Great video. I was diagnosed with MD when I was 8 or 9. I'll be 38 this September. I remember reading the statistics and thinking I would be dead by 30. I think it has made me work harder at doing the things I wanted because I never know when the hammer will fall. Why don't I make a video? Because I am an American with a "southern" accent. The moment most folks hear the accent, they assume I know nothing. It sounds better this way. ;)
I saw your video, your very engaging & fun to listen to. I run an organization in the states which focused on FSHD, and generating funds for that research. With your discussion of your "winged scapula" I wondered if you have FSH Muscular Dystrophy.
For those who didn't look but are wondering, the "most people with MD don't live past 30" and "most people with MD are male" are connected. Pretty much the most common form of MD is Duchenne MD, which almost never affects females (due to the way the gene for it is transmitted, women can be carriers but are almost never affected) and it is also the most lethal. All the other forms of MD have much better prognoses.
I'm not sure how interested you are in science, but do you keep up with the potential treatments for MD, such as gene therapy (using a retrovirus to inject your muscle cells with the gene needed to allow them to produce the correct proteins)? Google Scholar is a fantastic source for new papers that have been published.
I am also curious as to whether you have hope that we will discover a working 'cure' for MD within the next 50 years. I'm fairly confident that we will, but what do you think?
@ScientificSkeptic It's strange, I tend not to look up/read a lot about my MD. It gets quite depressing to be reminded of it all. I'm interested in possible future treatments, but in no way have I got my hopes up. I find it's easier to take each day at a time and try to cope that way.
I am aware of the amazing advances in stem cells though, and my fingers are crossed that they'll one day help me!
My mother recently discovered that she has MS, my father had polyomelitis when he was a child, and yeah they're not the same thing as your condition, but i can sympathise more than most people.
Does your town in comparison to other places you've been to or read,heard of etc have more ramps etc to make your life a little easier? In which places do you have the biggest problems going to because of your disability?
In Greece (my country) things for people with disabilities aren't too good.
@dexter21380 A lot of where I live is accessible, but I found when I went to Europe, it was terrible. Mainly because of how old a lot of the roads and buildings were, which is fair enough. I don't expect them to install a lift in a 500 year old castle!
@moshegirl I'm currently unemployed at the moment, but I am doing my Honors degree in Psychology, so hopefully I'll have a great job helping youth after that.
with all the illegal performance enhancing drugs out there for athlete you think some of those would help to resist or even some what counter the effects of Muscular Dystrophy. At least you have your mind... I guess; me some unknown cause is nibbling at certain cognitive functions in my mind. Which is worse, having your mind decay or becoming trapped within the body that will not move, will never know even with the debate.
You can drive a car using just your hands, millions of gamers do it every day! OK, they do it virtually, but you can certainly configure a car to fit your needs.
Even getting on the car doesn't have to be a problem!
@epsilon8998 It does affect it quite significantly. As you can imagine, it would be difficult to meet people, let alone those who can look past the physical problems.
I haven't had boyfriends, due to both no interest, but also I wasn't prepared to open myself up and trust someone.
@FearBlandness You're very brave for admitting that. You're so pretty it's hard to believe there isn't someone out there who's interested. Have you tried dating other people who have your condition or who also have wheelchairs?
@epsilon8998 Fortunately, it is possible to go through life with the understanding that there are far more important considerations than finding a mate.
@FearBlandness On a note unrelated to this video, I am curious as to your views on religious freedom and tolerance. I ask because of the recent US Supreme Court ruling Hasanna-Tabor v EEOC- a case exempting religious institutions from government anti-discrimination laws (the employee became handicapped and was fired as a result). I thought this might be something to discuss and possibly make a collaboration video about. PM me if you're interested?
@DBSpenser So, the church had no faith that prayer would help the disabled person to recover? If that is the case then why should anyone think prayer, or religion in general, is effective and worthwhile.
This would have been a fantastic opportunity for a church to show how effective prayer is. But they fired someone because it was no longer profitable to keep him/her, and resorted to a court case to 'validate' the dismissal.
Church charity at its finest. *shakes head in sadness*
@rednecktrucker1969 Yes I can theoretically have kids, but being pregnant would be too much of a stress on my body and I'd basically be bed bound. Luckily I'm okay with not having kids.
If you are ever looking to dream of hope, Google "Muscular Dystrophy: Stem Cells That Repair Injured Muscles Identified". It's a Science Daily article.
I'm glad to mentioned the last bit, I had actually looked it up a while ago (years and years now, I had met someone with a family member that had it) and had heard about the possible shortened life-span then. So, I had wondered about that, if you hadn't mentioned it, I was going to ask. Question: With your strain, is it ever going to affect your heart or stomach muscles?
I still maintain, if you hadn't mentioned it, I'd never have guessed. You really are a very strong and independant person.
I'm very sorry to hear that. If it makes you feel better which I don't know why it would but I have tuberous sclerosis, it causes epilepsy and tumors to grow on organs in my body. So far I've had a tumor on the left side of my brain that they removed when I was ten and I have a very small one on the right side of my brain that I'm taking medicine for. They think I have one on my heart but they can't detect anything. I try not to let it control my life although sometimes it can be hard not to.
Im shocked at the comments, just because she has an illness doesn't mean she still isn't drop dead gorgeous, and yes her accent and sharp intellect is over the top, but what would I know Im just a dog too ; )
Oh, and would you say your emphasis on appreciating people's mental capacities is a result of your difficulties with mobility? Or were you always a cogitating motherfucker?
How far can you walk without the wheelchair? That's pretty amazing that you've managed to hide the it this long. I'm still shocked by how well you (and people with diseases in general) seem to cope/come to grips with their conditions. Also, what's up with the nose ring?
@synchronium24 I can probably walk a few steps, aided. So not far at all. The nose ring is so I look tough and individualistic. Or it could just be because I like it?
have you seen the new cars that will allow you to open up the back of the car,wheel your chair right in and allow you to drive using hand controls? I imagine they may be expensive but unless you have no upper body control then you would be able to drive,wheel chair and all.
@synchronium24 it looks cool too. I like the idea of giving someone mobility on the road who doesn't have it. some have more traditional car controls while others have a sort of motorcycle handle bar controls but seeing it work was something to see. a person in a wheel chair was actualy driving and didn't even gave to get out of their chair to do so.
your great and I apologize on behalf of all men who's intellect seem to disappear when a pretty girl as yourself try to explain to (said men) about something you and many others go through.. YOU ROCK
Is your condition going to stop you from making youtube videos? That is all that I care for.
Just kidding. I know you don't like being called an "inspiration" the way you cope with your condition, but like it or not you will always appeal to be an inspiration to everyone that you know.
can you not get a special car to transport yourself
i remember in Scotland about 40 plus yrs ago we all had a
friend who had a special cripple car for 1 and wee could fit 4 in it
to go to the dancin.....now disco or night club
we used to hold him up to hold him up and waggle his legs to dance with a bird
and he loved it
and he never got done for drink driving
later in life i married a beut nurse in the field who died 5 mths ago
who taught me a lot.you are brave and beautiful young woman
swinewarrior 2 days ago
now we know you are a wee devil......on your left the curtain is making it look
like you have little horn sticking out of your head....looks best after 6.00
excellent video
swinewarrior 3 days ago
Thank you for your cool video. I found it informative and candid. I appreciate it very much. Jinho
goldentalon 3 days ago
I have Limb Girdle MD, what kind of MD do you have? I love this video btw!!
nhenn93 4 days ago
@nhenn93 I have Limb Girdle too! Woo! Cripple twins! I'm glad you like the clip :D
FearBlandness 3 days ago
Great video. I was diagnosed with MD when I was 8 or 9. I'll be 38 this September. I remember reading the statistics and thinking I would be dead by 30. I think it has made me work harder at doing the things I wanted because I never know when the hammer will fall. Why don't I make a video? Because I am an American with a "southern" accent. The moment most folks hear the accent, they assume I know nothing. It sounds better this way. ;)
Also, big thumbs up on the atheism vid.
cerealkiller1124 1 week ago 2
Don't you have an electrical wheelchair? What good is a manual one if you can't drive it anyways?
cmdstraker 1 week ago
you are a boy
joking
MirageScience 2 weeks ago
I wish you the best always. I appreciate your work. Thank you for your efforts.
thhall459 2 weeks ago
LOL..We joke around about this all the time. Everyone gets MD and MS confused!
speakfoundation 2 weeks ago
I saw your video, your very engaging & fun to listen to. I run an organization in the states which focused on FSHD, and generating funds for that research. With your discussion of your "winged scapula" I wondered if you have FSH Muscular Dystrophy.
Best wishes to you!
tecolella 3 weeks ago
Beautiful woman in more ways than one :)
SloMoHeap 3 weeks ago 3
For those who didn't look but are wondering, the "most people with MD don't live past 30" and "most people with MD are male" are connected. Pretty much the most common form of MD is Duchenne MD, which almost never affects females (due to the way the gene for it is transmitted, women can be carriers but are almost never affected) and it is also the most lethal. All the other forms of MD have much better prognoses.
evensgrey 3 weeks ago
thanks for the video. i liked listening to your australian accent :)
1stSilence 4 weeks ago
*hugs* *cheers you on* *\o/*
theinnerbadger 4 weeks ago
Thanks for sharing.
photodube 4 weeks ago
Getting out some is a LOT better than being completely housebound.
And Wow. Someone actually asked if you had legs? XP
Still!
Better question - Ever get a lot of attention from Devotees? >.<;;
And if so...What's your take on them?
....A lot of 'um freak me out. Seems like soo many Devotees do NOT know what the common courtesy is...-.-;;
RhayvenBlood 4 weeks ago
Thank you for the information. You are spot on mate.
krapptacular 4 weeks ago
I'm not sure how interested you are in science, but do you keep up with the potential treatments for MD, such as gene therapy (using a retrovirus to inject your muscle cells with the gene needed to allow them to produce the correct proteins)? Google Scholar is a fantastic source for new papers that have been published.
I am also curious as to whether you have hope that we will discover a working 'cure' for MD within the next 50 years. I'm fairly confident that we will, but what do you think?
ScientificSkeptic 4 weeks ago
@ScientificSkeptic It's strange, I tend not to look up/read a lot about my MD. It gets quite depressing to be reminded of it all. I'm interested in possible future treatments, but in no way have I got my hopes up. I find it's easier to take each day at a time and try to cope that way.
I am aware of the amazing advances in stem cells though, and my fingers are crossed that they'll one day help me!
FearBlandness 4 weeks ago
I am very glad I found your channel.
centoguzzi 4 weeks ago
My mother recently discovered that she has MS, my father had polyomelitis when he was a child, and yeah they're not the same thing as your condition, but i can sympathise more than most people.
Does your town in comparison to other places you've been to or read,heard of etc have more ramps etc to make your life a little easier? In which places do you have the biggest problems going to because of your disability?
In Greece (my country) things for people with disabilities aren't too good.
dexter21380 4 weeks ago
@dexter21380 A lot of where I live is accessible, but I found when I went to Europe, it was terrible. Mainly because of how old a lot of the roads and buildings were, which is fair enough. I don't expect them to install a lift in a 500 year old castle!
FearBlandness 4 weeks ago
I must say, because of your outlook on life, I think you rock!
DemolitionDoc 4 weeks ago
@DemolitionDoc Thanks! My outlook is just the same as anyone I reckon. Just trying to get through the day.
FearBlandness 4 weeks ago
You think well on your feet! What is your occupation?
moshegirl 4 weeks ago
@moshegirl I'm currently unemployed at the moment, but I am doing my Honors degree in Psychology, so hopefully I'll have a great job helping youth after that.
FearBlandness 4 weeks ago
with all the illegal performance enhancing drugs out there for athlete you think some of those would help to resist or even some what counter the effects of Muscular Dystrophy. At least you have your mind... I guess; me some unknown cause is nibbling at certain cognitive functions in my mind. Which is worse, having your mind decay or becoming trapped within the body that will not move, will never know even with the debate.
opaldragon75 4 weeks ago
Why can't you drive?
You can drive a car using just your hands, millions of gamers do it every day! OK, they do it virtually, but you can certainly configure a car to fit your needs.
Even getting on the car doesn't have to be a problem!
vollmuell 4 weeks ago
How does your condition affect your love life? Are you in a relationship? Have you had boyfriends?
epsilon8998 4 weeks ago
@epsilon8998 It does affect it quite significantly. As you can imagine, it would be difficult to meet people, let alone those who can look past the physical problems.
I haven't had boyfriends, due to both no interest, but also I wasn't prepared to open myself up and trust someone.
FearBlandness 4 weeks ago
@FearBlandness You're very brave for admitting that. You're so pretty it's hard to believe there isn't someone out there who's interested. Have you tried dating other people who have your condition or who also have wheelchairs?
epsilon8998 4 weeks ago
@epsilon8998 Fortunately, it is possible to go through life with the understanding that there are far more important considerations than finding a mate.
DBSpenser 3 weeks ago
@FearBlandness On a note unrelated to this video, I am curious as to your views on religious freedom and tolerance. I ask because of the recent US Supreme Court ruling Hasanna-Tabor v EEOC- a case exempting religious institutions from government anti-discrimination laws (the employee became handicapped and was fired as a result). I thought this might be something to discuss and possibly make a collaboration video about. PM me if you're interested?
DBSpenser 3 weeks ago 2
@DBSpenser So, the church had no faith that prayer would help the disabled person to recover? If that is the case then why should anyone think prayer, or religion in general, is effective and worthwhile.
This would have been a fantastic opportunity for a church to show how effective prayer is. But they fired someone because it was no longer profitable to keep him/her, and resorted to a court case to 'validate' the dismissal.
Church charity at its finest. *shakes head in sadness*
Knightyme 3 weeks ago
@Knightyme Anyone wishing to reply, PM me so as not to be off topic of this vid. Thanks. :)
Knightyme 3 weeks ago
Has everyone on the freakin planet been getting storms lately? Jesus it was practically flooding in California for the past couple days too
epsilon8998 4 weeks ago
Can you have kids? Do you want to have kids?
rednecktrucker1969 4 weeks ago
@rednecktrucker1969 Yes I can theoretically have kids, but being pregnant would be too much of a stress on my body and I'd basically be bed bound. Luckily I'm okay with not having kids.
FearBlandness 4 weeks ago
Thanks for the clarification. For some reason, I thought you said you had MS. And I'm glad to hear it doesn't effect your mental/cognitive abilities.
MrQuandoaroma 4 weeks ago
How old were you at symptoms onset? Is yours one of the Distal forms of MD?
Kalevala87 4 weeks ago
@Kalevala87 I was about 9 when I first started noticing my symptoms like running weird, less strength in my legs, walking funny, etc.
FearBlandness 4 weeks ago
If you are ever looking to dream of hope, Google "Muscular Dystrophy: Stem Cells That Repair Injured Muscles Identified". It's a Science Daily article.
zarkoff45 4 weeks ago
I'm somewhat surprised (in a sad way) and also impressed (that you didn't just gave up).
You are gorgeous, smart and brave!
SEThatered 4 weeks ago
Well, to be picky, MS attacks the oligodendroglial cells coating the axons and not the nerves themselves.
I'm a grammar Nazi by day, though.
MrStillmans 4 weeks ago
@MrStillmans
But this process eventually destroys the cell itself too...
So generalising, you well may say: it attacks a cell.
SEThatered 4 weeks ago
You're quite an impressive person. Glad to have found your channel.
And not to mention, you're super cute as well.
RhakaiWest 4 weeks ago
How's the rain at your house?
TadRaunch 4 weeks ago
I just want to say that it is really brave of you to talk openly about this. I just don't think that most people would be comfortable doing it.
TheSH1N1GAM1 4 weeks ago 9
I'm glad to mentioned the last bit, I had actually looked it up a while ago (years and years now, I had met someone with a family member that had it) and had heard about the possible shortened life-span then. So, I had wondered about that, if you hadn't mentioned it, I was going to ask. Question: With your strain, is it ever going to affect your heart or stomach muscles?
I still maintain, if you hadn't mentioned it, I'd never have guessed. You really are a very strong and independant person.
PurpleGhost 4 weeks ago
had no idea you couldn't walk.
thanks for the info vid. love hearing your sexy voice.
eyallev 4 weeks ago
On the bright side, you can add MD after your name without the long study. ^^
Uhmu45 4 weeks ago 7
You are lovely, and I always enjoy the frankness of your videos.
geekalpha 4 weeks ago
I'm very sorry to hear that. If it makes you feel better which I don't know why it would but I have tuberous sclerosis, it causes epilepsy and tumors to grow on organs in my body. So far I've had a tumor on the left side of my brain that they removed when I was ten and I have a very small one on the right side of my brain that I'm taking medicine for. They think I have one on my heart but they can't detect anything. I try not to let it control my life although sometimes it can be hard not to.
exacerbatedtaboo 1 month ago
your intelligence is what most attracted me to your vids keep on keepin on...
MrSanman199 1 month ago
I am curious, but you do not have to answer. Are you under medication, diet, and or physical program?
toucan780 1 month ago
@toucan780 There is no therapy or medication/diet that can be taken for my MD.
FearBlandness 1 month ago
I hope it doesn't freak you out that I only ever care about your thoughts. :)
allidock11 1 month ago
8:12 "cause assuming things makes...." I thought you were gonna continue with "....an ass out of you and me"
kayak2004 1 month ago
Im shocked at the comments, just because she has an illness doesn't mean she still isn't drop dead gorgeous, and yes her accent and sharp intellect is over the top, but what would I know Im just a dog too ; )
pandorachild 1 month ago
You get a hug. *huuuuug*
I hated the weather in Queensland. WA isn't being much better. Dryer, but it gets fuck off hot.
stuartp2006 1 month ago
Oh, and would you say your emphasis on appreciating people's mental capacities is a result of your difficulties with mobility? Or were you always a cogitating motherfucker?
synchronium24 1 month ago
@synchronium24 I def value mental over physical for that reason. Anybody can educate themselves, but not everyone can grow a limb, etc.
FearBlandness 1 month ago 3
How far can you walk without the wheelchair? That's pretty amazing that you've managed to hide the it this long. I'm still shocked by how well you (and people with diseases in general) seem to cope/come to grips with their conditions. Also, what's up with the nose ring?
synchronium24 1 month ago
@synchronium24 "what's up with the nose ring" she's going through a rebellious phase
ROW ROW FIGHT THE POWAH
lefayad1991 1 month ago
@lefayad1991 Just who the hell do you think she is?
asdfbobbyasdf 1 month ago
@asdfbobbyasdf FearBlandness? unless i'm on the wrong channel and am tripping balls on mushrooms
lefayad1991 1 month ago
@lefayad1991 You said row row fight the powah so i figured you would have gotten then TTGL pun.
asdfbobbyasdf 1 month ago
@synchronium24 I can probably walk a few steps, aided. So not far at all. The nose ring is so I look tough and individualistic. Or it could just be because I like it?
FearBlandness 1 month ago
@FearBlandness its cuz ur a rebel
lefayad1991 4 weeks ago
@FearBlandness
Well, the nose ring is fucking awesome ;)
RhayvenBlood 4 weeks ago
have you seen the new cars that will allow you to open up the back of the car,wheel your chair right in and allow you to drive using hand controls? I imagine they may be expensive but unless you have no upper body control then you would be able to drive,wheel chair and all.
TheBadcop69 1 month ago
@TheBadcop69 sounds cool.
synchronium24 1 month ago
@synchronium24 it looks cool too. I like the idea of giving someone mobility on the road who doesn't have it. some have more traditional car controls while others have a sort of motorcycle handle bar controls but seeing it work was something to see. a person in a wheel chair was actualy driving and didn't even gave to get out of their chair to do so.
TheBadcop69 1 month ago
your great and I apologize on behalf of all men who's intellect seem to disappear when a pretty girl as yourself try to explain to (said men) about something you and many others go through.. YOU ROCK
superman19837 1 month ago
Is your condition going to stop you from making youtube videos? That is all that I care for.
Just kidding. I know you don't like being called an "inspiration" the way you cope with your condition, but like it or not you will always appeal to be an inspiration to everyone that you know.
logicbloke 1 month ago
@logicbloke Haha no it will never stop me!
FearBlandness 1 month ago
@logicbloke Haha no it will never stop me!
FearBlandness 1 month ago
I'm here for the Australian accent and the boob tattoo
lefayad1991 1 month ago
@lefayad1991 You're a dog.
FearBlandness 1 month ago 3
@FearBlandness you know i'm fucking hilarious. I'm the funniest guy i know
lefayad1991 1 month ago
@lefayad1991 How can you take a descriptive video explaining a life challenge, and focus on such perverse aspects...
superman19837 1 month ago
@superman19837 dude...i'm a friend of hers. she knows i'm joking. I knew about this before any of this was revealed on youtube. I'm not some asshole
lefayad1991 1 month ago
@superman19837 Haha it's alright mate. I know he's joking. He already knew about this before I revealed it.
FearBlandness 1 month ago
@FearBlandness white-knights...white-knights everywhere :p
it looks like this video has opened up a can of worms lol...look at all the questions people have
lefayad1991 1 month ago
@superman19837 well, being a guy helps with that .....
eyallev 4 weeks ago