Stories & Awareness


Hello, I hope you are well ! My name is Lauren Moss and I’m a masters student at the University of Nottingham, studying Rehabilitation Psychology.

I am currently looking for YOUNG CARERS of STROKE SURVIVORS AGED BETWEEN 16 & 18 to take part in my online study for my research project and I was wondering if you could help me recruit participants.

As you probably already know, findings have shown that young carers of stroke survivors do not have the relevant and condition specific information they need to support the person they care for as effectively as they would wish.

Due to limited recourses of support for this group, I want to explore what support young carers of stroke survivors need as they begin to transition into adulthood.

This is a really important study, and I would be entirely grateful if you could help me recruit participants by enabling me to reach a wider audience.

Thank you for your time

#SOSHereForYou #NeverGiveUp

🏆 Thought of the Day 🏆

Don’t allow what has happened to weigh you down……

You’re here for a reason, share your experiences & show the world that stroke hasn’t won 壘 

“Spread your wings and fly. You deserve to be a champion.” – Andy Dwyer

“Just forget about the “what ifs” and “buts”. Spread your wings and fly.” – Simran Pahuja

Not Another Side Effect of Stroke Surely!?!?!

Despite my stroke, which was Ischemic, being nearly 4 years ago, I’ve recently started to experience Restless Leg Syndrome (RLS) especially at night. Thankfully, it’s not all the time or everynight but it has been happening. I’ve also noticed that I’ve been more tired in the day even when I haven’t done much to make me tired. I know you shouldn’t but I took to Google and found that RLS can occur in people after stroke.

Restless leg syndrome (RLS), also known as Willis-Ekbom Disease, can cause unpleasant sensation in the legs coupled with an urge to move them. This may result in sleepless nights which snowball into other secondary effects from stroke, like daytime sleepiness and chronic fatigue.

Studies suggest that lesions of the subcortical brain areas such as the pyramidal tract and the basal ganglia-brainstem axis, which are involved in motor functions and sleep-wake cycles, may lead to RLS symptoms in patients after an ischemic stroke.

Has anyone else experienced Restless Leg Syndrome after their stroke OR did you suffer with RLS before and it’s become worse after stroke??


Over 1,000+ Supporters

SOS – Survivors of Stroke has surpassed the 1,000 follower mark on both the Instagram and Facebook pages 🎊👏🏻💕

Both Ashley and I would like to say a massive thank you to everyone who has continously supported us on this journey.

It really does mean so much to us both and we never expected SOS to take off like it has done without any corporate or financial backing 😉

Please check us on Facebook, Twitter and Instagram by following the links provided and don’t forget to give us a cheeky like and follow 😉

#SOSHereForYou #NeverGiveUp #strokeawarenessmonth

Ryan’s Law

Can You Help Ryan’s Family change the law regarding victims of ‘hit & run’ incidents??

The family of a man from Cornwall who was killed in a hit-and-run are campaigning for tougher sentences.

Ryan Saltern was killed after being struck by a car on the B3267 in St Teath in July last year.

Driver Wayne Shilling, of Delabole, received a four-month jail sentence suspended for a year after he pleaded guilty to failing to stop and failing to report the accident.

He was also disqualified from driving for 12 months, given an evening curfew for four months and ordered to pay a £207 victim surcharge and prosecution costs, but for Ryan’s parents Helen and Mark, the punishment was inadequate.

In an interview with ITV News West Country, they said their son’s life had been made to feel “worthless”. The words ‘your son is dead’ and the words ‘you’re free to go Mr Shilling’ will haunt me for the rest of my life.

Helen Saltern, Ryan’s mum “That’s what they said at the end. He [Shilling] got a four-month suspended sentence, a  couple of hundred pound fine, a 12-month driving ban and that’s it for my son’s life,” Helen continued.

“The value of his life…it’s nothing. I could do that. Grief is hard enough without injustice added to it and having your loved one’s life feel so worthless is…heart-wrenching.”

Currently, hit-and-run drivers face a maximum sentence of six months where there is no evidence of careless or dangerous driving.

Ryan’s family are now campaigning for the Government to introduce stricter sentences for hit-and-run drivers.

They have backed a pre-existing online petition which, if it surpasses 100,000 signatures, will be considered for debate in Parliament.

It currently has 68,226 signatures.

In a statement, a Ministry of Justice spokesperson said: “Our thoughts remain with the family and friends of Mr Saltern.

“While the independent judiciary will consider the facts of each case, drivers who fail to stop can face more serious charges, which can carry a maximum of life in prison.”

Read more about Ryan’s Heartbreaking Story:

The Official Facebook Page set up for Ryan:

Sign the Ryan’s Law petition below:

#ryanslaw #petition #ukgovernment #raisingawareness #support #facebook #twitter #instagram #awareness

Mental Health & COVID-19

Mental Health isn’t just about feeling depressed or suicidal, it’s a MASSIVE range of diseases, illnesses, thoughts, feelings and emotions #MentalHealthKills

It’s a global pandemic, that not enough people care about & it’s killing people DAILY 😔

Forms of Mental Health:

  • Depression
  • Anxiety
  • Dementia
  • Alzheimer’s
  • Post Traumatic Stress Disorder (PTSD)
  • Bi-Polar
  • Psychosis
  • Anorexia
  • Schizophrenia
  • Post Natal Depression (PND)
  • Obsessive Compulsive Disorder (OCD)
  • Alcohol/Substance Abuse
  • Attention Deficit Hyperactivity Disorder (ADHD)
  • Binge Eating Disorder
  • Bulimia
  • Eating Disorders
  • Insomnia
  • Borderline Personality Disorder
  • Munchausens Disease
  • Panic Disorder
  • Phobias
  • Seasonal Affective Disorder (SAD)
  • Self Harming
  • Suicidal Tendancies
  • Bereavement (Struggling After Loss)

Ever single person in the world knows somebody who is struggling with at least one of the above.

So, what effect does the Coronavirus pandemic have on somebody with Mental Health???

The COVID-19 pandemic has disrupted or halted critical mental health services in 93% of countries worldwide while the demand for mental health is increasing, according to a new WHO survey. The survey of 130 countries provides the first global data showing the devastating impact of COVID-19 on access to mental health services and underscores the urgent need for increased funding.

Bereavement, isolation, loss of income and fear are triggering mental health conditions or exacerbating existing ones. Many people may be facing increased levels of alcohol and drug use, insomnia, and anxiety.

Meanwhile, COVID-19 itself can lead to neurological and mental complications, such as delirium, agitation, and stroke. People with pre-existing mental, neurological or substance use disorders are also more vulnerable to SARS-CoV-2 infection ̶ they may stand a higher risk of severe outcomes and even death.

#mentalhealth #mentalhealthmatters #bekind #mentalhealthawareness #mentalhealthsupport #depression #anxiety #anxietyawareness #depressionawareness #coronavirus #covid19 #socialmedia #soshereforyou #nevergiveup #nhs

Moyamoya Disease

Moyamoya disease is a rare blood vessel (vascular) disorder in which the carotid artery in the skull becomes blocked or narrowed, reducing blood flow to your brain. Tiny blood vessels then open up at the base of the brain in an attempt to supply the brain with blood.

Moyamoya disease is found all over the world, but it’s more common in East Asian countries, especially Korea, Japan and China. This may possibly be due to certain genetic factors in those populations.

Moyamoya disease may occur at any age, though symptoms most commonly occur between 5 and 10 years of age in children and between 30 and 50 years of age in adults.

The first symptom of moyamoya disease is usually stroke or recurrent transient ischemic attack (TIA), especially in children. Adults also may experience these symptoms but also experience bleeding in the brain (hemorrhagic stroke) from abnormal brain vessels.

Accompanying signs and symptoms of moyamoya disease related to reduced blood flow to the brain include:

1️⃣ Headache.
2️⃣ Seizures.
3️⃣ Weakness, numbness or paralysis in your face, arm or leg, typically on one side of your body.
4️⃣ Visual disturbances.
5️⃣ Difficulties with speaking or understanding others (aphasia).
6️⃣ Developmental delays.
7️⃣ Involuntary movements.

These symptoms can be triggered by exercise, crying, coughing, straining or fever.

You should seek immediate medical attention, if you notice any signs or symptoms of a stroke or TIA, even if they seem to fluctuate or disappear.

Think “FAST” and do the following:

1️⃣ Face: Ask the person to smile. Does one side of the face droop?
2️⃣ Arms: Ask the person to raise both arms. Does one arm drift downward? Or is one arm unable to rise up?
3️⃣ Speech: Ask the person to repeat a simple phrase. Is his or her speech slurred or strange?
4️⃣ Time: If you observe any of these signs, call 999/912/911 immediately for emergency medical treatment.

#soshereforyou #nevergiveup #stroke #strokesurvivor #strokeawareness #awareness #moyamoya #moyamoyadisease  #strokehasnoagelimit #strokerehab #ischemicstroke #haemorrhagicstroke #tiastroke #helpandsupport #facebook #twitter #instagram #support #children #adults #socialmedia

Pacemaker Club


A pacemaker is a small device about the size of a matchbox or smaller that weighs 20 to 50g. It consists of a pulse generator, which has a battery and a tiny computer circuit, and 1 or more wires known as pacing leads, which attach to your heart. The pulse generator emits electrical impulses through the wires to your heart.

The rate at which the electrical impulses are sent out is called the pacing rate. Almost all modern pacemakers work on demand. This means they can be programmed to adjust the discharge rate in response to your body’s needs. If the pacemaker senses that your heart has missed a beat or is beating too slowly, it sends signals at a steady rate. If it senses that your heart is beating normally by itself, it doesn’t send out any signals.

Before pacemaker surgery.

Most pacemakers have a special sensor that recognises body movement or your breathing rate. This allows them to speed up the discharge rate when you’re active. Doctors describe this as rate responsive.


The heart is essentially a pump made of muscle, which is controlled by electrical signals.

These signals can become disrupted for several reasons, which can lead to a number of potentially dangerous heart conditions, such as:

♥️ An abnormally slow heartbeat (bradycardia).

❤️ An abnormally fast heartbeat (tachycardia).

❤️ Heart block (where your heart beats irregularly because the electrical signals that control your heartbeat aren’t transmitted properly).

❤️ Cardiac arrest (when a problem with the heart’s electrical signals cause the heart to stop beating altogether).

After pacemaker surgery.


Having a pacemaker implanted is a relatively straightforward process. It’s usually carried out under local anaesthetic, which means you’ll be awake during the procedure. The generator is usually placed under the skin near the collarbone on the left side of the chest. The generator is attached to a wire that’s guided through a blood vessel to the heart. The procedure usually takes about an hour, and most people are able to leave hospital on the same day or a day after surgery.


You should be able to return to normal physical activities soon after surgery. As a precaution, it’s usually recommended that strenuous activities are avoided for around 4 to 6 weeks after having a pacemaker fitted. After this, you should be able to do most activities and sports.

Pacemaker surgery, now nicely healed with some obvious scarring 👍🏻

You’ll be able to feel the pacemaker, but you’ll soon get used to it. It may seem a bit heavy at first, and may feel uncomfortable when you lie in certain positions. You’ll need to attend regular check-ups to make sure your pacemaker is working properly.

Most pacemakers store information about your natural heart rhythms. When you have follow-up appointments, your doctor can retrieve this information and use it to check how well your heart and the pacemaker are working.

Lee, today with his nicely healed pacemaker scar 👏🏻

SOS on Linktree

You can now find all of the SOS – Survivors of Stroke website links together on Linktree. You don’t need to sign up, just click the Linktree web link below and then select which site you would like to visit, easy as that

#SOSHereForYou #NeverGiveUp #StrokeHasNoAgeLimit

What is a Brain AVM??

A brain arteriovenous malformation or AVM for short, is a tangle of abnormal blood vessels connecting arteries and veins in the brain.

These arteries are responsible for taking oxygen-rich blood from the heart to the brain. Veins carry the oxygen-depleted blood back to the lungs and heart but having a brain AVM can cause disruption to this vital process.

So, How Common Is This Condition?

Believe it or not, it’s a surprisingly rare condition with fewer than 20,000 cases per year in UK.

Does AVM Diagnosis Require a Lab Test Or Imaging?

The size, shape and location of brain AVMs can be detected using imaging tests such as: MRI (magnetic resonance imaging) CT (computed tomography) Cerebral Angiogram MRA (magnetic resonance angiography

Is AVM a Treatable Condition?

AVM is typically considered curable, if the entire ‘nidus’ or tangled blood vessels where arteries and veins connect are removed or disrupted

What Is The Recovery Time?

Like most strokes, recovery can either take up to 7+ years or be lifelong.

So What Causes AVM To Happen?

The exact cause is unknown but it is usually a congenital condition. Most commonly observed symptoms include headache and seizures with surgery being the most commonly suggested treatment option.

Like Ischemic and Haemorrhagic strokes. The younger generation can also experience Brain AVM (Arteriovenous Malformation) attacks.

#SOSHereForYou #NeverGiveUp

Blog at

Up ↑