Hello all,

[MartinB]

I’m Martin, a husband, father, grandfather and more recently a full time carer to my wife Caroline who was diagnosed with ALS in September 2020. Every bit of advice and personal experiences is welcome as we get to grips with this cruel disease.

[Barry52]

Welcome Martin.

I assume your wife has the necessary support network set up? Personal experiences are varied as this condition can vary in every person both in rate of progression and symptom types. You can be sure of an answer to any questions you post whether it relates to care or treatment.

Best wishes,
Barry

[Ellie]

Hello Martin and a warm welcome to you and to your darling Caroline - lovely profile pic, btw.

If you feel up to it, tell us how you're both doing, or leave it until you feel ready.

Love Ellie.

[Deb]

Hello Martin and a warm welcome to the form from me .

The forum is a good place for friendship, support and advice from people who really understand. i hope you have good professional support and love from friends and family.

It can all seem totally overwhelming at times so its good you've found us.
Take care of yourself as well as caring for Caroline,
Love Debbie x

[MartinB]

Welcome Martin.

I assume your wife has the necessary support network set up? Personal experiences are varied as this condition can vary in every person both in rate of progression and symptom types. You can be sure of an answer to any questions you post whether it relates to care or treatment.

Best wishes,
Barry

Hi Barry, we are lucky that Somerset has a very proactive support network. The OT’s physio’s and specialist nurses are communicating with each other. Also, I was recently contacted by our local MNDA. Caroline spent the last 20 years as a carer so this such a cruel blow to her. We are taking every day as it comes.

[MartinB]

Hello Martin and a warm welcome to you and to your darling Caroline - lovely profile pic, btw.

If you feel up to it, tell us how you're both doing, or leave it until you feel ready.

Love Ellie.

Hi Ellie, thank you for your warm welcome. How are we doing? Both of us are ‘knackered’ all the time, our nemesis is night times, Caroline is very uncomfortable in bed and needs to be turned regularly. She has little use of her upper arms and legs so what ever position I put her in is the position she stays in until I move her. As her carer I do everything for her and keep my full time job ( obviously working from home). Our dining room is now our bedroom.

[Gordan1111]

Hello Martin. It is a cruel blow. Terribly cruel.

[Bowler]

I’m Martin, a husband, father, grandfather and more recently a full time carer to my wife Caroline who was diagnosed with ALS in September 2020. Every bit of advice and personal experiences is welcome as we get to grips with this cruel disease.

Hello Martin let me add my warm welcome too.

I too cared singlehanded for my wife throughout her 5 year journey but thankfully I was not trying to hold down a full time job at the same time. We were the same with nights i.e turning every few hours every night. Through this forum I have now learnt that we probably could have avoided much of this if we had persevered trying to find the right air mattress and meds. So at this stage my single piece of advice is don’t be afraid of trying different combinations to try and give yourself a reasonable nights sleep. In the meantime if you can, try and get a 20min power nap in the middle of the day. It worked wonders for me.

you will never be alone on here

Take care Phil

[Ellie]

...our nemesis is night times, Caroline is very uncomfortable in bed and needs to be turned regularly.

Sleep is so important for both of you, physically and mentally, and the key to a good sleep for Caroline is a comfortable mattress so she doesn't wake in discomfort and needing to be repositioned.

Ask her community nurse or OT about getting a good mattress, if she already has a mattress, it clearly doesn't suit her needs. There are all types of mattresses out there but it's best if Caroline explains to a nurse (etc.) exactly what it is, and where it is, which makes her feel the need to turn over. Different mattress types offer different levels of pressure relief. For example, I have no functional limbs and sleep on my back, on an alternating air mattress, without an urge to be repositioned as I am very comfortable.

It's good to hear that she has good support and I hope neither of you have any qualms in asking for help - unfortunately it's the squeaky wheel which gets oiled first.

I hope you get some quality 'me time', Martin, your health and wellbeing are equally important.

Love Ellie.

[Music man's wife]

Hello Martin, sorry to hear you are in this situation.
Apply for Continuing Health Care funding now. We did this through the district nurses. It gives us freedom to get in carers when we need them.
Hubby has a profiling bed with a ripple mattress, he finds this comfortable and I only turn him 2/3 times a night. He also takes lorazepam which settles him.
Has anyone mentioned what our health authority term environmental control. Though a touch pad hubby can now do all sorts, call for help, switch lights on and off. Next week he is having his bed altered so that can be brought under control.
Possibly the best help we have now is a PA for hubby, five hours daily for 5 days a week. They get on really well and I have some freedom back.
Wishing you both the very best.

[MartinB]

Thanks, we have the environmental team coming on Wednesday for an assessment

[denise]

hi martin and caroline

i am a carer for my husband stephen. he was diagnosed with als 2 years ago. there are lovely people on here so feel free to ask questions because someone will have an answer.

love and hugs
denise

[Lynne K]

Hi Martin, lovely picture of you and Caroline. Good luck with the up and coming assessment from the environmental team.

About sleeping: I’m getting an adjustable bed in a couple of weeks. I suffer from a long standing back and hip problem and MND has made these much worse. I struggle to get enough sleep because of pain. I haven’t yet tried an alternating air mattress despite Ellie’s kind recommendation. I’m starting off with a regular foam mattress and will change it if necessary. I’m hoping that the tilting facility will bring relief enough.

Good luck for Caroline and you finding a solution to her sleep issues.

I also recommend that you have both a day time power nap and some ‘me time.’ Keeping yourself in tip top condition both physically and mentally is important.

I’m glad that you’ve found this forum. It’s a wonderful resource for both information and support. Love Lynne

[Jo jo]

Welcome to the forum Martin. It is a very cruel disease and my heart goes out to you and Your wife. I am the main carer for my partner Daren and the forum has been a life line for me. Always someone to talk to or seek advice. No question is a stupid question and people are so kind and brave. I hope you get good support for you both. Xx

[matthew55]

Hello Martin. I wish I hadn't met you 😉 But as your here remember one thing. There is NO such thing as a Stupid Question. 👍😁