I'm Jason Haynes, a stroke support coordinator in Swansea, South Wales. I've been working for the Stroke Association for over twelve years. Hence, I have a bit of experience in stroke, but, I've not had one myself. Therefore, I sometimes feel a bit of a fraud when trying to help when my personal experience of stroke is nil.
Prior to my work with the Stroke Association I was a registered nurse, I trained between 2003 and 2006 - I was 30 when i started university. Before university I had a number of jobs starting out as a bricklayer then scaffolder until my mid 20s. I then travelled the world for 5 years spending time in many places and working as I went... it's not always been about stroke for me, I have a lot of life experience, which has been ever so helpful when meeting individuals as I do in my regular work for the Stroke Association.
I've always liked our online help platform and I've had a little bit of experience in My Stroke Guide and this forum over the years. I'm now hoping to become a bit more involved to see if the insights I've gained by supporting over 1300 people face to face in my locality will translate nationally through My Stroke Guide.
I'm really keen to learn from and collaborate with the experts on here, support new users and share my experiences in seeing and celebrating peoples recovery over the years, which is not always easy or natural.
Please feel free to get in touch with me. I will be checking here daily for messages and a browse through the forums.
I look forward to whatever it is that my involvement here brings!
Hi Jason ...l been rehabilitating since major stroke in 2011, ...I don't believe my recovery merits the title super survivor but I think I'm on the way towards,what many have stated, as a remarkable recovery... but there is still much to improve and achieve...my experiences over the last 9/10 years may be of interest to you, I'm happy to share with you if you wish...just contact me here and we can arrange to chat...it would take forever to write it all here, so I'll give it a miss,but feel free to say hi when convenient for you...
I was bitten by a stroke 13/12/2015. At that time I found it hard to use anything online, but I managed to get to the forum and it helped me beyond any expectation. I just fear that newbies might find the current site overwhelming.
The SA leaflets were great.
I used to sign off with
Be positive
Smile a lot
You are not alone.
And we used the phrase "new normal" to xplain that things would not be exactly the same as pre stroke. I notice our government has caught on with my "new normal" phrase.
We now have a large block of survivors who have started recovery in a world of corona. A different group of survivors who are going to have even worse problems than us.
I was horrified at the lack of support for SS generally. I am still horrified.
I do not resent anything that cancer patients, mental health, heart failures etc etc are provided, but why is stroke so very much ignored.
Like it or not, stroke is viewed as something that old people get. And corona land is very much all about the young. So where newly bitten people over 45 might go is a bit alarming. GPs can not possibly cope with us. They dont have the time and possibly not the training.
Now, in March 2020 I discovered I had a major fault with my heart. Over the past three months I have travelled, very fast, through the heart treatment and follow up. So I have a good comparison of what its like having a stroke and what its like having a major heart issue. And my conclusion is that the stroke is a poor second class citizen whereas heart patients are first class. I am very much at the early rehab stage and I read the BHF forum much as I read the SA forum four years ago. I would mention that recovery from major heart surgery is a doddle compared to stroke recovery. And I am doing the heart stuff with everything closed down due to corona.
So if there is anything I can help you with then I am here for you.
Thanks for being here. All you've said I can relate to due to stories I've heard over time - Your positivity is brilliant I'm sure you've inspired many folks and hopefully they have gone on to inspire you. I am proud to know folks with similar outlooks as yourself in South Wales, they are the experts I try to link up other new survivors who have been bitten by stroke (ive never heard that term but i like it). I do feel that I am the rank outsider in some respects when it comes to talking stroke so I do call in the troops when i can.
I would really like to build up a virtual support team here on MSG that can replicate face to face support that exists in some of our communities.
I'm hoping you will be able to guide and help me as I go regarding your experience of stroke and together - along with others experts on here we can work together to help where we can when we can ?
It's always a pleasure to hear from someone with experience of stroke and a willingness to get involved. Thank you!
I think your experience must be very useful for people to hear about when they have been recently discharged from hospital and it may seem that things are going to be very different going forward. Some of the stories I've heard from survivors i've met have almost become my stories because i've told them so many times.
Inspiration and belief in better are so important in the early days following stroke.
Before Covid19 came about my colleague Amanda and I were supported by 6 people affected by stroke. We would visit the hospital weekly and take recently admitted stroke survivors off the ward to the cafe for a chat.
The opportunity for people to meet other stroke survivors who were once inpatients, who had returned to driving, employment, holidays and climbing Pen Y Fan (biggest mountain in South Wales) was quite a tonic.
I hope your experiences can show through this forum that there is life after stroke because you can say it like it is.
I look forward to getting to know you and your experiences more!
Hi Jason, I am 18 months on from my stroke which knocked out my right side. I made a really good initial recovery being able to run again after 2 months and driving after 5. However, I've since suffered some setbacks as the result of post stroke seizures, which is not something I was warned could happen. I do volunteer with the SA and am an ambassador. Currently I am part of Here for You.
I also had coronavirus early on so wasn't tested so can't be 100% sure although had the symptons even though it was reasonably mild, but that did impact on my continued recovery.
I suffered a hemorrhagic stroke 3 years ago (aged 57) which left me paralysed on my left side. I spent 5 months in hospital, the last 3 months in a rehab unit. I have to say that the treatment I received in hospital was second to none but unfortunately I was discharged out into the big wide world with very little support. I knew nothing about the Stroke Association, so was never assigned a Stroke Coordinator. It was months before I was contacted by our local Community Neuro Rehab Team. I am very lucky to have an amazing husband and a close family. We have spent a fortune (nearly £18,000) on private neuro physiotherapy (I began working with my private physiotherapist when my 7 weeks of community neuro physiotherapy finished. I am pleased to say that I'm now walking with a stick which is great although sadly my left arm and hand have shown very little sign of recovery. I do regular exercise on both my leg and arm. I have been unable to obtain counselling with a counsellor trained in dealing with stroke survivors, which I feel is an important part of recovery along with physiotherapy.
Please feel free to contact me if I can help with your research in any way.
Hello Jason. I am Judy.i fell with 4 strokes 10months ago and lay on the floor for 12 hours until my slster found me. Couldn't move much as my muscles had started to shut down. My strokes are posteria and have affected my balance. I find it very difficult standing and walking. I am 78 this month and have to rest o lot. I have anlmals so they keep me moving. I have also lost top left quadrant sight in left eye. I also still make many mistakes typing and texting. That has improved. I keep smiling. Blessings judy
We all have different stories here. My own is that I was a perfectly fit (or so I thought) 28 year old married legal assistant. Overcame 2 days to live, coma, total paralysis, major heart op, a year in hospital, husband dumped me due to disability, learned to talk again, benign brain tumour and broke my hip last year. Got out of my wheelchair in 2008, now use a walker. Live alone now too.
Felt cursed until I came on here. Still do sometimes, sadly.
Thanks for getting in touch. I'm constantly surprised in variations of stroke support in the UK.
I recall attending a wedding in the US of a friend who is a physio I got talking to her colleagues over the course of the day and I was astounded by the difference stroke inpatients recieved over there " 3 hrs therapy a day 1 with physio, 1 with OT and 1 with speech therapy. If speech therapy not needed then an extra 30 mins for physio and OT" ... amazing eh? I told them what therapy consisted of in my local area.. they were a little bit surprised to say the least
It's a bit unfair about regional variations but that's life I guess and devolved health across our the UK makes it even more varied. What I will say is that I've seen amazing progress in my 12 years, it's so much better now than it was when i started and im ever so pleased to have witnessd the changes, which are continuing to come about.
I'm not doing research as such here, but thanks for the well wishes. What I'm hoping to do is bring another aspect to the forum and that's me as a stroke coordinator alongside the experts (you guys with personal experience of stroke) to try an offer some support or answers to new members of My Stroke Guide.
I'm really enjoying hearing from folks on here and I know combined experiences can really help others - I've seen it so many times in my community.
There is always room for improvement in statutory services but the strength of the Stroke community is that they will always exist and if we share tips, tricks, hopes, dreams and cheers then it can help people feel psychologically supported when it's most needed.
Recovery is a marathon and every marathon runner loves to be cheered on at every step... (I done a 10k run once so I know what I'm talking about ?) and we can do that without leaving the house thanks to My Stroke Guide.
Thanks again for getting in touch and offering your support?
I love your title... spaceCadet I guess everyone feels like a space cade when the world is turned upside down and inside out in an instant and you've got no time to suit up..
You've had a bit of a rough ride haven't you? I really appreciate your openness. I always feel I'm doing the right thing when im told what its really like after a stroke. I dont like hearing "I'm fine" I want the real thing because it's real.
I'm really interested in knowing how this My Stroke Guide has made a difference to you. I had two telephone conversations today and for the folks I spoke to just knowing I'm around is the do is they needed. Is that the same about this website? I hope so...
I've taken this role on as a volunteer because Covid19 has really helped isolate the isolated even more and i wanted to help make a bit of a difference. I am a bit of a technophobe but I've upped my game since March. I would like to sit alongside the community on here and try and help in anyway I can.
Please feel free to guide me and let me know what works for you on My Stroke Guide. It's time for the cadet to command ☺
What a fine introduction my name is Peter brown I live in the kingdom of fife a nice area in the east of scotland in leven fife specifically ,just south of st Andrew's the home of golf I suffered a massive stroke exsctlybone year ago after the initial hospital stay over6 months Ibwas dischargedto live at home where I continue my rehab I have only recently visited and perused my stroke guide finding great comfort and inspiration particularly useful has been the videos and discussion forum I am still paralysed down my left side the arm and leg still need a lot of rehab I do manage to walk using a tripod ascdtatedctye video section and discussion forum have been very useful I also visit a lot of you tube web sites that deal with rehab these are predominately American and some like flint fit are always pushing products to buy it would in my opinion be good to have rehab videos as an example I would point to dr TARA TOBIAS SERIES ON YOU TUBE OR TWO PHYSIOS BOB AND BRAD IF WE HAD SOMETHING SIMILISR for the uk this I believe would be useful I hope this reply is useful and I wish you the best of luck
Thanks so much Jason. Space Cadet was the nickname my beloved boyfriend, Billy, had for me! He sadly passed in 2013, but we were both massive Star Trek fans haha!
Indeed, like many, am finding this site really helpful, and have made many friends. It is good to share stories. Am a bit of a Luddite too, as only began using an ipad during lockdown! Love it now! Was out often pre-shutdown, so have found this time extremely reflective (not in a good way either) like many. Yes, I have had a terrible time, but others do as well, so I didn't feel so lonely expressing myself here. Was great to hear others felt the same sometimes! It's good we are free to speak here, and never judge each other. The forums, information and little films are mega useful. Rock on guys!
There will be a very interesting programme on BBC2 this Sunday, at 9pm, with Alex Brooker. I feel this will highlight the chasm between acquired disabilities, against people born with them. Greatest of respect, they know no different. We do.
Unfortunately i have met people with similar experiences in South Wales. Stroke while home alone and then found hours later. I cant imagine what it must have felt like. However, what i can imagine from your wonderful message is your strength of character!
Judy, you sound ever so positive, with all thats happened you smile and have reposnsibilities that keep you moving, you recognise your difficulties and get on with things as best as you can. Its such an admirable outlook that im sure will resonate with many on this forum.
Thanks for sharing Judy! Keep smiling (not that i need to tell you that)
Welcome to MSG, although saying that you've been on here longer than I ....
I think what you've put out there is the importance of this forum and this website.. sharing of experiences, tips and resources. In my experience it seems that in the inital days of stroke or discharge there are many pressing concerns for individuals and their families. While we (the SA)are always available to help, local or virtual communities are sometimes the 1st port of call once things have begun to settle down these can be so helpful in helping people in the early days.
While i generally have no input on what this site contains i think that the more interaction we have on the forums can help us guide our content?
Prior to My Stroke Guide I remember sharing videos with people in my locality from stroke organisations all over the world which i personally thought would be informative, helpful and encouraging. They often were.
I was delighted when My Stroke Guide came along which has been ever so helpful. I now use a tablet to introduce people to it and share our own videos from it that i felt are relevant to that person.
I've seen people become emotional when i've shown videos off this site because theres a connection that i cant give - Stroke survivors talking about their experience and their recovery and/or professionals giving information and support thats relevant to the individual.
Virtual stroke communities and access to information is a tonic that needs prescription I believe & your introduction confirms that!
Yes, ive seen that before. The stand out bit for me is the last bit
"if i give you a headache, or make you sick, irritable, confused, disoriented, afraid or make you feel your overdoing it; im trying to get your attention in the only way i can. Stop and listen to me"
I need to use this more in my work. I like to use or suggest Jill Bolte Taylors "40 things i needed most after stroke" because there are some really good tips in that.
I always plead that stroke survivors are gentle with themselves because i feel that we are all often too tough on ourselvesand often give ourselves a hard time. It doesn't always help...
Thank you for reminding me of that letter.. brilliant!
Hi Janet, thank you for posting this. I've just read it and learnt a lot - which I can relay to my Mum, to help her understand how she's feeling after her stroke in April.
Im really enjoying my 1st week of getting to grips with the forum here. As a big fan of peer support its enlightening to read how your all helping each other through tricky times and celebrating achievements with each other. I used to chair a stroke support group as a volunteer and was always humbled and honoured to see everyone spring into action when it was needed. If it was to cheer on, pick up or lift out the gang knew what was needed and did (and still do) so well. As said in my initial intro, i want to share the stories ive heard over the years but im still working out the best way to do that as a novice in the world of stroke...