Panel:  Psychological Aspects – Patient Journeys

Family Panel: Ms. Elaine Ducharme, Mr. Ryan Thomason, Ms. Molly Watt, Ms. Chloe Joyner, Mr. Mike Walsh

MARK DUNNING:  So our next session is our — probably the most popular thing we do at these conferences.  It is our Family Panel.  So I would like to ask Molly and Chloe and Mike and Ryan to come down.  And I’m going to check with Elaine and see how she would like to play this.  So if you guys want to come on down.  And I know that David Alexander wanted to say a word about a project that his daughter is doing.  So while I figure out what is going on with Elaine I’ll have you say your two minutes.

>>:  Hi.  My name is David Alexander, and I want to thank Mark and everybody else for giving me this two minutes.  Uhm, I’ve spoken to many of you about what I’m about to talk about, and I’ve been given two minutes, so I’m going to go fast.  Put on your seat belts and we’ll do that.

Uhm, I have a daughter, 35 years old named Rebecca Alexander who, uhm, has Ushers 3, that is associated with Azeshanic Jews.  And Rebecca is a psychotherapist living in New York City with a very thriving practice.  She also has been doing, for many years, ah, teaching spinning classes, and she also, crazy as it may be, ah, does these civilian military combines where you are crawling under barbed wire, and crawling over fences, and all I will say about that is exercise is key, Usher Syndrome or not.

Rebecca has written a book titled:  “Not Fade Away” which will be released on September 10th of this year.  Uhm, it is about to get national attention.  I, uhm, cannot tell you what it is because it is not public yet, but you’ll be able to, ah, read about that.

She will also be on the Today Show on September 15th, I believe it is, and some of you may know, but a number of years ago Meredith Viera and along with Rebecca’s brother, her older brother Peter, did a piece on the Today Show.  And Peter recently did a piece on a young woman, she is actually a young girl still, uhm, in Manchester, Michigan, which is near Ann Arbor about Usher Syndrome, so he is doing his damnedest to bring the awareness of Usher Syndrome and RP and these other diseases.

The purpose for her writing the book is several fold.  One is she wanted to do it for a long time.  She wants to do it to help people who are similarly situated to herself.  Or have other, ah, RP diseases, or frankly any other type of disability.  Ah, as importantly she is doing it to raise the visibility of retinal degenerative diseases, including, especially, Usher Syndrome, throughout not only the United States, but throughout the world.

Uhm, the book is very personal.  It is, ah, very positive.  It is not pie in the sky or naive.  And it is not religious in any sense.  Uhm, traditional religions, I guess, other than ones just having faith.  And it is very powerful and very positive.

And so I, uhm, ah, I recommend it when it comes out.  Not just because I’m entirely biased.

( Laughter )

Ah, which is obvious.  But, ah, but other people who have read it, and who have commented on it, including Meredith Viera, and Rebecca will be on her show when it starts.  And the woman who wrote Brain on Fire.  And others have said that.  Those are not just my words.

So I’ve been handing out these cards, and if you don’t have one and you would like one, they are out by the table.  And I’m done.

( APPLAUSE )

MARK DUNNING:  We always have time for a proud Usher dad up here.

Okay.  So, uhm, so, ah, as usual, we are running behind.  So we are just going to keep going.  Uhm, because this usually livens everybody up as soon as we have the family panel here.

So we have, ah, tried to get a broad mix of, ah, of families.  For those of you who don’t know about the family panel, we do this every year.  It is our most popular thing that we do.  We ask, uhm — try to get a cross-section of the Usher Syndrome community.  And have them come and basically tell their stories and answer a few questions.  And then we open it up to the audience for questions, as well.

So I’m going to just ask that if each person could introduce themselves, I’ll let you guys introduce yourselves, and then I’ll ask you a few questions.  So if you can just tell us your name, where you are from, and your relationship to Usher Syndrome that would be great.

And Elaine, I guess we’ll start with you.

ELAINE DUCHARME:  Hello, everyone.  My name is Elaine Ducharme.  I am from Waltham, Massachusetts.  I grew up in Connecticut, though.  I became deafblind — I was deafblind at birth.  I have Usher Syndrome type 1.  I don’t know if I’m 1A, B, or C.  I know I’m type 1.  I had Coates disease and I lost my vision at some point.  And I’ve been fully deafblind — born deaf, became fully blind by 31.

RYAN THOMASON:  Hi.  My name is Ryan Thomason, I am 32 years old.  I have Usher Syndrome type 2.

MARK DUNNING:  Sorry.

RYAN THOMASON:  There we go.  Hello.  Not used to hearing my voice.

I have Usher Syndrome type 2.  I am from Seattle, Washington.  I’m currently living in Utah.  I have, ah, a wife and two kids.  I am an ordering product manager for a corporation, and on the side I run a website called Watch My Read.  And when I’m not doing that I’m training and competing in races.

MOLLY WATT:  Hello.  I’m Molly and I’m from England and near London.  I have Usher Syndrome type 2A.  I’m severely deaf.  And at the age of twelve I was diagnosed with retinitis pigmentosa.  You guys obviously know how it works.  And I was also diagnosed with macular edema, and that affects everything else.  So that has been really my downfall.  And as a result was having a really strong support system at home, we created, uhm, a charity, the Molly Watt Trust where we try to raise awareness for Usher Syndrome because we need it.  There is so much ignorance out there, and it, you know, it stops people getting jobs, and, you know, and you’ve all probably experienced it.  I’ve experienced quite a lot of it.

I’m 19.  I will be 20 next month.  So counting the days.

And, yeah, that’s it, really.  That is the basics.

CHLOE JOYNER: .  Hi.  I’m Chloe Joyner.  I’m the mum of two children.  One is seven, a boy, with no vision or hearing issues.  And my daughter is four and she was diagnosed with she was 18 months with type 1b.  And I’m from England if I didn’t say that.

MARK DUNNING:  We kind of guessed that.

MIKE WALSH:  My name is Mike Walsh.  My accent is not as cool.  I’m from Wisconsin so I’ll try.

Let’s see.  I have Usher Syndrome type 2C.  Uhm, I was diagnosed when I was 19.  After my brother was falling — falling around and he fell into a pond and so because of him I was diagnosed at 19.  I started getting symptoms about five years ago, and recently, uhm, I started going around the world raising awareness with a campaign called Fight For Sight.  So that is what brings me here.  And thank you.

MARK DUNNING:  Excellent.

So I’m going to get started with this question.  But I’d like to ask you:  When did you first find out you had Usher Syndrome?

What was your first reaction to it?

Would you have liked to have gotten the diagnosis sooner?

Again, I’ll start with Elaine.

ELAINE DUCHARME:  So I was born deaf and I grew up using sign language.  Obviously I’m older, you can tell.  I’m 57.  So 57 means the 60’s when I was growing up.  Uhm, I didn’t know.  People didn’t know that I had Usher Syndrome until I was about 18, I believe.  My left eye started to lose sight and I started to struggle with my right eye.  And so I knew I had problems, and my parents said eye problems, don’t worry about it, but your balance, I have pretty bad balance.  So the balance became a problem.  I didn’t have great night vision.  So I went to — I did go to a Deaf School growing up, and of course I got made fun of because kids make fun of people for stumbling and things like that.  I did start to take, uhm, family workshops, that was the only thing that was really, ah, around and available for me.  But I didn’t understand, uhm, what it meant.  And my parents really said “oh, don’t worry about it.  Don’t talk about it.”  And so eventually I went to Gallaudet University and that is where, really, I started to learn about Usher Syndrome.

My brother is deafblind, as well.  And my brother and I my parents went to Gallaudet University and they offered a family workshop, and that is really where they learned to understand this is, what Usher Syndrome is.  I was 24 when I really understood.  And I was able to talk with somebody, a man who had Usher Syndrome, himself, and started to tell me about it.  You are going to have to be prepared for tactile sign language.  You are going to need to be prepared for a cane.  And with Braille.  And I was very resistant in the beginning.  I did not want to be deafblind.  I did not want to be — I didn’t want to enter that world.  And, uhm, you know, I started saying “well, I’ll wait.  I’ll probably be blind when I’m 80.  So I’m not going to be ready for that.  I’m sure.  I’m 24 now.”  So I was obviously in denial.  So I started to really, you know, look within myself, and realize, okay, you know, I’m in denial, I need to learn the skills that these people who have Usher Syndrome are telling me, and, uhm, and by 27, uhm, I had really started to not being able to rely on my sight at all.  And I’m happy that I was able to have that kind of self-learning at 24 and able to really start to say, “okay, I need to be prepared.”  I did — I went to the Helen Keller Center, and I learned about myself.  I learned about my identity.  And I was able to — once I accepted who I was, I was really able to, you know, I was really able to take off at that point.  But I know that I was very late in understanding that.  And in accepting that.  So once I finally did, though, in my 20’s, I just took off and life’s been great.

MARK DUNNING:  Can I just follow-up really quickly.  Would you have liked to have known the diagnosis sooner?

ELAINE DUCHARME:  (Shaking head no.)  Hmm, I — boy, I honestly don’t know.  I really don’t have a good answer for you.  I don’t know because I can’t look back.  I mean that idea that I was, like, “oh, I have until 80 until I’m blind.”  That denial was — that was hard.  So maybe knowing sooner would have made me be able to accept sooner.  Once I accepted, that is really when I was able to learn the skills I needed.  So I don’t know if that would have impacted when the acceptance happened.

MARK DUNNING:  Great.  Thank you.

Ryan?

RYAN THOMASON:  I was diagnosed when I was 27 years old.  And we were sitting in a room and it got all dark, and they had just done an eye test and my wife was sitting behind me and the gentleman just said “you have Usher Syndrome type 2.  There is not really much we can do about it.  Find yourself a doctor.”  And just kind of left it at that.  I had hearing aids since I was two years old.  And we just never really connected the dots up to that point.  I did play sports in high school, and I was always very athletic, and doing sports in college, and everything like that.  But apparently a couple car accidents didn’t come into my parents head that maybe I shouldn’t be driving.

( Laughter )

But only one of them was really bad.

( Laughter )

But, yeah, that is how I was diagnosed.

MARK DUNNING:  So would you have liked to have known sooner, maybe, like, before that car accident?

RYAN THOMASON:  Uhm, it is a difficult question to answer because I don’t know if I were to make changes in my life.  I’m very happy with what I have now.  With my wife, my kids, my job, and who I am.  So I don’t know if I had done things differently if things would have changed.  So I’m very happy with, you know — even though it has been difficult, you know, it is my life, and it is what I have.

ELAINE DUCHARME:  Sorry.  I just want to add since you said that.  I have to so strongly agree with you.  I think, you know, as I’m thinking about the question, I think maybe it was best how it happened, you know, because I accepted when I accepted.  And maybe if I had known earlier I would have just worried for those 18 years before, you know.  So I think that I agree.  I’m happy with where I am.  So maybe it was meant to be when I found out.

MARK DUNNING:  Great.  Thank you.  Molly?

MOLLY WATT:  18 months old I was registered severely deaf and I was given hearing aids.  I’ve relied on them — I still rely on them, obviously.  But I was just deaf, if you like.  Until I was near 6.  You guys, you are educational system really confuses me.  So basically eleven years old, uhm, I started noticing I couldn’t read the board, I was very clumsy, and I got lots of headaches.  So soon after that I got registered with Usher Syndrome type two.  And they said to me I would lose a lot of my vision until I was in my late 20’s or early 30’s.  But they were kind of wrong about that because within two years I was registered — well, you call it legally blind.  Uhm, so I have virtually no vision in my left and I see through a tunnel in my right eye.  Uhm, so, yeah.

The question regarding when I was diagnosed.  I can’t really imagine it being any different.  Uhm, it has been a — it has been a tough journey, and all I can say is that I am so thankful I have my family and the support system that we have found on Facebook.  There is no way I would have coped at the age I was.

CHLOE JOYNER:  And for us, it is a story shared with many young people here.  My daughter’s deafness was picked up in the newborn screening program in England.  She was two weeks old when we were told she was profoundly deaf.  She had her first hearing aids at six weeks old.  And so the story moves on a bit, uhm, and she was late to sit, and late to walk, and the geneticist that we were seeing, just to explore the causes of the deafness mentioned Usher’s at approximately 9 months, when she was 9 months, and referred us for an ERG.  In England they have them without sedation, so they can happen on young children.  We were there for — and I guess from that point, as a parent, your heart plummets, as you perhaps remember.  And we kind of would — we didn’t receive an official diagnosis until she was 18 months through the ERG.  And, uhm, and I felt, at that time, that we had only gotten vertical after the deafness diagnosis.  So it was a big blow.  Uhm, and early stages of coming — finding my peace with it, that is the way I phrase it, rather than “coming to terms” because it is a continual process.  Finding my peace with it, the early stages were very similar to the deafness diagnosis, and we had to go through the same stages, but I think the nature of diagnosis is very different.  Uhm, you know, with the deafness we could be working on it.  We could be helping her.  Supporting her communication through various sign, exploring possible, uhm, cochlear implants, which she now has.  But you receive a diagnosis of Usher Syndrome, as we all know, and there is no immediate prospect of being able to do anything about it.  And I’ve personally found that very hard as a parent, uhm, not having any control over something so precious.  It is hard.  So, uhm, I guess the question that I would perhaps answer is whether I would have liked to have found out later —

( Laughter )

Uhm, not earlier.

( Laughter )

And I think I probably would say, actually, I don’t know — I actually would have liked to have found out later.  I understand that there are — and I’m open to other ideas.  I’ve heard different cases for this over the last three days, so I’m very much open to discussing it.  But, uhm, I think absolutely to be able to consider any practical steps you can take, that’s fantastic, and useful, and important.  But in terms of being delivered this news, which is, you know, so difficult, and yet we are powerless to change it, the best description is, uhm, that dream you have when you are walking and you can’t get anywhere.  You are just heading towards something that you are powerless to change, and yet you are very frightened of it.  And that is how I feel as a parent.  I mean every step that we can take to empower ourselves we will take.  But I still think it is very hard to live with a diagnosis like that from such a young age when you — when you are not anywhere near even the treatment stage or anything that you can do.

MIKE WALSH:  Uhm, yeah.  Like I said before, I was diagnosed at nineteen.  And my reaction at nineteen, I had no symptoms, uhm, everything was peaches and cream, you know.  I could drive.  I could play sports.  Peripheral vision was excellent.  I had — and going further back I was diagnosed with having — needing hearing aids around three.  But when it comes to Usher Syndrome, life was good.  And then all of a sudden my parents are dragging me down from Madison, Wisconsin to see a specialist, Dr. Fishman.  And all of these crazy eye tests, you know, painful.  We’ve all been through them.  And, ah, you know, all of a sudden they are like “you have Usher Syndrome. ” And as I said before, this all happened because my brother fell into a pond.  Yeah.

( Laughter )

And, ah, so he has hearing aids, as well.  So we both had hearing aids, and we are brothers.  He is five years younger.  And, uhm, and so they have connected the dots and they suspected him, so therefore me, as well.  And, ah, so all I can think of, if not for his diagnosis — for his early diagnosis, I can only imagine had I been driving along at night in the past few years, I stopped driving a couple years ago, but had I been driving along and not knowing what was happening, just assuming I was having a bad eye day, something serious could have happened.  But to answer the question if I wish I had known about it earlier, uhm, I would actually say I wish that, you know, in a perfect world I would like to know about it later because at nineteen I had no symptoms, and so basically between 19 and the time that I gave up my driving at 35, uhm, I’m 37 now, so about two years ago.  For sixteen years my parents were like “how’s your vision?  How’s your vision?  How’s your vision?  How’s your driving?  How’s your driving?  How’s your driving?  How’s your driving?”

( Laughter )

They really asked me no other question in life.

“How’s your eyesight?  How’s your driving at night?”

So, ah, so —

( Laughter )

— thanks to my brother, I knew.

There is my dad over there if you want to bug him.

( Laughter )

He is taking a picture and doesn’t know how to use that phone.

( Laughter )

He is a great support though.  Thanks.

MARK DUNNING:  Okay.  Excellent.

( APPLAUSE )

So I think you guys have sort of touched on this, and again I’ll start with Elaine and we’ll work our way down.  But how has Usher Syndrome impacted your daily life?

ELAINE DUCHARME:  You mean my life now.  So let me think.  Today I don’t even think about the word or, you know, Usher Syndrome.  I mean I’m 50 — I’m almost 58.  I lost my sight 30 years ago.  I’ve been deaf all my life.  So I really think of myself as human.  I mean I’m just Elaine.  I think that is because it is so long.  My daily life, I don’t think about it anymore.  I forget.  I’m just very used to it.  It has been decades that I’ve been a deafblind person.  Yes, I have Usher Syndrome.  Yes, my name is Elaine.  But I don’t really think about it day-to-day anymore.  I am so used to, ah, to — so used to that.  I’m so used to who I am.

Uhm, and, uhm, you know, obviously everyone needs the support that they need.  And they need their family and their friends.  My wife and my family and friends are incredibly supportive and helpful.  But at this point my life is great.

MARK DUNNING:  Okay.  Excellent.  Thank you.

Ryan?

RYAN THOMASON:  Uhm, my daily life starts at 6:15 in the morning with my six-year-old poking me.

( Laughter )

Telling me I need to get up and be dad.

So, uhm, and then I spend the morning with my kids, and my wife takes me to work.  And she is pretty much the reason why I can get around and do stuff.  My wife is Wonder Woman to me.  She does a lot for our family.  And I just work and I get home and I’m dad again.  And kids go to bed and we have some adult time and then it starts all over.  Uhm, you know, little things do happen here and there, but, you know, at this point I’ve just kind of learned to brush it off and to keep going on.  So my — so my family is a major distraction for me.

( Laughter )

When it comes to Usher Syndrome and all of that kind of stuff.

MOLLY WATT:  Sorry.  Can you repeat what your question was?

MARK DUNNING:  So how has Usher Syndrome impacted your daily life?

MOLLY WATT:  Uhm, well, I think because my sight, ah, progressed much quicker than I thought it would, uhm, my life’s changed quite a bit in the last few years.  So what my daily passions were a year or more before, has changed.  I have a guide dog and she couldn’t come because she had a bad gut.  So I thought it would be — putting her on an airplane for seven hours, people wouldn’t appreciate a dog with a bad gut.  So she is home.  So she is my other half, really.  She is, uhm, I rely on her 100% now in the dark, during the day.  Whereas before it was just in the dark.  Uhm, in crowded places, I get really claustrophobic.  I’ve just finished college where I received really, really good, ah, support that involved a note-taker.  So, uhm, so I received all my notes through e-mail and I did a lot of my work on my Apple Macbook where the accessibility is brilliant.  So because I was lucky enough to have the technology and support system at home, my daily routine at the moment is okay.  I’m still able to live things — do things like everyone else at the moment.  So I think that is how it should be, really.  So at the moment it is just, you know, you know what it is like, you just plug along until something else changes and you have to find new strategies, you have to find new ways around things.  So, yeah, that would be my answer.

CHLOE JOYNER:  Uhm, my daughter’s vision hasn’t yet deteriorated, apart from night vision.  So our daily lives are not really affected by the reality of living with Usher.  But they are affected by the prospects of living with Usher.  Uhm, we have to spend our energy, apart from having fun and being a family and raising two young children, the energy that is left over from that, uhm, we split between trying to prepare ourselves as a family, and prepare our child, and her sibling for life with Usher, and prepare ourselves as parents.  And trying to also do the things that we can do to change the reality that may face her later on.  But we try and focus on the challenges now.  The one, uhm, thing I was saying, my daily life that I’m affected by Usher is a small period, uhm, just before sleep, each day, uhm, I like to go to bed quite early and enjoy that when you get to read a book.  Instead, since my daughter has been diagnosed, and this might sound really negative and I hope it doesn’t, but perhaps other parents will relate to it.  I find that period when you are not doing the usual things to your brain to stop it from thinking negative thoughts, when you are about to drift off to sleep, and you start inserting difficult thoughts you need to tackle, that is a challenging time for me.  And I have found since my daughter is diagnosed, I wait until I’m completely exhausted to go to bed because I really dislike that period when I start to worry about the future, basically, and I don’t have enough, uhm, enough to help me get through that.  So that’s one thing that my daily life is affected by Usher.  Uhm, Usher Syndrome.  And I think that it is a sign that, you know, it is a continual process to be able to come to learn to live with the syndrome and the prospect of it.

( APPLAUSE )

MIKE WALSH:  So daily life.  Uhm, I mean I’m often trying to figure out different ways to say “what?”

( Laughter )

“Pardon?  Excuse me?  Didn’t hear you.”  By the third time you just nod.

( Laughter )

Anyway, uhm, so when it comes to vision, you know, it is — in the last year or so it has been very interesting.  I wear hats now.  Seriously.  Stop.

( Laughter )

Uhm, so that’s been new, uhm, daily life.  So it has been such a, ah, a big part of my family in terms of raising awareness and we help raise money.  My brother is a stand-up comedian, most of his act is about being blind.  So there is a lot of talking about it.  More so recently since I started my campaign in January.  And so I’ve — I went from being extremely passive about my condition.  And even when I stopped being able to drive at night, and then stopped being able to drive altogether, I was like “all right, I’ll just get rides everywhere and be forced to talk to my parents more.”

( Laughter )

And I even fooled with a plane.  My friend, all right, go ahead.  “Is this legal?”  So I can still do a lot of stuff.  And it has been an adventure.  My daily life right now is learning as much as I can and being the opposite of passive about it.  Like Molly said, it is about strategy.  Tomorrow my vision will be a tad different, but more so like a couple years from now.  I love technology, and everything that is happening, and I’m really excited about all the stuff.  We all saw the stuff about the finger reader that the guy was developing here at MIT.  That is cool stuff.  And I hope to check that out soon.  Yeah.  Life’s good.

MARK DUNNING:  So let’s start with Elaine for the — for this next question.  And you guys have all sort of alluded to this.  And I think we already know a lot of the answer.  But, uhm, what is your most significant support mechanism?

ELAINE DUCHARME:  First, of course, is my family.  As for most of you, I’m sure, my family has been a great support system for me.  My siblings support me so much.  The positive people around me, uhm, who share their energy with me, and share their support with me, and allow me to support them.  I’m allowed to work with people who have Usher Syndrome and offer them support when they are going through grief and empower them through their journey has been incredibly helpful.  Teamwork is really key and has been key for me.  I want to make sure that I see happy people every day and work with happy people every day.  Uhm, I love hanging out with people, people call me the Queen Social Butterfly.  I’m always with people.  You will see me always chatting with someone.  And for me that is a really big support, too.

RYAN THOMASON:  My wife is my biggest support system.  We have been married for 6 years before I was diagnosed.  We got married at 21.  So, uhm, so diagnosed at 27.  And my son was already one years old at the time.  So, uhm, so she has definitely been my biggest support system.  You know, through the highs and the lows of everything.  Uhm, and my kids, obviously, uhm, my son is — he is very, uhm, aware of what is going on.  So he, you know, he helps, you know, a lot for a six-year-old, even though he probably shouldn’t.  But, uhm, and then, you know, just my family, you know, my aunt started a foundation to raise money for Usher Syndrome, and the rest of my family has been really active in trying to, you know, help support that every year.  And, you know, and raise money.  So, uhm, so definitely been having a great support system so far.

MOLLY WATT:  Uhm, yeah.  I have to agree.  Definitely before anything, family.  My family are all very positive, outgoing people.  I always say in all of my talks just how grateful I am to have them.  My grand dad always said, you know, life you are dealt — you are dealt a hand of cards and it is just how you play them.  Uhm, so that is something that has always stuck with me.  And that just goes to show the kind of family I’m from.  And also it would be the whole networking family.  Uhm, I’m seriously overwhelmed by the amount of networking that we have done, and I mean where would we be without social media?  It is just amazing to meet people from other countries that we have met through Facebook.  And I mean the messages that I get online on a daily basis, they just mean so much to me.  Uhm, so, yeah, definitely it has got to be family, friends, and of course — I mean he will kill me if I don’t call him out on this, but my boyfriend, as well.  He is good, too.

( Laughter )

He always gets mad when I don’t mention him in my talks.  Yeah.  So definitely my family.  My friends.  And of course my boyfriend.  The best support system I could ever have.  Yeah.

( Laughter )

CHLOE JOYNER:  So thinking of support, I would say my partner.  Although we have actually dealt with it in different ways, we have still provided support to each other.  And continue to do so.  But also my friends and friends that have become friends since the diagnosis have been really important.  And they have sometimes come from unexpected places.  And, uhm, and unexpected people, but they have just shown themselves to be really special people and I am now lucky to recognize how important that is from within this community and the strength that I take from those people and from daily life, as well.  Uhm, so I would say that my friends and my partner.

MIKE WALSH:  Yeah.  I’m going to go with family, too, just because everyone else said that.

( Laughter )

Yeah.  My family, my dad who is about ten feet from me, still trying to take pictures.

( Laughter )

Got it?

( Laughter )

I mean — did you get it?

( Laughter )

All right.

Yes.  So he is a great guy.  He is on the board of the Foundation Fighting Blindness.  So the minute we were diagnosed he was on the phone with whoever and, you know, he has done a lot of great work.

And then of course my brother, I mentioned him before, we sit around and have a lot of fun about it.  As I said, he is a stand-up comedian, so we have — we write jokes all the time about being blind.

( Laughter )

I’ll tell you all about my blind dates.

( Laughter )

I am single.

( Laughter )

Molly mentioned, ah, about social media, and that’s amazing.  Uhm, I would like to, ah, I want to say Facebook groups are pretty amazing.  I have found, just in the last couple of months, I’ve been playing around with them.  Facebook groups, if you type in Usher Syndrome, there is a really big Usher Syndrome group.  But even more so there is a big retinitis pigmentosa group, and you can ask a question on there, and you will get 20 responses in, like, a day.  Just people with their experiences.  Uhm, it is really, really wonderful.  So I recommend you check them out.  And you can be on them anonymously.  There are closed groups.  Public groups.  Be careful with that, however you want to approach it.

And also the other support, of course, since I started my campaign on Facebook, Fight For Sight page, I — in just a couple days I announced my condition to all my family and friends.  A lot of my friends didn’t know about it because I’ve always been passive about it.  So I just exposed myself.  And within a few days I had 15,000 views on one post and, uhm, and, you know, 600 likes by the weekend.  Uhm, and so it was really amazing.  People were asking me questions.  And part of my journey was to figure out “how do I answer those questions?  How do I explain it better?”  They say “what was that about?  I didn’t know that about you.”  Because it is a hidden thing.  So you just never know about people and the experiences they have.  That has been an amazing support, all the online support, people, friends, and the people I haven’t met.  And I’ve met people here who are following me.  That has been interesting.  All right.  Thank you.

MARK DUNNING:  So, uhm, so you guys have all been very positive about everything.  I’m going to, uhm, to — I don’t want to bum anybody out, but I do want to ask a question.  Can you describe for us your most difficult experience you’ve had because of Usher Syndrome?

ELAINE DUCHARME:  Can I answer last on this one?

( Laughter )

Can I take a pass and be the last person to answer?  I need a little bit of time to think about that.

MARK DUNNING:  Sure.

Ryan, are you ready to go?

( Laughter )

RYAN THOMASON:  I’ll take this.  I’m not as funny as Mike.

( Laughter )

Probably the hardest stuff was from before I was diagnosed.  As I mentioned, I got in my first car accident when I was 16.  I didn’t see that the stoplight had turned red and didn’t notice it until the last second, hit my brakes and hit a police car going through the intersection.

( Laughter )

And then my second accident I accidentally pulled out in front of a car and got T-boned and a couple — and went 40 feet into a ditch.

So, uhm, you know, just walking on college campus at night and walking into a tree and everyone asking how much I had to drink.  And I was like oh, a lot.  But I didn’t have any.

( Laughter )

Just, ah, but those — but the more recent stuff has been the more emotional for me, uhm, we just — we took a family vacation with some really good friends of ours to Las Vegas, and as you know, Las Vegas on the strip is very busy.  And walking with my six-year-old and my wife trying to, you know, keep my four-year-old and all of us from running into stuff, and my six-year-old devised this system to, you know, he would hold my hand, squeeze it two times and he told me that meant I needed to stop.  And then if I squeeze your hand three times that means we can go.  And if I pull your hand a little bit this way we are going left.  And if I push your hand that way we are going right.  I think it was more of a devised mechanism on how to control dad more.

( Laughter )

But he did that on his own because he knew I was having a hard time with all of the people.  And that really impacted me emotionally, and I got him an extra nice present from a store for doing all that on his own.  So that is really been the hardest thing, just emotionally, ah, with my kids and stuff like that.

MOLLY WATT:  Uhm, well, I don’t really necessity how to put this into simple terms, really.  When I think — I think the hardest thing for me was because I grew up as, uhm, many of you know as a deaf child, very visual.  So I relied on lip-reading.  And I did get by in mainstream pretty well.  And then it wasn’t until my sight got pretty bad where I thought that I would need better support, maybe smaller classrooms, and I thought this would be better, and in a School for the Deaf.  There is actually a boarding school in England.  And I went there and ironically I — at this point I was in denial about going blind.  So I actually thought “oh, yeah, I will be just like everyone else.”  I wasn’t.  Uhm, I kind of — I got bullied because I wasn’t like them.  Uhm, I couldn’t sign.  I couldn’t understand what they were saying because of the lack of sight I had.  Uhm, and it was kind of that realization that actually I’m not like them, and I needed my sight, and it was trying to convert from being such a visual person to using my residual hearing.  And that was the biggest, like, hardest transition I’ve ever had to make.  Uhm, yeah, I think that is definitely hard.  And, uhm, and following up the whole experience at boarding school I was bullied pretty bad.  And when I left I had pretty bad anxiety and depression.  I had to go to counseling sessions.  I refused to go to out of the house.  I didn’t want to be seen.  I didn’t want to be seen out or with my guide dog.  And those three years of my life were really difficult.  And I still go to counseling, but a lot of those issues I’ve overcome since I’m not in denial, I’ve accepted what is happening to me now.  So things are getting better.

CHLOE JOYNER:  I think, for me, the thing I find hardest is just sometimes it will strike you.  You think you are doing really well and then suddenly you see something or you just random on a Tuesday afternoon and a thought comes into your head.  You can just get that frozen sense of dread, uhm, as a parent.  But yeah, I guess having something outside of our control for our daughter is something I find very difficult to accept and deal with.

MIKE WALSH:  Uhm, yeah.  Difficult points.  I guess growing up when you have hearing aids and you are in a high school where no one else has hearing aids, uhm, it is very, ah, stagnant socially.  You wonder why you don’t have a girlfriend and stuff like that.  Uhm, but then you grow up, I’m growing up, do we have a grown up?  When you become, or nowadays, ah, when I meet people, especially with my campaign, I, ah, people ahead of time know about my situation.  And when I meet them they are really excited to meet me.  And, ah, and so forth.  And so it is — you become more, like, this is part of who you are, and it is interesting.  Everybody’s unique, and in different ways.  So you just kind of own it.  “Yeah, I have to wear hats all the time.”  I get to wear cool hats and cool shades.  You just kind of own your life.  And as far as other difficulties.  And Ryan, Ryan would be happy to know I’ve crashed a few cars even with no symptoms.

( Laughter )

So, you know… difficulty — well, like I said earlier, I’m always trying to hear better.  For me the hearing is actually harder than the seeing.  Seeing, I don’t know, I can get through it.  But you always miss things here and there, you can’t — you need to have people repeat them.  But one instance I can remember, uhm, was, ah, just slicing my head open the night before a final and showing up with stitches in my head.  My face.  It was right there.  And the teacher gave me a weird look.  But just little things like that, bumps and bruises there, but you heal, it is amazing.

MARK DUNNING:  Elaine, do you want to answer this question?

ELAINE DUCHARME:  I am ready.  Thank you for giving me time to think back.  I’ve got a whole life to look back on.  And I have similar bullying in schools.  Similar stories about “are you drunk?”  And I’m really just bad balance.  I have people who would, you know, make fun of the fact that I bumped into tables, and all of that.  All growing up I had that.  Uhm, it was hard on my family.  I would — I would bump into them a lot.  Or I wouldn’t see something that was on the floor.  Like I remember, you know, my mom had just cleaned the kitchen floor and I bumped into the cat’s bowl and it knocked over everything and she had just cleaned it.  That kind of thing.  That you are not realizing why you are doing this.  Or on the basketball team in high school, I passed to the wrong person because I couldn’t see her and I got called out for that.  I remember I went to Rochester institute for technology for a nine-week session, and I got an infection in my eye, it wasn’t related, but it meant I couldn’t see for a period of time.  And I remember that, you know, I tried to take some sort of self-defense class or something, and I couldn’t do it.  I couldn’t do anything that I was used to doing.  And I went outside, and I realized that I couldn’t see at all.  And I bumped into someone who, you know, promptly yelled at me like “what are you doing?”  And to me it was completely dark.  I couldn’t see anything.  I didn’t know where my dorm was.  I just, ah, remember, you know, hoping, like, “I think it is this way.”  And I just decided that I — I had to fly home.  I quit college at that time because my vision just went for a very brief period of time, very quickly.  And, you know, it was — that was hard.  It is always hard at night, you know, socializing with friends when it is dark.  It is really hard.  Uhm, and I’m not able to, you know, enjoy.  So in college I would, uhm, I would just drink more so that —

( Laughter )

— because I was bored and I couldn’t see what anyone was saying.  So that wasn’t a great coping mechanism, but I did that for a while.

Once I was fully blind, that was a big challenge.  Like I said before, I didn’t want to learn Braille.  I was in denial.  I mean I accepted it once I was there, but I hated it.  I still kind of hate Braille, you know, honestly.  You know, I accepted it, and I have learned it, and I have moved along.  I know who I am.  But those were all challenging years.  I would say, uhm, you know, through my teens and my twenties were the most challenging, uhm, times.  And during my career I just have learned to work my way around many of those challenges, but I would say the early years were the hardest.

MARK DUNNING:  Okay.  Thank you very much.  And I know those are difficult things to talk about, which is why, uhm, I want to ask you what has been your happiest experience related to Usher Syndrome?  Elaine, do you want to go first or start at the other end of the table?

ELAINE DUCHARME:  I’m good.  I’ll take this one.

( Laughter )

Happiness is good.  All right.  Let me see.

So I would say I lost my vision mostly at 27-28, as I told you.  So I was — it was a very hard time in my life.  A sad time in my late 20’s.  Uhm, so, uhm, I hadn’t really experienced social life with, uhm, with Usher Syndrome or deafblind people.  Mostly hung out with Deaf people.  So I went and joined, there was an association for, uhm, deafblind people by Helen Keller.  I went, uhm, in ’84, I believe, it was in Seattle, Washington.  And that was the first time where I was in a large group of people who have Usher Syndrome.  Usher Syndrome one, two.  That moment, for me, was — it was lovely.  It was really meaningful moment.  I remember that, uhm, and I think that is the moment that I really started growing, as a person with Usher Syndrome.  I really feel like since that moment I was able to find happiness.  I was able to just say, “okay.”  I have a lovely wife.  I have lovely friends.  I love, uhm, I love my life.  And I was able to, uhm, to — I was able to do that.  I actually love being a deafblind person.  It is great.

MARK DUNNING:  Thank you.

Ryan, do you have a happy moment?

RYAN THOMASON:  I’m always happy.

( Laughter )

Because I’ve got two kids that don’t make me — they don’t give me a choice.  I have to be happy.  They are always doing fun stuff.  And keeping me smiling and entertained.  And, uhm, I think one of my more recent experiences on Father’s Day, we went to a place called Anna Island, it is a big ranch, and they have some fun stuff.  And I always — one of my first things when I was diagnosed was I — I’ve always been into sports growing up.  And something that always worried me was would I be able to play, you know, football with my son?  Would I be able to play catch with my kids?  And on Father’s Day we had mitts, and gloves, and someone through a baseball at me and I caught it just fine.  And I felt really good about that.  And we played catch for a very long time.  Just as a family.  We were just throwing the ball around.  And, uhm, and, you know, I didn’t really tell anybody about that.  But it is — but that was a really happy moment for me.  Just being able to do some of the stuff that I never thought I was going to be able to be with my children.  So my kids are always trying to find ways to keep me happy.

MOLLY WATT:  Uhm, I think, uhm, actually just after the darkest part of my life, uhm, I was forced into a gap here.  So I wasn’t in education for a while.  And like I said before, I didn’t do a lot.  Uhm, and we started searching for other colleges for me to go and complete, uhm, my two-year further education, ah, course.  And a lot of the local colleges refused me because they had never had anyone like “me,” and I don’t know what that means.  But as soon as they heard the word “deafblind.”  It is like “oh, no, we haven’t had one of those.”  But we eventually found this college, which is about half-an-hour drive from where I live.  I wouldn’t go and see it because I was frightened at that point that I was going to get rejected again.  I just thought no one was going to want me and I wasn’t going to go very far in life.  And my mum went and they said that the — mum said — she spoke to them.  And they were — they were very open to the idea.  One of the first things they said is “look, we have never had anyone with Usher Syndrome, but we really want to learn and work with you.”  And that was the best attitude I could have ever asked for.  I then went onto go to that college and I — and I restored my faith in the community again.  It was like “oh, there are actually some decent people out there now.”  And so it felt really good to actually be accepted for who I was, to be able to walk around the college, with my guide dog, not being bullied, and just generally feel comfortable in my own skin.  So I think, as I say, the last couple of years I’ve come such a long way.  And so I think that really does reflect, probably, one of the happiest moments of my life, really.  Just knowing that I could actually get far in life now that I’ve got these qualifications, going to university.  So, yeah.

CHLOE JOYNER:  Uhm, for me two things come to mind.  Swimming lessons are quite comical in our family.  Uhm, me desperately signing on the edge of the pool, uhm, and every week they create new, uhm, tricks for the kids to do, and there is me desperately trying to make up signs, and she is like “can I jump now?  Can I jump now?”  So that is always good for a laugh.

( Laughter )

And just thinking slightly more profoundly.  I think I feel very strongly that the process, uhm, this all the families in this room, and all the people who support people with Usher Syndrome go through and their adjustment to being all that person needs, or to be all that child needs is a thing of beauty.  And I really just see that in all of the different examples I can see around the room.  And I take so much strength from that.  Uhm, I really do.  In any, uhm, moment when I’m finding it challenging, and it gives me a lot of happiness and strength to see that beauty in action of people providing support to other people.

MIKE WALSH:  Speaking at Harvard.

( Laughter )

( APPLAUSE )

( Laughter )

I mean it is Harvard.

( Laughter )

Happiest moment.  I guess what has been fascinating, uhm, so I’ll — up until, ah, late January I have always kind of never really thought about Usher Syndrome, you know, something that my brother and I had.  But the last six months have been amazing with the campaign and all the people that reached out to me.  They want to learn more about it.  And it forced me to, like, learn more about it so I could teach them.  And, uhm, just all the people that I’ve met have made me very happy.  Uhm, and, you know, this is an excellent room of great people, and panelists.  Like Ryan and Molly.  I’ve seen them online the last couple months.  Here they are live, and we are talking, and I have made new friends.  So it is just — this is great.  It is the community, you know, and the more we work together and go forward and, you know, and let’s be happy.  What is the happy song?  All right.

( Laughter )

MARK DUNNING:  Great.  Thank you very much.

So I have one more question for you guys.  Uhm, so what are your plans for the future?  Elaine, do you want to go first?

ELAINE DUCHARME:  Future plans?  Hmm.  Let me see.  I would say my future looks like to continue to be a supporter and advocate for the deafblind community.  Uhm, I enjoy working with the deafblind community.  There is some people who, uhm, still have vision left and I really enjoy working with them and supporting them through the transition.  I feel like I have a lot to offer.  I feel like, uhm, my part and my mind are really open to them and that’s — and that’s really my calling.  It is the people I love to work with.

If and when I do retire, I’ll certainly continue to volunteer, to train people to make sure that people, ah, continue to have a positive attitude about their life with Usher Syndrome, that it is important that they know who they are, and what their identity is.  And not to let, uhm, ah, depression get them because I don’t know if you’ve heard, but Usher Syndrome doesn’t kill you.  So everything is good from there.

( Laughter )

( APPLAUSE )

RYAN THOMASON:  Uhm, I’m kind of at a bit of a crossroads at this point, you know, 32 years old and, uhm, my wife and I are talking about going back to school.  Either getting my MBA or, ah, re-training, ah, in a totally different profession.  And starting in a, ah, in a different career path than what I’m doing now.  Uhm, so, uhm, so, you know, I’m trying to figure out, you know, if we are going to go that way, or what we are going to do, and, uhm, and, you know, and just enjoying all of my time with my wife and my kids.  And that’s pretty much all I really have for my future.  I just want to be with my wife and kids and have fun because that is what we do every single day.

MOLLY WATT:  Awwww, a cutie.

( Laughter )

Future?  Uhm, yeah.  I, hopefully, if I pass, I find out my results in, uhm, in August.  Uhm, I will be starting university in September.  Uhm, to basically become a teacher.  Uhm, yeah, I want to teach around nine or ten-year-olds.  In England we call it primary school.  I want to teach that age group because they will be talking human and not like monkeys.

( Laughter )

And, ah, and I will have my own classroom, so I will have my own big fancy chair.

( Laughter )

And I will be able to teach the class, I reckon.  I don’t think I will be teaching that long, oddly enough.  I really do want to carry on doing my motivation will talking for my family’s charity that we created.  Uhm, I really, actually, wish that, hope, that one day I will just be traveling and talking because I would love to see the world, while I can, and talking to people, and meeting people with Usher Syndrome is such a privilege.  Uhm, so yeah.  So two kind of objectives, really.

( APPLAUSE )

CHLOE JOYNER:  For us, our plans, uhm, well really it is up to my daughter.  I have a lot of faith in her strength and spirit.  She is a very determined young girl.  So, uhm, so I’m just going to watch as a bystander, I guess.  But I’m going to also personally learn from the people in this room and try to make as many connections as I can to understand, uhm, as a bystander and someone in the wings supporting her, to give her all the chances she needs to become the woman she will be.

( APPLAUSE )

MIKE WALSH:  Barbecue.

( Laughter )

Future.  So the last six months, ah, I’ve been traveling all around the world.  Thirteen countries.  Twelve states.  Something like that.  Uhm, and I want to keep going.  And, ah, and keep meeting people.  And blogging about them.  And posting that.  And so I’m at the point where, ah, I’ve had some great support from Delta Airlines, and I’m — and I will be finding some more sponsors, and I will be using crowd funding.  We have all heard about Kickstarter.  And so, uhm, so that is the future.  Hopefully more traveling in the next six months, and, ah, you know, it has been great.  And I look forward to meeting you all.

( APPLAUSE )

MARK DUNNING:  Great.  Well, thank you very much, guys, for everything, uhm, up here.

Normally we try to do a Q&A right now.  But Mike mentioned — who on the panel is going to the barbecue?  Everybody going to the barbecue?  Yes?  All right.  Excellent.

So how about if we do our Q&A at the barbecue?  So that we can get to the barbecue, eventually.

RYAN THOMASON:  Can we do it before I get barbecue sauce all over myself?

( Laughter )

MARK DUNNING:  We’ll do it before you bump into the trees —

ELAINE DUCHARME:  I have the interpreters with me, so come on over and talk to me.

MARK DUNNING:  Yes.  Absolutely.

    Thank you, guys.  Thank you very much.  

*Conference Blogs:

Mark Dunning: “Notes from the International Symposium on Usher Syndrome”

Mark Dunning: “Progress! The State of Usher Syndrome Research After the International Symposium of Usher Syndrome”

Mike Walsh: “Speaking at Harvard.”

Molly Watt:  “Molly’s Thoughts on #USH2014″

In July, I had the honor and privilege of speaking on a panel at the Usher Syndrome Family Conference at the Harvard Medical School.

The conference was in conjunction with the International Usher Syndrome Symposium. As described by the Usher Syndrome Coalition Co-Founder and Chairman, Mark Dunning, it was “the largest gathering of the Usher syndrome community in history. Three days, four nights, nearly fifty speakers, dozens of interpreters, and more than three hundred attendees.”

Conference speakers and attendees came from at least 12 different countries. The first two days focused on scientific research and developments. It included reports and open mic discussions from and with many of the world’s leading scientists studying Usher syndrome. It was very technical. View Mark’s blog to learn more: “Progess! The State of Usher Syndrome Research After the International Symposium on Usher Syndrome”.

The panel I participated in was titled “Phychological Aspects: Patient Journeys”. I was joined by: Chloe Joyner (smiling in the picture) from England, who has a daughter with Usher syndrome, Elaine Ducharme, who is completely deafblind with Usher syndrome Type 1 and two people I first met through social media, Ryan Anderson from Utah who has Usher Syndrome Type 2 and is the PR Manager/Senior Editor at WatchPlayRead and Molly Watt from England, who is a leader in raising awareness for Usher syndrome.

Being on the panel was a nerve wracking experience. Nonetheless, I hope I helped to ease people dealing with Usher syndrome, that life can still be great and full of laughs! As Mr. Dunning states in his blog, I was funny. So I guess it went ok at least.

Here is the transcript of our panel along with a few moments that were filmed.

Thank you to the Usher Syndrome Coalition for inviting me and putting on the conference. It was an interesting and fun experience. I made new friends and there was a real sense of excitement bringing the Usher syndrome community together. My hope is for people dealing with Usher syndrome to learn about the Usher Syndrome Coalition, the conference, and the community we are building. I encourage individuals who have Usher syndrome and their families to sign up for the registry to help stay connected!