Pacemaker Festival?

Sorry if I had to choose ......................

by IAN MC - 2024-06-10 13:39:26

I think I would give the Pacemaker festival a miss as I hope to go to the blonde festival that night !

Ian

Pacemaker get togethers

by Selwyn - 2024-06-10 14:28:43

This sounds like a good idea. Perhaps festival is the wrong word?

What is not to like about Texas?

I have attended a national  Lymphoma Conference ( Organised by https://lymphoma-action.org.uk ). They had guest, expert speakers. Future therapies.   Discussion groups, Special groups for different lymphomas, a lunch and a raffle ( Which I won and resulted in a weekend in a spa hotel for two!). I was invited to talk to our local cancer group about my variious diagnosistic mishaps as an outcome from the Conference.  I found the whole conference quite worth while. 

I expect you would have to see what the calling was for such a conference. If there was a calling, an organising committee and invites.  I wonder whether it would be a tax deductible expense?

Thank you for the idea. 

Pacemaker Festival

by skigrl3 - 2024-06-10 23:11:16

A Pacemaker Festival is an interesting concept for sure. I have still not encountered anyone with a pacemaker......that I know of. There might be some among us and we don't even know.  :)

skigrl3

by piglet22 - 2024-06-11 05:44:41

Pacemakers are more common than you think.

As well as mine, my cousin's husband has one, her mother had one and two gentlemen I know in the close neighbourhood have them.

So that's 4 males and one female.

My cousin's husband had a particularly bad time getting a diagnosis being shunted around various specialists.

He was having blackouts and having episodes of unconsciousness up to 20 seconds. My money was always on a rhythm problem.

meet up

by Tracey_E - 2024-06-11 09:32:25

One of the goals of the new site owners is to plan meet ups! If you have suggestions for how it could work, please share and I will pass it along. 

There is a Facebook page for cardiac athletes (any cardiac condition, though there are quite a few pacers there) and they sometimes pick a race for a meet. 

Interesting replies - Thank you!

by MiracleBaby78 - 2024-06-11 16:42:41

@Tracey_E, are you referring to new site owners of Pacemakerclub.com?  Like I said, I haven't been on this site for quite some time, which may be evident now. :)  As far as how it could work, I think that Pacemaker club should have an active YT, FB & IG channel, if it doesn't already: FB for the older crowd and IG for the younger as I hear many of the younger aged "kids" consider FB for "old" people (i.e. 35+). 

Have you seen Peet Montzingo on Youtube?  He's a 6'-something red-headed biological son of two little people.  His videos are fun, engaging and hilarious.  Most of them involve his mom, Vickie, who is 4'8.  He's very passionate about little-people and has shown videos of him attending a little-people's conference with his family.  He also has a recent video of him attending a Ginger Fest for red-headed people.  I think both of those videos will give ideas on how to promote Pacemaker awareness and/or people with pacemakers. 

Like, for me, I'm short (5'0) and when I was a kid, I had my pacemaker in my side and so at school at times I would accidentallly hit it with the door handle when using my hips to open the door (my hands were full) while leaving the school.  Many of us who have had a pacemaker for many years know the crazy things we have to consider that others don't.  Like, "what will happen if I sit in that massage chair?", "I need to switch ears to use my phone...", and "will I set off the alarm at the mall?"    

I mean, non-serious videos in the mix of a few serious here and there will attract people to the page and bring more awareness to the pacemaker environment and then will attract people to attend events.  You have to start with attracting people first.  Then once you have enough engagement (you want more engagement than just merely "views") you can start to plan events.  Find out where the people who are watching you are from by the content.  You have to have intentionality to what you share so that you will know how to plan the next step.  But you have to have your goals established before you know what your intention is and how to plan your content.  You also have to make sure you have the people (or person) in place to manage it all.  I'm sure you already know that, though, so sorry if I'm singing to the choir.  Anyway, an event sounds great, BUT you can't have an event UNTIL you create enough interest (via the various channels).  

Just a few ideas

by Gemita - 2024-06-11 18:24:11

I think we could run a new Poll on this to get an indication of what members would like, how they could get involved to raise more awareness of pacemakers/ICDs and of course of the Pacemaker Club.  

I wouldn't want to place members in age categories.  I would rather assess which events they might be interested in and categorize these, for example:-

festivals - music, dancing, concerts, plays etc.

sporting events - short distance runs, marathons, tennis, golf, cycling, swimming

fun days out for the whole family 

support groups for pacemaker recipients

My hospital already runs support groups for pacemaker/cardiology patients in the UK.  It is a great way of keeping patients and their relatives informed about pacemaker/ICD matters and raising awareness as well as meeting others with devices.

By the way, I wouldn't assume that everyone will quickly understand abbreviations:  FB, IG, YT.   I know FB because I am a member, but the other two I had to think about even though I use You Tube often enough.  I wouldn't perhaps call the 35+ folks old either.   Might cause some offence and put them off responding

I'm in the "old" crowd - over 35+

by MiracleBaby78 - 2024-06-11 22:15:38

And I don't consider us old, either, but we are the generation that went through Netscape, AOL & Myspace before transitioning to Facebook.  The younger crowd who wouldn't have experienced much, if any of that went straight to Instagram (IG) and that's their main social media platform.  Let's not assume the worst and just know that we all have our reasons for saying things the way we do and most often than not, what we say is for good rather than evil.  

I don't agree with the polls

by MiracleBaby78 - 2024-06-11 22:20:00

I don't think we need polls.  I just saw that ForHearts Worldwid partnered with Pacemaker Club, which could really help with something like this.  Now that they are parnered together, then they could get an indication on what people would like based on the responses they get over time from their Facebook, Instagram, and Youtube posts/reels/videos.

Polls/Surveys

by Gemita - 2024-06-12 03:08:34

MiracleBaby,

Perhaps I was being over-sensitive about placing the over 35s in the "old" category.  Apologies for that.  At 75 years of age, I wonder where I would be placed by the youngsters.

I feel polls/surveys are a good way of quickly finding out what we would like to see more of and ForHearts themselves suggested they might run a survey at some stage.  Since ForHearts are active on other platforms, polls/surveys might be very helpful and give an early indication of the level of interest for a particular meeting event or idea. I know ForHearts want us all to get involved and to hear from us how we would like to develop the Club going forward, so your post has been timely.   Thank you for your helpful comments which will be passed on

Interesting info

by MiracleBaby78 - 2024-06-13 01:18:00

Regarding the Ginger/Blonde Festivals, I did a little research and found out that only 2% of the world population is natural blonde.  About .5% is redheaded.  That got me to wondering about the percentage of people with pacemakers.  I couldn't find a clear-cut answer, but I did find that approx. three million Americans (out of 333.29 Million) have pacemakers, which equates to 0.90% of Americans who have one.