Arockystrokerecovery's Blog

May 22

My heart was like an open wound….

My heart is like an open wound. The physical and mental torture I endured, created a destructive guilt and anger in me, which in turn made me weak in all aspects of my life, except for my absolute PASSION – Fighting Strokes.

I’m not a negative, angry person, but I have harnessed that anger and injustice I felt, to push on hard and change things.

Yeah, I’ve achieved more in 2 years than most would do in a life time, but I had everything taken from me in 2 minutes on 7/2/10 at 18.09. I was left merely just existing in a physical shell, so wouldn’t you do what I did with a second chance of life? (…. Well, some of it!)

It only took 2.5 years for me to figure this out!

My own traumatic, lengthy and very serious brain illness, weakened my coping abilities and the way I conducted myself personally in my non-stroke world.

Renewing my Pink Lady cycling with my amazing friend, Alison (my ‘wheresrocky’ blog) and Lottie (our new pup) will help me to continue to make positive progress in my personal life too.

May 19

2 Comments

Separated at birth? #strokemonth #stroke

Dame Professor Nancy Rothwell Vice President at Manchester University,
always replies to emails immediately, like me!

She hates seeing her inbox full and she also likes to do things here and now, again I wonder who that reminds me of?

She’s a list person and juggles many roles.

As an academic she hates being told what to do too. Ooh remind you of anyone? (Although, I’d describe myself as bloody-minded!)

Above all she is a rule breaker and I like that!

On a more serious note, we have much in common on stroke.

Here is a quote from her on BBC radio 4 recently.

‘Big breakthroughs come often from intuitive or creative leaps rather than logical progression.’

HERE, HERE!

Hear her full BBC radio 4 interview here:

BBC Radio 4 The Life Scientific

She is heavily involved with the clinical trial of the IL-1 inhibitor in stroke. A drug which is designed to prevent the onset of the second stage of stroke damage, after the initial stroke brain damage.

The development has only taken 20 years because there is no money behind stroke research.

Over the years 100s of stroke trials have failed, so there are no big companies left in stroke research.

How ridiculous, when sadly someone in the world will have a stroke every 6 seconds, according to The World Stroke Organisation.

I absolutely have to thank Gillian Moreton (not Melanie!) who alerted me to Dame Professor Rothwell on my Fighting Strokes Facebook page

I can’t wait for our telephone meeting scheduled this Thursday! Could this telephone meeting be an important breakthrough for Fighting Strokes?

Biography of Dame Professor Nancy Rothwell

Nancy Rothwell obtained a first class degree in Physiology in 1976, a PhD in 1978 and a DSc in 1987 from the University of London. Her early research identified mechanisms of energy balance regulation, obesity and cachexia. In 1984 she was awarded a Royal Society Research Fellowship and relocated to Manchester in 1987. Nancy was awarded a Chair in physiology in 1994, then a prestigious Medical Research Council Research Chair in 1998. Her current research focuses on the role of inflammation in brain disease and has identified the role of the cytokine interleukin-1 (IL-1) in diverse forms of brain injury. Her recent studies have begun to elucidate the mechanisms regulating IL-1 release and its action, and her group has conducted the first early clinical trial of an IL-1 inhibitor in stroke. She has previously served as president of the British Neuroscience Association, a council member of MRC, BBSRC and Cancer Research UK.
Nancy currently oversees a research group of about 20 scientists, with significant external funding, and is President & Vice-Chancellor at The University of Manchester. She has recently been a member of the Royal Society Council, Vice President of the Royal Society, Chair of the Royal Society Education Committee, and is currently President of the Society of Biology and a non-executive director of AstraZeneca. In 2003 she won the prestigious Pfizer Research Prize, in 2004 was elected a Fellow of the Royal Society and in 2005 was honoured with a DBE. She was recently appointed as Deputy Lieutenant for Greater Manchester, a member of the Prime Minister’s Council for Science and Technology and the Greater Manchester Local Enterprise Partnership.
Nancy takes a strong and active interest in public communication of science and regularly gives talks to schools and the public and contributes to television, radio and press, particularly on sensitive issues in science. In 1998 she delivered the Royal Institution Christmas Lectures, televised by the BBC.

May 14

Paul Lamb – ‘Its about Individual choice & independence!’

Paul Lamb’s words on ITV This Morning today with the Silver Fox and Holly.

‘Its about individual choice and independence!’

Here here !

WE ARE ALL DIFFERENT!

We all think very DIFFERENTLY!

I mean take Tony Nicklinson and Paul Lamb versus Christine Waddell and Bram Harrison?

They are all severely disabled people, who think just like you and me, but they have no rights, no ability to travel to Dignitas and to drink the lethal fluid themselves, should they want to!

Protection of the vulnerable? Absolutely, yes.

But compassionate help for those that really want a way out, who are in pain and tired of merely existing like they are. Absolutely yes too!

Can you imagine being so poorly that your bowel empties through your mouth (Jeremy Vine BBC Radio 2 yesterday) or that you can’t do what normal people take for granted every single day like, wipe your own backside, eat or drink or flicker or cuddle someone or move an irritating hair from your face or stop your own dreadful cramp?

Paul Lamb said something very intuitive today that was said totally unemotionally and un-self-pityingly,

‘… I’m an individual and should be given choices, just like anyone else would have.’

His intuition and insight of the law amendments would actually mean he would live longer because he says he would stop worrying about what potentially lies ahead for him, which would allow him to actually be around for longer. His two sons meant such a lot to him. It would just mean that for him, he would just not be so scared of the pain and the process in the end. With a law change he wouldn’t unduly suffer like would now.

Very perceptive. Very articulate. Very compelling and I totally agree.

There must be a a way for those:
a. Who are cognitively able to make the final decision to do so,
b. Who want the decision themselves
C. Where their physical disabilities prevent them,

because they are human INDIVIDUALS!

Tony’s legacy.

May 14

6 Comments

Will our Cockapoo look like this?

Will ours look as cute as this, if not a smaller, younger specimen?

It’s been a long month to wait for us all!

Hoping Lottie will help me cope better with my low, mood swings and be a new bright new focus for all our family.

Also, at least she will never answer back and will always be pleased to see us!

(Well my very kind friend Kate P’s family seems to be a good advert for having a dog!)

How apt to get this month as it’s World Stroke Month 2013 and raising awareness of the emotional sides of stroke in the UK.

May 11

Talk about stating the bloody obvious!

‘Key to staying well is ‘diet ‘ exercise and being positive.’

I mean really?

http://www.express.co.uk/news/health/398790/Key-to-staying-well-is-diet-exercise-and-being-positive

Now, I personally think we are a nation generally ‘dumbing-down’, but is this a reflection of that or is Jo Willey -Health Editor – just having to fill column inches?

Perhaps, the US-German researchers have pots of money?

Wouldn’t it be nice for someone to fund:

The usage of functional electric stimulation on upper limbs in the immediate acute (hospital) phases on ALL stroke survivors?

Wouldn’t this this improve general stroke patient outcomes and reduce longer term costs on the NHS and welfare?

Well at the very least it proves that my charity – Fighting Strokes – is totally on to something!

We inspire, empower, help people progress more than they would and influence stroke rehabilitation policy.

May 10

Are you down in the dumps in Stroke Month?

I was thinking, which is dangerous, about my own progress over the last 3 years and I realised how much more had improved than I thought. So it made me think you might need a little positivity and encouragement yourself!

So ask yourself, which of these have IMPROVED since your stroke…

1. Speaking & continence
2. Self-confidence & self-esteem
3. Balance & hypersensitivity
4. Aphasia
5. The way you cope with your Aphasia
6. Dysarthria
7. Spasticity
8. Sleeping
9. Post traumatic stress disorder
10. Depression and managing it.
11. Social withdrawal & interaction
12. Fatigue
13. Irritability
14. Parenting skills
15. Your relationship
16. Sex life
17. Foot drop
18. Headaches
19. Vision
20. Restless legs

Maybe you have IMPROVED in all or some of these areas?
Well don’t you (and me) deserve a big pat on the back!!
:0

May 7

Are you stroke resilient?

Do you always try to bounce back from setbacks?
Do you often playfully laugh at yourself and situations?
Are you a glass half full or half empty kind of person?
Curious?
A stroke victim or stroke survivor or even a stroke conquerer?
Focussed?
Resourceful?
Have support?
Goal driven to help make your situation better?
Self-motivated?
Driven to always look for ways to deal with the trials of life?

If you are most of these things, I believe you are resilient.

May 4

6 Comments

Motherhood after stroke… All rose tinted bliss?

Julia Marie Smith posted the title of this blog on my fighting strokes Facebook page today. I’ve knicked it as it inspired me to write this!

How many of us stroke mums feel that they..

Can’t cope with motherhood at times now
Feel weaker and less confident as a mum
Are more often inconsistent with their parental decisions
Are easily manipulated because of their unreasonable stroke guilt they carry
Make poor judgements
Make crap decisions
Feel powerless & vulnerable
Are misunderstood
Are confused
Are emotional
Are isolated
Have the normal ‘mum’ guilt but times that by a 1000%
Are more irritable
Have no emotional barriers….

None of us stroke survivors will ever be like we were, but let’s hope time helps us cope a bit better as mums, whilst at the same time hope that society develops more of an understanding of the emotional motherhood issues, we all face.

I know I have achieved much in life and in spite of the tough times, our children, will always be my single biggest achievement in life! I’m so proud of you three! X

Happy families and happy bank holiday!

STROKE MONTH 2013

May 1

It’s all about the emotion in the UK! Stroke month 2013

Support world Stroke Month 2013 because:

The survivor often is -
Isolated
Depressed
PTSD
Lonely
Withdrawn
Frustrated
Misunderstood
Low self esteem
Low self confidence
Mood swings
Anxiety
A temper and easily irritated
A constant struggle trying to retain parts of the ‘old me’ whilst trying to embrace the ‘new me’
Denial

The loved-one also often feels:

Isolated
Frustrated
Sad at the loss of the person they married
Confused, as no guidance of how to deal with a stroke survivor or how to help their survivor cope
Lonely
Withdrawn
Anxiety
Angry

Here is a copy of The Stroke Associations press release:

Source: http://www.stroke.org.uk/news/emotional-effects-stroke-devastating-physical-effects-says-new-report#.UYDAaLSphmg.twitter

Emotional effects of stroke ‘as devastating as physical effects’ says new report

Too many stroke survivors and their families are abandoned when they leave hospital and left without the support they need to help them cope with the emotional impact of stroke. A new report published today (Wednesday 1 May) by the Stroke Association reveals that the emotional impact of the condition can be as devastating as the physical effects.

The charity’s report, Feeling Overwhelmed, is based on the findings of a survey(i) of over 2,700 people affected by stroke. While hospital care is rated highly, the emotional strain on survivors and their families when they return home is underestimated and often overlooked by health and social care services, leaving people inadequately supported.

The report findings reveal;

Over half of stroke survivors (59%) felt depressed and two thirds (67%) experienced anxiety as a direct result of their stroke. They also reported high levels of fear of a recurrent stroke (63%), anger (48%) and lack of confidence (73%)
More than two fifths of stroke survivors (42%) said they felt abandoned after leaving hospital and nearly four fifths (79%) had received no information or practical advice to help them cope with the emotional impact of stroke
Stroke can also have a negative impact on relationships. Over half of stroke survivors (53%) have experienced difficulties in their personal relationships with a husband, wife or partner as a result of stroke. Of these nearly three in ten had broken up with their partner or are considering doing so.
Jon Barrick, Chief Executive of the Stroke Association said: “Stroke leaves survivors and families shocked, shaken and anxious as their lives are often irreversibly changed in an instant. There are over one million stroke survivors living in the UK and with an aging population this figure is only set to increase.

“Better recognition by health and social care professionals of the impact of stroke will help people to be properly assessed and get the right support.”

The report also reveals that stroke causes an emotional shockwave for carers. They say that the emotional effects of caring are the most difficult aspect to cope with;

Nearly eight in ten (79%) experienced anxiety, 84% felt frustrated, 60% are not getting enough sleep and five in ten (56%) reported that they felt depressed
Over half reported feeling stressed as a result of being a carer (57%), but this increased to more than two thirds (69%) amongst those who had been caring for seven or more years
Over half (56%) said that the relationship with the person who had a stroke had suffered or changed.
Professor Reg Morris, Clinical Psychologist at Cardiff and Vale University Health Board says: “Depression, anxiety and fear of another stroke are common feelings amongst those touched by the condition and in the most extreme cases people can be left feeling suicidal. Better recognition of the emotional effects of stroke by health and social care professionals is essential in order to address the need for integrated psychological support for survivors and their families. We know that with the right emotional, psychological and physical care more stroke survivors will have the opportunity to make their best possible recovery.”

The Stroke Association is calling for:

Psychological and emotional support to be seen as being as important to recovery as physical rehabilitation and incorporated into the assessment process
The emotional needs of stroke survivors to be addressed early which may head off potential psychological problems which can impact on, and delay, recovery
The emotional needs of carers to be recognised by health and social care professionals and appropriate support made available to them
Information, practical advice and emotional support to be made available to everyone who has had a stroke or is supporting someone affected by stroke.
The report marks the start of Action on Stroke Month 2013. To find out more, please visit; http://www.stroke.org.uk/strokemonth

The Stroke Association offers a range of services for stroke survivors to support them in their life after stroke. For more information on stroke and support available contact the Stroke Helpline on: 0303 3033 100.

Still feeling overwhelmed?

“Stroke is the worst thing. With a stroke you are left with a horrifically emotional and confusing state of life.” A patient view.

Apr 29

2 Comments

We came to Number 10, so where were you Prime Minister?

My life is one hell of a roller coaster!

Just when I was starting to dwell on the relationship between betrayal, attitude and the prove-you-wrong reaction to life, I hit a MASSIVE high and all in one day!

What a day yesterday with our middle son Harvey and his fomer Dore Democrat school mates!

Here’s what happened:
5.15 Woken by Adele from my slumber!
5.45 Boarded the coach to London, fortunately with a loo!
11.30 Arrived in Westminster.

12.2pm Guided tour of the Houses of Parliament and Commons. Fascinating. So many customs, rituals and traditions. The course of history seemed to flip on a whim! We couldnt take pictures!

2pm Downing Street with the crowds
2.10pm Special invite to visit England’s most famous door!