from being just a wife to being a carer. She misses him being able to hold her hand. Becoming a carer is a progression.

Ann's husband Barry was diagnosed with MND about 10 years ago (1997) at the age of 49, after two years of symptoms and tests. (Since identified as primary lateral sclerosis - PLS).

• Nerves & brain >> Motor Neurone Disease >> Carers >> Una & Bill - Interview 49 >> The hospice has been fantastic and set up a carers' course. Her MND Association befriender knows how she feels and helps her deal with guilt and negat

Una's husband Bill first noticed symptoms at the end of 2005 and was diagnosed aged 63. A ventilator greatly improved his energy levels for nearly a year. He had a PEG fitted but does not yet use it for feeding.

• Nerves & brain >> Motor Neurone Disease >> Carers >> Dick - Interview 42 >> The generosity and selflessness of friends who helped him care for his wife has made him see the world differently.

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 >> Roger & Luise - Interview 45 >> Roger found strength from somewhere. It was wonderful to see his sons involved in caring for their mother. Parishioners from her church rallied round.

Roger's wife Luise was diagnosed in 2004 aged 59, after a year of weakness in her fingers and leg. Roger and his sons cared for Luise at home until her death in 2006.

• Nerves & brain >> Motor Neurone Disease >> Carers >> Dick - Interview 42 >> Di's emotions became volatile a year before physical symptoms emerged and it caused some difficulties between them, so they saw a counsellor.

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 >> ALS- amyotrophic lateral sclerosis/MND aged 50-64 >> Phil - Interview 28 >> Little things can still trigger great sadness, especially thinking about his grandchildren, but it was worse at the beginning. Learning to accept it h

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 20-49 >> Michael - Interview 29 >> A year after diagnosis, some days he feels fine, but other days something frustrating can happen and he struggles more with his emotions.

Michael was diagnosed less than a year ago in 2006 after noticing weakness in his right arm. His arm weakness remains his main symptom, and it has got worse. Currently he is on sick leave from work.

• Nerves & brain >> Motor Neurone Disease >> Rarer forms - PLS (primary lateral sclerosis) >> 'Speedy' - Interview 19 >> She thinks she's emotionally quite tough, but every few days she has to cry. It's a combination of frustration, anxiety, loneliness and tiredness.

'Speedy' was diagnosed with primary lateral sclerosis (PLS) nearly 2 years ago (in 2005) after 2 years of increasing leg weakness. She now uses a wheelchair and a hand-operated car.

• Nerves & brain >> Motor Neurone Disease >> Rarer forms - PMA (progressive muscular atrophy) >> Jim - Interview 18 >> He describes the range of emotions he feels, including anxiety, sadness, grief and loneliness.

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 >> Rarer forms - familial/inherited >> Liz - Interview 39 >> People seem to feel awkward about reaching out to touch her hand or place something in it. The most helpful thing is when people anticipate her needs.

Liz was diagnosed with inherited form of MND in 2004. (Her father and uncle both had MND). Weakness in her legs progressed to her arms; she is now in a wheelchair. Her speech is unaffected.

• Nerves & brain >> Motor Neurone Disease >> Carers >> Dick - Interview 42 >> Di decided she had had enough so she stopped eating. They said a lovers' goodbye to each other. She wanted to be conscious, and she died peacefully at

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 >> ALS- amyotrophic lateral sclerosis/MND aged 50-64 >> Phil - Interview 28 >> It has brought him and his wife even closer together. They have both had to adjust to changing roles as he becomes more dependent on her.

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 >> Carers >> Dick - Interview 42 >> Caring for his wife made them closer than ever before, and they put aside trivia and disagreements. It was important to continue to have a sex life.

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 >> ALS- amyotrophic lateral sclerosis/MND aged 20-49 >> Michael - Interview 29 >> He and his wife have become closer, but sometimes they get frustrated. He admires how strong his wife has been for both of them.

Michael was diagnosed less than a year ago in 2006 after noticing weakness in his right arm. His arm weakness remains his main symptom, and it has got worse. Currently he is on sick leave from work.

• Nerves & brain >> Motor Neurone Disease >> Rarer forms - PMA (progressive muscular atrophy) >> Jim - Interview 18 >> Living with MND can bring out problems in a relationship, but he and his wife feel close enough to work things through without counselling.

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 >> Rarer forms - PMA (progressive muscular atrophy) >> Judith - Interview 12 >> Her husband finds it stressful caring for her and working. It has affected their relationship, but he'd find paid carers in their bedroom and bathroom

Judith was diagnosed with Progressive Muscular Atrophy form of MND two years ago, after consulting two neurologists. Now she uses a wheelchair and mobility scooter.

• Nerves & brain >> Motor Neurone Disease >> Rarer forms - PMA (progressive muscular atrophy) >> Pauline - Interview 30 >> She gets irritated that she cannot run the household and has to let her husband do it. He finds it hard to take on the role of carer, which he had nev

Pauline was diagnosed with PMA (progressive muscular atrophy) about 2 years ago (2005), after several years of leg weakness. She cannot walk far and uses a wheelchair, but is still able to work full-time.

• Nerves & brain >> Motor Neurone Disease >> Carers >> Harry - Interview 43 >> Sometimes he gets impatient waiting for his wife to say something with her Lightwriter, which he knows he shouldn't.

Harry's wife was diagnosed with bulbar onset MND two and a half years ago. She is now unable to speak. She finds swallowing very difficult, and has a PEG fitted.

• Nerves & brain >> Motor Neurone Disease >> Bulbar onset >> Mike - Interview 23 >> Their sex life has not been affected, but they miss talking to each other. It can be challenging being together so much and sometimes they need space.

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 65+ >> Derek - Interview 27 >> It saddens him that they can no longer have sex, but he tries to cuddle his wife and be as physical as he can.

Derek was diagnosed 5-6 years ago (2001 or 2002). His arms and legs are affected but he is still able to walk unaided round the house. Finds his memory for words is being affected.

• Nerves & brain >> Motor Neurone Disease >> ALS- amyotrophic lateral sclerosis/MND aged 20-49 >> Michael - Interview 29 >> They are still able to have a normal sex life. Bearing weight on his arms is difficult, but they find ways round it.

Michael was diagnosed less than a year ago in 2006 after noticing weakness in his right arm. His arm weakness remains his main symptom, and it has got worse. Currently he is on sick leave from work.

• Nerves & brain >> Motor Neurone Disease >> Rarer forms - familial/inherited >> Liz - Interview 39 >> She misses being able to show physical affection. Now she has learnt to ask people for a kiss or a hug.

Liz was diagnosed with inherited form of MND in 2004. (Her father and uncle both had MND). Weakness in her legs progressed to her arms; she is now in a wheelchair. Her speech is unaffected.

• Nerves & brain >> Motor Neurone Disease >> ALS- amyotrophic lateral sclerosis/MND aged 50-64 >> Marcelin - Interview 37 >> Marcelin never thought he'd have another relationship, but it means a lot to him that Tess wants to be with him and values him as he is now.

Marcelin was diagnosed over three years ago (in 2003), after several years of weakness in his arms, and later his legs. He now uses a wheelchair. His speech is unaffected. He continues to work full-time. (Partner Tess also interviewed, MND44).

• Nerves & brain >> Motor Neurone Disease >> Carers >> Tess - Interview 44 >> When Tess first met Marcelin she was worried about getting too close and afraid of losing him. Now she sometimes forgets he has MND.

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 >> Bulbar onset >> Sarah - Interview 21 >> Her husband couldn't cope and left. She thought no-one could find her attractive but she met someone who made her feel beautiful and happy again. [Voi

Sarah was diagnosed 7 years ago when 7 months pregnant with her second baby in 2000. Now she cannot use her arms or walk unaided, and her speech is affected, so she uses voice software to communicate.

• Nerves & brain >> Motor Neurone Disease >> Rarer forms - PLS (primary lateral sclerosis) >> 'Speedy' - Interview 19 >> She started an online relationship with a man with PLS. But since she's been using a wheelchair he's stopped writing. She thinks he's in denial about

'Speedy' was diagnosed with primary lateral sclerosis (PLS) nearly 2 years ago (in 2005) after 2 years of increasing leg weakness. She now uses a wheelchair and a hand-operated car.

• Nerves & brain >> Motor Neurone Disease >> ALS- amyotrophic lateral sclerosis/MND aged 50-64 >> Ken - Interview 15 >> He worries about the physical and emotional burden on his wife and how she will cope in future.

Ken was diagnosed with amyotrophic lateral sclerosis (ALS) form of MND 5 years ago (2002). His arm muscles were affected first, followed by his leg muscles. His speech is not affected and his condition has progressed more slowly than he originally expected.

• Nerves & brain >> Motor Neurone Disease >> Rarer forms - PLS (primary lateral sclerosis) >> Peter - Interview 20 >> Everyone has to find their own way of coping. They both feel it is important to maintain their own interests. [Peter cannot speak much].

Peter was diagnosed with primary lateral sclerosis (PLS) 8 years ago (1998). Symptoms progressed quickly at first, but now more slowly. His speech was severely affected, so he was interviewed through his wife Ann. His mobility is also affected.

• Nerves & brain >> Motor Neurone Disease >> Carers >> Bev - Interview 47 >> She advises other carers to try not to be obsessed with the condition, and to enjoy each day as much as possible. Learning bridge gave her a chance to

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 >> Rarer forms - familial/inherited >> Liz - Interview 39 >> She thought she wanted to stop work, but she was glad her boss persuaded her to keep doing project work. It's important for her husband to have the no

Liz was diagnosed with inherited form of MND in 2004. (Her father and uncle both had MND). Weakness in her legs progressed to her arms; she is now in a wheelchair. Her speech is unaffected.

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• Nerves & brain >> Motor Neurone Disease >> Relationships and sex >> Relationships and sex

Relationships and sex