Climbing that wall – Stroke survivor CLARE! Never say NO!

I have to share with you the most amazing story of grit, determination and desire to feel ‘normal’ again. Hats off Clare. In fact I wrote this response to their blog (below) on Facebook.

This is THE MOST AMAZING ACHIEVEMENT!!! WELL IMPRESSED!

What fabulous support too!

 

You know what resonated with me was the line in the blog:

 

‘Real freedom to move. Freedom from the wheelchair.’

 

My best mate said to me one day, ‘if you could walk or talk in life, what would you choose?’

 

My answer: to walk. Whilst my wheelchair was o important and useful to me in hospital and beyond it represented something I despised.  Just my truth.

 

‘Christmas portions … a lavish triple helping of blog coming up, to catch up. Next entry will have the exciting (and chalky) start to 2015.

Mid-November’s climb at the Foundry is at the shapely dalmations. Hazel is up high when we arrive, climbing a non-dalmation (trickier) class of holds.
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A quick news catch up … the 3 new wheelchair climbers have visited the Foundry twice, success!

And Lasse is doing OK after his bike stunts with Robin, though he’s had his broken collar bone operated on in Germany, and it turns out his shoulder blade is fractured too.

Nick hints at new equipment later, but Clare gets started with a climb on the holds.

She is stretching up really well. But she is leaning back a lot – tiring for her neck.

Harness adjustment for the 2nd climb, to help with the leaning back. Also a rope swap. I ask for help in matching up the various names for ropes. Ahh right! Got it sorted now: ‘safety rope’ means ‘belaying’, and ‘pulley rope’ is the one with the 2:1 gearing for extra assistance. Robin now takes pulley rope, while Hazel and a sandbag take safety rope for Nick, and Helen continues on safety rope for Clare.

Clare gets higher this time, with better body position … also some nice foot pushes, and more oomph from the ropes.

Now, says Nick, time for the new thing. He fetches The Foundry’s Karl who attaches a ‘bolt line’ at the bottom of the wall. Nick climbs up to run a static rope from top to bottom. The jumar attaches to the line with a nifty loop, whose name I struggle to remember.
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It’s an eye-opener to see this much improvement since Clare last used a jumar. Climbing has developed arm lifting power and it seems gripping power has leapt forward too. I marvel at Clare’s knuckles showing white – she really is gripping! No more need for the the cycling gloves, evostik and velcro (but that technique is ‘in the bag’ for others to make use of).

Firm pulls from Robin & Helen. Clare looks ninja-like from the back.
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It’s hard to see Clare’s face, and I can’t tell if she is still pulling hard. Nick is still talking to her though. Her arms stay raised and she keeps gripping the bar … focused on reaching the top …

She’s there! Yoooooo!!! “High five!”
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Back down and we’re all smiling and saying how well Clare did. Clare herself needs encouragement to smile. But she says that it’s surprising how she has improved on the jumar. “And no vent too”, Nick adds.

(Gotta look back now, enjoy again the thrilling first time that Clare ‘Topped out!’)

Clare looks proud and strong in the team pic.
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It’s going to be an afternoon in bed. But first coffees & cake. Clare is keen on this: “Which cake is the most chocolatey?” 🙂

A week later Clare climbs in the early evening. We’re in the Furnace – definitely not a hot Furnace, and Robin’s bare knees look decidedly dusky.

“How are you today?” Nicks asks Clare as we arrive. “Very well, how are you?” replies Clare, chirpily though quietly. She’s been very healthy recently, but yesterday’s inaccurately swallowed cake mixture might be why her voice is faint today.

Hazel is at Laserquest with friends, so I wear a harness and take the pulley rope. Robin climbs with Clare, and Nick & Helen are belaying. Carer Ade takes my iPhone and captures the ‘getting on wall’ start to the climb.IMG_6982IMG_6984
Placing hands very well.

Using feet too – left foot at any rate, supported by Robin’s foot.

It’s hard to stick to the wall here because of the slight overhang. Robin pulls both of them inwards as required. Clare floats out several times but looks perfectly happy about it. (Hoisting between bed & chair involves dangling and she’s never found this stressful, maybe due to Saturday morning trapeze back in 2011.)

Clare gets surprisingly high before she has had enough.

Abseil to chair. Clare looks happy and strong but end of trache is exposed – speaking valve has mysteriously disappeared. We manage to find it in Clare’s clothing.

Rest time chat: Clare and Robin have post-16 decisions to make. Robin is thinking King Edwards – best for outdoor activities 🙂 Clare isn’t sure, but will stick with Forge Valley, dependent on grades.

Now for climb two. Nick says we shouldn’t say anything to Clare about placing her hands and feet – up to her to plan her route. It’s really hard not to make suggestions, oops.
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Clare sets off determinedly. The rest of us mostly manage to stick to “nice one!” and “yep!” though Nick and Robin blab once each, and get laughed at.

Robin uses momentum to keep Clare on the wall, and Clare finds herself holds. Looking good!

Great climb! But strangely the speaking valve has fallen off unnoticed again, and this time we can’t find it anywhere. Time for the Swedish Nose – handy to keep the trache covered, though not good for audibility.

For the 3rd climb, we’re going to use the static line and jumar again. Another chance to find out what that loop is called: apparently it’s a “maillon”, which is a French word and is pronounced “my on”.

Nick is thinking of something linked to the jumar to involve Clare’s legs. That’s for a future session maybe. Meantime Clare still manages to lift her feet quite a bit, even while pulling with her arms.

We’re laughing afterwards, Clare as well. Some of Clare’s hair has been pulled off in the ropes, the speaking valve is lost, and there’s a scratch on Clare’s forehead. Heh heh, good session!IMG_7042IMG_7047

And now, it’s right before Xmas. And even chillier. Robin and Nick are wearing hats. Robin isn’t 100% – he looks paler, has a cold/cough, and had a day off school in the week. He’s still doing his paper round and outdoor stuff though. Hazel has been off school too – for the first time ever.

Nick had thought Slab, but said it was even colder over there. A small electric bar heater way overhead is heating up the doorway end of the cavern, but not by much. Nick points at some nicely grabbable red holds. So are we going to give Clare hints or not? Who knows. Let’s see.

Nick is showing us an extra line joined onto the pulley rope with a steel karabiner. It was inspired by the other 3 wheelchair users (they’re still climbing weekly, hurray!) and its purpose is to remove a finger entrapment risk. Its use has been discussed and approved by Foundry manager, Neil: it adds one more complication to the gear, not usually a good thing, but it reduces stuff in front of the climber’s face. We try to think of a name for the new device, having already come up with “Whittaker” for a jumar with straps. Perhaps it’s a “Whittaker single strand”.

Clare sets off strongly.

She is pulling hard.

She’s finding footholds. It’s amazing: her leg lifts right up. She’s recently restarted lifting her knees up to her chin again – she always used to sit at the table to eat with her knees under her chin.
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She is looking down to see where her feet can find holds, and working hard to get them there. Even managing to do it without help sometimes.
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During the climb I’m saying “wow, look at that!”
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At the end of the climb, Nick says “quantum leap”. It was a “step change”.

“Did you enjoy it?!” he asks Clare. “It was great”, says Clare, emphatically. “It was liberating.”

Real freedom to move. Freedom from the wheelchair.

Long chatty rest. Just before the Xmas break it’s the Mock GCSE season. Clare spent the whole of Tuesday (given extra time) on her English Mock, and both Clare & Robin have Geog Mocks next week. Nick is about to apply for Ultra Trail du Mont Blanc: there is a 1 in 5 chance of getting a place. He’s entered an ultra marathon race near Grenoble too.

Helen is off to Norfolk for the Christmas hols. She has completed 1 year at Hilltop School and has brought along cake to celebrate. “Lots of icing for Clare!” says Helen.

The Whittakers are off to Berlin for a few days, to stay with Lasse’s family. Nick reckons he might write an article for Summit during the journey – Clare is happy to get a mention. As for me, I’m going to promote the blog so other stroke recoverers can find it. (Eight followers is not very many, and apparently this number includes Nick’s mum (hello!) as well as Clare herself.)

The second climb isn’t so high, but still a great effort. Clare does some high leg lifts but it looks hard to get her arms raised and down below we’re asking if Clare is tired. She comes down. Phew!

Group photo “Ho, ho, ho!”
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We’re all waiting to try Helen’s cake. Wow – white choc & orange, with the most fabulous icing I’ve ever tasted. It’s a sumptuous end to a year’s climbing. What a journey this year has been. Climbing has become part of Clare’s life and this makes her very happy.’ https://wanttoclimb.wordpress.com/

NEW EBOOK!

I Am Still The Same -Self help stroke recovery tool

Internationally published author ‘Running Free’ (Amazon) .  Speaker –   Founder Fighting Strokes

Kate’s story in 2 minutes

 

The Brazilian World Cup inspired our next #strokerecovery & technology Tweetchat! Spread the word & RT!

If you cast your mind back to the Brazillian World Cup, what would be your abiding memory?

 

The now infamous (and vicious) Suarez bite, the best player of the tournament – Thomas Muller (perhaps?), the winning team (Germany-  if you’ve forgotten)- or the off-the-pitch news stories of widespread brothels (or zonas), the cheap and seemingly widespread child prostitution, the spotlight on the world’s biggest crack market, the new (but un-shocking) FIFA corruption allegations, the carnival atmosphere, or other?

 

For me, it was actually none of the above.

Instead, it was the powerful image of a paraplegic walking in a brain controlled exoskeleton during the opening ceremony!

This huge advancement in technology also reminds me of the paralysed man who was able to walk again after pioneering therapy that involved transplanting cells from his nasal cavity into his spinal cord. His name is Darek Fidyka. You can remind yourself by watching his video here.

These developments offer massive REAL hope for paraplegic, locked in syndrome and other stroke survivors to actually walk again. If only Christopher Reeve had seen his visionary dream become a reality. I guess it would almost be like, Robocop meeting Superman!

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To walk again and be able to give a fellow human eye to eye contact, to be treated as an equal, is a fundamental need. As are these hugely important (and dignity enhancing) daily living activities – communication, eating, washing, continence and toileting, dressing, grooming and having decisions made about you with you. Technology in #strokerecovery helps us to communicate, eat, drink, dress, wash, go to the toilet, shop, manage our medications, improve, improve our cognition, psychological issues and allows us to easily share and support other stroke survivors, amongst other things.

 

There are so many technological advances combining gaming (a great way to engage with younger children incidentally) and virtual reality technologies to be used as part of our individualised, self-management stroke recovery programme.

 

It’s worth bearing in mind that the word ‘technology’ can arouse thoughts of high-tech (and expensive) technological gizmos, but according to Wikipedia:

 

‘Technology  is making, modification, usage, and knowledge of tools, machines, techniques, crafts, systems, and methods of organization, to solve a problem, improve an existing solution to a problem, achieve a goal, or perform a specific function.

 

Technology affects our ability to control and adapt to our natural environment.’

 

Therefore, our next Tweetchat blog will be about #strokerecovery and technology at 5pm GMT on 10the March 2015.

 

If you want to prepare your responses our proposed Tweetchat questions will be.

 

T1. What technology do you use/offer in #strokerecovery therapy?

 

T2. Is there some technology you would use but don’t? Is it just about cost? #strokerecovery

 

T3. What are the main barriers to treating #strokerecovery survivors with technology?

 

T4. Can we overcome those technological intervention barriers? Is it not just cost? #strokerecovery

 

T5. How do you find out about evidence-based #strokerecovery technology?

 

 

NEW EBOOK!

I Am Still The Same -Self help stroke recovery tool

Internationally published author ‘Running Free’ (Amazon) .  Speaker –   Founder Fighting Strokes

Kate’s story in 2 minutes

#Strokerecovery self-management tweetchat – what you said! #stroke

This month our co-hosts @Stroketattler coordinated our second  successful, interactive (and fun) Tweetchat event on self-management.

We warmly thank our global supporters, posters and ‘lurkers’ (who we hope may get involved by interacting next time!)

I thought it might be helpful if you had a short summary of the key themes that seemed to emerge from our conversation according to our Symplur transcript?

So we asked …

T1. What do you think of self-management after stroke?

And you said,

‘As a wife we need to look at stroke self-management ecologically. Onus cannot be only on the survivor.’

‘SM (self management) huge priority but we need a culture change towards enablement and flexibility to support implantation in practice.’

‘It is equally important for both health professions and survivors to understand the importance of self-management in recovery.’

‘Self management is relevant. Likely why some survivors do very well/others deteriorate after discharge.’

‘Those with SM skills do well, those without social networks, SES, Education have difficulty self managing.’

‘Is this to do with widespread and early clinical pessimism after stroke & use of word ‘plateau’?

‘The word plateau is a self-fulfilling prophecy isn’t it?’

 

T2. How relevant is self-management after stroke? Do you think stroke survivors can manage stroke by themselves?  T3. What preparation and support do stroke survivors need?

‘I think engagement with FRIENDS not just family, who may know patient better.’

‘We can all learn and share from each other.’

‘We need motivated family and friends and the programme individualised.’

‘It is equally important for both health professionals and survivors to understand the importance of self-management.’

‘I like the phrase #guideddiscovery to describe the power of #peersupport amd #selfmanagement and #strokerecovery.’

‘We need a strengths-based approach to stroke recovery.’

‘We need strenths-based approach, mentoring and teaching stroke survivors and partners to mentor.’

 

T4. What are the barriers to self –management after stroke?

‘…The knowledge of health and community systems – navigation #strokerecovery.’

‘…Another barrier is lack of confidence or self-esteem.’

‘We need to do a psychological, cognitive and emotional assessment before developing self-management programme.’

‘Current problem is silos between Health and community (social care UK)’

‘ Lack of awareness, physical symptoms, transportation issues, and cost, lack of insurance benefits.’

‘Early discharge from hospital – less opportunity to mobilize and get SM knowledge.’

‘Emotional – anxiety/depression, relationship, environmental, ethnicity barriers.’

‘Time required for acceptance and adjusting to new life circumstances as well as #strokerecovery.’

‘Our challenge is sharing our learning and having collective voice – but we can overcome this.’

 

I very informative hour was spent by all.  We hope the larger stroke charities will learn and join in on future Tweetchats and our views start to INFLUENCE #strokerecovery.

 

POWER TO US!

 

NEW EBOOK!

I Am Still The Same -Self help stroke recovery tool

Internationally published author ‘Running Free’ (Amazon) .  Speaker –   Founder Fighting Strokes

Kate’s story in 2 minutes

Help for non-profits – A real social media strategy

We’ve been very active on social media with our registered charity, Fighting Strokes – Fighting Strokes, @Fightingstrokes, Youtube and Instagram – which has resulted in raising awareness, engagement, followers and #strokerecovery interaction online.  So being the sharing type, I thought I’d  impart my knowledge of a health care social media ‘charity’ marketing.

1. Identified our audience:

Fighting Strokes is attempting to inspire, empower and influence all types of stroke survivors, their friends and family, clinicians, researchers and therapists. We have an interest in promoting stroke recovery issues which affect younger #strokesurvivors and acute brainstem stroke with locked in syndrome survivors. With so many voices banging the drum about #stroke prevention and our experience,  we instead choose to try to practically speak up about issues in stroke recovery.

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2.  Identifies and set up the social media platforms

These included: Fighting Strokes, @Fightingstrokes, Youtube and Instagram

 

3. Then, we decided what we wanted to achieve in social media!

We wanted to raise awareness of the #stroke treatment and stroke self-management options and to grow our Twitter followers & Facebook likes by 15 per week.

 4. We agreed our budget

£0,000’s!

5. We decided how much TIME to commit to SM

We tried scheduling our tweets to reach more followers, to drive traffic to our blogs – Stroke Recovery Tips & Arockystrokerecovery – to reach new followers and make more efficient use of our time, but we couldn’t get on with Buffer (other ones include Tweroid, SocialOomph, Hootesuite, Tweetdeck).

6. Informative, informal content – are us!?

We decided that dynamic, informative and interactive content would distinguish us from other stroke charities. There would be a place for humour if appropriate also.

7. We look at what key opinion leaders in healthcare are doing

We look at other organisations we respect to see what they are doing well, not doing well and how they interact with their followers and established a hashtag on symplur.

8. Set up a Symplur Hastag

We established the #strokerecovery hashtag and use monthly tweetchats to grow our audience with @StrokeTattler. We plan to establish webinars later this year too.

9. Monitoring social media  

We use Tweetchat and symplur although Sumall is another type of monitoring app.

9. Google Analytics measures our activity

There are many ways to measure activity but we found Google Analytics as the best free software to use. Some measuring apps track the number of follower you attract, retain and what people are saying about our charity too. Other free sites include addictmatic, google alerts, hootsuite and howsociable

10. Mobile phone friendly

We plan to create a mobile friendly website and build an ‘opt-in’ subscriber list.

11. Headline: ‘What did Churchill and Thatcher have in common?’

We know people prefer to look at impactful pictures and short videos so we try to incorporate into our posts with links. We also try to use engaging headlines. eg

Clinical patient dignity is not equal to real patient dignity, trust me!

12. Shorten links

We try to shorten our links to make it easier to refer to on Instagram and to write more on Twitter. We use bitly.com.

13. Cross link with Instagram, linkedin and Facebook

It makes a lot of sense to use the same posts across different platforms using software like Hootsuite, Tweetdeck and Seesmic.

14. SM profiles

We try to maximise our word count in our profiles with specific description, hashtags, links and pictures. We always try to play with our profiles and update pictures reasonably regularly.

15. Real time posts

We only post in real time and have started trying to ‘pin’ tweets. Twitter  allows you to pin one tweet at the top of your timeline. You can use this to make sure your important messages are seen or if you want a specific tweet to get more retweets.

 

So, I hope my social media strategy summary is useful and helps you to drive followers, traffic, engagement and interaction to your non-profit organisation too!

 

NEW EBOOK!

I Am Still The Same -Self help stroke recovery tool

Internationally published author ‘Running Free’ (Amazon) .  Speaker –   Founder Fighting Strokes

Kate’s story in 2 minutes

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Self management and #strokerecovery tweetchat 10th Feb 5pm GMT

This months’ tweetchat should be very interactive judging by the global interest so far!

We are discussing these 4 central themes with our hashtag #strokerecovery

T1: What do you think about self-management after stroke?

T2: How relevant is self-management after stroke? Do you think that stroke survivors can manage stroke by themselves?

T3: What preparation and support do survivors need if they are to self-manage stroke?

T4: What are the barriers to self-management after stroke?

See you there! 5pm GMT 10.2.15!

Invisible – anonymous 2008

Interesting:

“Lonely, invisible, unloved, isolated, paranoid & withdrawn.
Old ‘normal’ friends have gone – maybe I’ll always be permanently damaged-goods to them?
But why is it so hard for me to forgive some from my past, even though I know counsellors will always tell you: ‘you must let it go.’?

IT WASNT MY FAULT

Few will ever understand me now and even fewer try to bother to try figure me out or involve me – without patronising me – or make allowances. Do they perceive my emotional highs and lows as abnormal?
To me it just feels like I’m the ‘odd one’ that nobody ‘gets’ now. But then, did anyone ever really get me?

IT WASNT MY FAULT

Trying to think how I can integrate back into society after a few years in the wilderness, but I can’t. The uphill battle seems insurmountable.
Am I destined to spend most of my days alone, still like the odd-one-out in the school playground?
If so, absolutely nothing has changed and the feelings are just the same.
I’m as trapped and isolated as I ever was.

IT WASNT MY FAULT

Kind acts for other human beings are appreciated not only by the receiver, but by the giver even more. But it seems that I am all out of kind acts for myself.
Humans need companionship and strong bonds don’t they? Plus they need to feel noticed, valued and loved unconditionally. Sadly, those basic human needs are missing in my life and I still feel completely invisible.”

– Anonymous


If you feel like this perhaps you should contact:

http://www.mind.org.uk/ or http://www.sane.org.uk