Speaking as a Stroke Voice on a Wednesday morning

North West Stroke Voices is a group based in the North West of England formed by the Stroke Association from volunteers who have been affected by stroke.

My aim is to let it be known how our lives shape up as we deal with that traumatic, shattering event called stroke. It isn’t pretty, there are no guarantees, but we learn to smile, to share and to thank those who care. We are in a position to influence policy and planning at the Stroke Association.

I was invited together with a few others of our group to say a few words at a Locality Meeting of the Stroke Association. While we were there we viewed some very interesting presentations describing work proposed and also in progress. It was refreshing to discover that there was a great deal of interest in what those affected directly by stroke had to say about all this.

The speech was a success.

There will be a tomorrow.

Actually, with a microphone in my hand, a roughly scribbled speech on the table and around a hundred people in front of me my voice went all gruff and scratchy as I crumbled into a collapse of confidence, almost incoherence, somehow getting through it to be rewarded with a rousing round of applause and a smile and a kiss from Hilary.

We had lunch and then we had to go, the taxi was waiting to take us back home. I could feel those old familiar tears behind my eyes as we walked out of the building into the the sunlight.

I had talked about grief, loneliness, what happens to self esteem after stroke and went through the whole roller coaster of emotion as I spoke, gripping tightly on my walking stick determined to say what I needed to share. What we already know, what needs to be known…

I repeat, I am grateful for the support I have been given, Thank you.

keep on keepin’ on
:writing_hand: :smiley: :+1:

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Glad you were able to get out of the house as I know that that is something that you have often said you felt would be beneficial

Also glad you were able to give some of the message

And I do have to say I think the stroke association is rather selective about who joins stroke voices in at least some geographies

Well done on what sounds like a thoroughly useful session for both presenter and audience

Is it " keep on keeping on" or “onwards and upwards”?

Caio
Simon

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It was great for both of us to have a day out, a rare event that I hope will become more frequent.

I hasten to add that I wasn’t selected, I volunteered. Anyone interested in offering to help out could check the Stroke Association website or call by telephone and offer to volunteer.

You need to step forward.

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Well done :clap: Bobbi, sounds like you were amazing. You have such a great way with words, I’m sure you were brilliant and such an inspiration to others in our situation. Hilary must have been very proud.

A big thank for speaking up on behalf of all of us stroke survivors.

Keep up the good work :clap:

Regards Sue

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At the moment there is an upcoming election and a drive to remind prospective politicians of the sizeable chunk of the population who have been and may one day be affected by stroke.

Check out the Stroke Association website to see what you can do, how you can help out.

Send your local MP a wake up call.

Talk to someone if you feel you have ideas worth sharing.

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I’m pleased for you :slight_smile:

An ounce of mental health helps deliver a pound of physical in the aftermath.

Also good to hear that you’re walking has progressed to the stage that you could manage a trip out with a walking stick :slight_smile:
Caio
Simon

[Ps I know it’s a volunteer position I’ve tried multiple times - they seem to be anti someone who wants to move service provision forwards rather than just report on the lived challenges that a stroke causes - I’m dogged hence onwards and upwards :slight_smile: ]

I think Simon was quite active in Scotland at one point, I don’t think he has much contact there these days and prefers engaging with the English teams, perhaps? Maybe he finds the English more stimulating.

Good to hear you getting out into the fray Bobbi, can’t imagine it was easy addressing that many people with all the frazzling our brains experience when pushed to its limits, but you got through it and our issues need to be voiced. I don’t know whether I live in a monastery of the mind, but I am increasingly dispirited by the political and social Gollum disorder (my term), whereby all that seems to matter is economics and fiscal affairs. It would be nice to hear unabating rhetoric about inclusive communities and grassroots social welfare. Never mind, give it a few more millennia and we might just get there. In the meantime, good work. :smiley:

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That’s brilliant Bobbi. You did so well. I knew absolutely nothing about strokes until I had one 20 months ago. Now I could write a book on the subject. We went out for coffee this morning. The coffee shop had music blaring out from the TV, the noisiest coffee machine ever and customers trying to talk above the noise. I am now completely shattered but who apart from a stroke survivor would understand that?!

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@Rups @Apple @Susan_Jane @SimonInEdinburgh

This is how volunteers can help move things along. Not everyone has the time or inclination, but I for one am grateful for what is offered and if I can do my bit I feel honoured to be a part of what goes on here.

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Well done @Bobbi it sounds like a good way of being heard but also a good thing for you to do so you get out & about a bit & get to meet other people. Sounds like it went really well & I echo @SimonInEdinburgh re the walking. That’s a massive improvement for you.

I used to do a lot of volunteering and I got so much out of it. I hope to return to it one day. Just need to get my fatigue sorted…

Well done.

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In case anyone is interested here is the text of my very short speech:

Hi I’m Bob.
I had a stroke about three years ago.
I joined Stroke Voices North West to share my opinions and experiences with the Stroke Association Team.
Taking part is good for me and hopefully will benefit others affected by stroke.

In addition I’ll add that being a part of something with the aim of bettering things for others is no big deal, not difficult to achieve and can be tackled in a way that suites you.

keep on keepin’ on
:writing_hand: :smiley: :+1:

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Short & sweet but says everything it needs to.
Is this a regular gig now?

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@Mrs5K

It was a one off invitation, an opportunity to join employees of the Stroke Association at one of their regional gatherings, to see who they are and what is their focus.

Stroke Voices is influencing policy and decision making, but this is at an early stage. I hope it has far to go and will do useful work.

Ah it’s all making sense now…my brain is a bit slow at the mo :rofl:

Let’s hope it does go far. Certainly a good starting point.

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Well done, Bobbi!!!:+1:
It takes a lot of guts to get up in front of a room full of people and talk about your own life and the effects of a stroke.
As you always say to us - ‘keep on keeping on’ doing it and helping others!
Take care, John aka Bert.

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@Bert

Thanks John. I’d like to say though, that although I share freely I get back as good as I give. I think that applies in all things and is a good reason to do what you can when you can.
I do hope to be useful and to give value.

I have my ups and downs like everyone else. That’s why this forum can be so valuable and for that reason I am grateful for and respect those who provide and maintain this space.

Watching others find success and moving forward gives me a great deal of pleasure.

But sometimes all we need is someone to listen while we find our way through a rough patch.

The more we are together the stronger we become.

as ever

keep on keepin’ on
:writing_hand: :smiley: :+1:

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As a matter of enquiry in the sole interest of improving - who do you have in mind when you say “provide”?

I ask because I observe there is a huge difference between infrastructure and peer community. I don’t see the two meshing in synergy.
That I would passionately like because I think it will multiply the value of everybody’s experience with post stroke and stroke prevention.

I’m wondering if this is a component of organisational cultural as the potential for greater listening (& responsiveness) extends beyond the forum.

I think all the elements of consultative cooperation are a serious matter because strokes are often avoidable and blight lives often for decades and need huge support efforts in every facet from taxpayers money to stroke survivors & family adjusting to the emotional & 2ndary & tertiary impacts of a new reality

The potential is enormous - but imho we are not yet on the path - in fact much of the landscape is barely mapped.

:frowning:

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