Progress

[Waitingfor]

Hi all,

An update following my partners cardiac arrest in December-he’s nearly halfway through his 3 month stay in neuro rehab and is now on a level 6 diet. I brought in foods on Friday and it was the first time he was able to feed himself, taking crisps and putting them in his mouth. He really enjoyed it and was vocal about that, and it looks as if he will move up to level 7 very soon.

He’s getting frustrated at times and has said “I feel like I’m losing my mind”. However, he is still really keen to keep working, but struggles with his issues especially around short term memory. His vocabulary is definitely expanding and I think he is gaining an increased understanding of what’s happened. I think his vision is improving somewhat and he has purposeful movement in his left arm and leg, though he is yet to stand up.

As for me, I am positive and hopeful but I am wondering if anyone has any guidance on the recovery process and experience of how long things can take? I am prepared for whatever, but of course I would love for him to be able to have a greater range of abilities/some independence eventually and am wondering if anyone has any guidance on this.

Thanks xxxx

[absa]

i would be adamant about getting your partner any type of pharmaceutical intervention possible. Physicians will typically end treatment with "well, he can't quite tie his shoes, but he can wipe his own ass, and take a shower without drowning, so he's fine to be discharged".

not tremendously helpful for someone who wants to resume an independent existence. In my own research, i have come across Dihexa, FG-Loop peptide, growth hormone (HGH), and viagra as possible chemical agents that will help the brain recover and repair itself.

[Waitingfor in reply to absa]

Thanks absa. I haven’t had any discussions at all about pharmaceutical interventions and hadn’t even considered the use of medications for neuro recovery, I’ve just been thinking of therapies. I think this may be something that I will keep in mind for later down the line, after we have (hopefully) seen much more recovery.

[cat3]

Hi Waitingfor. Your partner sounds to be progressing at a perfectly acceptable pace. There are widely differing time frames for coming through hypoxia or (any brain injury) depending on the severity of the injury, the fitness/age of the patient and any procedures involved.

For me, after a spontaneous brain haemorrhage, it was around 5 weeks before I stopped confabulating and hallucinating (v. weird for my family) and could hold a logical conversation. At 8 weeks I took my first steps and at 10 weeks I took a supervised shower.

I had inhouse rehab for a couple of weeks and then discharged with a three months follow up arranged.

The loss of mobility and the life changing after-effects (impaired memory & dexterity, emotional lability, mobility and fatigue issues) were a massive learning curve, but after the first two years I started getting the hang of accepting (what's commonly termed here) 'The new me'. Your man has progressed really well so may or may not be similarly affected but there will be some changes.

The frustration is a normal, healthy response to sudden incapacities, especially for someone previously so active, but your partner might benefit from CBT therapy to provide an outlet for his frustration and to get realistic pointers towards compromise. It'll be tough going for a while, but many, many people with dynamic backgrounds have come to terms by adopting alternative lifestyles ......eventually. Hope this gives some idea of the possibilities...

Keep us updated m'dear. All best wishes, Cat x

[Waitingfor in reply to cat3]

Thanks so much Cat, that’s such a helpful response. I think it’s the uncertainty that makes it so hard to deal with-nobody seems to have any idea what will happen and how he will be. Plus, though all the healthcare professionals have been fantastic, it seems that you often get a somewhat negative response when discussing on a clinical level.

He’s such a dedicated and committed person, I am truly inspired by his will to keep going, even when it’s really hard for him. He’s taken to shouting “ouch”, not due to pain, but to get some frustration and energy released. I think this is actually somewhat of a good coping technique in the short term and moving forward will look into CBT. Xx

[cat3 in reply to Waitingfor]

Bearing in mind the uniqueness of every person and every brain it isn't surprising that there's no 'typical' brain injury to measure progress by. My family were offered a fairly bleak prognosis initially and couldn't get the consultant to speculate on the eventual outcome.

They couldn't accept that he really didn't know, and so suspected he was being deliberately evasive. But he sat them down one day and explained the impossibility of a prediction owing to the complexities involved and that when I "Turned a corner" it would be obvious to everyone.

After I turned the corner he told them that improvements would probably follow in a "One step forwards - two steps back" fashion for an indeterminate period. So, like you m'love, my family played the waiting and guessing game ....and it's the same story for everyone where brain related injuries are concerned, sadly.

From what you've described your partner has progressed really well, but it won't ever feel that way for him. The hardest struggle is acceptance of the changes, but for now it has to be tackled one day at a time !

All my best, xx

[sospan in reply to Waitingfor]

One of the hardest things for both patients and families is the unpredictability of head injury recovery. If you break your arm you know you will be in plaster for a few weeks, sore for a bit longer and more than likely recover with nothing to show..

Head injuries follow very different paths and quite often you get over one problem for another to appear. Not that it wasn't there it was that other symptoms seemed to hide it.

Time is the greatest healer, it may seem like an eternity for improvement to take place but they do come. Sometimes, fixing one thing improves another. Even using something like a tablet computer with pictures of places you visited or happy occasions can jump starts the memory. What you may find is that he will start to be able to move and select the images himself.

Families often get worried about the patients sleeping a lot or appearing lazy. This is part of the brains "repair" process and where it moves todays memories into longer term storage. So the more he can sleep in between activities the better.

As Cat says the "going out of my mind is so common". Unless you have gone through it is really hard to explain. It is a bit like hallucinating when you are having normal thoughts or conversations and the medication compounds the confusion.

For me I got my injury at the age of 50. Much like others I didn't get any rehab or therapy just go home and live with it! It took me around 7 years to get to a level where I was happy that I could not improve anymore. These are the sort of timescales to prepare for.

all the best

[Waitingfor in reply to sospan]

This is so helpful sospan, thank you for your response. I guess, as I have called/Facetimed every day since the cardiac arrest, it’s not until I look back at my journal that I see how much he’s improved. He’s gone from no speech at all, ITU staff thinking he is vegetative (perhaps forever), through to chatting away and (slowly) feeding himself, all since January. I’m really hoping for further improvements-if he could operate the iPad, it would be amazing, but I think we are some way away from that at the moment! I am prepared for long timescales, I’d just love for him to be able to have something a little more “normal” (whatever that means) at some point.

All the best to you x

[sospan in reply to Waitingfor]

Over the years being on this forum, one of the most frustrating things is the lack of insight the hospital staff pass onto the people around the carers.

Speech is one of the hardest things post head injury. Part of the problem is that the thoughts going through the brain travel faster inside itself than be transmitted to the the mouth and tongue can process.

It took me ages to learn to pace myself and even now when I am tired my speech develops almost a stutter. The other thing that we find difficult is word finding, sometimes it is the actual word for something like a chair - we know what is but just can't remember what it is.

The other thing they don't often mention is that after having tubes down your throat there is quite often damage and muscle loss which has to be repaired .

So speaking is a monumental step forward.

Whilst it may be difficult at the moment with Covid, what does help immensely is to take him outside in the fresh air in wheelchair. Whilst there is the mental benefit of having some privacy between you, he will feel so much better because being outside lowers the pressure inside the head and the fresh air will help him breathe. Plus of course a 20 minute dose of Vitamin D will boost his energy levels. Some wards have a patio door to a garden courtyard which would be ideal

[Waitingfor in reply to sospan]

That’s such a great point. He is getting to the point of often recognising when he uses the wrong word, and saying he knows but just can’t think of it. He’s also quite jokey about previous things, and when he trips over his words he will do a sort of “blah blah” with his tongue as he did before.I’d love to take him outside, hopefully this will come in time. We get some privacy during a one hour, once a week visit. It isn’t enough by any means but I know others don’t even get that-it’s only been for the last two weeks so I am making the most of it!xx

[sospan in reply to Waitingfor]

If he can joke - he really is doing well

[New_beginning]

Hes exceeding very well further progress will be made,

[Waitingfor]

Thanks new beginning. How is your husband doing?

[New_beginning in reply to Waitingfor]

Its been turmoil this past week, but sure has umpth my hopes and positive thinking. Yesterday with oberserving only and verbal reminders what to do husband cooked dinner. It was a loveliest feeling i had for a very long time, it was short and sweet but much needed and thinking about it now im still holding on to it x

[Waitingfor in reply to New_beginning]

How wonderful, that sounds amazing! Gosh that’s so brilliant. Sitting and eating with my partner last week was just incredible 🥰

[Sarbear123]

Hi waitingfor, I was the one with the husband with a CA aged 36.

In my experience, progress is agonisingly, almost imperceptibly slow. It’s like watching a plant grow, you only see it in hindsight. I think you’re probably figuring this out by now.

Your rational brain knows this and yet you can’t help but feel a little scared about how much progress can be made.

Clinical people are infuriatingly negative, I think they think they are helping but they aren’t. First they said husband was going to die, then that he will probably need long term care, then that he won’t be independent, then that he won’t work again, then that he will need to reduce to a less senior job. He’s proved them wrong on every single count.

Now he’s 1 year 9 months out it’s unbelievable how much progress has been made. But I can’t tell you how slow it felt. Plus the whole thing about most of recovery happening in 6 months was not the case in our experience. Most of the recovery happened in the second year.

He’s definitely a lot different than he was before but we have so much to be grateful for. Hopefully you will too xx

[Waitingfor in reply to Sarbear123]

Hi Sarbear123, thank you so much for your reply. It’s so fantastic to hear of your husbands progress, and my experience has mirrored yours to some extent-I know exactly what you mean about the plant analogy, it’s not until I read my journal or remember a pivotal moment from some time back that I note the improvements.

How long did your husband spend in hospital, did he go to neuro rehab? What was his progress like in terms of walking etc.? xx

[Sarbear123 in reply to Waitingfor]

We have a terrible service for rehab where I live so he got rehab 6 months after he was discharged. The quality of the rehab wasn’t great and his memory was so bad at that point he doesn’t even remember any of it. He didn’t want to stay so after a month they discharged him to community rehab which was an even poorer service. Overall not a great experience. Most of the progress was through daily living.

Husband could walk about a month after his injury but was extremely unsteady. He’s still doing private physio for balance.

Honestly he felt like a stranger for the first year, only in the second year did his old self start to return. But again, no giant leaps, just slow, steady-ish progress.

[Waitingfor in reply to Sarbear123]

Thank you for this. My partner is struggling with his physio, but has come on leaps and bounds with his speech and language-from nil by mouth up to level six since entering rehab in mid Feb. I take food in to him each week and last week he fed himself for the first time.His brain injury is very evident from his speech, behaviours, dependency, etc. He does recall lots of pre-arrest memories and has held on to certain information post-injury. Was your husbands brain injury evident for any time? Or did he in some way “wake up” much as he was before?x

[Sarbear123 in reply to Waitingfor]

Oh it was extremely evident, he was extremely impaired. He had no memories of the past two years, he was completely unable to look after himself. There was discussion of placing him in a care home if he did not improve (and there was no promise given that he would improve enough). For 6 months he was utterly dependant on me as he would get incredibly confused. It was such a scary time. At the year mark he started to return to me in terms of his old personality.

[Waitingfor in reply to Sarbear123]

Wow thank you so much. That is so helpful to hear. I read people’s stories and it’s hard because I can’t help but compare (even though I know I shouldn’t) and sometimes it sounds as if people “woke up” much more as they were before than my partner is. It’s hard not to worry about how much progress is possible but he has come so far and you and your husbands story is inspiring.

We are moving towards discussion of discharge at the moment and I have said from the start that I want him to come home and am willing to do any and everything to make that happen. Did you come up against much resistance to bringing him home?xx

[Sarbear123 in reply to Waitingfor]

Sorry just seeing your reply now.

Again our health service is much worse than the NHS so we had to fight to keep him in hospital where he was getting at least a little rehab.

How is he doing today?

[Waitingfor in reply to Sarbear123]

Ah okay, that makes sense. What country are you from?

Have yet to speak to him today-he chats with his best mate on Saturday morning and then i call in the afternoon and the evening. But recently he has been doing so well-the pain he was experiencing (and occasionally requiring morphine for) has decreased significantly and he has noticed-when I ask about it, he says it’s much better which is a huge relief for him.

He’s also doing well in terms of communication, moving away from mainly echoing my words and responding with jokes, questions, etc.

I asked him yesterday if he understood what’s happened to him and he straightaway said he has a brain injury and when I asked why, he remembered-I said “cardiac” and he said “oh yes, I had a cardiac arrest”. I know it can take a long time for people to come to terms with what’s happened and to retain any memories at all, so this feels really significant. In a truly unbelievable stroke of luck, one of the first people to come across the scene was an off-duty consultant cardiologist, who performed bystander CPR, and when reminded of that he always remembers and starts laughing in disbelief, expressing his shock at how fortuitous it is. So, I think he is doing brilliantly, especially considering he is allowed only one weekly visit from me. Xx

[Sarbear123 in reply to Waitingfor]

Gosh that was so so so lucky, what are the odds of that, kind of incredible when you think about it.

That’s fantastic he’s sounds like he’s making steady progress. Especially that he’s developing insight to his condition, that took my husband so long. We’re in Ireland and the state of brain injury rehab here is appalling tbh, especially if it’s not stroke related.

[Waitingfor in reply to Sarbear123]

Yes, it is truly amazing. We have always said that he has the most fantastic luck-I know some would say having a cardiac arrest is unlucky, but if anything I’m now convinced that he has some sort of protector. He was born 10 weeks early with a low survival rate and caught up incredibly quickly with no health conditions, and with this as well it’s just amazing what he has come through.Oh ok, I had no idea about the situation in Ireland, that’s awful. So glad to hear he’s doing well now. X

[Nanapal]

Hi Waitingfor, so pleased to read the wonderful steps forward your partner is making in his recovery. I am sure your constant love and support is helping him immeasurably.

I am so glad I found this forum as it fills in so many grey/blank areas that are totally new to us. As we now know brain injury recovery is a long, slow process that pushes forward and can often knock you back. Having read so many experiences on here from patients and their families we feel so much more prepared for what the future may or may not hold for our son. Like you when we look back at where we were in September ( ICU literally fighting for his life) and now smiling and talking with us we are so very grateful. I think it is human nature to want all the answers from the medical teams and expect them to give you definite answers but we can now accept that in our situation they can’t.

Sending you and your partner our best wishes and hoping for the best future outcomes for us all. Take care Nanapal. x

[Waitingfor in reply to Nanapal]

Hi nanapal, thanks for your message 😊 yes me too-this forum has been so helpful for me. I first posted around Christmas Day I think, in a very dark place, and it was the first time I was able to speak with people who had been through the same thing, or very similar situations. I check the forum every day and find people’s responses to me queries so unbelievably helpful.

Yes quite, it’s slow progress and one day at a time. I am just hoping we all get there in the end. All the best to you xx