October 2, 2024 • 22 mins
In 2007, Tony’s MG journey began with severe double vision, quickly leading to several episodes of pneumonia. He was in and out of the hospital and rehab facilities for many years, only reaching his MG diagnosis in 2014. Through it all, he was supported by his wife and tireless caregiver, Catherine, documenting every step along the way. From the start, Tony remained determined to regain his strength and to raise awareness for MG. His curiosity and drive led him to become a voice for the MG community across Canada. Though his life changed drastically, Tony embraced the grieving process for the life he once knew and found ways to cherish his new reality.
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Speaker 1 (00:03):
Hi everyone, and welcome back to Untold Stories Life with
a Severe autoimmune condition. This podcast is a production of
Ruby's Studio in partnership with Argenics, and I'm your host,
Martine Hackett. I'm an Associate professor and Director of Public
Health Programs at Hofstra University, and as a researcher, educator,
and public health professional, I've spent my career studying the
(00:25):
complex realities of health care disparities and advocating to do
something about them. On this podcast, I speak with real
people living with severe autoimmune conditions like Mayasthenia gravis or
MG and chronic inflammatory demilinating polyneuropathy otherwise known as CIDP
to help expand the conversation around these shared experiences. Every
(00:50):
person with a severe autoimmune condition has a unique diagnosis, journey,
and stories of struggles, resilience and hope. We're here to
shine a light on as many of these amazing stories
as we can, stressing the power of community care and
self advocacy as we embrace this very emotional journey together. Today,
(01:12):
we're exploring the challenges of navigating grief in life with
MG and its impact on one's whole support system. For
many it's not just about managing symptoms and treatments, it's
about how it reshapes their lives, often leading to a
profound sense of loss. Joining us today is Tony, who
has been on a particularly challenging journey diagnosed with MG
(01:34):
after years of arduous health challenges, Tony has had an
invaluable partner in his wife, Catherine. Catherine has not only
been his steadfast supporter, but also his advocate, carefully documenting
their experiences. Together, they've navigated the complexities of MG, turning
their personal struggles into a larger mission to raise awareness
(01:55):
and support for MG in Canada. Today we'll hear how
his diagnosis and their journey to acceptance brought unexpected strength
and gratitude into their lives when they needed it the most.
It's an emotional story of transforming grief into inspiration for
themselves and others. So Tony and Catherine, thank you so
(02:19):
much for agreeing to talk with me today. I'd love
to start with Tony. Your MG journey began in two
thousand and seven. Tell me about your first symptoms and
what was going through your mind then?
Speaker 2 (02:32):
What happened in two thousand and seven, I was planning
a flight out to Vancouver, and all of a sudden
that work I developed double vision. So I went to
see my optometrist and she didn't want me to fly,
thinking that it might be a brain aneurysm. So it
turned out to be a prolact and brain tumor. But
in her notes to my GP, she indicated that he
(02:54):
should look for my senior gravis and he did nothing.
Speaker 3 (02:58):
So almost to the day that I.
Speaker 2 (03:01):
Had double vision in two thousand and seven, I got
it again in two thousand and eight.
Speaker 1 (03:09):
You might be wondering what's a prolactin brain tumor. Well,
according to the Mayo Clinic, it's also called prolactinoma. This
is a non cancerous tumor that shows up in your
pituitary gland, which is located at the base of your brain. Now,
while it's not life threatening, it can cause vision problems
and other issues, and as we know, double vision and
(03:30):
drooping eyelids are also common symptoms of myasthenia gravis. Hence
the note from Tony's doctor to have him screened for
a potential MG diagnosis, as the double vision persisted after
his brain tumor was treated. So how did that impact
your day to day life.
Speaker 2 (03:48):
Well, double vision is one of those things you really
don't want to have, okay, because you're always walking and
crashing into things. And the only way I could get
around it is by covering up one eye the patch.
I eventually had eye patches and then prisms and got
my full vision back. But saying that maya senior Gravis
(04:10):
journey started basically two thousand and seven. I wasn't diagnosed
until two thy twelve. I was in the hospital for
almost four years, in and out, mostly in the hospital,
spent various times in rehab centers, and if it hadn't
been for my dear wife, Katherine, I wouldn't be alive today.
Speaker 3 (04:31):
That's guaranteed.
Speaker 1 (04:33):
That's quite a tall order, Catherine, and so I think
it's the perfect opportunity to ask you next that you've
been by Tony side throughout his MG journey, what was
going through your mind at this time?
Speaker 4 (04:45):
Well, there's many issues that were going through my mind.
I was very frustrated with the medical assessment because we
seem to be going from doctor to doctor to doctor
to doctor, and Tony not only had double vision, he
also developed his face so he couldn't swallow.
Speaker 1 (05:01):
Dysphasia is a condition where people have trouble swallowing. As
we have learned MG, symptoms can include muscle weakness, often
affecting those that control the eyes, mouth, throat, and limbs.
Some might not be able to swallow at all, while
others might struggle with swallowing liquids, foods, or even saliva.
According to the NIH, the biggest challenge with dysphasia is
(05:25):
getting enough calories to keep the body nourished, and it
can lead to some serious health issues.
Speaker 4 (05:32):
And then he had many, many episodes of aspiration ammonia.
He was hospitalized eight times. I have all the dates
that he was hospitalized for his aspiration ammonia. And finally
we were referred to as doctors who did what they
call a crecopharynge myotomy because he thought there was something
going on with the muscles in the throat. After this
(05:54):
crecopharyngeal didn't work, he said, I think it's something neurological.
I think it could be an autommune and he was
right on with his assessment.
Speaker 1 (06:03):
So tell me, Catherine, back then, did you have any
fears or worries that you might not have shared with Tony?
And can you share them now.
Speaker 3 (06:11):
Oh sure.
Speaker 4 (06:11):
I worried about that. He wasn't going to make it,
mainly because he went into three crisis situations with is
Mayaseneo Gravis. Finally they had to put in a feeding tube. Yeah,
and they also had to put a tracheotomy into help
with his breathing. So I was I didn't think it
was going to make it. It was very, very traumatic
for me, and at the time I guess he adrenaline
(06:34):
sort of kicks in and you do all you can
your foreign doctors.
Speaker 1 (06:37):
You're anxious, of course, because you're right there through some
really terrifying ups and downs. Tony going through these various
treatments and crises. What was that like for you?
Speaker 3 (06:50):
Well, I was in hospital most of the time.
Speaker 2 (06:53):
So the best thing that ever happened to me was
having a good advocate in the name of Katherine. I
spent nine months in various rehabs, three months at a time.
When I was in hospital, I couldn't walk, I couldn't
talk for a while, so that's why I went to rehab.
I solely got my strength back and now I'm fairly stable.
(07:14):
I still have a few problems with fatigue. Fatigue is
most probably with vites and new gravels. I have what
are known as a generalized my GINGI of rabus. So
have the double vision, the swallowing problems, reading problems, and
just general fatigue. My whole goal was to be positive.
You have to be positive in a disease like this.
(07:36):
That's the only way out, is what's the alternative?
Speaker 1 (07:39):
Yeah, As you can hear in Tony's voice, the grieving
process has been a part of finding a way to
a brighter point of view. A diagnosis of MG can
often mean going through major life changes. This can of
course be challenging, calling for a strong support system through uncertainty.
(08:00):
And it sounds like as Catherine had mentioned that during
those years before your MG diagnosis was confirmed, you did
experience various treatments, including the insertion of the gastrostomy tube
or the G tube in your stomach. Were you afraid
of how the treatments would affect your daily life? How
did it push you forward?
Speaker 3 (08:18):
Again?
Speaker 2 (08:18):
I think I was fairly positive. I mean, what can
you do? Said, There's nothing you could do. That's the
only thing that saved my life was having the feeding
to I got down to one hundred and forty pounds
at that time.
Speaker 1 (08:34):
Oh my goodness, but you're here now.
Speaker 2 (08:37):
I'm here now, Yeah, thankfully I'm here. My big thing
was to be able to eat a either a hamburger
or a steak. That was my goal to get out
and I was able to do that. So in hospitals
and the various rehabs I had, the nurses just they're
killing themselves laughing.
Speaker 3 (08:57):
You said, you want what.
Speaker 1 (09:00):
It sounds like after so many years of, like you said,
kind of going back and forth, doctors really having that uncertainty,
that finally receiving that diagnosis of my aesthenia gravis must
have been a significant moment. How did you manage the
emotional aspects before that of not having a clear diagnosis
for such a long period.
Speaker 2 (09:19):
Well, thank goodness for Catherine. My family live out West Or.
I would get visits from my daughter and my son.
They're coming visiting, boost me up, and they'd brought the
family much much closer together and they're again positive thinking
and family helped me pull through this whole journey. And
you know, basically, you have two choices. You're either getting
(09:42):
accepted or you're not going to accept it. So yeah,
in my case, I chose to be positive. It's got
to be something positive. And in my world that somebody
always worse off than I am. And that's what got
me through a lot of things. And I had terrific
nurses when I was in my various stages, and they said,
(10:05):
how can you be so positives? A Well, what choice
do I have? You know? The grief I have is
I can't do some of the things I used to
love to do. I used to love to ski, I
used to love to play hockey, rollerblade, rollerblade, and I
can't do any of that. So what I say is
(10:25):
I'm not one hundred percent. I'm eighty percent or eighty
five percent of what I could do. I'd love to
be one hundred percent.
Speaker 1 (10:33):
Yeah, And despite the many changes, I know you found
other ways to be active.
Speaker 3 (10:38):
Correct.
Speaker 2 (10:38):
Now we have we have a little dog, Archie, and
I'm out three or four times a day with him
walking him. So at least I'm outside come, rain, sun, winter,
I'm outside walking him.
Speaker 3 (10:52):
He's a great companion.
Speaker 1 (10:54):
Excellent. We'll be back with more untold stories after a
quick break. As a global immunology company committed to improving
the lives of people living with severe autoimmune conditions. Our
Genics is dedicated to serving the mayasthenia gravis or MG
(11:14):
community through MG United. MG United was created by Urgenics
to support those living with MG and their caregivers by
providing the latest information, resources and support to address the
unique ways MG can affect their lives. Wherever you are
in your Maasthenia Gravis journey, MG United wants to help
(11:36):
make today a better day. For more information about MG United,
visit mgashunited dot com if you're in the United States,
or MG United Canada at mgdash United dot CAA if
you're in Canada. And now back to untold stories. So, Catherine,
(11:57):
it sounds like when we talked about the idea of
aggrieving process for Tony, it sounds like, Yeah, there might
be some grieving that you're going through in terms of
the changes that you're seeing in him. And can you
talk a little bit about how his diagnosis has changed
your life.
Speaker 4 (12:12):
I was an integral part in not just his care
but also with I used to do a lot of
record keeping. There's definitely a burnout, you know, in the
sense that I'm always on the alert for some kind
of a situation to occur, which promotes some kind of
a crisis or something. But I mean, Tony, I can
say is trying. Yeah, So I'm appreciative of the fact
(12:36):
that he's still here with me, but I also suffer
a loss.
Speaker 1 (12:41):
It's a lot, and it sounds like it's ongoing. Yeah, Tony,
I'd love to talk about the adjustments that you've had
to make in your lifestyle. You mentioned a little bit
about how active you used to be. What kind of
changes have you made in your lifestyle so that you
can manage your symptoms effectively? How do you balance treatment
and everyday activity.
Speaker 2 (13:01):
I would consider myself as medical remission. So at my
activity now is walking Archie and I will go out
and will walk anywhere from three to five miles in
my day. Whereas before I was on I was walking
with a either in a wheelchair, a walker, and a cane.
(13:22):
I no longer use the cane, which is great. I
have to take it easy, but I'm just so happy
to be relatively normal compared to other people. But some
people are going to is really really heartbreaking. You have
to set yourself a little goals and I have achieved
those goals and so far, touch Wood, I am still
(13:44):
up and standing. No cane, no walker, no wheelchair.
Speaker 1 (13:49):
Yeah, and doing those five mile walks every day.
Speaker 3 (13:52):
Correct, excellent.
Speaker 1 (13:54):
And I know we've talked a little bit before about grief,
and you know, I think we know that grief is
just really annoy normal response to major loss or change.
Can you talk a little bit about how you were
able to manage some of those more unpredictable moments.
Speaker 2 (14:09):
I tell people that, you know, I'd rather be walking
on the grass and watching it grow.
Speaker 1 (14:16):
And thinking about the things that you're not able to
do anymore. Do you grieve those things?
Speaker 4 (14:20):
Yeah?
Speaker 2 (14:21):
I would love to ski with my daughter, my son,
and my grandson. My grandson sixteen. That would be my
ultimate goal is to be able to go skiing with
them or go skating with them. But I know my limitations.
Speaker 1 (14:33):
And since your diagnosis, you've been involved in advocacy and
raising awareness with the Mayasthenia Gravis Society of Canada. What
motivated you to do that and what has your experience
been like connecting with others in the MG community.
Speaker 2 (14:47):
It's interesting because a lot of people are deal with
of what my senior gravis is. For instance, when we
went into a drug store and I handed the girl
in my card I said, this is a list of
medications that can't take and she was shocks. Can I
take a copy of this because I have miocenic Gravis patients?
Speaker 3 (15:05):
Oh wow, so absolutely take a copy. That's what we're for.
Speaker 2 (15:09):
So yeah, I've been out advocating for myasnia gravis. Anybody
that asked me what it is, they're willing to spend
fifteen to twenty minutes of my time or their time,
I'm ready to talk to them.
Speaker 1 (15:23):
And the work that you're doing with the MG community
in Canada, has that helped you? Has that given you
any support or how has that affected you emotionally or otherwise?
Speaker 2 (15:33):
Well, it's been great because we have a super people involved.
I'm no longer on the board for Miocene Gravis Society
of Canada. Are designed a while ago, but I get
still in contact and I still volunteer to do activities
and the activities that come up, and we have various
walkathons and golf tournaments, you know, to get people involved.
(15:55):
Mya senior gravis across Canada is still not known. You
go into farm verses, go into doctor's office and they oh,
what's what's that?
Speaker 3 (16:04):
Oh, we did.
Speaker 2 (16:05):
A little twenty minute session in medical school about MT right,
you know, and then that's about it. Well, it's shocking
because there's more and more people being diagnosed with mycene values.
Speaker 1 (16:20):
A twenty twenty one study from the Journal of Medicine
in Life reports that the number of MG cases have
more than doubled in the past twenty years. According to
the same report, researchers believe this rise can most likely
be attributed to better diagnostic tools, improved treatments, and an
overall increase in population longevity. So it sounds like that's
(16:43):
given you something to be able to help others and
to share information about this condition.
Speaker 2 (16:49):
Correct and that very often I'll get a call from
somebody that's that's seen my story on the Facebook page,
and then can I give you a call, and where
I have a long conversation and a lot of people
they're appreciated speaking to somebody with my senior graves and
telling our stories and comparing stories, and it really helps
because every story is different. It's amazing the disease is
(17:12):
the same, but my senior gravest affects so many people differently.
I still have friends that are in wheelchairs and they've
had my SNI Graves for twenty years. Well, so I
consider myself very, very lucky.
Speaker 1 (17:27):
And how do you approach others with MG who are
just processing their diagnosis and probably also grieving the loss
of what they knew their lives to be.
Speaker 2 (17:37):
If I come across somebody on you know, on the
MG Facebook, I'll I'll respond. You know, you have to
one be positive, Always be positive, because again, somebody off,
somebody is always worse off than you are. And that's
been my whole attitude ever since I had this disease.
Speaker 3 (17:56):
There's somebody worse off than I am.
Speaker 1 (17:58):
So Tony, could you talk a little bit about throughout
your experience, how have you maintained this positive outlook? What
advice would you give to someone who's just starting their
journey with a chronic illness.
Speaker 2 (18:09):
That you have a super caregiver, a very good advocate
that stands up for you. Because in certain situations, I
couldn't talk, I couldn't walk, as Katheryne knows, so thank
goodness Catherine was there. And that really is the crux
of the whole situation, is to have a caregiver and
(18:30):
somebody an advocate that's willing to speak for you. And
God bless Catherine. If it hadn't been her, as I say,
I wouldn't be alive today.
Speaker 1 (18:41):
Thinking about the caregiver piece, though, Catherine, do you know
of the names of some caregiver support organizations that are
available in Canada.
Speaker 4 (18:48):
That we don't know? I think there's caregiving support for
some issues like demansia and things like that, But I
think there should be a symposium on caregivers. How does
the disease affect the person who's sick, but also the
affect component of it. How is the caregiver being impacted
by the disease. Sometimes I would sit up in his
(19:11):
room all night with them to make sure the breathing
tube was working. And I remember one time a nurse
said to me, You've got to go home. You don't
look good. Go home. So it's affect and effect. There's
not enough support for caregivers and burnet the burnout situation.
Speaker 1 (19:27):
Not enough and so Tony, looking forward, what are your
hopes and goals for Canada's MG community.
Speaker 2 (19:35):
One of the goals is to join everybody with mys
senior gravis, those small groups you know, have one voice
and speaking to political parties and governments to you know,
really recognize my senior Gravis. The month of June is
Myseni Gravis month, so various buildings throughout there Canada are laid.
Speaker 3 (19:57):
Up in Teal.
Speaker 2 (19:58):
We're trying to get is all across Canada for the
month of June.
Speaker 3 (20:02):
My senior gravis. No no borders.
Speaker 2 (20:05):
You know, if you have micena gravis in India, you
have it in Australia. It's still the same symptoms.
Speaker 1 (20:11):
And it sounds like another goal will be to build
up the caregiver community for MG as well.
Speaker 2 (20:17):
Absolutely, that is really lacking. Absolutely, it is really lacking anywhere,
whether it be here in Canada or and I'm not
so sure about the States as well, whether there's a
caregiver society.
Speaker 3 (20:31):
I mean, it would be idea for Catherine to start that.
Speaker 1 (20:34):
Hey, there you go. You should have seen Catherine's face.
Speaker 4 (20:38):
Wow.
Speaker 2 (20:42):
I can't give Katherine enough credit for what you've done
them for all of your love and support.
Speaker 1 (20:48):
Absolutely, and on that note, thank you so much, both
Tony and Catherine for your time today. This has been
a lovely conversation.
Speaker 2 (20:57):
Thank you, Thank you so much, really enjoyed and thanks
for having us.
Speaker 1 (21:01):
You're really good at what you do, Martin, Tony and
Catherine Thank you for sharing all of that with us. Tony.
Your story of coping with MG with Catherine by your
side really shows how embracing change can foster hope and unity.
Thanks for tuning in to another episode of Untold Stories.
(21:23):
We'll be back in two weeks for a very special
Season three finale. Don't forget to rate and review us
wherever you get your podcasts Untold Stories Life with a
Severe Autoimmune Condition is produced by Ruby's Studio from iHeartMedia
in partnership with Argenix, and hosted by me Martin Hackett.
Our executive producer is Molly Soosha. Our EP of Post
(21:44):
Production is Matt Stillo, along with Supervising producer Sierra Kaiser
and post producer Sierra Spreen. This episode was written by
Diana Davis.
Hi everyone, and welcome back to Untold Stories Life with
a Severe autoimmune condition. This podcast is a production of
Ruby's Studio in partnership with Argenics, and I'm your host,
Martine Hackett. I'm an Associate professor and Director of Public
Health Programs at Hofstra University, and as a researcher, educator,
and public health professional, I've spent my career studying the
(00:25):
complex realities of health care disparities and advocating to do
something about them. On this podcast, I speak with real
people living with severe autoimmune conditions like Mayasthenia gravis or
MG and chronic inflammatory demilinating polyneuropathy otherwise known as CIDP
to help expand the conversation around these shared experiences. Every
(00:50):
person with a severe autoimmune condition has a unique diagnosis, journey,
and stories of struggles, resilience and hope. We're here to
shine a light on as many of these amazing stories
as we can, stressing the power of community care and
self advocacy as we embrace this very emotional journey together. Today,
(01:12):
we're exploring the challenges of navigating grief in life with
MG and its impact on one's whole support system. For
many it's not just about managing symptoms and treatments, it's
about how it reshapes their lives, often leading to a
profound sense of loss. Joining us today is Tony, who
has been on a particularly challenging journey diagnosed with MG
(01:34):
after years of arduous health challenges, Tony has had an
invaluable partner in his wife, Catherine. Catherine has not only
been his steadfast supporter, but also his advocate, carefully documenting
their experiences. Together, they've navigated the complexities of MG, turning
their personal struggles into a larger mission to raise awareness
(01:55):
and support for MG in Canada. Today we'll hear how
his diagnosis and their journey to acceptance brought unexpected strength
and gratitude into their lives when they needed it the most.
It's an emotional story of transforming grief into inspiration for
themselves and others. So Tony and Catherine, thank you so
(02:19):
much for agreeing to talk with me today. I'd love
to start with Tony. Your MG journey began in two
thousand and seven. Tell me about your first symptoms and
what was going through your mind then?
Speaker 2 (02:32):
What happened in two thousand and seven, I was planning
a flight out to Vancouver, and all of a sudden
that work I developed double vision. So I went to
see my optometrist and she didn't want me to fly,
thinking that it might be a brain aneurysm. So it
turned out to be a prolact and brain tumor. But
in her notes to my GP, she indicated that he
(02:54):
should look for my senior gravis and he did nothing.
Speaker 3 (02:58):
So almost to the day that I.
Speaker 2 (03:01):
Had double vision in two thousand and seven, I got
it again in two thousand and eight.
Speaker 1 (03:09):
You might be wondering what's a prolactin brain tumor. Well,
according to the Mayo Clinic, it's also called prolactinoma. This
is a non cancerous tumor that shows up in your
pituitary gland, which is located at the base of your brain. Now,
while it's not life threatening, it can cause vision problems
and other issues, and as we know, double vision and
(03:30):
drooping eyelids are also common symptoms of myasthenia gravis. Hence
the note from Tony's doctor to have him screened for
a potential MG diagnosis, as the double vision persisted after
his brain tumor was treated. So how did that impact
your day to day life.
Speaker 2 (03:48):
Well, double vision is one of those things you really
don't want to have, okay, because you're always walking and
crashing into things. And the only way I could get
around it is by covering up one eye the patch.
I eventually had eye patches and then prisms and got
my full vision back. But saying that maya senior Gravis
(04:10):
journey started basically two thousand and seven. I wasn't diagnosed
until two thy twelve. I was in the hospital for
almost four years, in and out, mostly in the hospital,
spent various times in rehab centers, and if it hadn't
been for my dear wife, Katherine, I wouldn't be alive today.
Speaker 3 (04:31):
That's guaranteed.
Speaker 1 (04:33):
That's quite a tall order, Catherine, and so I think
it's the perfect opportunity to ask you next that you've
been by Tony side throughout his MG journey, what was
going through your mind at this time?
Speaker 4 (04:45):
Well, there's many issues that were going through my mind.
I was very frustrated with the medical assessment because we
seem to be going from doctor to doctor to doctor
to doctor, and Tony not only had double vision, he
also developed his face so he couldn't swallow.
Speaker 1 (05:01):
Dysphasia is a condition where people have trouble swallowing. As
we have learned MG, symptoms can include muscle weakness, often
affecting those that control the eyes, mouth, throat, and limbs.
Some might not be able to swallow at all, while
others might struggle with swallowing liquids, foods, or even saliva.
According to the NIH, the biggest challenge with dysphasia is
(05:25):
getting enough calories to keep the body nourished, and it
can lead to some serious health issues.
Speaker 4 (05:32):
And then he had many, many episodes of aspiration ammonia.
He was hospitalized eight times. I have all the dates
that he was hospitalized for his aspiration ammonia. And finally
we were referred to as doctors who did what they
call a crecopharynge myotomy because he thought there was something
going on with the muscles in the throat. After this
(05:54):
crecopharyngeal didn't work, he said, I think it's something neurological.
I think it could be an autommune and he was
right on with his assessment.
Speaker 1 (06:03):
So tell me, Catherine, back then, did you have any
fears or worries that you might not have shared with Tony?
And can you share them now.
Speaker 3 (06:11):
Oh sure.
Speaker 4 (06:11):
I worried about that. He wasn't going to make it,
mainly because he went into three crisis situations with is
Mayaseneo Gravis. Finally they had to put in a feeding tube. Yeah,
and they also had to put a tracheotomy into help
with his breathing. So I was I didn't think it
was going to make it. It was very, very traumatic
for me, and at the time I guess he adrenaline
(06:34):
sort of kicks in and you do all you can
your foreign doctors.
Speaker 1 (06:37):
You're anxious, of course, because you're right there through some
really terrifying ups and downs. Tony going through these various
treatments and crises. What was that like for you?
Speaker 3 (06:50):
Well, I was in hospital most of the time.
Speaker 2 (06:53):
So the best thing that ever happened to me was
having a good advocate in the name of Katherine. I
spent nine months in various rehabs, three months at a time.
When I was in hospital, I couldn't walk, I couldn't
talk for a while, so that's why I went to rehab.
I solely got my strength back and now I'm fairly stable.
(07:14):
I still have a few problems with fatigue. Fatigue is
most probably with vites and new gravels. I have what
are known as a generalized my GINGI of rabus. So
have the double vision, the swallowing problems, reading problems, and
just general fatigue. My whole goal was to be positive.
You have to be positive in a disease like this.
(07:36):
That's the only way out, is what's the alternative?
Speaker 1 (07:39):
Yeah, As you can hear in Tony's voice, the grieving
process has been a part of finding a way to
a brighter point of view. A diagnosis of MG can
often mean going through major life changes. This can of
course be challenging, calling for a strong support system through uncertainty.
(08:00):
And it sounds like as Catherine had mentioned that during
those years before your MG diagnosis was confirmed, you did
experience various treatments, including the insertion of the gastrostomy tube
or the G tube in your stomach. Were you afraid
of how the treatments would affect your daily life? How
did it push you forward?
Speaker 3 (08:18):
Again?
Speaker 2 (08:18):
I think I was fairly positive. I mean, what can
you do? Said, There's nothing you could do. That's the
only thing that saved my life was having the feeding
to I got down to one hundred and forty pounds
at that time.
Speaker 1 (08:34):
Oh my goodness, but you're here now.
Speaker 2 (08:37):
I'm here now, Yeah, thankfully I'm here. My big thing
was to be able to eat a either a hamburger
or a steak. That was my goal to get out
and I was able to do that. So in hospitals
and the various rehabs I had, the nurses just they're
killing themselves laughing.
Speaker 3 (08:57):
You said, you want what.
Speaker 1 (09:00):
It sounds like after so many years of, like you said,
kind of going back and forth, doctors really having that uncertainty,
that finally receiving that diagnosis of my aesthenia gravis must
have been a significant moment. How did you manage the
emotional aspects before that of not having a clear diagnosis
for such a long period.
Speaker 2 (09:19):
Well, thank goodness for Catherine. My family live out West Or.
I would get visits from my daughter and my son.
They're coming visiting, boost me up, and they'd brought the
family much much closer together and they're again positive thinking
and family helped me pull through this whole journey. And
you know, basically, you have two choices. You're either getting
(09:42):
accepted or you're not going to accept it. So yeah,
in my case, I chose to be positive. It's got
to be something positive. And in my world that somebody
always worse off than I am. And that's what got
me through a lot of things. And I had terrific
nurses when I was in my various stages, and they said,
(10:05):
how can you be so positives? A Well, what choice
do I have? You know? The grief I have is
I can't do some of the things I used to
love to do. I used to love to ski, I
used to love to play hockey, rollerblade, rollerblade, and I
can't do any of that. So what I say is
(10:25):
I'm not one hundred percent. I'm eighty percent or eighty
five percent of what I could do. I'd love to
be one hundred percent.
Speaker 1 (10:33):
Yeah, And despite the many changes, I know you found
other ways to be active.
Speaker 3 (10:38):
Correct.
Speaker 2 (10:38):
Now we have we have a little dog, Archie, and
I'm out three or four times a day with him
walking him. So at least I'm outside come, rain, sun, winter,
I'm outside walking him.
Speaker 3 (10:52):
He's a great companion.
Speaker 1 (10:54):
Excellent. We'll be back with more untold stories after a
quick break. As a global immunology company committed to improving
the lives of people living with severe autoimmune conditions. Our
Genics is dedicated to serving the mayasthenia gravis or MG
(11:14):
community through MG United. MG United was created by Urgenics
to support those living with MG and their caregivers by
providing the latest information, resources and support to address the
unique ways MG can affect their lives. Wherever you are
in your Maasthenia Gravis journey, MG United wants to help
(11:36):
make today a better day. For more information about MG United,
visit mgashunited dot com if you're in the United States,
or MG United Canada at mgdash United dot CAA if
you're in Canada. And now back to untold stories. So, Catherine,
(11:57):
it sounds like when we talked about the idea of
aggrieving process for Tony, it sounds like, Yeah, there might
be some grieving that you're going through in terms of
the changes that you're seeing in him. And can you
talk a little bit about how his diagnosis has changed
your life.
Speaker 4 (12:12):
I was an integral part in not just his care
but also with I used to do a lot of
record keeping. There's definitely a burnout, you know, in the
sense that I'm always on the alert for some kind
of a situation to occur, which promotes some kind of
a crisis or something. But I mean, Tony, I can
say is trying. Yeah, So I'm appreciative of the fact
(12:36):
that he's still here with me, but I also suffer
a loss.
Speaker 1 (12:41):
It's a lot, and it sounds like it's ongoing. Yeah, Tony,
I'd love to talk about the adjustments that you've had
to make in your lifestyle. You mentioned a little bit
about how active you used to be. What kind of
changes have you made in your lifestyle so that you
can manage your symptoms effectively? How do you balance treatment
and everyday activity.
Speaker 2 (13:01):
I would consider myself as medical remission. So at my
activity now is walking Archie and I will go out
and will walk anywhere from three to five miles in
my day. Whereas before I was on I was walking
with a either in a wheelchair, a walker, and a cane.
(13:22):
I no longer use the cane, which is great. I
have to take it easy, but I'm just so happy
to be relatively normal compared to other people. But some
people are going to is really really heartbreaking. You have
to set yourself a little goals and I have achieved
those goals and so far, touch Wood, I am still
(13:44):
up and standing. No cane, no walker, no wheelchair.
Speaker 1 (13:49):
Yeah, and doing those five mile walks every day.
Speaker 3 (13:52):
Correct, excellent.
Speaker 1 (13:54):
And I know we've talked a little bit before about grief,
and you know, I think we know that grief is
just really annoy normal response to major loss or change.
Can you talk a little bit about how you were
able to manage some of those more unpredictable moments.
Speaker 2 (14:09):
I tell people that, you know, I'd rather be walking
on the grass and watching it grow.
Speaker 1 (14:16):
And thinking about the things that you're not able to
do anymore. Do you grieve those things?
Speaker 4 (14:20):
Yeah?
Speaker 2 (14:21):
I would love to ski with my daughter, my son,
and my grandson. My grandson sixteen. That would be my
ultimate goal is to be able to go skiing with
them or go skating with them. But I know my limitations.
Speaker 1 (14:33):
And since your diagnosis, you've been involved in advocacy and
raising awareness with the Mayasthenia Gravis Society of Canada. What
motivated you to do that and what has your experience
been like connecting with others in the MG community.
Speaker 2 (14:47):
It's interesting because a lot of people are deal with
of what my senior gravis is. For instance, when we
went into a drug store and I handed the girl
in my card I said, this is a list of
medications that can't take and she was shocks. Can I
take a copy of this because I have miocenic Gravis patients?
Speaker 3 (15:05):
Oh wow, so absolutely take a copy. That's what we're for.
Speaker 2 (15:09):
So yeah, I've been out advocating for myasnia gravis. Anybody
that asked me what it is, they're willing to spend
fifteen to twenty minutes of my time or their time,
I'm ready to talk to them.
Speaker 1 (15:23):
And the work that you're doing with the MG community
in Canada, has that helped you? Has that given you
any support or how has that affected you emotionally or otherwise?
Speaker 2 (15:33):
Well, it's been great because we have a super people involved.
I'm no longer on the board for Miocene Gravis Society
of Canada. Are designed a while ago, but I get
still in contact and I still volunteer to do activities
and the activities that come up, and we have various
walkathons and golf tournaments, you know, to get people involved.
(15:55):
Mya senior gravis across Canada is still not known. You
go into farm verses, go into doctor's office and they oh,
what's what's that?
Speaker 3 (16:04):
Oh, we did.
Speaker 2 (16:05):
A little twenty minute session in medical school about MT right,
you know, and then that's about it. Well, it's shocking
because there's more and more people being diagnosed with mycene values.
Speaker 1 (16:20):
A twenty twenty one study from the Journal of Medicine
in Life reports that the number of MG cases have
more than doubled in the past twenty years. According to
the same report, researchers believe this rise can most likely
be attributed to better diagnostic tools, improved treatments, and an
overall increase in population longevity. So it sounds like that's
(16:43):
given you something to be able to help others and
to share information about this condition.
Speaker 2 (16:49):
Correct and that very often I'll get a call from
somebody that's that's seen my story on the Facebook page,
and then can I give you a call, and where
I have a long conversation and a lot of people
they're appreciated speaking to somebody with my senior graves and
telling our stories and comparing stories, and it really helps
because every story is different. It's amazing the disease is
(17:12):
the same, but my senior gravest affects so many people differently.
I still have friends that are in wheelchairs and they've
had my SNI Graves for twenty years. Well, so I
consider myself very, very lucky.
Speaker 1 (17:27):
And how do you approach others with MG who are
just processing their diagnosis and probably also grieving the loss
of what they knew their lives to be.
Speaker 2 (17:37):
If I come across somebody on you know, on the
MG Facebook, I'll I'll respond. You know, you have to
one be positive, Always be positive, because again, somebody off,
somebody is always worse off than you are. And that's
been my whole attitude ever since I had this disease.
Speaker 3 (17:56):
There's somebody worse off than I am.
Speaker 1 (17:58):
So Tony, could you talk a little bit about throughout
your experience, how have you maintained this positive outlook? What
advice would you give to someone who's just starting their
journey with a chronic illness.
Speaker 2 (18:09):
That you have a super caregiver, a very good advocate
that stands up for you. Because in certain situations, I
couldn't talk, I couldn't walk, as Katheryne knows, so thank
goodness Catherine was there. And that really is the crux
of the whole situation, is to have a caregiver and
(18:30):
somebody an advocate that's willing to speak for you. And
God bless Catherine. If it hadn't been her, as I say,
I wouldn't be alive today.
Speaker 1 (18:41):
Thinking about the caregiver piece, though, Catherine, do you know
of the names of some caregiver support organizations that are
available in Canada.
Speaker 4 (18:48):
That we don't know? I think there's caregiving support for
some issues like demansia and things like that, But I
think there should be a symposium on caregivers. How does
the disease affect the person who's sick, but also the
affect component of it. How is the caregiver being impacted
by the disease. Sometimes I would sit up in his
(19:11):
room all night with them to make sure the breathing
tube was working. And I remember one time a nurse
said to me, You've got to go home. You don't
look good. Go home. So it's affect and effect. There's
not enough support for caregivers and burnet the burnout situation.
Speaker 1 (19:27):
Not enough and so Tony, looking forward, what are your
hopes and goals for Canada's MG community.
Speaker 2 (19:35):
One of the goals is to join everybody with mys
senior gravis, those small groups you know, have one voice
and speaking to political parties and governments to you know,
really recognize my senior Gravis. The month of June is
Myseni Gravis month, so various buildings throughout there Canada are laid.
Speaker 3 (19:57):
Up in Teal.
Speaker 2 (19:58):
We're trying to get is all across Canada for the
month of June.
Speaker 3 (20:02):
My senior gravis. No no borders.
Speaker 2 (20:05):
You know, if you have micena gravis in India, you
have it in Australia. It's still the same symptoms.
Speaker 1 (20:11):
And it sounds like another goal will be to build
up the caregiver community for MG as well.
Speaker 2 (20:17):
Absolutely, that is really lacking. Absolutely, it is really lacking anywhere,
whether it be here in Canada or and I'm not
so sure about the States as well, whether there's a
caregiver society.
Speaker 3 (20:31):
I mean, it would be idea for Catherine to start that.
Speaker 1 (20:34):
Hey, there you go. You should have seen Catherine's face.
Speaker 4 (20:38):
Wow.
Speaker 2 (20:42):
I can't give Katherine enough credit for what you've done
them for all of your love and support.
Speaker 1 (20:48):
Absolutely, and on that note, thank you so much, both
Tony and Catherine for your time today. This has been
a lovely conversation.
Speaker 2 (20:57):
Thank you, Thank you so much, really enjoyed and thanks
for having us.
Speaker 1 (21:01):
You're really good at what you do, Martin, Tony and
Catherine Thank you for sharing all of that with us. Tony.
Your story of coping with MG with Catherine by your
side really shows how embracing change can foster hope and unity.
Thanks for tuning in to another episode of Untold Stories.
(21:23):
We'll be back in two weeks for a very special
Season three finale. Don't forget to rate and review us
wherever you get your podcasts Untold Stories Life with a
Severe Autoimmune Condition is produced by Ruby's Studio from iHeartMedia
in partnership with Argenix, and hosted by me Martin Hackett.
Our executive producer is Molly Soosha. Our EP of Post
(21:44):
Production is Matt Stillo, along with Supervising producer Sierra Kaiser
and post producer Sierra Spreen. This episode was written by
Diana Davis.
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