Latest / Unbalanced with Cerys Davage / 61. LGMD Conference Recap!

Transcript

61. LGMD Conference Recap! · Unbalanced with Cerys Davage

• 0:10
  Hello everyone, welcome back to another episode of Unbalanced
• 0:14
  with Me, Kerry Savage. I've been waiting so long for
• 0:17
  this one. I'm back from Florida and I'm
• 0:20
  back from the Limb Girdle Muscular Dystrophy Conference in
• 0:24
  Orlando, and I'm here today to tell you all about it.
• 0:28
  This episode is in two parts today.
• 0:31
  So the first half I'll be just kind of dissecting the
• 0:34
  conference in my own words, just my own experiences from it.
• 0:39
  And then the second-half is quite a last minute idea I had
• 0:43
  whilst I was out there. But it's a little speed dating
• 0:47
  kind of vibe where I meet a few people that were at the
• 0:51
  conference and we get to hear a bit about their stories and what
• 0:55
  the conference means to them. So stay tuned for that later on
• 0:59
  just for a few interviews. I wish I thought of this earlier
• 1:02
  in the conference and therefore had the chance to meet so many
• 1:06
  more people on the podcast. But unfortunately, the weekend
• 1:10
  itself was just such a whirlwind and everyone was so busy.
• 1:14
  You know, like when you're there, you want to catch up with
• 1:16
  so many people, you want to meet so many people.
• 1:19
  They were talks on all day in different rooms.
• 1:21
  So it was actually quite difficult to sit down and record
• 1:24
  with people. And then by the time the
• 1:26
  conference finished that day, we just want to relax and hang out
• 1:30
  by the pool or go for food or whatever.
• 1:32
  So there are there are a few people that would have loved to
• 1:35
  have on the podcast, but they did make an appearance on my
• 1:38
  vlog. So if you haven't checked out my
• 1:40
  YouTube, I vlogged the whole week, not just the conference.
• 1:45
  I vlogged my experiences in Florida, exploring a bit around
• 1:49
  Florida, a bit of the hotel where we stayed and where the
• 1:52
  conference was. Obviously the conference itself,
• 1:55
  I tried to get as much footage as I could.
• 1:58
  And also Disney World. I did Disney World for one day.
• 2:01
  So we're going to start off today with this podcast just to
• 2:05
  go a bit deeper into what the conference actually was.
• 2:09
  And for you guys at home who maybe didn't get a chance to
• 2:12
  come to the conference this year, I kind of want to just
• 2:15
  share my experiences of it. Obviously, I'm not going to be
• 2:18
  able to talk about absolutely everything that was there
• 2:20
  because I couldn't attend every single talk.
• 2:23
  This is just, you know, my own point of view and something I
• 2:27
  didn't really get a chance to do as much in the vlog.
• 2:29
  And something I wanted to say for this podcast was to actually
• 2:33
  talk about it. It's just so weird that it's
• 2:35
  already done. You know, when you anticipate
• 2:37
  something for so long, when you've been looking forward to
• 2:40
  something for months and months and then it's suddenly just
• 2:44
  overweight. It's like I'm back in Cardiff,
• 2:46
  it's all done. But hopefully this won't be my
• 2:49
  last. This was my first LGMD
• 2:52
  conference. It is just an incredible
• 2:55
  experience. I have been to A2 I conference
• 2:57
  before in Iowa. SO2I if you guys don't know is
• 3:01
  my LGBT subtype. But this conference is for all
• 3:05
  the subtypes. So you've got all the two
• 3:09
  somethings which are now known as R something because R stands
• 3:13
  for recessive. So with LGMD you've got dominant
• 3:17
  and recessive. And I am a recessive type of
• 3:21
  LGMD. I know it's referred AS2I.
• 3:24
  It's also now referred to as R9 because one and two for LGMD, 1
• 3:29
  was dominant and two was recessive.
• 3:31
  And we went through the letters, but then obviously we ran out of
• 3:34
  letters for #2. So now we go through R as
• 3:39
  recessive and then go through the numbers instead.
• 3:41
  So I is the 9th letter of the alphabet.
• 3:45
  So I am R9 recessive 9. So 2 I, otherwise known as R9 is
• 3:51
  my LGMD. So a lot of the talks in the
• 3:56
  conference were science based and to try and help people get
• 4:00
  more of an understanding of their own condition and other
• 4:03
  people's conditions. I thought it was really
• 4:05
  interesting to not just learn about my own condition.
• 4:09
  I'm not a scientific person at all, and every time I do go to a
• 4:13
  conference or speak to a specialist, I just learn a
• 4:16
  little bit more every time, and I'm gradually building up my
• 4:19
  knowledge. It's really difficult to kind of
• 4:22
  let everything sink in all at once, and it's difficult to
• 4:25
  learn everything at once. But I think with some time you
• 4:29
  do get used to knowing a bit more about your own condition
• 4:34
  just scientifically and how it works scientifically.
• 4:36
  What was incredible about this conference was that you had so
• 4:40
  many different subtypes, and Tristan actually said something
• 4:44
  quite funny. This is his first conference
• 4:45
  ever for LGMD and it was just us two that went.
• 4:50
  And he said that he noticed that everyone was asking each other
• 4:55
  when they were meeting each other.
• 4:56
  What's your subtype? It's almost like asking people
• 4:58
  what's your pronouns like, hi, I'm Karis.
• 5:01
  I'm two I what's your subtype? But I thought it was really
• 5:05
  interesting how the demographic really ranged age wise.
• 5:11
  You know, you have people from kids, you teenagers, young
• 5:14
  adults up to adults and you had families and grandparents.
• 5:18
  And yeah, it was just, it was just incredible to see the range
• 5:21
  of ages, but also found it interesting to see the range of
• 5:26
  mobility aids that were being used there.
• 5:28
  You know, you had young people in wheelchairs, but then you
• 5:32
  also had old people maybe just with like a stick or a crutch or
• 5:35
  something. So the symptoms really vary from
• 5:39
  subtype to subtype. And like I've mentioned before,
• 5:42
  there are different types of onsets.
• 5:44
  You can get more aggressive forms of LGMD and you can get
• 5:47
  kind of later onset versions. So I have the later onset
• 5:50
  version which is homozygous, which is actually means that my
• 5:53
  symptoms don't start from really young, they start a little bit
• 5:56
  later in life. And like you guys know, my
• 5:59
  symptoms didn't start until I was a teenager.
• 6:01
  So it was really cool to see so many young people using mobility
• 6:06
  aids and I just felt so represented and it was so weird.
• 6:10
  Throughout the entire week, people would gradually start
• 6:13
  arriving at the hotel and I'd know instantly if they were
• 6:16
  there for the conference because either they had a mobility aid
• 6:19
  or they walked like me, you know, they walked with a bit of
• 6:22
  a waddle. And it was just so nice to
• 6:25
  finally feel represented. I finally felt like being home
• 6:30
  in a way, which is really weird because obviously it was a new
• 6:32
  place full of people that I never met or maybe some people
• 6:36
  that I've met before. But I just truly, you truly do
• 6:40
  feel a sense of belonging there because there's more of us and
• 6:44
  there's less of them. When you're out in the real
• 6:47
  world, you can feel like the only one that's alone.
• 6:49
  You can feel like the only one that's going through what you're
• 6:52
  going through. But when you're at these events
• 6:55
  like these conferences, there is truly a sense of community and a
• 6:59
  sense of belonging because everyone just gets it.
• 7:02
  Everyone knows exactly what you're going through.
• 7:05
  We've all had these very similar experiences.
• 7:08
  And so it just feels like you finally are not the minority
• 7:13
  anymore. You're not the only one
• 7:15
  struggling. You're there with everyone else.
• 7:18
  And it's actually the non disabled people that were the
• 7:21
  minority in that weekend because it was mostly people with LGMD
• 7:25
  and they are my people. Honestly.
• 7:27
  Like it's just been so nice to meet people and not have to
• 7:32
  explain anything. Not have people coming up to me
• 7:35
  asking oh what happened if I'm in a wheelchair, just people who
• 7:38
  get it. And that's truly the main take
• 7:41
  away I've had from this weekend is that community is so
• 7:45
  important and as expensive and as tiring as that trip was for
• 7:50
  me, it was so worth it and I would do it over again in a
• 7:53
  heartbeat because there is truly nothing like it.
• 7:56
  It was absolutely incredible. So the conference was on Friday
• 8:01
  evening to Saturday, So Friday evening was just the
• 8:04
  registration and a chance for people to meet for the first
• 8:08
  time and to get to know each other.
• 8:10
  So it was like a welcome reception mixer kind of thing.
• 8:13
  So the Speak Foundation are the hosts of this conference and the
• 8:18
  work they're doing is absolutely incredible.
• 8:19
  And they put together this conference so well, as they do
• 8:23
  every year apparently. But yeah, it was just so nice to
• 8:27
  actually meet people. And I've said this on my blog,
• 8:30
  it's just been so nice to meet people that I've been talking to
• 8:33
  online for so long, and I actually had a chance to meet
• 8:36
  them in person. And we just instantly clicked.
• 8:40
  And I met so many amazing incredible people and we just
• 8:43
  clicked and it was just so lovely.
• 8:45
  The Saturday was quite a full on day and I hosted 2 talks.
• 8:52
  So right at the beginning we had a little intro session in the
• 8:55
  main hall, some scientific talks.
• 8:58
  And I want to say as well that all the main talks from the main
• 9:03
  ballroom, the main hall are all available online to watch with
• 9:07
  their PowerPoint presentations. Which is great for me because I
• 9:11
  could not keep up with the pace and write everything down.
• 9:14
  My hand would have fallen off. And the information there is so
• 9:19
  critical, you know, if you do want to learn more about your
• 9:21
  condition and about clinical trials that are going on, which
• 9:25
  is so exciting. It's all available to watch
• 9:28
  online Now it's it's finally up. So I will leave a link to that
• 9:31
  YouTube video down in the description because I think it's
• 9:35
  a really good opportunity if you didn't get a chance to go to the
• 9:38
  conference to catch up on the main talks that were happening.
• 9:42
  I did find it quite science heavy as someone who just
• 9:45
  struggles to understand it all. But I think every time I do go
• 9:50
  to a conference, like I said, I, I chip away my, my knowledge for
• 9:54
  this and I just kind of build up a little bit more every time.
• 9:58
  But like I said, this is more interesting because it wasn't
• 10:01
  just talking about two I. There was a lot of talks on
• 10:06
  different clinical trials that were going on and research into
• 10:10
  cures. And actually in one of the main
• 10:13
  talks about that, they used our 92 I as the example, the prime
• 10:18
  example for that, which is great for me because that's my
• 10:21
  condition. So I know that right now that
• 10:24
  there are two main trials going on for two I and that's the
• 10:27
  ribotol trial, which is some kind of white powder that you
• 10:31
  put in your food, very similar to D ribose, but it's actually
• 10:35
  way stronger and way more beneficial.
• 10:38
  So there's a trial going on for that right now, which I'd love
• 10:41
  to enter once a space opens up for me.
• 10:44
  And so I'll definitely keep you posted on that.
• 10:46
  And there's also a gene therapy trial going on as well at the
• 10:50
  beginning of the conference as well.
• 10:52
  There was also a moment of silence held for a 2D patient
• 10:56
  who recently died from complications from a clinical
• 11:01
  trial. So it was just really nice to
• 11:04
  honour that patient and for us to all kind of come together as
• 11:08
  a community to recognise what comes with doing a clinical
• 11:11
  trial. You know, when you do a clinical
• 11:14
  trial, for example, gene therapy, you are signing up to a
• 11:17
  lot of potential complications. But I think it's a true sign of
• 11:23
  determination to find a cure not for yourself, but for other
• 11:27
  patients, for future generations with your condition.
• 11:31
  And it's just taking another step towards a brighter future
• 11:34
  for people with LGMD. So for those guys who are a part
• 11:38
  of a clinical trial and if you watching are a part of a
• 11:41
  clinical trial, honestly my hat goes off to you because it's
• 11:45
  just it is a big commitment and you are really helping out the
• 11:49
  medical teams that are researching but also giving hope
• 11:52
  for patients like me that they can be a cure and a treatment
• 11:56
  for LGMD. One day.
• 11:58
  After the morning talks, which are all available online, we
• 12:02
  then had some breakout sessions and this is where my first talk
• 12:06
  held place. I spoke with Johnny Favour about
• 12:10
  adapted driving. It was actually in the same
• 12:13
  session as the Life Hacks talk. So the Life Hacks talk took
• 12:17
  place first and then it was me and Johnny talking about adapted
• 12:21
  driving. So Johnny is obviously from the
• 12:24
  US and most people, they were from the US.
• 12:26
  So he was talking about his experiences with getting an
• 12:30
  adapted vehicle in the US. And I was talking about my
• 12:33
  experiences in the UK. And I completely forgot while I
• 12:36
  was planning this that most people would not be from the UK.
• 12:41
  And I forgot to translate some words like boot is trunk in
• 12:46
  America. And I just completely forgot
• 12:49
  about that. So I was talking about having a
• 12:50
  big boot. And I hope people actually
• 12:52
  understood what I was trying to say.
• 12:54
  And so yeah, that was really fun, really interesting.
• 12:58
  Apparently that talk was completely full and there were
• 13:00
  people waiting outside the room to get in because it was such a
• 13:05
  popular talk. I don't know.
• 13:07
  But it was just so nice to see a big turn out and to have some
• 13:11
  really positive feedback come from that, which was so nice.
• 13:15
  And not long after that, after lunch, I hosted the youth
• 13:19
  session with Serena, who you will meet on my vlog.
• 13:24
  If you haven't already, go check out my vlog, also linked below.
• 13:27
  But yeah, Serena and I just kind of hosted a little chat and it
• 13:31
  was really informal. It wasn't like a sit down
• 13:34
  presentation. It was just a sit down chat.
• 13:36
  It was just a chance for us young people maybe going through
• 13:40
  college or work for the first time just to get together and to
• 13:45
  talk about issues, actually a lot of them that I talk on my
• 13:49
  podcast, but issues that us young people face with this
• 13:52
  extra barrier of having LGMD. So it's just really nice to
• 13:56
  connect with them and just get to know each other a bit deeper
• 14:00
  and have a yap and that's what I do best.
• 14:03
  So that was really lovely and the feedback for that was great
• 14:06
  as well. As for these talks, the youth
• 14:09
  session definitely wasn't recorded.
• 14:11
  I'll let you guys know if there is a recording of the adapter
• 14:14
  driving session. I'll keep you posted on that.
• 14:17
  I'm not 100% whether there is a recording anywhere to be found,
• 14:21
  but I will definitely keep you guys updated.
• 14:24
  Yeah, there were more breakout sessions after that.
• 14:27
  So things like how to navigate mental health when it comes to
• 14:32
  having LGMD, how to navigate exercise and nutrition.
• 14:37
  And I went to that session, the exercise one, and that was
• 14:40
  really full as well. So I was right at the back and
• 14:43
  I, I think I kind of was quite overwhelmed from doing the talks
• 14:47
  and I was just a bit like in my own world and a bit tired at
• 14:50
  that point. But I did manage to pick up that
• 14:53
  it is important to tailor your exercise to your yourself, to
• 14:57
  your own body, to always check your exercises with a
• 15:02
  neuromuscular specialist or a physiotherapist, because every
• 15:07
  exercise is going to be different and it's going to work
• 15:10
  different for everyone. So I think it's easy to just
• 15:14
  slap on some YouTube tutorial on like an AB workout, but it
• 15:17
  actually might be damaging for us with LGMD.
• 15:20
  So I think it's really important to really work with someone who
• 15:24
  understands your condition and to understand how LGMD works to
• 15:30
  be able to tailor a good exercise regime that works for
• 15:33
  you. And another good thing about
• 15:35
  LGMD is that it really keeps us on our toes when it comes to
• 15:39
  progressing and we constantly have to adapt our routines as
• 15:43
  well. So that's really important.
• 15:45
  And the specialist also mentioned that it's not just
• 15:48
  about having a good exercise regime, it's also about having a
• 15:53
  good quality of life, which sounds easier said than done.
• 15:56
  But I think she was saying that, you know, having good mental
• 15:59
  health is also an important part of managing LGMD symptoms and
• 16:05
  having a good, like, diet and things.
• 16:07
  But again, these are all things that you need to just consult
• 16:11
  with a specialist because they're the ones that are going
• 16:14
  to be able to give the best advice.
• 16:16
  So yeah. And then after that, in the
• 16:18
  evening, they were kind of breakout parties for all the
• 16:23
  different subtypes to get together.
• 16:25
  So I went obviously to the Cure LG D2 I party and they hosted
• 16:32
  and it was really nice to meet other people in the Two I
• 16:35
  community that I hadn't already. And obviously see some familiar
• 16:38
  faces in the Two I community that I've met in Iowa in the
• 16:42
  past and also in the European conference last year when I went
• 16:47
  to Amsterdam. So I'm looking forward to the
• 16:50
  next European conference. If you guys watching have to I
• 16:54
  and you've never been to a conference before or you think
• 16:57
  America is too far to travel, there is going to be an LGMD
• 17:02
  conference in Europe, the second European one in Denmark at the
• 17:07
  end of May. I think it's the 24th and 25th
• 17:10
  of May that weekend anyway. So please put that in your diary
• 17:14
  if you haven't already. Please consider it.
• 17:16
  And a great thing about these conferences and I know for sure
• 17:20
  about the ones in America is that there are stipends
• 17:23
  available for those travelling from afar.
• 17:26
  And obviously these conferences are very expensive, so the Speed
• 17:30
  Foundation do really take that into consideration and they try
• 17:34
  their best to accommodate that. The fact that we stayed at the
• 17:37
  hotel where the conference was was only because they managed to
• 17:42
  give us a reduced rate for the rooms for the conference.
• 17:46
  Otherwise that place is way too spanny and I would not have been
• 17:49
  able to stay there. But it was just nice to know
• 17:52
  that we do, you know, have an extra bit of support in that
• 17:55
  way. There were more talks then on
• 17:57
  the Sunday, quite similar to the one on Saturday.
• 18:01
  It was very science based and it did end a bit earlier so that we
• 18:04
  could have a chance to just catch up and relax.
• 18:07
  And I know a lot of people went home that day.
• 18:09
  This is where I had the genius idea to record this next segment
• 18:14
  of the podcast. So I'm going to play that now.
• 18:17
  And then after these interviews, I'm going to come back and talk
• 18:21
  about my experience at Disney World if you guys are interested
• 18:25
  in sticking around for that because I've had so many
• 18:27
  questions online about my experience at Disney World.
• 18:31
  I only did one day, but I did 3 parks in one day with a
• 18:36
  wheelchair. So if you guys are interested in
• 18:38
  that, stick around after the little interviews that I have.
• 18:41
  But for now, sit back, relax and enjoy.
• 18:44
  So my first victim today to the podcast, my first guest is
• 18:48
  Grace. Yeah.
• 18:49
  How you doing? Hello, biggest unbalanced fan
• 18:52
  right here. So very excited to be together
• 18:55
  with Karis in person. So nice to actually chat with
• 18:58
  you in person and not just online.
• 19:00
  Yes, on Instagram or TikTok comments.
• 19:03
  Yes, exactly. So tell us a bit about yourself.
• 19:07
  I'm Grace, I'm 25 years old and I have a limb girdle muscular
• 19:11
  dystrophy type 2 J and I was diagnosed about 3 years ago.
• 19:15
  Amazing. And what were your first
• 19:17
  symptoms? So back when I was around 20 I
• 19:22
  started having a really hard time walking to my classes at
• 19:26
  college. I could not keep up with my
• 19:28
  friends like I used to be able to.
• 19:30
  And then I was having a harder time getting up from a seated
• 19:33
  position, getting up from the floor and then eventually stairs
• 19:37
  became a nightmare for me and I would need a railing.
• 19:41
  And then it just got worse and worse with time, and eventually
• 19:46
  I was travelling and my legs kept giving out and I really
• 19:51
  hurt my ankle. So at that point my parents were
• 19:53
  like, you know what, maybe let's see some doctors.
• 19:56
  There might be something going on here.
• 19:58
  Wow. And here you are.
• 20:00
  And here I am. And you've got an actual little
• 20:03
  someone with us, can you? Do Oh yes, can't forget her.
• 20:06
  This is Delilah. This is my first cane.
• 20:09
  I got her back in November so she's on the newer side but I'm
• 20:13
  so happy to have her. She's world famous now.
• 20:17
  She's been travelling with me a lot, but yeah, I can't imagine
• 20:20
  my life without her at this point.
• 20:22
  So thank you, Delilah. We love her.
• 20:25
  You also have a mobility scooter which is out of shock but she's
• 20:28
  also so cool. Does does this mobility scooter
• 20:32
  have a name as well? So I she looks kind of like a
• 20:36
  Betty. The scooter is actually a rental
• 20:39
  for just this weekend because this is a lot of walking
• 20:42
  happening in this conference sitter and travelling can be a
• 20:46
  lot for me and I'm sure all of us here, but it gets very
• 20:49
  exhausting and I wanted to be able to keep up and keep my
• 20:52
  energy levels high during this conference.
• 20:54
  So the scooters kind of a trial run for this weekend, but I'm
• 20:58
  really enjoying it and I'm getting a little scared of how
• 21:00
  used to it I'm getting and how good I am at driving it because
• 21:04
  now I might want to keep one. Well, how have you found the
• 21:09
  conference? This is, I mean, this is we're
• 21:11
  nearing the end of the conference.
• 21:13
  How have you found it? I've absolutely loved it.
• 21:16
  I was honestly really nervous to come to this because as much as
• 21:19
  I love talking to all of you guys online and it's helped me
• 21:23
  feel better about my situation. I hadn't really met a lot of
• 21:27
  people that also have LGMD in person so I wasn't sure if it
• 21:31
  would maybe make me feel more overwhelmed or like worse about
• 21:35
  everything or just disappointed about the whole situation.
• 21:40
  But honestly it has done only the opposite of that.
• 21:43
  I feel so much better and more confident about what's going on
• 21:48
  and also I feel like I have this whole community now.
• 21:51
  I have like a a new family. Yeah, definitely it.
• 21:54
  It really does feel like a family, like you really belong
• 21:56
  here. It's so nice.
• 21:58
  What's been your favourite thing and like your biggest takeaway
• 22:01
  from the conference? I think actually using the
• 22:05
  scooter and feeling the confidence to do it around
• 22:08
  everyone else that has their mobile devices.
• 22:10
  Something I was thinking about yesterday was it was one of the
• 22:14
  first times I felt actually normal in a long time, like back
• 22:19
  in the normal day today, I think it's easy for us with this
• 22:23
  health condition to feel out of place or like we're the odd one
• 22:27
  out. And we're constantly thinking
• 22:29
  about our mobility and how to get from point A to B and how
• 22:32
  our friends are going to help us with that.
• 22:34
  But here, all of us are dealing with the same things.
• 22:37
  We all have those same thoughts, so we don't have to worry about
• 22:39
  what it looks like when we're limping around or how we're
• 22:42
  going to get from one room to the other.
• 22:44
  We're all kind of dealing with the same things and so it feels
• 22:47
  normal. Exactly.
• 22:49
  I love that. Is there anything else you want
• 22:51
  to add? No, I love unbalanced.
• 22:54
  Go unbalanced. I love it.
• 22:55
  Subscribe. Oh, I want to ask a question
• 22:58
  that I ask all my interviewees. Yes, you.
• 23:00
  Can probably guess it. What's one piece of advice that
• 23:03
  you'd give someone who has just been diagnosed?
• 23:06
  OK. Yes, this is a great question.
• 23:09
  So it took a very long time when I was diagnosed for me to be
• 23:13
  open about it. And I want people to know that
• 23:15
  that's OK. It is a grieving process when
• 23:18
  you are diagnosed with an incurable disease that will
• 23:22
  continue for the rest of your life.
• 23:24
  And that is progressive. And it's OK to have those heavy
• 23:28
  emotions. But also, when you are ready, do
• 23:32
  seek out this community because we are here and we're ready to
• 23:36
  welcome you and it will help so much, I promise.
• 23:40
  I love that. Thank you so much, Grace.
• 23:43
  You're welcome. I love you.
• 23:45
  I love you too. Bye.
• 23:49
  So my next guest is Solomon. Hi.
• 23:52
  Hi. How you doing?
• 23:53
  Good. How are you?
• 23:54
  Thank you for having me. I'm so excited to actually be
• 23:57
  like meeting you guys in person. It's been so great.
• 24:00
  So tell me a bit about yourself. So my name is Solomon, I'm 30
• 24:03
  years old. I have limb girdle muscular
• 24:05
  dystrophy type 2B. 2B. To be or not to?
• 24:10
  Be. To be or not?
• 24:10
  To be I love that one. That's definitely not a joke
• 24:13
  I've made before. And so when were you diagnosed?
• 24:17
  So I had an interesting journey in which I was misdiagnosed sort
• 24:22
  of in my late teens and then got my official diagnosis just two
• 24:25
  years ago. In high school.
• 24:27
  I started having these really weird abdominal symptoms that
• 24:31
  led me to getting blood work, which led to the high liver
• 24:33
  enzyme thing that a lot of us experience.
• 24:36
  And that kind of had this snowball effect of not being
• 24:39
  sure what's wrong. Was getting fatigued really
• 24:42
  easily turned into muscular dystrophy just by chance of a
• 24:45
  specialist being in the room during one of my blood panel
• 24:48
  things just by sheer chance. But my actual onset didn't start
• 24:52
  until I was about 24 and I just started falling randomly.
• 24:57
  I would be like walking somewhere or like trying to
• 25:00
  stand up and I wouldn't like fall forward and like face plant
• 25:02
  or like fall backwards trying to get into a doorway.
• 25:05
  And it just kind of became a cascading effect.
• 25:09
  OK. And you knew that's not normal.
• 25:11
  Yeah, people. Don't fall that.
• 25:13
  I mean, I was accident from as a child, but this felt kind of
• 25:15
  egregious. It's exactly.
• 25:17
  Funny. Yeah.
• 25:18
  Yeah, well, I mean, that's definitely one thing that set me
• 25:20
  apart for my friends. It's just like the random falls
• 25:23
  and then just be stood there like well, don't really know how
• 25:25
  to help you here. Yeah, it's really almost a
• 25:29
  vantilizing in a way, because like the first time it happened,
• 25:31
  I was walking down my driveway and I literally like fell for
• 25:34
  like a child and I was like and didn't really know what to do
• 25:39
  other than just like get up and be like.
• 25:40
  That was weird. Yeah, wow.
• 25:42
  So you're here, You've had a diagnosis, you've met your
• 25:46
  people. What's it been like?
• 25:48
  It's been really cathartic in a way that I'm still trying to
• 25:53
  find the words to describe. This is my first conference and
• 25:56
  one, it's really nice kind of just being somewhere where
• 25:58
  everyone has like mobility aids and different body types and
• 26:02
  things like that. So it, I feel part of something
• 26:05
  and not like in this weird voyeuristic position that allows
• 26:08
  us to feel like when we're kind of on display, for lack of a
• 26:11
  better term. So it's nice to kind of just
• 26:13
  blend into the crowd for once while still being in a
• 26:15
  wheelchair and being able to like access the things that I
• 26:18
  need to have access to. But it's, it's been really
• 26:22
  great. And I think it's going to be one
• 26:23
  of those things where I'm going to be sitting on the feelings
• 26:25
  for a few weeks before I finally have the right words to
• 26:28
  describe. Yeah, it's definitely been
• 26:31
  overwhelming. But in the display, you know,
• 26:33
  like in the outside world, let's say like I'm the one by myself
• 26:38
  that's in a wheelchair and then everyone else has stood around.
• 26:41
  Whereas here, like the majority of people are in wheelchairs and
• 26:43
  mobility aids. So it's just like a sense of
• 26:46
  belonging in a way, isn't it? Also like the situational
• 26:49
  awareness everyone has is really nice, not having to constantly
• 26:51
  tell people to move or yeah. You know, everything's been
• 26:55
  thought out like. Yeah, and even like the people
• 26:57
  who are here helping out, who aren't disabled, having that
• 27:00
  awareness and knowing to move out of the way or move other
• 27:02
  people out of the way and kind of give room for people who need
• 27:05
  it. Exactly.
• 27:06
  Yeah, because there's a lot of people without LGMD here as
• 27:09
  well, like whether they're caregivers, family partners, and
• 27:12
  we both have our partners here. And it's just so nice for them
• 27:15
  to just know, you know, like if someone else is struggling as
• 27:18
  well, like they get it as well. Like my partner has been, you
• 27:22
  know, kind of aware and around and, you know, ready to help
• 27:25
  other people as well because he knows he knows what it's.
• 27:28
  Like, and it also sets a really good example down the line for
• 27:31
  people who might not know how to help disabled people.
• 27:34
  Yeah, I think having that sort of visual example, because a lot
• 27:36
  of it's just due to a lack of exposure, yeah.
• 27:38
  Like a lot of people just genuinely don't know what to do
• 27:40
  in the face of disability, even though anyone can become
• 27:43
  disabled at any time. Exactly, Yeah.
• 27:45
  So I feel like it's in a way unintentionally paying it
• 27:48
  forward. Yeah, definitely.
• 27:49
  I mean, it's always good to educate yourself because you
• 27:52
  never know, you might be a part of the community one day and
• 27:55
  we'll be here to welcome you. So to finish off, I want to ask
• 28:00
  you a question that I ask all my interviewees, which is what is
• 28:04
  one piece of advice you'd give someone that's just getting a
• 28:07
  diagnosis or your younger self? Advocate for yourself, it is so
• 28:11
  important. I think approaching everything
• 28:14
  from the closed mouths don't get bed mentality.
• 28:17
  People don't know how to help unless you told them how to
• 28:19
  help. And it's uncomfortable and it
• 28:21
  sucks, but also it's really necessary and I think it can
• 28:24
  apply to anyone, disability or not knowing how to stand up for
• 28:28
  yourself, how to ask for what you need.
• 28:30
  Yeah, and it gets easier and the more you do it.
• 28:31
  Yeah, it's a form of self-care, right?
• 28:33
  Exactly. Yeah.
• 28:35
  Amazing. Is there anything else you want
• 28:36
  to add? No.
• 28:37
  Just thank you for having me. It's been great meeting you, I
• 28:39
  mean. I know.
• 28:40
  Can we hug? Yeah.
• 28:41
  It's been so nice to meet. You.
• 28:43
  You too. I'm loving this speed dating
• 28:45
  thing because next we're moving on to Santana.
• 28:48
  Hello, how you doing doing so well?
• 28:51
  Thank you for having me. I'm.
• 28:52
  So excited to actually meet you in person.
• 28:54
  We've been talking so much online and there's nothing like
• 28:57
  being able to finally see each other and hug for the first
• 29:00
  time. Yeah, I think when when we saw
• 29:02
  each other, we were like. Yeah, it was crazy because it's
• 29:05
  like I recognised you immediately, I know, but that
• 29:08
  was our first time actually meeting.
• 29:09
  It was so fun. That was awesome.
• 29:11
  So tell me a bit about yourself. Well my name is Santana, I'm 24
• 29:16
  and I have LGMD type 2B. Cool.
• 29:20
  And we just interviewed your brother, actually.
• 29:22
  Yes. So can you give us a bit of an
• 29:25
  insight into your journey with LGMD?
• 29:27
  Yes. So I was doing dance in high
• 29:31
  school, very active in that way, and it started getting really
• 29:35
  hard for me to keep up. We would have to do these like
• 29:38
  timed runs, like 2 miles that were graded and then your grade
• 29:42
  was based on how fast you finish the run.
• 29:45
  And so I was doing the run one day and I, I just couldn't even
• 29:49
  finish it. I probably got like a little
• 29:51
  over a mile and my legs were just so sore just to a physical
• 29:56
  point of exhaustion, like I can't.
• 29:59
  So I'd stop and I think I got like a 0 on the run.
• 30:03
  My teacher failed me and I was like practically failing dance
• 30:06
  at that point. And that obviously wasn't
• 30:08
  normal. So we went and did all the blood
• 30:10
  work and stuff. And then of course the high
• 30:13
  liver enzymes and that was kind of that we already knew that my
• 30:17
  older sibling has it. So it was just kind of like an
• 30:20
  assumption, like you're, you have all the symptoms and signs.
• 30:24
  It's most likely the exact same thing.
• 30:26
  OK, cool. We're here in the conference
• 30:29
  where we're not singled out. We're all together, you know,
• 30:32
  we're all like facing the same challenges and have the same
• 30:36
  kind of experiences. How have you found the
• 30:37
  conference? It has been so welcoming.
• 30:42
  I not that I didn't anticipate it, but everyone was just so
• 30:46
  friendly and wanting to get to know everyone.
• 30:50
  And you meet someone once and you see them again and they'll
• 30:53
  say hi to you. And it's like an automatic
• 30:55
  friendship in a way. Yeah, but.
• 30:57
  You're connected in like a. Different way.
• 30:59
  Exactly. It's like an automatic
• 31:02
  vulnerable connection. And then also a lot of people
• 31:05
  are here like with their families or their spouses or
• 31:08
  partners and whatever it is. So you're not, I'm just meeting
• 31:11
  those people. You're meeting their family,
• 31:13
  their friends, their support system also.
• 31:15
  So it's like a whole web of people.
• 31:18
  It's been amazing. What's been like the main
• 31:21
  takeaway for you from this weekend?
• 31:24
  I think the main takeaway is just how big the community is
• 31:29
  and how connected everyone is. It's like I kind of knew it
• 31:33
  existed. I knew it was there, but I guess
• 31:36
  it feels more tangible now, like really hearing about all the
• 31:41
  resources, all the different foundations for different
• 31:44
  subtypes, and there's just kind of something for everyone.
• 31:48
  Even though it's so such a different experience for
• 31:50
  everyone, they still do a really good job at like covering that
• 31:54
  and bringing everyone together for.
• 31:56
  Sure. Yeah, I'm going to end this with
• 31:58
  one last question. What piece of advice would you
• 32:01
  give your younger self or someone that might be struggling
• 32:05
  with a diagnosis? My biggest piece of advice would
• 32:09
  be to never stop pushing yourself out of your comfort
• 32:13
  zone. I think a lot of things become
• 32:17
  uncomfortable as even just daily tasks become harder.
• 32:22
  It's really easy to kind of go into yourself and want to
• 32:26
  shelter yourself from that discomfort.
• 32:29
  But I think the more you push yourself and do those little
• 32:33
  things, get the mobility device, you know, take it out to the
• 32:36
  grocery store, Tell your friends about what you're going through.
• 32:40
  Ask a stranger for help. Like all of those things.
• 32:43
  The more you do it, the easier it is, and then you kind of
• 32:46
  build that confidence back up. That kind of gets taken away a
• 32:50
  little bit when you have a progressive disability.
• 32:53
  Definitely, and it takes a while to be open about using mobility
• 32:56
  aids. Especially with your friends.
• 32:58
  Oh yes. How have you found that journey?
• 33:00
  I luckily have the most amazing friends in the whole world.
• 33:04
  They have always been super supportive, no questions asked.
• 33:08
  Whatever I need, they'll do it in a heartbeat.
• 33:10
  So I'm very lucky in that sense that they really don't care.
• 33:14
  They're just kind of like, if we can get you there, then we'll
• 33:18
  figure out a way to get you there.
• 33:19
  Exactly. That's.
• 33:20
  The most important thing, right? Yeah, and it doesn't define you
• 33:22
  as. Well, no, not at all.
• 33:24
  You do a lot of tick tocks. I do.
• 33:27
  Life with LG and I think they're honestly amazing.
• 33:31
  Like you just get so real and it's so relatable.
• 33:34
  Where can we find you? You can find me my username on
• 33:37
  TikTok is Tana needs help. So that's where to find me
• 33:42
  because we do. And I kind of, I was like trying
• 33:45
  to get creative with the username and I was like, how can
• 33:48
  I? And I was like, I just want to
• 33:50
  put it out there, like I need help, You know, it's hard to ask
• 33:53
  for help. So if I just make it my username
• 33:55
  like yeah I need help, then maybe it makes other people feel
• 33:59
  a little more comfortable. That's such a good idea.
• 34:01
  So Tana needs help. Go follow me.
• 34:03
  Go find it. You're missing out, you know.
• 34:07
  Thank. You so much.
• 34:08
  Thank you. Good.
• 34:10
  Yes, it has. Listen, I'm going to say a
• 34:12
  touch. Oh yeah.
• 34:13
  This is not our last collaboration, just the first.
• 34:18
  So next we have. Grace, Hi, Grace, Hi.
• 34:22
  How are you doing? Good.
• 34:24
  Grace and I actually. Met in the Iowa LGMD 2 I
• 34:28
  conference in 2022. So we we go, we go back.
• 34:32
  You know, well, and we met online and probably like 2021 or
• 34:37
  something. Yeah, even before that.
• 34:40
  It's been so nice to to see you and to catch up and then.
• 34:43
  But tell me a bit about yourself.
• 34:45
  I'm Grace, I'm from Atlanta, GA and I have LG B2.
• 34:54
  I like you. I was diagnosed since 2020 when
• 34:58
  I was 16. After I was, I got
• 35:02
  rhabdomyolysis from lacrosse January of 2020.
• 35:08
  And then I was hospitalised for a few days and they were just
• 35:11
  kind of like, that's weird because I ran like a mile and
• 35:15
  that's it. And then I just sat out of
• 35:18
  lacrosse for like 2 months. And then when I tried to start
• 35:23
  participating in it again, I got rad dough again.
• 35:26
  And then so they gene tested me and found out that muscular
• 35:30
  dystrophy, which was also during quarantine.
• 35:33
  So that sucked, yeah. That must have been hard, right?
• 35:37
  So you were in hospital whilst COVID was happening?
• 35:40
  Yeah, like the March 12th, March 13th, whatever day where
• 35:45
  everything shut down, I was in the hospital so I missed my last
• 35:48
  few days. It's a junior year where they
• 35:51
  like taught everyone how to use Zoom and stuff for the rest of
• 35:54
  the school year. I didn't know.
• 35:56
  Well, they made me Zoom from the hospital to practise and then I
• 36:00
  got Rabio 2 more times in 2020, so I've had it four times in
• 36:05
  total. And is that like a result of?
• 36:08
  Working yourself too hard. Yeah, so I got it from, yeah,
• 36:12
  running a little under a mile at Lacrosse and then jogging a
• 36:15
  little at Lacrosse and then tubing at my friend's lake house
• 36:21
  twice. The next two times I had it,
• 36:23
  we're both from tubing, but I haven't had it since then.
• 36:26
  So yeah. Wow.
• 36:29
  So we're here at the LG MD 2025 conference.
• 36:32
  How you How have you found it? I've had.
• 36:35
  A lot of fun here. I feel like I was was fun, but
• 36:39
  it was a lot smaller and I've met so many more people here
• 36:44
  from everywhere and the eyeball one was only two.
• 36:49
  I right and so this I've seen how different all the subtypes
• 36:54
  are and it's been cool and all your talks were good.
• 36:59
  Thank you. Yeah, It's been amazing to not
• 37:03
  just meet with people with two I, but also other people with
• 37:06
  lots of different subtypes. And we have still so much in
• 37:09
  common, right? Yeah, and we have more, like,
• 37:12
  fun Hangouts at this one. Like we'll have drinks with
• 37:15
  people, go to the pool. Whereas I feel like Iowa's kind
• 37:18
  of just conferences, you know? So to finish, what is one piece
• 37:24
  of advice that you have for someone that's going through a
• 37:27
  diagnosis? I would.
• 37:30
  Say to lean on people like friends and family, but also
• 37:35
  medical people. I I already had a therapist, but
• 37:40
  I spent a lot of time talking about in therapy, learning how
• 37:43
  to advocate and kind of accept it.
• 37:46
  And I would just be conscious when looking online and just
• 37:51
  searching it up on WebMD because and stuff like that, it can be
• 37:54
  kind of scary. So yeah.
• 37:56
  Thank you so much for coming on. Of.
• 37:58
  Course, we'll keep in touch for sure.
• 38:01
  Yes. Honestly, I'm just so grateful
• 38:05
  for these guys. I mean, they're amazing and I'm
• 38:09
  so honoured to have had them on the podcast, so I hope you guys
• 38:13
  enjoyed that little segment. I'm just going to quickly talk
• 38:17
  about my experience at Disney World.
• 38:19
  You will see it all in my vlog as well, but I've had a lot of
• 38:24
  questions since then asking about accessibility and what it
• 38:27
  was like taking a wheelchair. So it was quite a full circle
• 38:31
  moment for me because as I've mentioned before in my podcast,
• 38:36
  the first time I ever used a wheelchair was at Epcot in
• 38:40
  Disney World. When I first needed that
• 38:42
  wheelchair when I was 16 years old, eight years ago, I really,
• 38:45
  really struggled. I cried when I sat in the
• 38:48
  wheelchair. I felt ashamed.
• 38:50
  I felt annoyed at myself that I'd given up, but I desperately
• 38:54
  needed that wheelchair. Whereas now I'm proudly posting
• 38:58
  about it online, I'm proudly talking about it on my podcast,
• 39:02
  and I'm inspiring other people to do the same, to just be proud
• 39:07
  of being wheelchair users and to open up and to accept needing
• 39:11
  mobility aids. It's not a bad thing at all.
• 39:13
  But I think back then, eight years ago, I saw it as a bad
• 39:16
  thing. I saw it as me giving up.
• 39:18
  But it's not at all. And I honestly would not have
• 39:22
  been able to do Disney again without a wheelchair.
• 39:25
  But it was absolutely boiling, it was so humid.
• 39:28
  And now I see why people don't tend to go in the summer.
• 39:31
  Oh my goodness. So I'm really glad I had it.
• 39:34
  And poor Tristan, fair play to him pushing me around.
• 39:38
  He was an absolute trooper. He did amazing.
• 39:40
  What was great about the experience was I was worried
• 39:43
  that I was going to be held up in the queues, but they saw me
• 39:47
  in the wheelchair and instantly I took my wheelchair to the exit
• 39:52
  ready for me, let me skip the line, go straight on the ride
• 39:55
  and a couple of the rides were accessible.
• 39:57
  Most of the rides you do have to transfer.
• 40:00
  So if that's not something you're comfortable in, I really
• 40:03
  don't know what the other option is because most of the rides
• 40:06
  were really awkward to sit in and to get out of.
• 40:10
  If it wasn't for trust. I'm being there to help me to
• 40:12
  lift me out of let of these rides.
• 40:15
  I would not have been able to do it.
• 40:17
  There were a couple of rides where you could stay in your
• 40:19
  wheelchair, for example. We did It's a Small World and
• 40:23
  they're all on boats. If you guys don't know.
• 40:25
  And there was one big accessible boat with a ramp straight from
• 40:29
  the platform. You can wheel onto it and just
• 40:31
  sit in the wheelchair on the boat to put your brakes on.
• 40:34
  And that was so cool. I didn't actually do that.
• 40:36
  I ended up transferring, but the seats were so low I would not
• 40:40
  have been able to get up. And it if it wasn't for Tristan
• 40:44
  lifting me out of there, I would have just gone on with my
• 40:46
  wheelchair. But it was good to know that
• 40:48
  option was there. I have to say, the staff was so
• 40:52
  accommodating. They would really look after
• 40:55
  your mobility aid and let you skip the queue to go on the ride
• 41:00
  straight away. Or they would give you a time to
• 41:02
  come back to avoid you having to wait around in the queue, which
• 41:06
  I think would have been more of an issue for me if I didn't have
• 41:08
  my wheelchair because in my wheelchair I'm not standing
• 41:11
  around. But anyway, it was still nice to
• 41:14
  have that treatment. And during the fireworks and the
• 41:17
  parades, there are accessible spots just for people in
• 41:20
  mobility aids to be there. But from my experience, they
• 41:23
  tend to book up really quickly. So you have to turn up like at
• 41:26
  least an hour before the event actually starts to get the
• 41:31
  space. And then leaving the Magic
• 41:35
  Kingdom. Obviously, we're in the Magic
• 41:36
  Kingdom at the end. We did Epcot Hollywood Studios
• 41:38
  in the Magic Kingdom. The end was such a rush to get
• 41:43
  on the monorail and to get home. The queues were insane.
• 41:47
  But there was a separate queue for accessibility and for people
• 41:52
  in mobility aids and we just got straight on, straight onto the
• 41:55
  next train and it was absolutely amazing.
• 41:57
  So I think it is really important to leave good reviews
• 42:01
  as well as bad. You know, I think people are
• 42:03
  more reluctant when it comes to good reviews.
• 42:05
  When you get bad experience somewhere, you're more likely to
• 42:09
  talk about that bad experience online and to share it with
• 42:12
  people and to leave it on TripAdvisor or whatever.
• 42:15
  But I think I had such a good experience that I think it's
• 42:18
  really important to share that as well.
• 42:20
  The staff are so lovely and so friendly and they will do
• 42:23
  anything to help accommodate that.
• 42:26
  And we didn't really go as much for the rides anyway.
• 42:30
  We just wanted to be there and scout the place out and cover as
• 42:33
  much ground as we could, which I could do because I was in a
• 42:36
  wheelchair and I didn't have that restriction of not being
• 42:39
  able to walk that much. And so it was truly a great
• 42:42
  experience. If you guys want to check out
• 42:45
  more content that I made in Florida, don't forget to check
• 42:48
  out my YouTube where obviously I did my vlog and also my
• 42:52
  Instagram at Unbalanced Podcast. I have a whole highlights page
• 42:56
  dedicated to Florida and the LGMD conference.
• 43:00
  My next episode will be an exciting one because it's on my
• 43:04
  birthday in a couple weeks. Only two weeks left until my
• 43:07
  birthday guys, how exciting. And so that'll be a special solo
• 43:11
  episode as well to celebrate my birthday because you know, I'm
• 43:15
  definitely not self centred at all.
• 43:17
  Anyway, I hope you guys enjoyed this episode.
• 43:21
  If you did, don't forget to rate this podcast 5 stars.
• 43:25
  That really helps me out. If you're watching on YouTube,
• 43:28
  don't forget to like this video and to subscribe, don't forget
• 43:31
  to follow this podcast and balance on your favourite
• 43:34
  podcast platform. Thank you.
• 43:36
  Thank you so much as always to kill LGMD to I for sponsoring
• 43:39
  this podcast and I will be back with you guys in a couple weeks
• 43:43
  for my birthday. Bye, guys.