October 19, 2023 • 25 mins
PLEASE READ!
Please note that The Post Concussion Podcast has been closed for new episodes as of early 2024. Concussion Connect is also closed.
Thank you to everyone who was so supportive over the years and I hope these episodes continue to help others as they come across them!
I have set on a new venture (with a pen name - Izzy Barry) you can learn more about here
https://izzybarry.substack.com/
--
Ever felt lost and alone after a trauma? This episode brings to light the transformative power of support groups for survivors of post concussion syndrome. Join us for an enlightening conversation with our esteemed guests, Bo and Pam, who share their personal journey from solitude to strength, and how support groups played a pivotal role in their recovery.
We delve into the crucial role such groups play in the lives of brain injury survivors, and how they serve as a gateway to vital resources. Learn about the exploration of varied types of support groups, from traditional to open-format, and the importance of finding one that accommodates your needs. So, tune in, and let's shine a light on this crucial lifeline for concussion survivors.
Find Show Notes, Transcript & More: https://postconcussioninc.com/podcast
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Bella (00:03):
Hi everyone.
I'm your host, Bella Paige, andafter suffering from post
concussion syndrome for years,it was time to do something
about it.
So welcome to the PostConcussion Podcast, where we dig
deep into life when it doesn'tgo back to normal.
Be sure to share the podcastand join our support network,
concussion Connect.
Let's make this invisibleinjury become visible.
(00:25):
The post concussion podcast isstrictly an information podcast
about concussions and postconcussion syndrome.
It does not provide norsubstitute for professional
medical advice, diagnosis ortreatment.
Always seek the advice of yourphysician or another qualified
(00:46):
health provider with anyquestions you may have regarding
a medical condition.
Never disregard professionalmedical advice or delay in
seeking it because of somethingyou have heard on this podcast.
The opinions expressed in thispodcast are simply intended to
spark discussion aboutconcussions and post concussion
syndrome.
(01:06):
Welcome to episode number 120of the Post Concussion Podcast
with myself, Bella Paige andtoday's guests Bo Nanna and
repeat guest Pam Treischel.
Bo was raised in the MidwesternUnited States.
Bo enlisted in the Marine Corpsafter high school.
While serving in Hawaii, he wasselected for a scholarship
program at the University ofWashington.
(01:27):
Then, after graduation in 1978,served as an infantry officer
in California and Okinawa, japan.
Leaving active duty.
He worked in sales, marketingand training in the
pharmaceutical and biotechindustries, as well as health
related non-profit organizations.
He was an avid sailor,bicyclist, scoop instructor and
(01:47):
coast guard licensed master,seriously injured in a 2008
bicycling accident.
He admits doing everything 100%wrong for four years until he
discovered a TBI support group.
Now he facilitates a weeklyonline group from home on the
Olympic Peninsula of Washingtonwith his wife, a talented baker,
and their very bossy Scottishterrier.
(02:08):
They look forward to the Krakenreturning the Stanley Cup to
Seattle.
Pam spent most of herprofessional career in credit
unions, call center managementand consulting.
When not working, she soughtadventures in the Pacific
Northwest of Washington state,which led to her passion of
scuba diving and underwaterphotography.
In November of 2020, Pamsustained a head injury while
(02:30):
gearing up to go scuba diving.
When she came to, sheimmediately went to tell her
dive buddy what had occurred,but amnesia said in and her
memory of the incident waserased.
Suffering from scary out of theblue symptoms, she tried to
blindly navigate the medicalsystem.
Meanwhile, she sustained asecond impact without realizing
it, had an unnecessary biopsyand received several incorrect
(02:51):
diagnosis along the way.
Six months later, she slowlyregained her memory and she was
told it was just a concussion,she'd be fine and could resume
diving again in a few weeks.
But that was not the case andeventually her mental health
deteriorated and she intuitivelyknew there was something still
wrong and took it upon herselfto dig further.
Fast forward, pam discoveredpost concussion Inc the podcast
(03:13):
and concussion connect, andrealized she was not alone.
She still is learning to dealwith chronic conditions because
of these injuries and would belost without the many advocates
within her various supportgroups.
They've been an integral partof her journey this far.
Welcome Pam and Bo.
Thank you.
Bella.
So today we're going to focuson something that I've actually
wanted to talk about for a whilenow but never really thought
(03:36):
about how extensively we shouldtalk about it until Pam
mentioned that it's something weshould really talk about, and
that's support groups.
I run support groups and youknow they're really important
and sometimes we don't realizehow important they are for
survivors.
But what I want to start withis the benefits of support
groups and why survivors shouldeven join them.
(03:57):
Pam, do you want to tell us, orBo, a little bit about why
someone should join a supportgroup?
Pam (04:04):
Sure, a lot of times on this journey you're very lost
and you feel very alone and youmay not realize it.
But joining a group of peoplelike-minded with similar
challenges, similar objectives,feelings, experiences, it really
helps you feel included,because part of this journey is
(04:27):
very lonely and isolating andpart of the bad is almost a
necessity as you heal.
So having a support groupreally gives you a family, a
community.
You know, because, like for me,my scuba diving I had this huge
community and can't scuba dive,so this was kind of a really
(04:48):
nice replacement and verypleasantly surprised too in just
how helpful it was.
I think one of the biggestbenefits is the resources that
you get from a group that havebeen through a lot of what maybe
you're just starting to gothrough.
I know with your podcast andCushion Connect I gained a ton
(05:10):
of different resources with theClatch group.
That both facilitates.
It was incredible I've gottenbetter medical advice from some
of the individuals there than Ihave from actual doctors, so
it's been very beneficial fromthat perspective.
Bo (05:28):
Well said, pam.
I think you really hit on somekeys.
I didn't find a support groupuntil four years after my
accident and those four yearswere pretty miserable.
I did almost everything wrongas far as taking care of my
brain and, like a lot of people,denial and resistance and anger
(05:52):
, but when I found I stumbledinto a support group just I mean
this serendipitous I honestlystarted to cry when I heard
other people talking aboutthings that I had been going
through.
In our support group we havepeople who say that our little
band is basically their families.
(06:13):
A lot of families becomealienated.
A lot of friends becomealienated because you can't go
out and go dancing and partyingwith your old pals, and so the
support group becomes a secondnot even a secondary family,
kind of a primary, a differentprimary family.
Bella (06:32):
I really love what both of you said.
Pam, you talked about theloneliness and I think that is
huge.
It's something I dealt with fora really long time.
I kind of felt like I was theonly person on the planet going
through what I was going through, and I think our brains also do
that to ourselves.
Like when you get come mentallyill and deal with things on top
of illness, you just feel likehow could anybody else be going
(06:54):
through this?
Because where are they Like?
Where are these people?
And I really liked your idea ofreplacement or a substitution
for, like your diving group,because sometimes we need
somewhere where we can talkabout things that are going on
in our lives and sometimesthat's really hard with friends
that aren't ill and friends thatdon't get it, because you don't
want to be the only persontalking about how sick you are.
(07:15):
I am very lucky to have a fewfriends that I can sit and talk
about me being ill for an hourand they know so much about it
that they know how to respondenough.
Sometimes they Google thingswhen we talk, but that's okay,
but that's really rare and Ididn't have that right away.
That took me a long time tofind people like that, where you
go into a support group andit's filled with people who
(07:37):
understand you.
It's filled with people who canjust talk about everything that
you have been thinking aboutand you don't even realize that
there's other people that get itjust as much as you want them
to.
You know, bo, you mentionedsomething really important that
I want to talk about next, andthat's the challenges of finding
support groups or even thinkingof joining.
(07:57):
You said four years I neverjoined one until I started one.
Bo (08:04):
Too good a way to do it.
Bella (08:06):
So I actually spent probably six months joining
different support groups beforeI started mine and we're going
to talk about that later butthat was the first time I ever
was like.
I was like I want to start one,but like I didn't even think of
, like oh, there's so many outthere that I should have been in
these all this time talkingwith others, and that would have
really helped me throughout myjourney.
But I really want to talk aboutthe challenges of finding
(08:29):
support groups, because we saysupport group Great, where do
you start?
And so, pam, do you want tobegin with that?
Pam (08:36):
Yeah, I think that's a huge issue.
So I think I was two years.
Well, I was about a year and ahalf in to my journey but nobody
ever told me about supportgroups.
It was me doing the research,me listening to your podcast,
actually learning aboutConcussion Connect, and that was
kind of my first exposure tosupport groups.
(08:58):
I was still worth trying towork at the time.
It's a challenge sometimes tofind the right time fit because
the time slot wasn't workinggreat for me.
I tried a couple others, youknow, and some of them are set
up differently but nobody tellsyou.
I mean, you get nothing from atleast I got nothing from
medical community.
(09:18):
It wasn't until I hit a wall inan emotional bad spot and I
reached out to brain injuryAlliance of Washington and Amy
she was the one that recommendedBo's group so kind of reached
out to him and I knew I foundthe right group.
Number one he was a scuba diverand here I was facing this, you
(09:41):
know, maybe never being able todive again.
So I thought, wow, he'd kind ofunderstand what that was about.
And then, secondly, very firstmeeting, he's like, oh, what was
I talking about?
And what you know, what's thatword?
And I'm like, oh, my goodness,that's me in a nutshell.
So it just felt.
It felt like I was in the rightspot and I feel comfortable
(10:03):
saying that because we've hadother people see within the
group.
But yeah, it's just nobodythere's not enough places that
can tell you about a supportgroup.
It just it's kind of there's avoid, just like there was a void
for me finding out about postconcussions, you know syndrome,
or persistent concussionssymptoms whatever you want to
(10:26):
call it, I have no preference.
Bella (10:28):
I have gotten attacked a few times for using the wrong
term, but I don't think itmatters.
Whatever you want to call yourillness, you can call it.
If you want to call it a messedup, ever concussion or my brain
hurts syndrome, whatever.
Pam (10:42):
It's all the same.
Bella (10:44):
It's all the same thing.
So it's challenging and, likeyou said, you've reached out to
your brain injury alliance.
That can be a really great wayto find a support group is
reaching out through local braininjury societies.
Every single state in the USAdoes have a brain injury society
.
I know this is a fact.
Canada is also the same.
There's one, there's multiplein certain provinces, not sure
(11:07):
about other countries, but oneof the benefits is that a lot of
these groups are virtual, soyou can certainly join at any
time.
I know when you mentioned thetimes, that's a big thing
because I've struggled because Ihave people globally like over
in Europe, people in Australia,people in the States in
different time zones all sayinglet's join support group and I'm
like, okay.
(11:28):
So trying to find times thatworks for everyone is always a
challenge, but it is somethingthat can be beneficial about
joining a different time zonesupport group.
Maybe night works better foryou if you do still work, and
things like that.
So that is really somethingwonderful.
There's also in-person supportgroups, but we're going to talk
about the structure of supportgroups after.
(11:50):
But do you find challenges withfinding a support group?
Because I find a lot of people.
They don't really know where tolook.
I think that is definitely afirst step is usually brain
injury societies.
But some people I think that'sa refer from concussions feel
like they're not the right fitbecause they think stroke, they
think traumatic brain injury.
But that's often not the case.
Absolutely, bill.
Bo (12:12):
I think the first step- at least for me, was coming to the
realization that I wasn't goingto be able to do this alone and
things were not good and Ineeded help.
And so for I would say for atleast the first two years, I was
well, I can beat this, I'mtough, I can overcome.
(12:35):
So the first step for me wasjust realizing that my brain is
not an enemy I can overwhelm.
I'm going to need some help andfor the first 50 years of my
life I would have, I mean,support groups.
Those are for other people whoneed help, not me.
I think getting over thathurdle was my first step and it
(12:57):
was proven to be a really dumbthought the instant I walked
into the support group and waswelcomed and was understood and
just evaporated and I'm likethese are my people, I need to
be here.
But finding it, I mean it was.
It was happenstance really,because when somebody goes to an
(13:20):
emergency room with aconcussion, I don't think they
know about support groups.
Even my neurologist nevermentioned support groups.
I would say nine times out often it's that referral via the
way Pam came or somebody justcools support group themselves.
(13:42):
I wish there were better way.
I wish we could get our messageout there that these are
available, and then you know theother considerations you guys
talked about are accurate too.
Sometimes.
Sometimes there's not a rightfit.
I was on one support group.
The time thing is critical too.
I was on the support group twoor three months ago.
(14:03):
A woman joined the group it wasa TBI support group but she had
I can't remember she had sometotally unrelated but serious
kidney disease and she was justshe was looking for help and
this happened to be at an hour.
She was on the East Coast andwe were on the West Coast and
she said I just need help.
So we kind of droppedeverything and talked to her and
(14:27):
so, yeah, the time.
There's so many criticalfactors.
But my message would be thereare support groups out there.
They're just probably one thatwill fit.
And we have people come in andspend an hour or so or even 10
or 20 minutes and leave.
That's okay.
I mean, virtual is easy.
(14:48):
But we have people who comeback regularly every week.
The only thing as a facilitatorof a support group I will say
we now have people in multipletime zones.
So it's the challenge there.
When somebody asks me what timeis it, my first thought goes to
well, where are you?
Bella (15:07):
Yeah for sure.
Those are all really importantpoints and I do really want to
get into the structure ofsupport groups and the different
types of support groups thereare and how that can make a
different fit for everyone, butwe will talk about that after
(15:27):
the break.
Did you want to createawareness about concussions?
You can check out our entireclothing line through the link
in the episode description or goto our website,
postconcussioninccom and clickawareness merch from t-shirts,
sweaters, tank tops and multipledesigns, including the podcast.
Nothing mild about a concussionand more.
(15:49):
Make sure to pause this episoderight now and order yours
before you forget, just like Iwould Welcome back to the Post
Concussion Podcast with myself,Bella Paige and today's guests
Pam and Bo.
(16:25):
and so what I really wanted totalk about, is the structure.
It's something that I kind ofstudied, I guess, before I
started.
Mine is the structure, becausethere's different ways to run a
support group, so I'm going tolet you two take that on and
kind of talk about, you know,the different types of support
groups that are there.
Maybe some different structuresthere are that exist as well.
Pam (16:49):
I know one of the things I like about our current support
group is that you kind of getthe best of both worlds.
We have a weekly meeting.
It's more the family event, youknow, where we talk and share
and advise one another, ask eachother how are you doing?
What's going on this week foryou, anyone need help?
(17:10):
And then we also have a monthlymeeting where we invite guests
like yourself and there's moreof a theme and a topic and it's
more of a presentation to thegroup.
So I kind of like that.
You know, like you mentioned,kind of checking into different
ones to really as Bo put it findyour people and what really
(17:30):
resonates with you.
There's a lot of differentthings and you know there's some
big support groups out therewhere you know you kind of just
listen to people's storiesbecause they're so large, and
then there's other ones that arereally small and you can get
kind of a one-on-one withsomebody.
So yeah, there's a lot ofdifferent structure and you've
(17:53):
got to kind of figure out what'sgoing to work best for you and
what you truly enjoy the two.
Bo (18:01):
Well, the way I was introduced to support groups was
the kind of the I guess now Icall it the traditional support
group, where there's a subjectmatter or a presenter, you know,
oftentimes it was maybe anoccupational therapist or
someone who was familiar withbrain injury, talking about
getting back into the routine ofliving, and for several years
(18:25):
that was kind of what my supportgroup experience was, and then
with a Zoom it became a littleharder to do that, but it also
opened up the opportunities for,you know, those little more
wide open.
The one of the inspiration thegroup we have is I describe it
(18:46):
as free for all.
Somebody who's having a problemthat day we can talk about that
, and that kind of was inspiredby.
I've attended some supportgroups with NAMI, the National
Alliance for Mental Illness, Ithink, and they have very good
support groups specifically formental illness of all shapes and
(19:12):
sizes and causes.
And frankly, we have a lot ofpeople in the brain injury side
of things, in concussion side ofthings, who can benefit by some
of the NAMI support groups.
But anyway, they begin theirgroups usually by saying is
anybody in crisis?
And so that's kind of what wetry to do, is, you know, just
check in first thing, and how iseverybody doing?
(19:33):
One week somebody will have anupcoming social security hearing
that they need to attend, so wetalk them through that.
This week we have one of ourwonderful members going through
some therapy and we're going toactually have a little impromptu
group to send some mojo her wayso we can at least make her
(19:56):
smile.
There's a support group thatwill fit almost everybody, and
if you don't find that, thatbill of dibs starts your own.
Bella (20:05):
Yeah, pretty much, and I agree there is so many different
types.
Like the presenter type was thetype that wasn't for me it's
great to be a part of, like yousaid, like you have it not all
the time, but I wanted to talkabout all my problems and what I
was going through and I wantedto get help and where that's a
(20:27):
little bit of a different setup.
I know you'll learn a lot, butfor me that was like listening
to a podcast episode.
If I wanted to listen to aprofessional talk about a bunch
of things, then I could justlisten to a podcast where I
wanted a group, where, like yousaid, the open format is really
nice.
I used to have subjects for allmy support groups until
someone's like can we just talk?
And I'm like sure we start ourswith talking about our weeks
(20:50):
because we meet every week andeveryone's become quite close,
so kind of like what they'regoing through.
We work through things frommoving, job loss symptoms,
finding new jobs what kind ofjobs, I could even try to find
therapists, all those types ofthings.
So we talk about everything,which I think is really
important.
We talk about relationships too.
(21:11):
That's always a really big onewith partners, of survivors,
because there's a lot ofchallenges there.
So I like that too.
And sometimes a huge group iswhat you want, because maybe you
don't want to talk that much,maybe you're just not
comfortable with it.
So maybe sitting and listeningto a huge group is perfect,
because you just want to sitthere and listen and maybe type
a few things into a chat andyou'll still get some wonderful
(21:33):
resources from listening toothers and that can be really
beneficial as well.
And of course, there'sin-person support groups as well
that a lot of the brain injurysocieties do put on.
I've just never been to any ofthem.
But, like Thao mentionedearlier, one of the benefits of
the virtual support groups isyou can just cut out.
I tell people to come late, Itell people to come for half the
(21:54):
time.
You can come for what you need.
Maybe you only have half anhour that day, maybe a half an
hour on a screen is enough, andso you can just cut out and
disappear.
So some of those benefits arereally really nice and you can
just click, go, join in.
And sometimes the topics arenice because you can kind of
know what to expect.
Maybe you can prepare what youwant to ask about.
(22:15):
So those can be nice too, butit just shows that it's kind of
like the recommendation that Ihave for finding a talk
therapist.
It's the same recommendationthat I have for support groups.
Try them out.
You might not like one, but tryanother.
Same thing with talk therapistsyou talk to a therapist and they
rub you the wrong way.
Find another one, because therewill be one that you can
(22:36):
connect with.
But when you're ill and allthat, sometimes it takes a bit
of time and that's okay.
And, like Bo said, if you hateit, just close your screen.
Yeah, like nobody will beinsulted, it's okay.
You really know that you needhelp and you will find it where
you need it.
I think this is reallyimportant conversation.
To talk about support groups,kind of open up a little bit
(22:57):
more about that, it is okay.
You know there is sometimes thestigma of needing help.
I think that's really common,more for men than women, but it
is very common.
And so is there anything elseyou too would like to add before
we end today's episode?
Pam (23:12):
Well, I will touch on that denial part.
I will touch on that denialpart.
And Bo called me on it.
Bo definitely called me on it acouple of times, but even
before I joined it was like Idon't need this.
It's just that I've always beenthe one to fix things and I
couldn't fix this, I couldn'tmake this better, and it was
(23:32):
really accepting and letting goof that, and you do really have
to get beyond yourself sometimesin the way things were.
So, in addition, I just wouldlike to say thank you for
everything you've done and putout there.
You've been a huge resource tome on my journey and I
(23:53):
absolutely appreciate it.
Everything from you know, fromthe physical elements to the
mental side of it, you've justprovided a lot of great
resources.
So thank you.
Bo (24:06):
Absolutely yeah.
And one thing, Bella, youtouched on a little bit the
knowledge in the education part.
I still almost everybody.
I've learned everything I knowabout brain injury from people
I've encountered in supportgroups.
My neurologist said, yeah,you've got a brain injury.
And I said, well, what doesthat mean?
(24:27):
And he said, well, it is whatit is.
But everything subsequent tothat, everything I've learned
about myself, about my brain,about how it works, how it
doesn't work, has come fromothers and talking and listening
to others going through thesame stuff, and I will echo what
what Van says ConcussionConnect is just awesome.
(24:51):
I go through and listen to yourpast podcasts and look up the
subject, and I'm a hockey fan soI listened to all the hockey,
all the sports guys.
It's a great resource and Ithank you as well.
Bella (25:05):
Yeah, I want to thank you both so much for joining us
today and sharing yourexperience with support groups.
Absolutely, thank you forhaving me.
Need more than just thispodcast.
Be sure to check out ourwebsite postconcussioninccom to
see how we can help you in yourpost concussion life, from a
support network to one on onecoaching.
(25:27):
I believe life can get betterbecause I've lived through it.
Make sure you take it one dayat a time.
Hi everyone.
I'm your host, Bella Paige, andafter suffering from post
concussion syndrome for years,it was time to do something
about it.
So welcome to the PostConcussion Podcast, where we dig
deep into life when it doesn'tgo back to normal.
Be sure to share the podcastand join our support network,
concussion Connect.
Let's make this invisibleinjury become visible.
(00:25):
The post concussion podcast isstrictly an information podcast
about concussions and postconcussion syndrome.
It does not provide norsubstitute for professional
medical advice, diagnosis ortreatment.
Always seek the advice of yourphysician or another qualified
(00:46):
health provider with anyquestions you may have regarding
a medical condition.
Never disregard professionalmedical advice or delay in
seeking it because of somethingyou have heard on this podcast.
The opinions expressed in thispodcast are simply intended to
spark discussion aboutconcussions and post concussion
syndrome.
(01:06):
Welcome to episode number 120of the Post Concussion Podcast
with myself, Bella Paige andtoday's guests Bo Nanna and
repeat guest Pam Treischel.
Bo was raised in the MidwesternUnited States.
Bo enlisted in the Marine Corpsafter high school.
While serving in Hawaii, he wasselected for a scholarship
program at the University ofWashington.
(01:27):
Then, after graduation in 1978,served as an infantry officer
in California and Okinawa, japan.
Leaving active duty.
He worked in sales, marketingand training in the
pharmaceutical and biotechindustries, as well as health
related non-profit organizations.
He was an avid sailor,bicyclist, scoop instructor and
(01:47):
coast guard licensed master,seriously injured in a 2008
bicycling accident.
He admits doing everything 100%wrong for four years until he
discovered a TBI support group.
Now he facilitates a weeklyonline group from home on the
Olympic Peninsula of Washingtonwith his wife, a talented baker,
and their very bossy Scottishterrier.
(02:08):
They look forward to the Krakenreturning the Stanley Cup to
Seattle.
Pam spent most of herprofessional career in credit
unions, call center managementand consulting.
When not working, she soughtadventures in the Pacific
Northwest of Washington state,which led to her passion of
scuba diving and underwaterphotography.
In November of 2020, Pamsustained a head injury while
(02:30):
gearing up to go scuba diving.
When she came to, sheimmediately went to tell her
dive buddy what had occurred,but amnesia said in and her
memory of the incident waserased.
Suffering from scary out of theblue symptoms, she tried to
blindly navigate the medicalsystem.
Meanwhile, she sustained asecond impact without realizing
it, had an unnecessary biopsyand received several incorrect
(02:51):
diagnosis along the way.
Six months later, she slowlyregained her memory and she was
told it was just a concussion,she'd be fine and could resume
diving again in a few weeks.
But that was not the case andeventually her mental health
deteriorated and she intuitivelyknew there was something still
wrong and took it upon herselfto dig further.
Fast forward, pam discoveredpost concussion Inc the podcast
(03:13):
and concussion connect, andrealized she was not alone.
She still is learning to dealwith chronic conditions because
of these injuries and would belost without the many advocates
within her various supportgroups.
They've been an integral partof her journey this far.
Welcome Pam and Bo.
Thank you.
Bella.
So today we're going to focuson something that I've actually
wanted to talk about for a whilenow but never really thought
(03:36):
about how extensively we shouldtalk about it until Pam
mentioned that it's something weshould really talk about, and
that's support groups.
I run support groups and youknow they're really important
and sometimes we don't realizehow important they are for
survivors.
But what I want to start withis the benefits of support
groups and why survivors shouldeven join them.
(03:57):
Pam, do you want to tell us, orBo, a little bit about why
someone should join a supportgroup?
Pam (04:04):
Sure, a lot of times on this journey you're very lost
and you feel very alone and youmay not realize it.
But joining a group of peoplelike-minded with similar
challenges, similar objectives,feelings, experiences, it really
helps you feel included,because part of this journey is
(04:27):
very lonely and isolating andpart of the bad is almost a
necessity as you heal.
So having a support groupreally gives you a family, a
community.
You know, because, like for me,my scuba diving I had this huge
community and can't scuba dive,so this was kind of a really
(04:48):
nice replacement and verypleasantly surprised too in just
how helpful it was.
I think one of the biggestbenefits is the resources that
you get from a group that havebeen through a lot of what maybe
you're just starting to gothrough.
I know with your podcast andCushion Connect I gained a ton
(05:10):
of different resources with theClatch group.
That both facilitates.
It was incredible I've gottenbetter medical advice from some
of the individuals there than Ihave from actual doctors, so
it's been very beneficial fromthat perspective.
Bo (05:28):
Well said, pam.
I think you really hit on somekeys.
I didn't find a support groupuntil four years after my
accident and those four yearswere pretty miserable.
I did almost everything wrongas far as taking care of my
brain and, like a lot of people,denial and resistance and anger
(05:52):
, but when I found I stumbledinto a support group just I mean
this serendipitous I honestlystarted to cry when I heard
other people talking aboutthings that I had been going
through.
In our support group we havepeople who say that our little
band is basically their families.
(06:13):
A lot of families becomealienated.
A lot of friends becomealienated because you can't go
out and go dancing and partyingwith your old pals, and so the
support group becomes a secondnot even a secondary family,
kind of a primary, a differentprimary family.
Bella (06:32):
I really love what both of you said.
Pam, you talked about theloneliness and I think that is
huge.
It's something I dealt with fora really long time.
I kind of felt like I was theonly person on the planet going
through what I was going through, and I think our brains also do
that to ourselves.
Like when you get come mentallyill and deal with things on top
of illness, you just feel likehow could anybody else be going
(06:54):
through this?
Because where are they Like?
Where are these people?
And I really liked your idea ofreplacement or a substitution
for, like your diving group,because sometimes we need
somewhere where we can talkabout things that are going on
in our lives and sometimesthat's really hard with friends
that aren't ill and friends thatdon't get it, because you don't
want to be the only persontalking about how sick you are.
(07:15):
I am very lucky to have a fewfriends that I can sit and talk
about me being ill for an hourand they know so much about it
that they know how to respondenough.
Sometimes they Google thingswhen we talk, but that's okay,
but that's really rare and Ididn't have that right away.
That took me a long time tofind people like that, where you
go into a support group andit's filled with people who
(07:37):
understand you.
It's filled with people who canjust talk about everything that
you have been thinking aboutand you don't even realize that
there's other people that get itjust as much as you want them
to.
You know, bo, you mentionedsomething really important that
I want to talk about next, andthat's the challenges of finding
support groups or even thinkingof joining.
(07:57):
You said four years I neverjoined one until I started one.
Bo (08:04):
Too good a way to do it.
Bella (08:06):
So I actually spent probably six months joining
different support groups beforeI started mine and we're going
to talk about that later butthat was the first time I ever
was like.
I was like I want to start one,but like I didn't even think of
, like oh, there's so many outthere that I should have been in
these all this time talkingwith others, and that would have
really helped me throughout myjourney.
But I really want to talk aboutthe challenges of finding
(08:29):
support groups, because we saysupport group Great, where do
you start?
And so, pam, do you want tobegin with that?
Pam (08:36):
Yeah, I think that's a huge issue.
So I think I was two years.
Well, I was about a year and ahalf in to my journey but nobody
ever told me about supportgroups.
It was me doing the research,me listening to your podcast,
actually learning aboutConcussion Connect, and that was
kind of my first exposure tosupport groups.
(08:58):
I was still worth trying towork at the time.
It's a challenge sometimes tofind the right time fit because
the time slot wasn't workinggreat for me.
I tried a couple others, youknow, and some of them are set
up differently but nobody tellsyou.
I mean, you get nothing from atleast I got nothing from
medical community.
(09:18):
It wasn't until I hit a wall inan emotional bad spot and I
reached out to brain injuryAlliance of Washington and Amy
she was the one that recommendedBo's group so kind of reached
out to him and I knew I foundthe right group.
Number one he was a scuba diverand here I was facing this, you
(09:41):
know, maybe never being able todive again.
So I thought, wow, he'd kind ofunderstand what that was about.
And then, secondly, very firstmeeting, he's like, oh, what was
I talking about?
And what you know, what's thatword?
And I'm like, oh, my goodness,that's me in a nutshell.
So it just felt.
It felt like I was in the rightspot and I feel comfortable
(10:03):
saying that because we've hadother people see within the
group.
But yeah, it's just nobodythere's not enough places that
can tell you about a supportgroup.
It just it's kind of there's avoid, just like there was a void
for me finding out about postconcussions, you know syndrome,
or persistent concussionssymptoms whatever you want to
(10:26):
call it, I have no preference.
Bella (10:28):
I have gotten attacked a few times for using the wrong
term, but I don't think itmatters.
Whatever you want to call yourillness, you can call it.
If you want to call it a messedup, ever concussion or my brain
hurts syndrome, whatever.
Pam (10:42):
It's all the same.
Bella (10:44):
It's all the same thing.
So it's challenging and, likeyou said, you've reached out to
your brain injury alliance.
That can be a really great wayto find a support group is
reaching out through local braininjury societies.
Every single state in the USAdoes have a brain injury society
.
I know this is a fact.
Canada is also the same.
There's one, there's multiplein certain provinces, not sure
(11:07):
about other countries, but oneof the benefits is that a lot of
these groups are virtual, soyou can certainly join at any
time.
I know when you mentioned thetimes, that's a big thing
because I've struggled because Ihave people globally like over
in Europe, people in Australia,people in the States in
different time zones all sayinglet's join support group and I'm
like, okay.
(11:28):
So trying to find times thatworks for everyone is always a
challenge, but it is somethingthat can be beneficial about
joining a different time zonesupport group.
Maybe night works better foryou if you do still work, and
things like that.
So that is really somethingwonderful.
There's also in-person supportgroups, but we're going to talk
about the structure of supportgroups after.
(11:50):
But do you find challenges withfinding a support group?
Because I find a lot of people.
They don't really know where tolook.
I think that is definitely afirst step is usually brain
injury societies.
But some people I think that'sa refer from concussions feel
like they're not the right fitbecause they think stroke, they
think traumatic brain injury.
But that's often not the case.
Absolutely, bill.
Bo (12:12):
I think the first step- at least for me, was coming to the
realization that I wasn't goingto be able to do this alone and
things were not good and Ineeded help.
And so for I would say for atleast the first two years, I was
well, I can beat this, I'mtough, I can overcome.
(12:35):
So the first step for me wasjust realizing that my brain is
not an enemy I can overwhelm.
I'm going to need some help andfor the first 50 years of my
life I would have, I mean,support groups.
Those are for other people whoneed help, not me.
I think getting over thathurdle was my first step and it
(12:57):
was proven to be a really dumbthought the instant I walked
into the support group and waswelcomed and was understood and
just evaporated and I'm likethese are my people, I need to
be here.
But finding it, I mean it was.
It was happenstance really,because when somebody goes to an
(13:20):
emergency room with aconcussion, I don't think they
know about support groups.
Even my neurologist nevermentioned support groups.
I would say nine times out often it's that referral via the
way Pam came or somebody justcools support group themselves.
(13:42):
I wish there were better way.
I wish we could get our messageout there that these are
available, and then you know theother considerations you guys
talked about are accurate too.
Sometimes.
Sometimes there's not a rightfit.
I was on one support group.
The time thing is critical too.
I was on the support group twoor three months ago.
(14:03):
A woman joined the group it wasa TBI support group but she had
I can't remember she had sometotally unrelated but serious
kidney disease and she was justshe was looking for help and
this happened to be at an hour.
She was on the East Coast andwe were on the West Coast and
she said I just need help.
So we kind of droppedeverything and talked to her and
(14:27):
so, yeah, the time.
There's so many criticalfactors.
But my message would be thereare support groups out there.
They're just probably one thatwill fit.
And we have people come in andspend an hour or so or even 10
or 20 minutes and leave.
That's okay.
I mean, virtual is easy.
(14:48):
But we have people who comeback regularly every week.
The only thing as a facilitatorof a support group I will say
we now have people in multipletime zones.
So it's the challenge there.
When somebody asks me what timeis it, my first thought goes to
well, where are you?
Bella (15:07):
Yeah for sure.
Those are all really importantpoints and I do really want to
get into the structure ofsupport groups and the different
types of support groups thereare and how that can make a
different fit for everyone, butwe will talk about that after
(15:27):
the break.
Did you want to createawareness about concussions?
You can check out our entireclothing line through the link
in the episode description or goto our website,
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(15:49):
Make sure to pause this episoderight now and order yours
before you forget, just like Iwould Welcome back to the Post
Concussion Podcast with myself,Bella Paige and today's guests
Pam and Bo.
(16:25):
and so what I really wanted totalk about, is the structure.
It's something that I kind ofstudied, I guess, before I
started.
Mine is the structure, becausethere's different ways to run a
support group, so I'm going tolet you two take that on and
kind of talk about, you know,the different types of support
groups that are there.
Maybe some different structuresthere are that exist as well.
Pam (16:49):
I know one of the things I like about our current support
group is that you kind of getthe best of both worlds.
We have a weekly meeting.
It's more the family event, youknow, where we talk and share
and advise one another, ask eachother how are you doing?
What's going on this week foryou, anyone need help?
(17:10):
And then we also have a monthlymeeting where we invite guests
like yourself and there's moreof a theme and a topic and it's
more of a presentation to thegroup.
So I kind of like that.
You know, like you mentioned,kind of checking into different
ones to really as Bo put it findyour people and what really
(17:30):
resonates with you.
There's a lot of differentthings and you know there's some
big support groups out therewhere you know you kind of just
listen to people's storiesbecause they're so large, and
then there's other ones that arereally small and you can get
kind of a one-on-one withsomebody.
So yeah, there's a lot ofdifferent structure and you've
(17:53):
got to kind of figure out what'sgoing to work best for you and
what you truly enjoy the two.
Bo (18:01):
Well, the way I was introduced to support groups was
the kind of the I guess now Icall it the traditional support
group, where there's a subjectmatter or a presenter, you know,
oftentimes it was maybe anoccupational therapist or
someone who was familiar withbrain injury, talking about
getting back into the routine ofliving, and for several years
(18:25):
that was kind of what my supportgroup experience was, and then
with a Zoom it became a littleharder to do that, but it also
opened up the opportunities for,you know, those little more
wide open.
The one of the inspiration thegroup we have is I describe it
(18:46):
as free for all.
Somebody who's having a problemthat day we can talk about that
, and that kind of was inspiredby.
I've attended some supportgroups with NAMI, the National
Alliance for Mental Illness, Ithink, and they have very good
support groups specifically formental illness of all shapes and
(19:12):
sizes and causes.
And frankly, we have a lot ofpeople in the brain injury side
of things, in concussion side ofthings, who can benefit by some
of the NAMI support groups.
But anyway, they begin theirgroups usually by saying is
anybody in crisis?
And so that's kind of what wetry to do, is, you know, just
check in first thing, and how iseverybody doing?
(19:33):
One week somebody will have anupcoming social security hearing
that they need to attend, so wetalk them through that.
This week we have one of ourwonderful members going through
some therapy and we're going toactually have a little impromptu
group to send some mojo her wayso we can at least make her
(19:56):
smile.
There's a support group thatwill fit almost everybody, and
if you don't find that, thatbill of dibs starts your own.
Bella (20:05):
Yeah, pretty much, and I agree there is so many different
types.
Like the presenter type was thetype that wasn't for me it's
great to be a part of, like yousaid, like you have it not all
the time, but I wanted to talkabout all my problems and what I
was going through and I wantedto get help and where that's a
(20:27):
little bit of a different setup.
I know you'll learn a lot, butfor me that was like listening
to a podcast episode.
If I wanted to listen to aprofessional talk about a bunch
of things, then I could justlisten to a podcast where I
wanted a group, where, like yousaid, the open format is really
nice.
I used to have subjects for allmy support groups until
someone's like can we just talk?
And I'm like sure we start ourswith talking about our weeks
(20:50):
because we meet every week andeveryone's become quite close,
so kind of like what they'regoing through.
We work through things frommoving, job loss symptoms,
finding new jobs what kind ofjobs, I could even try to find
therapists, all those types ofthings.
So we talk about everything,which I think is really
important.
We talk about relationships too.
(21:11):
That's always a really big onewith partners, of survivors,
because there's a lot ofchallenges there.
So I like that too.
And sometimes a huge group iswhat you want, because maybe you
don't want to talk that much,maybe you're just not
comfortable with it.
So maybe sitting and listeningto a huge group is perfect,
because you just want to sitthere and listen and maybe type
a few things into a chat andyou'll still get some wonderful
(21:33):
resources from listening toothers and that can be really
beneficial as well.
And of course, there'sin-person support groups as well
that a lot of the brain injurysocieties do put on.
I've just never been to any ofthem.
But, like Thao mentionedearlier, one of the benefits of
the virtual support groups isyou can just cut out.
I tell people to come late, Itell people to come for half the
(21:54):
time.
You can come for what you need.
Maybe you only have half anhour that day, maybe a half an
hour on a screen is enough, andso you can just cut out and
disappear.
So some of those benefits arereally really nice and you can
just click, go, join in.
And sometimes the topics arenice because you can kind of
know what to expect.
Maybe you can prepare what youwant to ask about.
(22:15):
So those can be nice too, butit just shows that it's kind of
like the recommendation that Ihave for finding a talk
therapist.
It's the same recommendationthat I have for support groups.
Try them out.
You might not like one, but tryanother.
Same thing with talk therapistsyou talk to a therapist and they
rub you the wrong way.
Find another one, because therewill be one that you can
(22:36):
connect with.
But when you're ill and allthat, sometimes it takes a bit
of time and that's okay.
And, like Bo said, if you hateit, just close your screen.
Yeah, like nobody will beinsulted, it's okay.
You really know that you needhelp and you will find it where
you need it.
I think this is reallyimportant conversation.
To talk about support groups,kind of open up a little bit
(22:57):
more about that, it is okay.
You know there is sometimes thestigma of needing help.
I think that's really common,more for men than women, but it
is very common.
And so is there anything elseyou too would like to add before
we end today's episode?
Pam (23:12):
Well, I will touch on that denial part.
I will touch on that denialpart.
And Bo called me on it.
Bo definitely called me on it acouple of times, but even
before I joined it was like Idon't need this.
It's just that I've always beenthe one to fix things and I
couldn't fix this, I couldn'tmake this better, and it was
(23:32):
really accepting and letting goof that, and you do really have
to get beyond yourself sometimesin the way things were.
So, in addition, I just wouldlike to say thank you for
everything you've done and putout there.
You've been a huge resource tome on my journey and I
(23:53):
absolutely appreciate it.
Everything from you know, fromthe physical elements to the
mental side of it, you've justprovided a lot of great
resources.
So thank you.
Bo (24:06):
Absolutely yeah.
And one thing, Bella, youtouched on a little bit the
knowledge in the education part.
I still almost everybody.
I've learned everything I knowabout brain injury from people
I've encountered in supportgroups.
My neurologist said, yeah,you've got a brain injury.
And I said, well, what doesthat mean?
(24:27):
And he said, well, it is whatit is.
But everything subsequent tothat, everything I've learned
about myself, about my brain,about how it works, how it
doesn't work, has come fromothers and talking and listening
to others going through thesame stuff, and I will echo what
what Van says ConcussionConnect is just awesome.
(24:51):
I go through and listen to yourpast podcasts and look up the
subject, and I'm a hockey fan soI listened to all the hockey,
all the sports guys.
It's a great resource and Ithank you as well.
Bella (25:05):
Yeah, I want to thank you both so much for joining us
today and sharing yourexperience with support groups.
Absolutely, thank you forhaving me.
Need more than just thispodcast.
Be sure to check out ourwebsite postconcussioninccom to
see how we can help you in yourpost concussion life, from a
support network to one on onecoaching.
(25:27):
I believe life can get betterbecause I've lived through it.
Make sure you take it one dayat a time.
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