new here - one year on.......

[gabbycat]

It's almost a year since my husband was in a car accident and acquired a minor brain injury. (Why do they call it that?!) He has post concussion. It has been really interesting reading the posts from both sides of the story. We have been incredibly lucky in many ways. 1.He survived the crash 2. Despite being made redundant a month after the crash he secured new employment 4 months later with an understanding employer 3. I have been able to stay home to care for the family, dogs and him. I realise how much worse things could be. I hope I am in a forum where if I say my husband has PCS most people aren't going to need me to explain it - he is very typical of the symptoms lists you'd read for PCS. He is managing to work, and this is good for him. I pick him up from work most days at about 2.30, a two hour round trip for me and he comes home to sleep. sometimes he might get up again in the evening but not often. I accept this as I know what he is trying to do. We were lucky to get help from Headway early on and I know that rest and calm is the best thing for him. He paces his own life and I get on with kids and home. It is what it is and although we hoped his recovery would be quicker we are still hopeful there is improvement to be made. After a year of living this way my husband appears to have plateau'd in his recovery. He is taking several drugs for head and back pain and he is attending a mindfulness course to help him with his anxiety. And so here we are. It's all manageable (just as long as his employers keep being understanding) and the kids and I have got used to life with Dad in the background. It is lonely though. I know my role in caring for him, I know that he probably needs more affection from me but I am very tired and I have no idea how long it will continue like this. There seems to be a lack of information about year 2 of recovery, so many sites seem to say most people recover in a year. I even picked up somewhere that by the end of year 2 you are as recovered as you are going to be. He's met none of the neurologists predictions for recovery (back to work full time by Christmas 2016) so we are completely in the unknown. What I am interested in is stories from both sides about how to cope with year 2 and beyond. What helped you? I am looking for the positive as my husband responds well to that. I know he hides his pain some days to try to be there for the kids and to try to feel normal. If you have a BI, besides rest what helps make a good day?

[cat3]

You seem to have done everything by the book Gabby for the past 12 months ; not surprising that you're exhausted !

The plateau thing can be deceiving though. Just when you think you've reached maximum potential, something happens to prove otherwise.

I, only now, feel I've reached my limits 5+ years after a SAH and, looking back, can see what a long way I've come in recovery terms throughout that time.

I hope you'll have better (& easier) days ahead m'dear ; best wishes to all of you. Cat x

[gabbycat in reply to cat3]

Thank you Cat. It is bizarrely comforting to know that recovery can continue so long. Of course we'd like it to be instant but we'll continue to celebrate the milestones, even if they seem to be coming less quickly now. x

[paxo05]

Hi.

Yes they do say you plateau after about 2 years. What they don't say is over the next year's you adapt to different problems to try and overcome them.

Yes medically you stay the same but you find new ways of living to lesson the impact on your life.

Yes there will be setbacks but hey it keeps you on your toes.

Also there are great people on here to help with the black days...And they do pass honest.

All the best

Pax

[randomphantoms]

Hi Gabby and welcome.

I don't know if this helps but my understanding is that mild, moderate and traumatic brain injury are medical terms based entirely on how long someone lost consciousness or was in a coma for.

Unconscious for less than 30 minutes equals mild. It has no bearing on how much damage has been done.

Some plateaus last longer than others.

If your husband keeps trying for improvement it is possible.

As i type i can see your last line and my top tips on managing are good hydration, good food, extra Omega and most of all structure.

Welcome to the forum

Love n hugs

Xoxo

[JRio]

I am similar as have what has been classed as a mild trauma and yes also grateful as know I am very lucky. It is very hard though as there is a lack of understanding amongst people in general of PCS and I had never heard of it before. I'd obviously heard of concussion but not post concussion. It is hard to explain to people and for people to understand.

I thought it was supposed to "go" after a year based on everything I have read on the net and fact sheets but I recently had a relapse following surgery, which was in part due to low blood sugar but also my brain trauma.

My GP is positive and reminds me how much better I am, but it is disappointing to feel that there is something wrong still and I don't know how to improve.

I am not sure what exact symtoms your husband has and I know it varies from person to person.

My husband works away a lot so I have to deal with the children but noise gets to me.

For me what has helped is nature, fresh air, visiting like a National Trust place or a big park (where kids can run off and make noise elsewhere and I can enjoy calm and green areas) , moderate exercise, water, lots and lots of water - keep the brain and body hydrated, when my brain goes fuzzy I need to rest (having surgery is great as everyone tells me to now... people seem to get implications of surgery and not brain trauma) and a good balanced diet. I use a lot of notes and lists.

When you say pain, I didn't get any pain from PCS, but did from nerve damage which I am sure was a result of accident too, I am just wondering as things can all get pushed under the umbrella of PCS and it might be worth talking to GP as the pain may be coming from other damage.

I was given three types of meds and the third is working a lot better, the nerve pain has almost gone. It was dragging me down and my mood. I also had acupuncture on that area. These two things really helped.

Take time for you. I know it is hard. I helped support my dad with dementia before the accident (sorry it sounds awful but he passed away a little before thankfully ... as I'd never have been able to continue and there was no other family to do so), so I know how draining caring for people is whilst bringing up children. You sound amazing!

And finally, someone passed on an article about concussion and PCS where a professor said something along the lines of that for some people there is nothing mild about mild traumatic brain injury.

Hope things improve. People on here are so great, I wish I had this sooner.

[Lizum]

I've just passed the one year mark from my concussion. I'm at the plateau too. I attended a course run by my local NHS mental health trust about living with fatigue and pain. They taught us pacing techniques to avoid a boom and bust cycle with the aim of slowly increasing activity and getting off the plateau. Unfortunately I've hit a tough time at work so I haven't been able to try it out to see if it works.

I completely get what you mean by the minor label. The affect on my life has been massive.