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#1 sunflower

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Posted 26 February 2011 - 09:39 AM

Hi there- was wanting to hear from anyone out there who has had a partner suffer a massive stroke..feeling very alone and battling so many emotions. My husband is 48- he had a massive brainstem stroke nearly 4 weeks ago. It wasn't diagnosed in time- he had 6 weeks of migraine-like symptoms and collapses. Even on the day of the stroke, he was being treated for other things. When an MRI was finally performed the next day, the stroke had done massive damage.
He is starting to move his head, some small movements in fingers. I saw his toes moving today.
He is breathing with only a small amount of O2 support and has made it through a pneumonia which we thought was going to take him.
He cannot talk but has been crying alot. Some of the hosp staff get quite upset by this which i find really hard. When people comment on certain things like how much he is improving, he just cries so much. Its awful.
I hate everyone feeling so sorry for us!



Who's read this topic? (Total : 3) , barry, :vogue1,

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#2 barry

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Posted 26 February 2011 - 10:17 AM

hi sunflower and welcome to our group
i had a major stroke at the age of 47 i couldnt walk or even get out of bed my speech was really bad
i couldnt even get into or out of a bath to be honest there was not much i could do
5 years on i can do all those thing now and driving
it sounds like your hubby is depressed its normal after a stroke have you talked to your doctor about antidepressants
he will be saying to himself why me
are you getting any help with physio ?
and carers
have you read some of our stories they will give you some inspiration there is always a light at the end of a tunnel
in time he will improve keep telling him that its very early days yet read this story here it will give you some hope
do post back and let us all know how things are


#3 Damian

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Posted 26 February 2011 - 11:19 AM

Hello sunflower,

My name is Damian - I had stroke in August of last year after a Migraine.

You must look at the positives here, this is a long old road you are now both going down together.

I collapsed at the airport in August of last year and followed a similar path - I never cried as much in my life and constantly battle anxiety and depression; it's part of the stroke and a reaction to the trauma he has suffered.

He's got some movement - which is a start and things can build from there. I was fully paralysed on my left side - at 43 - also had to fight through pneumonia but now just walk unaided with a limp and have about 25% movement in my left arm - which is improving. He must have fought through the pneumonia (I found that hard and had fitness on my side)but now needs to fight through this.

On this website you will find a story about Kate Allet - she had a locked in stroke and celebrated her stroke's anniversary by going running. She's a marvel.

First things first - he has you and you care about him; be strong for him - you've lasted this long.With therapy he can improve; rehab centres get fully paralyzed people with serious spinal and head injuries walking again.I've seen a 90 year old man with Alzheimers make virtually a full recovery from stroke - your husband is younger and has age on his side to help him recover. Whatever is left of his Brain is waiting to take over if it can - not straight away but with training over time.

People can and do recover from stroke; it might take months/years but it can be done- see any improvements as steps forward. With stroke you can feel an irrational loss - he hasn't lost you, your children and his family or himself. He will have much to fight for - with good therapy he can become able to look after himself. get home and improve from there.

Make sure you look after yourself somewhere in here. it's only by you feeling good about yourself - and looking after yourself too -and you feeling positive for him that you can truly support him. Be his "rock", somehow and he'll have the best foundation to improve from. My wife kept me going - still does - and I'd not be here if it wasn't for her. You might be a superhero and just haven't realised it yet. My wife was and is one of God's angels.

There is also the book - the diving bell and the butterfly about a writer's battle with a brain stem stroke. It was made into a film and won an Oscar. If your husband it still in there somewhere, there is hope for you both - this is a long, hard road but not the end. Always look out for the positives, somehow- not easy but as long as somehow you can both find things in your life that please you and give you satisfaction, then there is a way forward for you both.

Both you and he need professional support around the current situation - insist on it, be it seeing counsellors or being told of success stories by the rehab team of people that they've seen battle through this.

Take care - this is probably the biggest challenge you could both have in your life. If you can get through this together, you can get through anything.

The emotional battle with stroke is harder than the physical recovery aspect, I promise you. I struggle so much with that still but have a beautiful, loving wife and six adorable children to fight for. Yes, Daddy's lost his arm and all his hobbies but this stroke ain't winning.See? Even now I severely battle against seeing the glass as half empty. I need to listen to my own advice.

One thing I can hopefully recommend is... ask for him to be tested for Hughes Syndrome - it can cause recurrent clots/strokes and is a cause of many strokes in people under 65. It causes Migraines too - but obviously not all Migraine sufferers have it.I have it and with treatment - no more strokes, hopefully.

Look after yourselves - there are lots of people here on the forum who can give you advice from both a carers and survivors perspective

Do come back and tell us how things are going, you must have hope - every little improvement is a big step along the way - it's still early days for your husband

Take care,

I feel better for writing this - it's helping me see who I still am, despite the awful trauma I've been through and the residual issues I still have

Damian

#4 Colin

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Posted 26 February 2011 - 11:25 AM

Hi Sunflower and welcome to our forum,,,,,,,,

4 weeks is a very short time in terms of recovery for any 'brain trauma' and maybe you and your husband won't notice any significant changes,,,,, but over a period of time there will be changes and improvements,,,,,,, but as I said at the start of my post it's very early days yet,,,,,
Crying is a very emotional outlet and release from pent up feelings of despair and as Barry has said the onset of depression,,,, which unfortunately the majority of survivors suffer from after the devastation from being a normal happy go lucky person ,,,to wham,,,,gone,,,,,,it's also very similar to a bereavement,,,,,so there is grieving going on in your husbands thought processes as well.

If you have time ,,,,please read some of the stories in the story section ,,,including mine,,,,and you will see how we have coped and used differrent strategies on our long road of recovery,,,

Please don't feel isolated,,,,, your gp and consultants should take time to discuss your husbands rehab process and health care plan.

What city are you in or near?
North or South Island?

Please take care and don't be afraid to ask any questions ,,no matter how trivial they may seem,,,,,The medical fraternity are there to answer and look after your husband's wellbeing.

Colin

#5 Tina

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Posted 26 February 2011 - 11:32 AM

Hi Sunflower :) a very warm welcome to you...cant add much more as Barry, Damian and Colin have all said it so well.

It is the emotional side that is the hardest...i found that and still do. Wishing you and your husband all the best and look forward to hearing how you are both getting on.

Take care
Love Tina xx

#6 sunflower

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Posted 26 February 2011 - 10:21 PM

Hi- me again- i don't know how to reply to my post below...
just wanted to say THANKYOU for the support- i don't know if i am strong enough for this but have no choice. His medical team are new to this and his consultant didn't want to feed him 2 weeks ago..he said he felt the chest infection should"take him". I understand where he was coming from, but we coudln't give up that early in the piece.
As you all say, the grieving for what is lost is so hard.
Love to you all :)Mary

#7 Damian

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Posted 26 February 2011 - 11:25 PM

Gosh, that's almost unbelievable - I do believe you of course.Doctors are sworn to save people's lives to the best of their ability -Letting someone die compassionately when they have a chance of recovering is not compassionate and will hardly give you both confidence for the future,poor you.

Remember that he needs to focus on what he has truly lost - not you, his family and friends and not himself. He's beaten pneumonia and has a long way still to go with his recovery..and many happy years ahead of him.It only dawned on me in rehab how lucky I'd been - I could have had 3 or 4 strokes before now, not just one - and there I was with people paralysed from their necks down or MS. I had a clot in my brain - it could have been in my heart, game over. I had pneumonia after a Pulmonary embolism - that's a killer in itself. There aren't many times in life when you stare death in the eye and get to say "not yet". This is when you find out what you are made of; he's clearly made of the right stuff so far and needs to keep going for you, him,your family. Keep seeing every small improvement as a sign of the scales tipping in your favour - he's bound to be distressed at the moment and the stroke may be making him fear the worst, when the worst may not happen or is unlikely. If he is strong for you, you can be strong for him. It's a virtuous circle, as they say.


I read the story of Alistair Urqhart while in hospital - A Prisoner of war in World War II. I marvelled at what he Endured- he was even nuked at Nagasaki - and kept himself going by focussing on the happy days that were yet to come.

May God (or whatever you believe) bless you both. Make a list with him of what he still has in his life and make another list of how things could be worse. I did that, still do somedays and read it every day during my months in hospital.

Now is when you will start to find out how the most amazing thing in the universe - the Human brain, with its 100 billion neurons that can reconfigure themselves are waiting to get him better and better and better; it's all they know what to do. Have faith; the Human Spirit may equally be the strongest thing in the Universe. With hope, you have a chance. Without it, the Depression and Stroke will win. You cannot let that happen. Your husband needs to fight so he can show and tell that consultant he was wrong - and perhaps save someone else from a misguided "act of compassion" in future.

I hope this is helping you, do take care

Damian

#8 Colin

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Posted 27 February 2011 - 08:45 AM

Hi mary

I'm sorry to hear about hubby's medical team being new to this??

Where have they been in all their medical training??

Chest ,Heart and Stroke are the top 3 killers of the human race and I'm sorry to say if I were in your position I would get hubby to hell out of there and to an establishment that knows the difference between life,,death and aftercare,,,because that is what we are talking here.

I had serious trauma at one point and also pneumonia from a clot in the heart,,,, and if it hadn't been for the dedicated team in Intensive Care Unit,,,, I wouldn't be here to tell the tale.

The country you are in has more than one hospital,,,,,and they must have dedicated stroke units,,,,if you want to move forward then you need the best aftercare money can buy.
Use the internet for information as to what is available and act on it if you can.
No matter how strong or resilient we all are at times of illness and despair,,, we also need someone with their finger on the pulse that knows what they are doing.

I hope this doesn't offend you but what you have said above about his medical welfare team, does not inspire me with confidence for looking after a hamster never mind a fellow survivor.

Please take care

Colin

#9 brian

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Posted 27 February 2011 - 10:24 AM

Hi Sunflower,

That is so hard to take in that a medical team is new to this and how to help you, your husband and family that is what they are there for.

As Colin said stroke is the third biggest killer in the world no matter what country your from, and the stroke team should be experts in the illness and how to treat it with all its complications and there are many as well know, this should also be the case in the community. No-one has any idea how we the survivor will fight this brain trauma that has hit us, they are not us! We can and have astounded them at times, survivors stories have told us that.

As Colin has said get him moved to a dedicated hyper acute stroke unit, you do have them in the New Zealand!!

Which area of the New Zealand are you from?

That team your on about after all you have said, well they would not treat me anymore, as they are not fit for purpose...Where is the consultant in all this?

Please take care and sending a big hug to you all


#10 barry

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Posted 27 February 2011 - 10:26 AM

hi again it sounds like your hubbys medical team dont have a clue they are paid good money
here in the uk stroke was one of our major problems our health organizations were wondering why so many people were having a stroke so they came out with a fast campaign
now all our hospitals have to act fast, scans test tpa it seem to be working
i know when i went to hospital with a stroke they left me on a trolley for hours
my best friend got very concerned he got hold of the doctor and said what are you doing about my friend oh he said waiting for a scan
my mate said that was over 2 hours ago oh he said the porter is on his way
i dont think he had a clue just like yours
yes i was put on a stroke unit but now its all different they have to act fast just like you have to




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