Introduction to My Stroke Guide

Hiya folks!

I'd like to ask you for help if thats ok? Tomorrow 19th August at 3pm GMT im introducing two new members of staff to My Stroke Guide. As you may have gathered i'm a big fan of peer support and really value any kind of support thats available from folks with a personal experience of stroke. Your support to Graham on this forum  in recent weeks and days has been outstanding, your really exhibiting the values of a virtual group.

I was wondering if i could ask you to provide some pearls of wisdom to my new colleagues (who i'm yet to meet). Starting a new job at anytime can bring challenges, even more so in current circumstances. Usually a new staff member will shadow a coordinator but we cant do that at the moment so i'm wondering if you could just share a few things about what you valued from people to help you get through the inital period of your stroke and what continues to support you at the various stages of your recovery.

It would be lovely if you can share something because when i bring them here tomorrow i can show them the asset of My Stroke Guide and the community here that help and support others throughout.

Be lovely to hear from you!

Best wishes,


1.Every stroke is different.

2.recovery is slow slow slow

3.after care for stroke survivors is atrocious positive smile smile

6.the discharge letter is important

7.Us SS should keep a stroke diary

8.many Ss can not work out how to use this site. We often have lost parts of our  brain that make use of logic. is down to us to effect recovery. 

10.stroke is the cinderella illness.










Ha ha! Number 8 is so true that I couldn't work out what you meant by MSG!  I thought it was message Doh!

 Recovery is so slow that you don't see it, so a small journal to note #steps, how you feel after certain medications, what you did that day, etc. really helps. You can look back and be amazed how far you've come and that you really are getting better.  Ongoing feelings of exhaustion and fatigue seem to be common.  You have to be patient and listen to your body.  You can't push it. People don't talk much about how helpful CBD oil can be for physical symptioms and emotional/anxiety and sleep problems.  I guess it's not "politically correct".  I heard about it when I was in the hospital from a nurse.  She was saying it was too bad that it wasn't available in the hospital. Thank goodness I happened to hear her talking about it to another nurse.  It was a lifesaver for me during those first few months.Got it from Sprouts, at first, later on line.  Not surprising after an experience like a stroke that a person would have anxiety and feel fearful and isolated.  I got counseling for a couple of months.  That really helped-got ideas I could use on my own when I stopped going. Rehab is a must to start you on the right track physically.  

Suggest you take very good note of the two replies below.  

Your colleagues should take some time to read some of the stories on this site  -  I learned so much about stroke from the contributors.  Follow some of the long-term stroke survivors, they are a mine of information.  This site should be compulsory reading for medical students.

Regards, Nic

I agree with all previous comments. I also think that there is very little emphasis on the emotional effect of stroke on individuals and their families. Even medical support is limited once the survivor is back home and trying to get on with life. The attitude is 'you've survived your stroke and we have little else to offer you.'

I have found this site a very important way of connecting with others and sharing experiences. Stroke recovery is very slow and every step is hard fought for. Each of our situations is different, probably because stroke can affect so many different areas with varying degrees of severity.

I have to agree with John. I think there is very little support for the emotional side of stroke. The users of this site provide great emotional support and advice to one another, I think most of us have had emotional issues at some time during our recovery. You can come on this site and someone will be there to help you. 
We also share good times and celebrate achievements big and small. 

My initial experience in hospital was not great. Although I was in a stroke unit, the staff were full of conflicting comments.  It would be helpful if all stroke nurses 'sang from the same hymn sheet' rather than telling you something different with each shift change. I suppose what I'm trying to say is don't take everything you hear from nurses in hospital as 'gospel'.  I was told I wouldn't be able to drive for at least a year. Not so, the following day the consultant told me I would be able to drive after one month from date of the stroke.  I was also told by a senior stroke nurse that people go on to have one stroke after another until the inevitable happens!  What a thing to tell someone who has just been admitted! Again, consultant said after the first 3 months, you are no more likely to have another stroke that someone who hasn't had one provided medication is taken as instructed.

Only you know your own body so if something doesn't feel right, don't be fobbed off by your GP. They are not experts in stroke and most of them from what people on here say, they haven't really got a clue so stick to your guns and ask for a referral.

Never, ever give up. Progress is painfully slow but improvements do happen sometimes without you even realising it. Celebrate your victory with a little treat just for you.  Learn to love the new you rather than yearn for who you used to be pre-stroke.  This is a grieving process that takes time - 18 months in my case.  It's like losing a loved one. Time is a healer.

Finally, don't despair if you can't work out this site when you first join!  I've been on for 3 yrs and I still don't get some of it hence my comment on Colin's post! I never saw your original post Jason as it had disappeared off the front page never to be seen again unless someone else posts a reply. I thought your post had been written by Colin.  We have all brought these comments up with the Association but, as yet, no changes.  Please can we go back to the original rolling pages of posts so we can flick through them each day to see what we've missed?  


Amazing response! Thank you so much :) your experience rings so many bells with me... i will certainly feedback your info about the site. Im still finding it odd that a post can dissapear off the list if a few more posts come after it. 

What an amazing start to my MSG pop in! Thanks so much ?

Ann, i can only agree with you. The hidden side of stroke is a huge issue. I know peer support is a healer and im the 1st to step back when 2 survivors (or more) get together to support each other. For years i was the emotional support person for stroke in my patch, thankfully i have amazing colleagues in the NHS who also provide now and a few brilliant support groups and a lottery funded community steps project which some colleagues provide. However its still inadequate for the number of people living in my area that need support.

I feel that quite often all thats needed is knowing your not alone, this forum fills the gap nicely too. I wonder if theres a way that this can be built on??

Thanks for your reply, ill be sure to talk about the role of peer support when i introuduce my new colleagues to the forum this afternoon. Its vital ?

Best wishes!



Oh john, your so right. Once your through, your through. I get that theres too many people having a stroke to provide infinate support (40-60 in my locality alone) but i often bemoan that the professionals often fail to consider the services that we (stroke association), you (people with lived experience), others (many charities or voluntary organisations) and things (IT, courses, equipment) have a huge impact on someones recovery. It makes me so cross sometimes when folks are discharged with little to no information on those lifelines... trust me, we are fighting to do what we can for you but all too often the things above are dismissed as inefective or gimicky ... and we'll continue to challenge that on all fronts!

Thanks again for your reply ?


Thank you for highlighting the importance of individual recovery. Im often telling people to do what the feel is right to aid recovery, its a very personal journey and one thing does not suit all. I often encourage journal or diary keeping or even voice messages because it does take time to heal and you can have 100 people telling you that your doing well... if you see it in your own handwriting or hear you talking about your day then you have irrefutable evidence that its happening. It just takes dedication to record it regularly.

As far as treatments go. Evidence around CBD for stroke is still yet to show, just make sure your buying whats advertised as under tests not all the products had in them what was adverised, its not cheap so make sure your getting what you pay for. Of course always make sure that there will be no interactions with any meds your prescribed. A chat with a pharmacist or GP should clear that up. 

Thanks for getting in touch, your points will be most helpful later today!



Oh nic, i wrote a much longer reply but its disapeared into the void...right now, i have to go crack on with my regular work (sorting out peer support over Zoom) but thanks so much for your reply, its noted and i will highlight all of this discussion to my new colleagues. Thanks so much!


Noted... i need reminding of such things. In the stroke group i helped set up some years ago they have a great way of reminding me that im the different one there. I love being the butt of their jokes... its like working on a building site again and i value it as it gives me a rich insight into life after stroke. Keep me on my toes ok ?

Colin, i love lists and i really love this list. So true... may i ask how long did it take you to realise some of them? And the bravery to ackowledge them? All too often i find people charge at recovery and to use a term i read yesterday on here... try to evict their housemate (the stroke) before accepting that things are different?

Your post will be ever so helpful for my colleagues today...thank you ?



hope  all goes well this afternoon. Or ws it yesterday.The things i mention all dawned in the first year. Mostly  from 10 weeks to 20 weeks. This forum helped loads.



Me again

i had no clue as to what a stroke was. Yet i knew I was stroking straight away. Yes i know thats odd.

Because i had no knowledge, i just approached things as i found them. I was 90% paralysed and i assumed that was permanent. I was wondering about how to convert my car. Then the consultant saw me, he said that you can recover from this. So i worked away at trying to move every digit etc. i have to say i couldnt understand my ward mates who skipped physio and wouldn't follow the medical advice.

Regarding your new recruits, maybe it would be a good idea to explain that there are three main types of stroke.. TIAs, clots and bleeders. TIAs are so very different and it is misleading to include TIAs with full strokes. We talk about months and years of recovery, and that we will not be the same again. But this isnt the situation for TIAs. They nearly always recover in days and get a total recovery. Also TIAs can be the warning of worse to follow.


And its taken me fifteen minutes to find MSG on my comments. I despair at my loss of brain power.

I still cant use this site. No doubt it will change soon then i will understand even less.

There are several recent good 

tv programs based on Yorkshire. Are you getting a mass invasion of southerners ?

We love some of your countryside, but we wouldnt survive your winters.

Softie southerner Colin

Colin, its great to communicate with you? i just been explaining to a colleague in another organisation about TIAs/mini strokes.. 

I meet too many people whove been told theyve had a TIA/mini stroke and yet months later they are struggling with issues that they wouldnt have had if it was ... it often brings relief because a TIA/mini stroke is risk factor for stroke so folks can be terrified that a stroke is to follow when theyve had one and are already on right medication...

Its a source of frustation for sure...

 Thanks Colin !

We have had many dramas filmed in Yorkshire. I actually saw the filming of 'Victoria' in Wakefield. It was outside a row of georgian houses (actually offices for social workers!) It looked strange as the horses were pulling her carriage with her in it when someone tried to assasinate her on the wrong side of the road. Traffic had been halted to film it and I got a birds eye view of the lady herself!  Parts of the back of 'Buckingham Palace' were filmed at Wenworth House in Barnsley.  We've had loads of episodes of 'Frost' filmed in Wakefield and Dewsbury too.  

Just to add, it took me a long time to find your reply too!  Our winters aren't too bad but they do get snowed in on the 'tops' as we call it - the Moors.