Let’s Meet!

If you’re a member of our Facebook group (Ed: If you’re not, you should be! You’re missing out on a lot of great stuff that can help in your recovery) you may have seen a lot of talk recently surrounding the topic of meetups.

Meetups of survivors, families, lifesavers have been happening for a while now, usually arranged ad hoc through the SCA UK site. I have yet to hear anything but positive feedback from those who have attended,

Indeed, meetups were becoming so common, that we decided to set up a group to assist in coordinating, sharing good practice and learning from each other. This small group work under the banner of “SCA UK Regions”.

In case you were not aware, we now have representatives for most of the regions in the UK, so if you fancy arranging a meetup, or indeed have any queries surrounding what is happening in your region, consider dropping your local representative a private message. If they don’t know the answer I’m sure they will be able to identify someone who does.

The list of regional representatives can be found here.

Anyway, that’s not my sole reason for this article, I also want to tell you about the recent meetup that took place in Dalkeith, Mid Lothian on Saturday 18th January 2020.

How did this come about? I was contacted by Fay, a member of the group who we know from a previous meetup Fay had arranged to meet with another survivor, Scott… guess what, who we knew from a previous meet up. Fay suggested to me that we could maybe open this up to any other members of the group who fancies coming along.

Fay and Scott had agreed to meet at a Wetherspoons in Dalkeith , a place they had met before . A perfect venue, Town centre and easily accessible by bus and car. So with a location agreed and a date we just needed a time. 12:30 seemed to be a practical time of day and that’s what we set it at.

I created an event in the Events section of the SCA UK Facebook group and that was that. We very quickly got some response with several people interested or marked as going.

From my previous experience, if there are a few people going, I prefer to create a private group on Messenger. This allows people to be a bit more relaxed and have the opportunity to ask any questions they may have in a more private arena rather than on Facebook. It also encourages those intent on attending to chat about it online, it’s a really good ice breaker.

We are nearly 4 years since Susans SCA and it’s important for us to remember what a huge step it can be for survivors, as well as their families, to even think about meeting others. Through meetups arranged through Facebook, Susan and I have ridden that hurdle and have had the pleasure of meeting so many survivors and their families.

Taking that first jump can be the hardest, as with anything that is foreign to us. But it is so worthwhile. I have yet to hear any negative feedback on meeting like-minded people.

So off we went on the Saturday. We were expecting around 11 survivors and also family members in addition to this. As with everything, people may not manage to make it, for whatever reason. That’s okay though, these are informal meetups, nothing fancy and no pressure. We eventually found the pub and were met by a group of familiar, and some not so familiar, happy smiling faces.

The main, initial thing I find about meetups is how easy it is to get on with everyone. Why is that? I think I know the answer, we all have one thing in common, some could call it the Elephant in the room. Something that your friends and family know about, but are not sure whether they should talk about it. It’s different when you go to meetups. We all have driven a similar path, and have one thing in common. and that is apparent anytime I speak to a survivor or partner of a survivor. No icebreaker required. I am sure the Messenger chat before the day also assists with this.

We stayed and chatted for 3 hours or so everyone having similar, but slightly different stories. There was nine of us in total, a fine number, of varying ages and all with various stories to tell. As we connected I listened around and could hear familar things being said…

  • That’s how I feel
  • That’s what happened to me
  • I’ve never met anyone else before…
  • Have you been on holiday?
  • Do you exercise?
  • I’m scared too…

I could go on.

We all have one thing in common, and sharing experiences appears so valuable in assisting with recovery.

  • Have you got an ICD?
  • Do you have a monitor?
  • Has it gone off?
  • Was it sore?

I’m sure survivors are reading this with a wry grin on their face. All this will sound familiar. But what about family members/lifesavers…

  • Are you okay?
  • I worry about
  • Leaving them alone
  • I wake up and check they are okay
  • I get nervous when I’ve not heard from them.

If you are reading this and thinking all these questions and points are familiar, that’s because when you meet up, you are with people who “Get it”, who have experienced similar to you and who are also now living the new normal.

We said our farewells and I asked those attending to drop me a few lines on how they felt the meet up went.

Here is what they had to say:

I would like to thank all you guys whom I met for the first time last week. As an SCA survivor, it’s difficult sometimes dealing with the emotions with what we have been through. It was terrific to meet fellow survivors and spouses. This was the first time I had been to a meet and also the first time I had met anyone who had also survived. Is so glad that I did, it was terrific meeting all you guys and hearing your own individual stories and how you are recovering, also terrific to meet the partners and hear things from their perspective. All in all, it was a great meet and for anyone out there who is maybe apprehensive, then please put that behind you and get to a meet, it will inspire you and give you a great insight into others in the same boat

Chris, SCA Survivor

I jumped at the chance to attend my first meet up with fellow survivors that understand my wife is also a stroke survivor and to be able to talk to others in the same boat is a very uplifting experience, we appreciate the fact that we’re all different about how we approach what has happened to us but I would urge anyone thinking about attending a meet up to please go along x

Scott, SCA Survivor

It took me 18 months post SCA to find this group. We plucked up the courage to go to the GWR event a month later. It was a revelation for both me (the survivor) and him (my hero). We have been to every meetup that we can since -­ Edinburgh; Rutland; Newcastle upon Tyne; Dalkeith. we have made life-­long friends with folk who totally get us. Put simply GO, you will never regret it!

Fay, SCA Survivor

It was my first meet up and first time meeting other survivors. I was looking forward to it beforehand, especially as it was local. Overall a great experience and safe place to share stories as everyone can relate

Ryan, SCA Survivor

Hopefully, this will give you an insight into one of the meetups arranged by Sudden Cardiac Arrest UK members.

The group is 5 years old this year and what better way to celebrate than arranging a mass meetups, all over the country.

Put Saturday 2nd May 2020 in your diary and look out for meetups being arranged in your area of the country during the afternoon on that date. You can always click on the events tab on the top of the Facebook page and it will highlight what meetups are currently arranged, where and when.

We look forward to meeting again, on 2nd May 2020 to celebrate being amazing people, survivors, lifesavers, families and friends.

You are Not Alone!

…and some pics from other recent meetups…

Stowmarket, January 2020
Bath, Feb 2020
London, January 2020

Observations from an SCA survivor with Ted Gulloyen

In this episode, Paul talks with cardiac arrest survivor and social psychologist Ted Guloien.

Since his arrest during a half-marathon Ted has made many insightful and wise posts relating to his and others recovery.

No photo description available.

He has recently collated them and published them as a pamphlet (as he calls it) titled “Observations of a Sudden Cardiac Arrest Survivor or What I wish I’d been told when I was discharged“.

A very interesting conversation and associated publication which is available from Amazon and SCA Facebook groups.

Available to listen on the link below or Spotify, Apple , Google, YouTube and your favourite podcast player.

If you enjoyed this podcast please do leave a positive review on Apple or other podcast providers as it helps us to spread the word.

Presented by Paul Swindell and edited by Matt Nielson. Recorded November 2019

Ted mentions an obituary he wrote for another survivor that he didn’t know but felt a bond with. Here it is…

I didn’t know Richard Greidanus, but I miss him

I didn’t know Richard Greidanus. We lived about 100 kilometres away from each other; he in Ancaster and I in east Toronto. And Richard was about 5 years younger than I. But we were both avid runners.

In fact, we both ran Hamilton’s Around the Bay 30k road race in 2004 and then, in 2005, ran the Mississauga Marathon. Five years later, Richard and I both ran the ultimate reward for runners, the Boston Marathon. It was my fifth and Richard’s second Boston Marathon. And while we never ran together or even knew each other, it is possible we crossed paths or saw each other somewhere over the course of those events. At least I’d like to think so.

I didn’t know Richard as the son, husband, father, friend and business executive that he was for many others in the Hamilton area; I only knew Richard through our shared experience of being runners. But Richard and I did have something else in common. We both raced in the Road2Hope half marathon that ends in Hamilton’s beautiful Confederation Park. Unlike those other races we ran, we didn’t run this particular half-marathon at the same time.

In fact, we ran it a year apart, but for one day. I ran the race on November 3rd 2013 and Richard the following year, on November 2nd. Richard and I both collapsed near the finish line of our respective races, with my heart stopping some 250 metres from the finish and Richard’s a mere 10 metres from the line.

We both promptly received medical attention and were rushed to Hamilton General Hospital. I survived. Richard, sadly, did not. I first learned of Richard’s death on the one-year anniversary of my own cardiac arrest in Confederation Park. I had driven to Hamilton to find the spot where I fell by using the data from the GPS watch I was wearing during the race. I thought that being at that exact spot might help me recall something about what happened there a year ago. It didn’t. Deprived of oxygen by my fibrillating heart, that part of my brain responsible for being aware of the heart-stopping events shut down before I hit the path I was running on. As I was walking back to my car, I received an email from a running partner in Toronto with a link to the CBC story about the runner who died running the half-marathon the day before. That runner was Richard. Like me, Richard was doing something he obviously loved doing. And if his last moments were anything like mine on that day in November, Richard would have felt the alternating warmth of the sun through his running clothes and the coolness of the autumn air in the shade from the trees bordering the path as he ran toward the finish line.

With sparkling Lake Ontario peeking through the bushes to his left, he would have heard the excitement of the spectators and felt the chatter and camaraderie of the ever-changing cohort of runners in his proximity as he passed them, and they him. His legs tired and his body exhausted from the continuous effort, he would have felt a surge of renewed strength as he sensed the approaching finish. At that point, he might have picked up the pace a bit and started his sprint homeward. He may even have felt that overwhelming sense of joy that runners sometimes experience, that love of being alive and being in love with life when the physical struggle is nearly over and the goal is within reach.

That’s how it was for me, about a quarter of a kilometre away from completing the race. I can only guess at the joy Richard must have felt a mere 10 metres from the finish line. And then, before I even knew I was about to fall, I lost consciousness. If Rick was here today, he’d probably look at me and soberly say, “Ted, I only beat you by 200 metres or so. That’s nothing. You’ll do better the next time.”, and then swap stories about our half-marathon experiences.

I understand Rick was that kind of guy. He’s been described as a good man, as being generous, supportive and caring, and as a positive mentor. He was kind-hearted and patient, his running acquaintances say, and selfless. If only Rick was here today, I could talk to him about how hard it’s been to reconcile my runner’s heart failing me without warning during that race. I’d ask his advice about how to get my confidence back after such a monumental physical and psychological let down.

 I would share with him the obdurate sense of loss I feel about not being able to run like I used to. I believe he would understand like no one else could. I didn’t know Richard Greidanus, yet if it’s possible to truly miss someone you’ve never met, I miss Rick. Like many others, I wish he was here today to offer some words of encouragement and help us move, or run, forward.

Image by Leandro De Carvalho from Pixabay

Sequelae, common issues post cardiac arrest

In episode #022 Paul talks about cardiac arrest sequelae.

Sequelae is not a word that many people are familiar with, and even though it is very pertinent to sudden cardiac arrest survivors it’s probably not one they would have heard of before. It simply means a condition which is the consequence of a previous disease or injury and in survivors this could be down to a number of factors.

Many survivors report having a wide range of “symptoms” post arrest and often it is not clear or explained as to why they happen. Paul talks about the impact that anoxia/hypoxia can have on the brain and the issues that it can cause and the results of a survey which shows the most common issues experienced by the members of Sudden Cardiuac Arrest UK.

More information on this subject can be found on our Sequelae page.

Available to listen on the link below or Spotify, Apple , Google and your favourite podcast player.

Presented by Paul Swindell and edited by Matt Nielson. Recorded October 2019