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Original poster

My husband may never walk again

47 replies

FloydWasACat · 27/06/2021 11:15

...or be able to use his arms and hands properly.

Diagnosis was confirmed the other day after he collapsed and has been in hospital ever since.
It is linked to spinal fluid leakage which has apparently been undetected for a long time.
He has been moved to a specialist hospital for physio but they don't think there is a lot they can do for him mobility-wise.

We have two children and they know the basics but nothing about the diagnosis yet.

The new hospital is over 70 miles away so I can probably only visit him once a week and he is going to be in for quite a while yet.

Our whole lives are changed for ever and I am heartbroken for him, the kids and to be honest me too.

We can't even cuddle because he just can't move.

I will be phoning the CAB next week to get practical advice about going forward and also speaking to the hospital about other things too, but my brain is all over the place.

I am barely sleeping and getting a bit tetchy with the kids, once I realise this i give us all 5 minutes peace but my god, if someone had told me six weeks ago that this would be happening i would have thought they were mad.

I'm not sure what I am hoping for with my post, I just feel like I need to let it out.

My Mum has been a stalwart with the kids and friends have been supportive.

How can my husband be in this situation? He is only 51 and the idea of what he is going through is just awful.

Any advice for anything or experiences would be greatly appreciated, my life feels like it is falling apart and I need all the help I can get.

Thanks

OP posts:

dottiedodah · 27/06/2021 13:30

Hi there ,I just couldnt read and run .I hope you get help from the agencies mentioned above . I would try to lean on your lovely Mum and friends .Really Sorry sending love and hugs xxx

Winnona · 27/06/2021 13:32

I forgot to say after a month, my husband was moved from neurology to a specialist rehab hospital for people with neurological conditions. He much preferred it there and accessed a lot (2 hours a weekday) of physio and OT. I hope the same happens for your DH.

Frownette · 27/06/2021 13:33

That must be so hard. Don't lose faith it might improve, early days

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Sportycustard · 27/06/2021 13:34

It's worth searching Google to see if there's a benevolent fund for his profession or industry. They can give financial grants and other help.

PM me if you wish as I have connections with a large number of them due to my job.

Chocciebiscuit · 27/06/2021 13:37

Just wanted to say that although u cannot cuddle at this time, when u are able to visit your presence will really mean everything to him and encouragement to do what he can with physio. Its very tough for you all but you will come through this. Technology that we have now really helps people complete everyday tasks, keep your mind occupied (I spent weeks in hospital recovering with incomplete SCI & truthfully my iphone, watching tiktok etc saved my sanity) and keeping in touch with family etc. In the rehab centre I was in they did say that they offered psychological support for family if needed.

Thelnebriati · 27/06/2021 13:39

I was just going to say ask at the hospital if there is a disability support group, they may be able to help with advice and expenses.

OMGisthisforreal · 27/06/2021 13:49

I am so very sorry that you have all received this devastating news.
Your best starting point, in my experience, is the hospital your DH is being transferred to. If it’s a centre of excellence for patients with this kind of condition it will already have support systems in place for the patients and their families with lots of advice and contact information. Any main NHS hospital would have this too.
It would too overwhelming to be bombarded with advice from here there and everywhere, yet I understand the desperate need to be proactive so I would urge caution at first then to seek help directly from sources which can give correct information and access to what you need.
You can ask the hospital first of all, then contact your local Social Adult Care services for initial advice and guidance once you know when he’ll be discharged and what care plan is proposed. At the moment there are not too many variables on what will be required.
Give yourself time to absorb this dreadful news and be kind to yourself.

ArabellaScott · 27/06/2021 13:59

I'm so sorry, OP. to you and your family.

soulandcats · 27/06/2021 14:29

I'm incredibly sorry to read this. Sending hugs and hope.

I know a little about CSF leaks, having been suffering from a similar condition for a number of years. Have the hospital managed to locate the site of the leak? There is a chance that if the leak is located and patched, mobility issues may reverse to a degree.

I also want to recommend a medical device called the Brainport Balance device. It's not available on the NHS, but can be a miracle device for those suffering with mobility issues, after effects of strokes, vestibular conditions, etc. I know because I personally bought one. If you want any more info, or to chat, feel free to PM.

Thelikelylass · 27/06/2021 15:55

There are some incredible stories of strength and will on here, I admire you all so much for sharing this. OP I hope these wonderful people on here give you some comfort and encouragement. It is threads like this when you truly see the very best of people.
Wishing you and your husband all the very best in the world OP.

Gothichouse40 · 27/06/2021 16:07

Im so very sorry to hear this. If there is any offer of counselling for yourself, husband and family, please do take it. Looks like a few people on here who know what they are talking about have offered an ear. They will have valid experience, much more than I can offer. Thinking off you and never give up, time will make a difference, even though people may think it's a cliche. It's the initial shock right now thats the worst.

QueenZoopla · 27/06/2021 16:16

Nothing helpful to say but what a devastating shock for you all 💐💐❤️💐💐

JeepersJuly · 27/06/2021 18:16

My partner had cauda equine. He was very lucky to recover so he can walk and has bowel function. There are ongoing bladder function issues and he will always have a weak back.

He's been referred to a specialist spinal hospital. I think there are about 8 or so in the country so please do ask for a referral if that hasn't happened. I think they have urology, renal-colorectal, psychotherapists, etc who specifically specialise in spine injuries and the multi-disciplinary nature of this works so much better. If you're only accessing community services, the disparate nature lacks focus and an holistic approach.

Really feel for you, OP. Such a frightening time but do access the support you need

Original poster

FloydWasACat · 27/06/2021 18:33

Hi there, sorry for not replying to everyone sooner. Just got back from my Mum's and dealing with hyper children. I will read through everyone's posts when things have settled down a bit.

Thank you so much for your replies, support and sharing experiences, it means a lot x

OP posts:

Worrysaboutalot · 27/06/2021 21:53

Sending positive thoughts to you and your husband

Timeforabiscuit · 30/06/2021 07:46

Hope you're doing OK op.

coodawoodashooda · 30/06/2021 07:50

I am so sorry. That is devastating news.

Dogatetheleftovers · 10/07/2021 00:54

I hope things have improved for your DH and that you are doing ok yourself. You’re in my thoughts.

Original poster

FloydWasACat · 10/07/2021 07:13

Hi, sorry that I haven't responded yet. It's all been a bit hectic and stressy. I am also trying to find a moment in the day to read through the thread properly when the kids aren't around in case I cry!

There is no improvement for DH as yet, keeping positive when I speak to him on the phone and trying to make general chit-chat about crap to distract him. How can life change so suddenly?

Must go now as I have work and have to get the kids up.

Thank you again for your thoughts and advice. I will get back to you soon, promise.

OP posts:

Shopaholic100 · 10/07/2021 08:29

Wishing you and your family all the best 💐. So sorry this has happened. You sound like an amazing, brave person.

Whilst not health related, I had a situation growing up where my whole life changed unexpectedly, so I can understand somewhat how you may be feeling. Things will get better even with bumps along the way. I hope you have supportive people who can help.

If you don’t mind op, when you get time could you share some of the symptoms your husband had prior to his diagnosis. Just in case it helps someone else spot concerning symptoms. Please don’t worry or feel under pressure if you don’t feel you can. I’m currently under investigation for a condition where too much spinal fluid may be causing pressure in my brain, so just wanted to know if there was anything I should be looking out for.

CarolNoE · 10/07/2021 09:08

Are you aware of a charity, Back Up Trust? For people affected by spinal injuries plus families and friends. Peer to peer support including spouses and children and practical advice. Good luck and best wishes OP. C x

Apandemicyousay · 10/07/2021 09:20

I’m so sorry to hear this. If he’s going to a specialist unit then you and he will get best care and specialist advice. On a practical front the CAB should be good- think about if you have critical illness policies and try and find out what sick pay he might have from work. Good luck over next few months

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