15 months onwards

Hi All, I sufferered my Stroke on my wife’s birthday, I was really lucky in that she was home and recognised the effects after reading FAST as we only lived 2 mins from Ambulance Station and the hospital is only 3 mins further out, we live in Jersey.

I was in ICU within 35 mins and treated, physically I’m good, but, cognitively poor. I wasn’t passed onto the local Stroke Association by our hospital, was literally thrown out without support and as a family left alone to deal with whatever had happened to me ( I’d worked in Operating Theatres for 30 years).

Now medically retired and unable to return to my role in a job I loved at which I was really good at and well respected by all forms of medical colleagues.

I bumped into the Stroke Association tent in our local town centre as they were holding a bucket shake and asked about volunteer work with them, after some initial questions regarding why I wanted to volunteer for them I replied I’d had a Stroke 11 months earlier they arranged a meeting and I joined the Peer Support Group coffee morning, since that I have been inducted as a volunteer in Jersey and have done a local document regarding my baking as a recovery tool pre the Stroke Association baking week which was published in our local newspaper and had a radio slot again as my baking has become popular within our group.

Recently I performed as a fashion model- last week- for a charity show supporting the local Association- which was really good, tiring- a short video by me was shown which showed how my family and I had been supported by our group following my query into volunteer work.All this has finished and I’m home alone during the day, friends and colleagues work, there’s only so much cleaning and baking, shopping you can do to pass time. Golf has disappeared, coffee and lunches have disappeared because of the financial side of things, what do others do.....I need some help in conquering time issues, again, living in Jersey is fantastic but it’s not cheap to do anything here...where has my life gone????

Hello John, you sound like you’re doing really well, especially your involvement with your local Stroke Association. My husband had a serious Stroke 21 months ago  and I’ve managed to get him involved in our local U3A activities, most of which run during the day. I believe that there is quite an active group in Jersey. It seems to offer a range of activities and is not usually expensive.

http://www.u3a.org.je/groups.php

good luck with your search and feel free to keep asking us for further suggestions. 

Veronica and John.

Veronica,

thank you for your response, I hope your husband John is improving with time.

Unfortunately I do not see the improvement in myself since my incident, I am unable to concentrate for too long and get tired very quickly, not something I’m used too.

Now the winter is arriving it seems I’m slowing down even more into a depression, even though I know I’m very very lucky to be as I am....it could be very much worse.

Hi John - sorry to hear you're struggling, and it sounds as though you're suffering with SF as well.  I think others would probably advise that you might need some help and support before you become too low.  You clearly recognise the signs so it would be a good time to seek help.  

You may not feel like doing this right now, but keeping a simple diary might help if you feel that progress is slow, at least you can look back and appreciate your achievements, which you might not recognise on daily basis.  I've found it really helpful and I know others do this, Colin often suggests this too.  It doesn't need to be lengthy, but you might surprise yourself.  Also when things seem a bit slow in terms of outward progress, I always think that inside the brain is healing and doing its best to make repairs.  Don't forget that folks on this site are always here to support you, and they understand exactly where you're coming from, so please don't feel alone.

Take good care xx

Hi John, 

Like you I was struggling to see my improvement so I did as Nic suggested and wrote down each time I did something even it was just taking the kitchen bin out to the wheelie bin or washed up. I have seen my list rise from 10 tasks per day to 25. Some done more than once like the washing up.  So satisfying.  I only write one line e.g. washed up x 3 etc.  Might be worth a try. Hope you feel better soon. 

Kay 

 

Hello John,

it’s good to see you on the Forum again. I reiterate advice given by others to keep a note of what you are doing each day as it’s amazing to recognise the variety of things you are achieving. Your involvement with your local Stroke Association, the baking, the fashion show etc are astonishing in someone still recovering from a serious brain injury. My husband was very impressed when I read out what you were doing. Well done for that and don’t knock your success. 

John is continuing to improve though progress is very slow but it is still progress and he keeps battling on. We’ve just met up for a meal with friends who haven’t seen us for several months.  I was aware that last time his conversation was stilted, eating was slow, laboured, drinking (he keeps fluid in his mouth for) too long. Movement was laborious and hovering as he was thinking of what he was going to do next when he got  out of the chair.  Tonight, although many of those issues are still there, it is much less noticeable. It didn’t stop them leaning over to whisper and ask how he was when he nipped to the loo!! Had they not noticed he took over the conversation on a few occasions? These were big signs of improvement that demonstrated another move forward. He’ll never be the ‘old John ‘ again but we’re both having fun getting to know this new one!

Our friends were astonished at the range of activities we are involved in and told us we have a better social life than theirs. It is true that we’re busy nearly every day but it has to be carefully planned so that John gets plenty of rest in between. Keeping our social life has been a major factor in giving us both something to look forward to. On days/evenings when he’s been unsettled and nothing on the calendar, we’ve looked to see what is on at the cinema or theatre. I don’t know about Jersey but it’s possible here to get subsidised entry to places though I haven’t done it myself yet. 

Keep reading all the posts on here. They really are uplifting and hopefully you will gain some peace as I have since joining. Take care, V&J (in abstentia as he’s making a cuppa)

Dear John

As a medicall person you probably know this, but in case that bit of your data bank has been zapped....Your brain will rewire around the damaged areas. Whilst this is happening you need to slow down and probably will get such fatigue that you have to stay still. Brain needs lots of water throughout this stage. I believe this is likely to take two years. So you are probablyy still in this section of recovery.

I am so much in touch with what you say about concentration etc. I am almost three years and now I begin to wonder what to do to end this awful SF. Nevertheless, things are easing slightly and perhaps that will continue. A am an FCA. But my brain no longer operates at that level. I wait on tables and make tea or coffee, all voluntary. I mention this to demonstrate the changes that can occur. There is nothing wrong with waiting on tables, but I still want to act as the FCA of my past. And I havent learnt how to fit in with my new position. November has been a bad month and this is my third bad November. Things will improve but we need patience which I dont really have.  

Do not let your stroke beat you with depression. Bat away those errant waves. Smile. Be positive. Let depression win and your recovery will slow down by several months. Not a good idea. You can do it John. You have battled for 11 months (?) so look at what you can do and not what you can not.

Best wishes

Colin

 

Colin, sending you virtual positive vibes. You always have good advice.

A liitle anecdote for you. Before we went to bed last night John offered me his hand to pull me up off the settee. I looked up and he was smiling,,,,but it was only half a smile! His left smile had dropped. Yes, he was tired. ‘C’mon, it’s time to practice Colin’s mantra! Four smiles! False, fake or fortune,,,’ I said. We both went into fits of giggles copying each other and, hey, his real smile became dominant again! What a lovely way to end the day. Thanks and keep smiling yourself. We might frighten the Forum with some photos of our attempts one day. A gurning competition!! Oh no! ???

Thank you for your kindwords. False fake forced or real is the mantra and I think we should do the 4 smiles throughout the day. Good that you had a laugh.

Be positive

You are not alone

Colin