Motor neurone disease

My husband is 53 and has recently been diagnosed with motor neurone disease after falling over since June he has limb weakness in legs and hands and finding day to day life more and more difficult. He has now had to give up work he is becoming more upset and down and I just don’t know what to say to him to help as when he gets upset I do to anyone who has had a partner with this if you have any advice on how to cope with all this it would be appreciated as finding things really hard thank you

hi helly im sorry to hear of your husband diagnosis my husband had motor neurone disease and i feel all your pain and anguish . Darrell fell a few times and we had to fight for a diagnosis it started that his right foot would drop when he walked and he fell alot then he lost the use in his leg and so on and so on im sure you have done enough reading up on it . we didnt have any carers in myself and my son who still lives at home were Darrell carers all the way through Darrells and our wishes .. i am not a specialist but living with someone who has motor neurone is hard but you will and can get through it with support .keep your husband off the internet looking at different stages Darrell and myself told the specialist we didnt want to know anything and i think that was a good choice. have you been giiven an MND nurse who will visit every 6 weeks to see if you need anything ? you should of...you need to push to get adaptatins done ie grab rails bathing aids you can get grants for a wetroom hoists try and make sure your future proof your home . all your husband needs is your love and support he will have days when he feels so down try and get him out as much as possible if its possible for you to go on holiday do it its one thing we regret Haven have adapted caravans . my husband never lost his sense of humour right till the end and that got us through alot of bad days .. mnd can grab a hold quickly thats why ive said make your home future proof .. i would also advice you to do a power of attorney you can do this over the internet on the gov website YOU will need to be your husbands power of attorney for health and welfare and also power of attorney for property and finance try and do it as soon as possible ... i am always here if you need to talk about anything if you are having a bad day message me or if you need to ask a question i will do my best to answer it for you ... laugh and smile as much as you can it got us through every day x my love to you your husband and your family love jo xx

helly sane as you when Darrell got upset so did i its just a copying mechanism let it out dont bottle it up.. if you need hep with things ask for it might be worth speaking to your husbands gp for antidepressants has he been put on the only mnd dru Rizuzol think thats how its spelt xx love jo xx

Thank you jo yea I’ve already read to much I think yes his right foot has dropped and his right hand is weak he can’t do much with it now he seems to be progressing quickly it’s all very scary isn’t it . He seen dieticians who told us all about feeding tube and tht it needs to go in early etc I’m dreading him losing his speech but apparently you can get a voice machine . He lost all strength in his arms when he falls he can’t get up as can’t push himself up he can still pull up though if there something about although it takes all his strength. He gets very frustrated and shouts I know he Dosent mean it but it upsets me . We have had hospital bed delivered now and bath lift . We are still waiting on them putting other bits in house hopefully they will sort tht to it’s all such a big change to life. He always been there for me as I have anxiety panic etc so feels so odd me now having to do all the things he used to xx

hi helly this is a mirror image of wjat my life was like yes get the feeding tibe sone you can stay in the hpspital with him i made sure i did he might never have to use the feeding tube its only thete as a back up darrells never used his for food just any meds that didnt taste nice x your husband might mot loose his speach alot dont Darrell didnt ... stay oaitive and make the most of every day of you can get out go out x have you got any support at all ... the worse thong you can fo is look on the internet it will only give worst case Scenarios so stay off if you can xx if ypu need to ask me anything via a private message your more than welcome if you want my number thats fine aswell xx take care xx love jo x

Yes hun tht and muscle relaxers for the cramp and pain killers. It’s just all to much some days are ok some days are over whelming hope u are ok x

here if you need to ask anything ill do my best xx love jo

In reply to helly

My husband had motor neurone disease so I do know what you are going through. My heart goes out to you both. The MND Connect helpline is a good source of contact and support on 08088026262 or mndconnect@mndassociation.org It is hard but if you both try to keep positive and make the most of what is available it can help. Easier said than done!! Your husband is still of working age and must be devastating for him. It is a cruel disease which tests you at evety turn. Try to encorage him to look at what he can do not what he can't do. I know it's easier said than done! It's a journey which you cannot avoid. Thinking of you. Sandra x

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