My husband may never walk again

[FloydWasACat]

...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

I didn't want to read and run, so I wish you strength for the way forward, a hug and

No advice, but I am sorry. Pease remember to look after yourself as well.

Sending deepest sympthies and strength to you, I don't know you but I know the whole of MN will be here to listen. At the moment you are probably in shock, just take information in bite size chunks. Are there any specialist groups for people with his condition? Can you (both) access counselling?

I'm sorry you've had such awful news.

It's very hard initially to comprehend how things will look going forward (my dad had a fall and broke 4 vertebrae aged 81 a couple of years ago so can only relate to that).

All I can really suggest is to live in the moment t as best you can.

Also, I went to college with a lad who suffered a spinal injury at 18 which had left him wheelchair bound and with limited use of his hands/arms.

By 23 he was living independently with the help of non-resident carers, driving a adapted vehicle and studying for a degree in events management.

I hope that might you give you some optimism about what might be possible going forward.

I've had major spinal issues OP, so drop me a PM if you want a chat.

In the meantime, offering a handhold and sending love to you, your husband and the rest of your family.

I think 6 weeks is the crash point, you can keep it together but not indefinitely.

Have you vented to anyone? Have you got friends who have gone through the life shit? They'll be the most helpful.

If your husband has social media, can he reach out to people on that? It helps if they have alternative sources of support rather than just you.

I don't have much advice, as a family we are in the trenches in a similar predicament - and right now I have so much anger I don't know what to do with - so take the tetchiness as an early warning sign of an innappropriate blow out at something minor, and know that it's perfectly normal.

That's an awful, awful shock for both of you

Obviously for now you're in survival mode and just need to look after yourself and your family minute by minute, and its fantastic that your mum and friends are there for you.

Later there are support groups and services you can access - there may be some glimmers of hope with assistive technology, adapted vehicles etc. combined with physical and later occupational therapy.

For now its normal to be all over the place and taking one day at a time, just getting through the first weeks until the new normal sinks in properly and you can think.

Its shatteringly awful for both of you, something the scale of which none of us can truly imagine unless we've been through it and I'm so sorry. You will get through it though and find a way - but not in the first few weeks

My father had a stroke around the same age. I was only a teenager and had to organise everything for him and be his voice in the hospital etc. Its exhausting but you just kind of put your head down and muddle through. They told me in the early days that he wouldn't survive , then that he would never walk. But he defied all the odds, he works part time , he drives and while he has clear impairments, he made a vast recovery but it was very slow. We are 16 years on. You need to try and rest and allow your brain to process what has happened. I didn't until nearly 18 months later when it just hit me.

Oh yes and the stages of grief stuff applies as with a bereavement - you've lost the life you had, and it takes a long time and all the phases of shock and disbelief, denial, anger and bargaining, and depression are completely normal and to be expected before acceptance and constructing a new life is really possible.

Definitely seek support from people who've been through similar when you're ready.

Hi OP. This happened to me. If you/your husband want to DM me any questions at any time, I’d be happy to answer. My leak wasn’t slow, it was fast, but I had damaged my spinal cord and lost around 90% of my CSF due to an undetected tear after an operation. I was told it was highly unlikely I would ever walk again.

I did learn to walk again, and struggled for a long time. I was so embarrassed about the bathroom options presented to me, I pulled myself out of the hospital bed and bum shuffled to the toilet - to the horror of my neurosurgeon. But that determination got me walking eventually. I get bad migraines. I can’t grip things well, especially on one side of my body (I invest in screen protectors like crazy!) I will never run again, I don’t drive due to muscle spasms that mean I could hit the accelerator, and I need to sit down a lot. But I am here, and no longer in the extreme pain a CSF leak comes with. I promise, while my world seemed pointless then, I’m so glad I battled through. I’ve had two children (I carried them myself!), have a great career and a high quality of life.

This a terrible shock for you all.
My daughter had a tear after spinal surgery, fortunately it was diagnosed fairly rapidly, she was like you sergeilavrov, through pure determination able to recover for a large part.
She had 5 months of daily physio & muscle rebuilding. everyone was amazed at her recovery.
Please don't give up believing just yet.

My dad had a life changing (for all of us) illness when we were growing up. My mother quickly went back to work full time, we moved house, life changed. However despite my Dad's illness, which hasn't got much worse, life has turned out quite well for everyone. It was at one point looking like a complete disaster.
You're in the worst stage atm, get as much help as you can, get him as much help as you can and just keep going xx

No practical advice OP, just these

Hugs to you all (((())))

What a shock! I’m sorry OP! Hugs being sent your way!

First of all there will be technologies and therapy to help him. My DH had his spine severed in an accident when he was a teenager, paralysed from the waist down, and it affected his hands, after 11 years in a wheel chair, he had 3 years of physical therapy at the age of 30 and miraculously enough can now walk again (he walks with an aid but still) he has 3 children with another on the way and lives a fairly normal life, his hands give him problems sometimes and he can’t do things he used to before but much better after therapy he had, there is hope!

Secondly OP, make sure there is someone to talk to, for you, just to unload from time to time and support you and your family. Life will change but you will adapt.

Hugs to you and your family. What a shock.

There really are no words. Certainly none that can change events.

For whatever it is worth, I am often reminded of the soldiers who return home with missing limbs, often utterly debilitating injuries and mental health issues, but somehow so many manage to start a new life... their families included. From that, there is hope. Mountains to climb, albeit slowly and will slips along the way. But hope remains.

You are not alone. The rest of the world will continue as if nothing has happened, but for you, your world is upside down and inside out. But again, not alone. Together, it's possible to make it through.

As I said, there really aren't appropriate words, but I hope an attempt offers a crumb of assurance.

I have no advice for you but I am sending my very best thoughts and wishes to you all as you negotiate a way forward through this.

CAB will point you in the direction of financial help/ disability benefits. Sorry to read what you are going through.

I don’t want this to come across bad

I had a devastating illness like your husband. Will a similar diagnosis. Sudden wheelchair. Legs didn’t work. Right side lost power

Though I was incredibly lucky in that although I spent the nect 11 years relearning things. It was transient. However I remember when it first happened. I was very young. It was awful. Truly traumatic. People don’t know how hard it is to suddenly lose all your power as such. I had to learn how to navigate stairs. How to eat. How to open doors. You lose your independence. All in 24 hrs almost.

I’m thinking of your husband. If you’d ever like to PM. I’m here my lovely.

oh OP, what a nightmare! I am so sorry for what has happened to your family. This is one of those situations we constantly warn about on this site, the unexpected, the thing you can't imagine could possibly happen that shifts everything in your life and makes everything so much harder.

CAB is a great place to start. Social media - Facebook groups in particular- can be amazing as well and they will be able to sign post you to what you need. You may need Social Services involvement for adaptations to your home but I am sure the hospital will help with that.

You will all need time to come to terms with it and adjust. Of course you are going to be grumpy and fed up. Don't beat yourself up about that. One day at a time, one foot in front of the other.

Did anyone at the hospital suggest a relevant patient organisation for you to speak with for support and guidance, OP - there will be people somewhere who know what you're going through and know what you need assistance with right now for you and the children.

I am very sorry to hear about your husband and I am sending you hugs & strength. This factsheet from the Sia charity website may be of use to you

www.spinal.co.uk/wp-content/uploads/2021/04/Emotional-Impact-of-Spinal-Cord-Injury-on-The-Family.pdf

What an awful shock, I have no advice but just didn't want to read and run.

Like another PP said though, please remember to be kind to yourself too, it's a big shock for you and it's ok t vent to a friend or family member if you need to, or to take some time to process it all.

Please think about contacting ASPIRE, spinal injured people and their families support each other.
www.aspire.org.uk

What a shock OP! This happened to me last year during the first lockdown. Over a few weeks he started getting weak, then falling over then not being able to move his arms either. It was terrifying, and the GP was beyond awful, even suggesting I try to get him into a taxi and present at A&E for a MRI if I was worried (during 1st lockdown). I eventually called 111 & he was taken by ambulance and admitted. They thought he had something called CIPD which is a problem with the nervous system, the first treatment they tried didn't work, luckily the second did and he has made a full recovery with little likelihood of reoccurrence,

AllI can say is take it day by day, things change very fast. The hospital drs were great and very knowledgeable, I wasn't allowed to visit the first 2 months due to the pandemic, but I would video call every day. The hospital arranged counselling for him, to cope with what they thought was a life changing illness, could this be something your husband would take up?

There are lots of support groups for information online, even on Facebook & some very knowledgeable people on them. DH's consultant would call me every week (DH agreed) & answer any questions I had.

Try not to get too ahead of yourself, it is hard, they had me measuring the house to see if hoists, wheelchairs etc would fit as no OT visits were taking place. In a way it was strangely calming, as I was doing something, and wanted him home. Luckily they weren't needed. Remember you are stronger than you know. PM me if you like.