Neuro assessments

Hi all just thought I'd catch up with everyone. My partner who has suffered two brains injuries through an accident and an attack. Has an assessment with staff from the hospital this week. We thought it was going to be at the hospital. But they rang said they will be in the area and are making a homes visit. When we thought he was going to hospital there was no way I was going to be able to go, so to help I wrote a letter. I gave my experience living with him, what I observe he struggles with, and what I have to endure. Its going to be interesting having them here. I really need them to help him and take some of the pressure off me and make his life better. Last time he went they put him on tablets to calm him down. He just became a zombie with no quality of life. They neglected to help and support him when it all happened, but they can't do this time, I won't let them

[cat3]

Good for you Angie & I hope it gets you the care you so badly need for your partner this time.

xx

[Hidden in reply to cat3]

Thanks Cat if there's one thing I've learnt is that you have to be prepared to fight to get any help. Hope your ok today x

[randomphantoms]

I whole heartedly agree with every word Cat says.

Love n hugs

Xoxo

[Hidden]

This sounds much more promising angelfish! But do remember that they are just doing their job and it is so much better for you if you can build a positive relationship with them so that they are confident to 'go the extra mile'.

Re medications - I keep reiterating this but medics can only start a patient off on a particular dose and it is then down to us to assess. monitor and adjust in consultation with the experts pf course. If he was 'a zombie' then lower the dose - get a pill cutter and do it slowly as it takes at least a week to judge a definite effect. It may also be that a particular pill/drug simply 'doesn't suit . You will be the expert when it comes to your partner but so keep a written record. And even when a particular dose of a particular pill works now it may need amending when things change...

Good luck!

[Julesgettingthere]

Hi Angelfish - Jules here.

Just 'dropped in' to say good luck with the assessment - i ditto what CarolineLD posted here.

Catch up soon - please post when it is so i can watch out for how it went.

Kindest regards

Jules

x

[Hidden in reply to Julesgettingthere]

Hi Jules its just typical gor me and my partner. We get ready and prepared for an appointment, and it gets cancelled at the last minute.

[Julesgettingthere in reply to Hidden]

Hi there,

I know the feeling.

I got mentally prepared for a consult in London (I live in Newcastle upon Tyne) and was literally about to ring the taxi to pick me up and take me to train station when she rang my sister and said the consultant had to cancel.

I wanted to drop to the floor.

But you get used to it dont you - it seems it happens to everyone.

Chin up

Jules

x

[Hidden in reply to Julesgettingthere]

Oh its happened no end of times to me so I'm use to it. It hasn't happened to my partner personally. I think he had geared himself up ready, and then had that deflated feeling. Its a good job they let you know before you left, you could have been on your way down there, that would have really got you x unfortunately we do get use to being messed around. Anyone that doesn't have that is bloody lucky xx

[sospan]

Very unusual to hear of a home visit - but every health authority is different.

I wouldn't be afraid of the zombie effect of the medication. The slowing down is a necessary part of his "recovery". The brain can't actually repair itself. What it needs to do is reroute around the damaged part to develop new pathways to the functioning parts. If there are lots of brain activity, stress, fatigue etc. The work becomes harder. You may have heard of people being put into a medically induced coma, this is a much milder, safer way of doing it.

Your husband has had two significant injuries and that is a lot for his system to cope with. After my injury, I was told to do nothing and avoid almost everything, so for the best part of 9 months i sat on settee doing not a lot. At the time I didn't understand why but now after reading and researching a lot, I do understand now.

Support is a very difficult this, I like many on this forum have had little or no support and have been left to our own devices.

What sort of support are you looking for as one of us may be able to point you in the right direction?

[Hidden in reply to sospan]

My partner had the accident and assault before he met me. So that was two years where the nhs just left him to it. He was on no medication I think deep down he knew there was a problem. But then the seven years we've been together he's been in denial. In that seven years he sat back and watched me fight to get help for myself. I had so many consultants push me out the door. I have been put on huge amounts of medication one of which reacted to another, and put me in hospital so I have become very aware of medication. I know from my own experience that you have to make yourself aware of medication and what reaction your body has to it. For me i had to fight surgeries to review my meds, and its only recently my new gp reviewed them. I know its difficult believe me, I have seen him confused, low, hyper, and explosive. When he has exploded it as been at me which has been detrimental to my health. I could have easily left him but I didn't. It was last year when I hit rock bottom and I said accept you need help. His useless gp wanted to send him to anger management which wouldn't have helped him. He was going to leave it at that until I got advice from headway. I got him to change to my doctors and they got him referred. I know its hard, I have brain damage, and I know that everytime I have a seizure I have more damage to deal with. But I also have to ensure he gets help for himself, I have tried so hard to support him. I've out things in place to help his memory, help stimulate him and encourage him. Believe me over seven years I've not just had to fight for myself but for him and that is exhausting.

[sospan in reply to Hidden]

It is the same with us. I was left for 14 months before I saw a specialist. Then when I saw him all he said was that I had a head injury and continue doing what I was doing. I was another year before I saw another specialist whom said exactly the same thing. I saw an NHS Neurologist again in my 5th year and all he said was it was strange I still had symptoms ... I could have banged my head against his desk

In march this year my wide fell and banged her head and she had a 150mm diameter lump on the back of her head. Taken off to hospital, checked over scanned, released and told to get on with it.

So it is a similar situation with both of us with Post concussion syndrome muddling along by ourselves. Where we are there is little help. The small hospital team has to cope with all the patients in 10,000 sq miles

[Hidden]

There seems to be so many areas that there is very little support. If your in an area where you have a good nhs service you've hit the jackpot. For us we've had so many services cut, if we need to see an OT we have to ring, go on a waiting list for them to ring us back and then a list to wait for them to visit us. I use to work for the ambulance service and then nhs direct so I was always one for championing the nhs. But becoming a patient has been appalling. I had to go and have a nerve and muscle test which should take approx 1hr. I went on a Saturday appointment, and the consultant said as I was interrupting his golf he would enflict some pain on me. He then stuck a big needle in my leg. His ridiculous test took less than 10mins. Because of the appalling treatment I have had I have tried to guide my partner. I know as part of his symptoms he will either get things mixed up or make it sound less than it is. Its got to the stage where its vitally urgent he gets help. Its destroyed our relationship that we're at the stage where I've had to say we will start back at friends. I have had to carry so much on my shoulders, which has caused a lot of damage to my health. If he's getting support and help it takes a lot of my shoulders. I think your situation and mine is very similar, we've both learnt that we have to fight to be noticed.

[peaches2]

Great to hear the assessment is soon and even better that it's a home visit! Best of luck, don't hold back! xx