Hello everyone
My husband was diagnosed a year ago with MND, limb onset. I've been browsing this forum almost daily for about six months and have had no end of information, reassurance and helpful tips both from current users and some who are sadly no longer with us. Finally feel able to join the conversation!
A year ago hubby was walking (albeit on crutches)... now he is in a power chair and can't walk or stand. Rapidly losing the use of his arms too. He can still talk and swallow, though we have to be careful with food now.
He's the most cheerful and optimistic person I know and though he knows what's ahead he refuses to borrow trouble. He does get down of course but he's so strong and is more concerned about me than himself. I think that this awful disease has brought out the best in him, he has depths of patience and resilience and is so caring towards other people. I hope that he can stay cheerful even when disability increases. We laugh frequently and have good times, and are just trying to live as normal a life as possible... not easy when nothing is normal anymore. Sometimes I still can't quite believe it.
We've had a lot of family visiting over the summer which has been good. Also we're lucky enough to live in an area with excellent care... we have an MND nurse who has been a lifeline and dealt with a lot of practical issues early on (application for house adaptations for example) which would have overwhelmed me. We've had a lot of help and support which has been and is wonderful.
My husband is without doubt my 'better half' - emotionally I've struggled a lot whereas he has been more level-headed and accepting. I'm naturally of a very private and introverted disposition and the constant barrage (so it feels) of professional people has been difficult to cope with at times and has made me anxious, but they are nearly all very sympathetic and sensitive. I'm a Christian and I believe that God has a purpose for good in this situation but that doesn't make it easy. My biggest source of strength is the Bible - reading it is touching base and I listen to sermons etc frequently - there's a lot of really helpful stuff out there from other Christians who have been through terrible times and come out the other side with a renewed strength and hope.
Hubby was in respite for a few hours today so took the dogs for a walk I haven't done for well over a year. I don't feel I need a break from him but we both benefit from a change of scene. Went through woodland, deliciously scented with dying leaves, out onto a high ridge overlooking a green basin of farmland set with neat toy buildings and looped through with a silver river. Got stared at by some handsome, glossy cows who chewed insolently. Down a velvety green slope between hawthorn trees with glowing berries and broom shrubs still popping their seeds. Saw two roe deer - fortunately the dogs didn't see them - and a buzzard swooping away. The horizon looking north is tipped with the first white of winter.
Hubby is refreshed too - possibly he needs a break from me now and then! But it's good to pick him up and get him home again.
Hope everyone is having a good day.
Best wishes
My husband was diagnosed a year ago with MND, limb onset. I've been browsing this forum almost daily for about six months and have had no end of information, reassurance and helpful tips both from current users and some who are sadly no longer with us. Finally feel able to join the conversation!
A year ago hubby was walking (albeit on crutches)... now he is in a power chair and can't walk or stand. Rapidly losing the use of his arms too. He can still talk and swallow, though we have to be careful with food now.
He's the most cheerful and optimistic person I know and though he knows what's ahead he refuses to borrow trouble. He does get down of course but he's so strong and is more concerned about me than himself. I think that this awful disease has brought out the best in him, he has depths of patience and resilience and is so caring towards other people. I hope that he can stay cheerful even when disability increases. We laugh frequently and have good times, and are just trying to live as normal a life as possible... not easy when nothing is normal anymore. Sometimes I still can't quite believe it.
We've had a lot of family visiting over the summer which has been good. Also we're lucky enough to live in an area with excellent care... we have an MND nurse who has been a lifeline and dealt with a lot of practical issues early on (application for house adaptations for example) which would have overwhelmed me. We've had a lot of help and support which has been and is wonderful.
My husband is without doubt my 'better half' - emotionally I've struggled a lot whereas he has been more level-headed and accepting. I'm naturally of a very private and introverted disposition and the constant barrage (so it feels) of professional people has been difficult to cope with at times and has made me anxious, but they are nearly all very sympathetic and sensitive. I'm a Christian and I believe that God has a purpose for good in this situation but that doesn't make it easy. My biggest source of strength is the Bible - reading it is touching base and I listen to sermons etc frequently - there's a lot of really helpful stuff out there from other Christians who have been through terrible times and come out the other side with a renewed strength and hope.
Hubby was in respite for a few hours today so took the dogs for a walk I haven't done for well over a year. I don't feel I need a break from him but we both benefit from a change of scene. Went through woodland, deliciously scented with dying leaves, out onto a high ridge overlooking a green basin of farmland set with neat toy buildings and looped through with a silver river. Got stared at by some handsome, glossy cows who chewed insolently. Down a velvety green slope between hawthorn trees with glowing berries and broom shrubs still popping their seeds. Saw two roe deer - fortunately the dogs didn't see them - and a buzzard swooping away. The horizon looking north is tipped with the first white of winter.
Hubby is refreshed too - possibly he needs a break from me now and then! But it's good to pick him up and get him home again.
Hope everyone is having a good day.
Best wishes
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