What next

[Hils0912]

Good morning,

After various tests and re-tests (firstly from Stroke clinic then an eventual referral to Neurology) we got told on Monday that my husband has MND. I have watched him slowly get worse over the past months. Firstly from his right foot not going on to the brake pedal whilst driving to him having to give up driving completely, To the falls when he tries to do anything at all.

We did have a discussion a few months ago (after his first stay in hospital for tests) that we thought it could be MND, but had to wait and see and hope that we were wrong. We received a copy of the letter sent to the GP which did say it was probably ALS, so if we hadn't already come to the conclusion it may have come as a shock. At his last outpatients appointment the consultant wanted to admit him to do the last nerve conduction tests, so that they would get the results and put the MND team in place. So this has now been done, and I am hoping he will be home again either today or tomorrow (he has an appointment with Respiratory today.

So the care will begin again today/tomorrow after having a couple of weeks off, I have been able to go out when I needed to without worrying. At times I feel overwhelmed. I have gone from being wife and worker, to carer. We are still waiting for the Council to pull their finger out we need a ramp for the front door, as we can't get his wheelchair in and out. So he will sit in his arm chair and I don't want him getting depressed. He feels quiet happy doing this, but I tend to get stressed out, as I know there must be things he wants to do.

[shelly21]

Hi and I'm sorry you have found yourself here. But you will get help and advise. Loads of us will listen to your fears and rants.

Firstly I am glad they are running all the important tests whilst your husband is in hospital. At least you know what is what.

Secondly please contact the mnd connect team. They helped me get a grant for a low threshold door and a ramp. Re Council i think we have to accept long waits. For us it was a no go re means tests etc. My advice is to prioritise whats most important. If its getting out of the house then the ramp etc.

A good saying with mnd is stay one step ahead.

I totally understand the wife into carer role. Its horrid. I'm the patient. But after a year in I am sourcing respite freelance carers so my husband can get out and have quality time. You will need time out.

Lastly have you made contact with the hospice? I know its sounds shocking but my hospice offer me day stay. Its a neuro group or ladies group. My husband drops me off and I'm cared for and husband gets a few hours break.

I'm sorry to bombard you but just to give my experience in how my first challenges were overcome. X

[denise]

Hi Hils0912
I'm also a carer for my husband. Like you I thought mnd before diagnosis so it wasn't a complete shock. Its difficult dealing with the now and worrying about the future. We are in a situation where we are in a property that isn't suitable and can no longer get out. I also feel the stress of worrying that my husband should be out there enjoying himself not stuck inside. I've come to the conclusion its worrying me more than him.

At least you have found us. We have a lot of people here who can share their knowledge. You should have a local mnd carers group which might be online or meet up somewhere. This is great for talking things through and finding out things that you might not know otherwise.

We are all here for you both.

Love and hugs
Denise xxx

[Ellie]

Hils0912 A warm welcome to the forum Hils, sorry about your husband's diagnosis...

You'll find this a rather jolly place to hang out and, even when difficult topics are discussed, it's not done in a doom & gloom manner, but with pragmatism and sensitivity. That said, the forum is a safe and welcoming place for carers and people with an MND to moan, sob and berate, as much as it is to laugh, joke and to take part in quizes.

Love Ellie xx

[Hils0912]

Thank you all for your replies,

The hospital has just been on the phone. They are discharging him today (just getting his meds ready), but they wanted to know if I was ok with that. I did say that nothing had changed since he was admitted, to how he was before he went in, so why would I not be ok with that. She really just wanted to check with me.

I haven't been in touch with anyone apart from the Council as they had put Carers in place (twice a day to start with) and they have provided OT, who in turn organised a surveyor and architect to come and have a look at the property and see what they could do. We are still waiting for plans to be drawn up prior to planning permission, despite this being done as urgent.

I think that once I get him home and family and friends start to come round, when we start to tell them the diagnosis, and seeing them handle this will be one of the hardest parts.

Thanks for the welcome

Hilary
xxx

[shelly21]

It is difficult telling your loved ones something that will upset them.
maybe if you can spend the next few days chatting and letting the shock settle a little.

Re the carers that is really good. There is a waterfall cascade of appointments that will come your way. It does settle down. Maybe buy a notebook and for each department jot down a telephone number or even better an email address.

If you have any questions please ask away.

X

[MMG]

Hi

Sorry you are here, I am a carer for my husband and I think it took months after diagnosis for us to climb out of a deep dark hole. The magnitude of the diagnosis is overwhelming. We found out when my husband was still fit and mobile and he had what was suspected carpal tunnel and compressed nerves.

We have been under the care of the respiratory team at Stoke and they are amazing. We go to the outreach clinic at Stafford as closer to our home. We have recently been transferred to the neurologist at Stoke from Birmingham and have seen him once in May and due next week.

We received the diagnosis from our local hospital New Cross who referred us to all the other support services ( you will initially be bombarded by all sorts of professionals).


We saw the hospice early on and they provided a lot of reassurance which was needed. We used to see them as a place to go to die, but they are all about helping you to live with a life limiting illness.

We have been very well looked after, and have a great support team around us. I was initially the sole carer but went down the direct payment route with the council and have employed PA's which means that i have been able to return to work part time which provides some normality and reintroduces the "wife" role rather than just a carer. I am still the main carer but having good reliable support makes such a positive difference.

Following diagnosis I read everything I could find about MND and scared myself silly. I wanted to be prepared for all scenarios. The one take home bit of advice that I would give is that progression is different in everybody. So don't worry about potential symptoms that might happen, because they might not. I wish I had spent less time initially worrying about what might happen.

I thought that I would never cope with caring for a PEG, or using a hoist, or pushing a wheelchair - but you just do. It happens in stages, not all at once so you just get on with it.

Sending warm thoughts and a hug.

Our worst experience has been with the council so good luck.

[Claireflo]

Sorry to hear about your husbands condition and diagnosis, it's a really difficult time. Hopefully support will be available following diagnosis, it's good that he has a respiratory appointment

I hope the council can help quickly regarding the ramp, is he in a manual or power chair? My dad (who was diagnosed may 2021 with bulbar onset) was a very active person (boxing, table tennis, running, cycling etc) is now limited in terms of activity although still mobile. I struggle with him being limited to the house and his garden as he's always been so active however he regularly tells me that he's OK as he's more comfortable at home. So I do think that we can be more concerned about the things we want our loved ones to still be able to do when often they have reached a place of acceptance.

You'll find there's a lot of knowledge and experience that people are willing to share along with support and some banter along the way.

[Hils0912]

Good morning,

Sorry for not replying sooner.

Husband was discharged from hospital last night. We spent some quality time together, I went up to bed (he has a bed downstairs now so I left him to get settled). The next thing I know I hear him shouting me. He had tried to walk to his commode and on his way back his legs had given out so he was propped up with his chin on the zimmer frame. I managed to stop him falling while he pressed for Careline who luckily were just round the corner. Finally got him settled about 1.00am and I am wide awake by this time. So it's been a great start having him home.

I think I have read too much (if there is such a thing) and scared myself as to what there is to come, instead of taking it one day at a time. Husband has always been so laid back that the doctors and nurses kept having to check that he was ok. As he said to them, we had come to this conclusion a while ago, so had done the tears/anger etc at that point, but still remained hopeful that it could be something else.

He currently has a manual wheel chair, but while he was in hospital they did say he needed a power chair and he had a call from the provider who are coming out next Friday to sort that out for him.

Husband was never active, unless you can class shooting your mouth off, jumping to conclusions and running round in circles to that mix, but he always liked to go supermarket shopping (I know strange)! and it took me until earlier this year to talk him into doing the shopping online.

Thanks for listening to my moans

Hilary xx

[Heather R]

Hils0912 welcome, and just sorry you’ve had such an awful first night with him home, you must be tired. Yes there’s so much to read about and learn, but I know I convinced myself at diagnosis that I was going to get certain symptoms which I still haven’t got 2years on, and may never get. So although some ahead planning may be needed, one step at a time I think is good advice, and enough to cope with anyway. MND is so unpredictable. So all the best, and take care of yourself as much as you can, and let us know how you’re going on . 🤞xx

[Hope]

Hils0912 I am sorry you find yourself here but welcome. This is a good place for help and support. The first few months after diagnosis are awful. It is a lot to take in but things do settle after a while. As Heather R says, I too convinced myself I would have certain symptoms by now. There is no predictability with MND but I do think it is important to be aware of what may happen.

xx

[Hils0912]

Thank you for your kind words.

I am hoping for a better night. I have made him sit with his personal alarm on all day and every time he moves I am on my guard just waiting for his legs to buckle again. He did admit that his legs are worse now than they were a couple of weeks ago. He is getting frustrated as well as his head keeps saying you can do it, but his body is saying not a chance!.

We have had some tears today as his youngest niece came round and he broke the news to her, but he wanted to tell her and not let her hear it from someone else.

Hilary xxx

[Ellie]

Hils0912 You're right Hilary: it is awfully scary looking to the future but to some degree, 'somebody' needs to have half an eye open to see what's around the corner, so as not to be caught short 😬

With any luck, that 'somebody' is the MND Nurse, his OT or maybe GP - time will tell. xx

[MMG]

I think the acceptance that they can't do the simple things that they previously could is very hard - mentally more than physically.

My husband had a series of falls in one week which led to him making the decision that stairs were no longer possible and we had to use a Molift to get him up and roll him around the house rather than risk his balance going again and causing injury.

Frustratingly his legs were still strong enough to take his weight, but he just couldn't stay up. Each progression is upsetting, it signals a bit more loss. But however stubborn or determined to continue trying to walk, at some point have to accept that the risk outweighs the ability to continue trying.

Each progression is a sad day!! And a fresh level of upset and possibly another crisis. But then a new normal is established until the next progression. xxxx

[Ken]

You will be contacted by many people who are there to help. It can be a bit overwhelming. Keep a notebook and record the gist of all conversations you have. Record their name and contact details. Always end the conversations with, "so what happens next?" Although difficult, try to maintain a positive mental attitude.....these people have tough jobs and my experience is they genuinely want to help but they don't have magic wands. You get more out of people if you work with them. Good luck.