This year has been an unprecedented year even by my standards! (though the law of averages meant that I was due a good year both professionally and personally.)
So I’ve chosen my top 12 moments of the year to share with you both from my charity – Fighting Strokes – point of view & from Kate Allatt – the motivational & educational speaker/writer/blogger/consultant.
So here we go..
12. Fighting Strokes lost a trustee but gained three new trustees who are all utterly fabulous and specialists in their own areas! Joanna Fletcher-Smith – a specialist occupational therapist researcher at the prestigious Nottingham University. Kate Scott-Nelson a trained and highly experienced accountant who is employed by Ernst & Young. Finally, we are also delighted to welcome to our team consultant physician in stroke and geriatric medicine, Sarah Blayney.
11. Fighting Strokes has been invited to become a member of the prestigious UKSF Steering Committee which guides and influences stroke policy. We have already raised our profile and respect amongst stroke clinicians, researchers and doctors and personally visited over 18 patients affected by stroke in the UK. This is what Fighting Strokes stands for.
10. We increased our ‘likes’, followers, reach, engagement & interactivity on all forms of social media we use – Facebook, Twitter, Instagram, Vine, our new Youtube channel & more blog hits to this blog – arockystrokerecovery.com. We are regularly endorsed for our social media posting activities. We are also a guest blogger for three other sites and extended our recruitment of social media administrators to share the load/interactivity and inspiration globally.
9. We found and sourced a documentary film Director to explore the ‘myths of locked in syndrome’ and we have been filming for 6 months now. The Diving Bell & Butterfly film and book only represents one side of this awful illness and prognosis – some people actually recover significantly more movement than initially expected and make more progress. I’ve always believed these stories need to be told too in the interests of both balance and inspiration and real, not false, hope.
8. We secured important collaborations with Devices 4 Dignity & others and delivered a variety of speeches to preceptorships, nurses and professionals on a variety of subjects including – continence, compassion & dignity, inclusivity, assistive devices and improving patient care in the NHS.
7. I finished writing and then launched my 3rd ebook – I Am Still The Same – in November 2014. It designed to be a self-help stroke recovery tool. It took 2.5 years to research and write. I hope it practically helps anyone affected by stroke. We tried our best! (Be gentle!)
Kate Allatt (internationally published author of ‘Running Free’ ) and Cheryl Galsworthy have written this practical book which aims to be a self-management tool for anyone affected by stroke or acquired brain injury.
We hope I Am Still The Same will equip survivors with hands-on information to help them manage their own recoveries, both physically and emotionally, after ‘the bomb has exploded.’
What may surprise you is that I Am Still The Same is not just a book about Locked-in Syndrome recovery although the subject is covered.
I Am Still The Same alludes to the fact that the person inside often thinks and feels the same yet their life and others’ attitudes towards them, are now very different.
This book also covers subjects such as coping with cognition and mobility issues, assistive technology, aphasia, childhood stroke and parenting after stroke, the emotional fallout and other taboos.
Hopefully, sufferers will be able to proactively self-manage their own progress improvement but also benefit from better understanding and empathy from others.
We proudly give a ‘voice’ to other stroke survivors who otherwise are often unheard. The book includes an abridged version of Kate’s own stroke recovery journey.
6. Fighting Strokes is absolutely DELIGHTED to announce the new national feasibility study which we hope will help all types of stroke survivors struggling with upper limb disabilities. I always believed that my own recovery was aided by the experimental electrical stimulation that I received applied quite soon on my arms/wrists in rehab. My experience was also corroborated by other stroke survivors who used electrical stimulation frequently, repetitively and intensively too themselves privately. They say it has helped to either reduce pain or contractures or gave them positive neuroplasticity or brain re-wiring effects. The feasibility study grant application, that was so impressively formally written by Joanna Fletcher-Smith was approved to the tune of £250,000 by the RfPB! Perhaps my legacy? Can you believe the whole idea started from a cheeky Tweet to Joanna! I loved social media before this Tweet, but now I like it even more!
5. I have secured some phenomenal paid speaking gigs this year which have enabled me to carry on doing my voluntary work with Fighting Strokes – Cunard & BNP Paribas to name a couple – along with appointing a new speaker agent Diana, from DBA Speakers.
4. After months of wrangling we managed to get the dramatisation Rights back for ‘Running Free’ and have recently made some significant progress with an American Emmy award winning TV producer. Watch this space???
3. I wrote the content for a stroke recovery app … but now I need to secure funding and a key collaborator – could it just be Imperial College London?
2. I was also invited on my 44th birthday (and completely coincidentally) to go to a Buckingham Palace Garden Party to honour my charity work with my best friend Al. (Mark was supposed to be away in Dubai in case you were wondering!)
1. My family. We have had a traumatic three and a half years but calmness has restored, well for now at least!
Long may it last? Happy Christmas and a merry new 2015!
I Am Still The Same -Self help stroke recovery tool