Living With Motor Neuron Disease

[chelsealevii]

i know how you people feel my sister had it she died at the age 32 in 2006 and my cousin died of it last year my other cousin has it at the moment it has gone through all my dads side it is a horrible disease to put up with xxx

[Leli002]

My daddy is diagnosed from this<3

[tearsdrop12]

my mother died from diz on january 2011 da saddest thing ever seen a loved one suffering 4rm diz nd yeah i knw its da worse thing dat could ever happen in our fam r.i.p. mother pray to god ill find comfort later on in life your gone but not forgetten god please help find a cure for dis sickness ..+

[Tkdbigsteven]

my dad was diagnosed last year i feel like he is a diffrent person and i dont remeber his voice. if their is a god wht dose he do this?

[gollymutt]

Why do good people get such terrible diseases?  My partner died of a severe case of myastenia gravis which is not considered as deadly as MND but in severe cases it can be just as bad.

[IBroLLyISePhIrOtH]

sad :(

[phuketrex]

I was diagnosed with MND/ALS in September. Already I have been in a wheelchair 24/7 for 3 months and I am now virtually paralysed and am having trouble speaking and swallowing My arms are skinny and all the muscle has gone and my hands are curled up and my fingers stiff. This is a hideous disease and I will not be staying around for the final nasty stages.

[spifflication]

My friends and I are running 6 marathons in aid of MNDA you can watch our Arctic to Desert Challenge videos here watch?v=8hntC53SpEA .  Thanks very much.

[Lindner12ewald]

OMG

[hellspawnds]

My friends mom is diagnosed. She's been on heavy metal detoxification and raw food diet since last christmas, she has regained quite a lot of her speech and arm strength. Just sayin'... Peace out.

[sidrabaig20]

@hellspawnds yes you r right. I have been daigonsed by Motor Neuron Disease 16 years back. I am a muslim, I recite "ya salamo" is arabic word which means "oh peace" everyday. believe it or not I have not only regain my muscles even I have started reganing my power. Earlier my left hand was unable to go up now it goes up with some weight on even. my little left hand figure became straight earlier it was bend. Its true just saying peace out or oh peace gets you better.

[sidrabaig20]

@hellspawnds yes you r right. I have been daigonsed by Motor Neuron Disease 16 years back. I am a muslim, I recite "ya salamo" is arabic word which means "oh peace" everyday. believe it or not I have not only regain my muscles even I have started reganing my power. Earlier my left hand was unable to go up now it goes up with some weight on even. my little left hand figure became straight earlier it was bend. Its true just saying peace out or oh peace gets you better.

[dollyvdos]

@sidrabaig20 my father in law was diagnosed with Motor Neuron disease few years back . Your story seems to be very inspiring. Would you please tell me where are you getting your treatment done.Any Information regarding the treatment would be of great help. You can get in touch with me on bluestar_delhi@yahoo.co.in Thank You.

[sidrabaig20]

@dollyvdos I was 8 when it started n12 when dx. docs gave life span of 19 years but I am 27 now still alive. I m not takin any treatment cause doctors themselves say there is no cure. I took physio and excersice till I was 14 after that I stop cause it didnt help me in anyway n lose of money. Now I am alhamdulilah I am still walking, dancing, talking but yes I hv difficult in doing small tasks, movin n lifting big objects but thats ok every1 has difficulties n weakness in something. conti-

[sidrabaig20]

@dollyvdos I am unable to post the second part GRRRR

[sidrabaig20]

@dollyvdos Believing how fortunate he is? Staying happy n Putting complete and total faith in GOD only will help them to fight n defeat. You can only be defeated if you give up. Keeping up his faith firm and tell him to ask GOD for help daily. May God guide you, give you health and protect you from every evil. Ameen

[IveBeenThereReally]

My nan has MND and it's horrible to see her go through it. i'm 15 years old & its my mum who mainly looks after her. she used to walk me to school when i was younger, & be there for me whenever but now i just see her & i get all upset cause she's not the woman she used to be. she's so weak. i miss the old her & i really hate this stupid disease. i love you nan<3

[tungata8]

@IveBeenThereReally my dad has mnd and im 15 . the doctors saw it 10 years ago but he started to feel things much longer time before that. And happily its slow in my dad. So yeah i feel your pain.

[IveBeenThereReally]

@tungata8 it's really crap aint it? i mean, i know its harder for you cause youre closer to your dad than me and my nan but its still an awful disease. i only came onto this video to see what it was like because at first i didn't really understand. thinkin of you x

[tungata8]

@IveBeenThereReally thx yep it really sucks :S but happily it is wery slow in him. but just tell your nan i beleve they will find a medisen to fix it becouse they are allways finding some new things , like they found a medisen to cure rats from MND and that was 1 or 2 years ago so i beleve its not that long to they find cure :)

[IveBeenThereReally]

@tungata8 i'll tell her, thanks. let's hope they find the cure pretty soon for my nan & your dad :)

[tungata8]

@IveBeenThereReally yep :)

[lllBADMANlll]

I found out that i have this disease today, the muscles in my arms and shoulders just disappeared very quickly and now i am very weak, life is funny i cant help but laugh at myself.

[LAUR3Nohh8PAiiG3]

i have sooo much admiration for you & your family!

i lost my dad to MND 6 months ago now,

it was horrible to sit and watch him suffer. i just felt so helpless!

Huge respects go to people living with MND, and there carer's and familys.

Sleep tight dad 1/11/1967 - 24/4/2009 Miss you sooo much :'( xxxxxxxxxxxxxxx

[PreformYourDream]

I am doing a school project on MND! Its so sad, my heart goes to those people suffering or those connected with the sufferers! Love From Sophie

[mona83able]

thanks 4 uploading it.i m a physiotherapist n treating a patient with mnd.nw i will work more harder on her n will try to help her as much as possible.thanks a lot.

[HeavygearDiver]

Thank you sir for such a candid interview. I just found out a dear friend past away last year after a short fight with it. Hang in there sir and fight till the end!

[chaseFreaks]

my dad has it... but there is this clinic in my area that say they can get it cured... they have cured a lot of MND patients... i did not believe them .. so they introduced me to a MDN patient who cam eto them in 2004 in a stretcher. today he is walking.. it's been abt 2 weeks now my dad is going to them regularly.. there is no medication.. these guys press points in the body... this is alternate medicine......

[WeirdoOwl]

actually there is, it's called Riluzole, it inhibits glutamate release thus it ONLY SLOWS down the progression of the disease but not cure it, i don't know what they do in alternative medicine.

[seandamondotcom]

true. Rilutek will slow the progression of MND 2-3 months

I am unsure about Alternative medicine too! I am sure people who were dying from this would be desperate enough to try it if it existed. But who knows

[0pink0bubble0]

my dad had this we lost him last year 2008 i still do not know all about m.n.d the why and how i

[WeirdoOwl]

MND is destruction of central nerve tracts that are responsible for motion (called upper motor neuron) and this happens both in the brain and spinal cord. this injury is thought to be due to genetic factors + oxidative stress causing damage to critical protiens. when motion is disabled, respiratory muscles fail to work and that's how patients die. so ventilatory support can help prolong survival just a for monthes...

[suloui]

Thankyou for sharing, Tony you are amazing X

[Turnipthatistasty]

Hang in there!

[ckckbt]

my dad had M.N.D r.i.p daddy, 1948-2002.... i feel for you watching my dad every day suffer was the worse time of my life, is there a god??xxx thinking of u

[sidrabaig20]

@ckckbt V shuld accept tht all good n bad comes from GOD. V shuld nt ask 4 calamity or difficulties. H/w, whe these come to us, v shld bear them wid patience n seek God’s pleasure by asking for HIS assistance in overcoming tht calamity. I consider myself fortunate. I hv some difficulties but I hv remained steadfast. Put your complete and total faith in GOD only. Don't loose faith n courage. Believe that with God’s help you can achieve what you set out to do. May God give sickones health. Ameen

[ckckbt]

@sidrabaig20 load of rubbish!!!!! my dads no longer here now he suffered far to much for me to ever believe in god!!! if we are gods so called children why does he make us suffer!!! i have my beliefs and they dont involve a god, my best friends little 18 month old boy is in hospital really ill so wheres god to look after him? bit late to put my faith in god as he took the one person whome ment my world and who never got to see his grandkids and that was my dad :O)

[sidrabaig20]

@ckckbt Shall you listen for a few moments. If you

agree with what I say then take it, and if not, we shall desist from

this talk. If you are not at all interested thn leave it. :) I never wanted to hurt you n if I did anyway I am sorry :S :$. I know how it feels cause I am suffering from this from last 16 years. Pain nourishes courage. You can't be brave if you've only had wonderful things.

2 things I wll only say:

May God give tht child health. Amen.

RIP your father.

[ckckbt]

@sidrabaig20 look hun, we are all entilted to our thoughts on god and i have mine, my dad was very couragous and brave thanks he fought till the end, he had ALS the worse, he was compleatly un able to move and talk, was peg fed and also couldnt even use the machine they gave him to comunicate, the only thing he could do was roll his eyes, to still have your mind while this is happening i will never understand in god to let his CHILD suffer! have u been diag with mnd?? 16 years seems a long time?

[sidrabaig20]

@ckckbt Yes I agree with you. Everyone is entitiled to have their thoughts. Yes I was 8 when started and 12 when dx. doctors still not sure how I have ALS. I dont hav a history I was too young to have ALS But still I hav it. They had a medical borad of 100 doctors when they DX, I was with my grandfather cause my mom use to work n my father was in uk. I came home told my mom laughingly. U know mom wht they said? I am gonna survive till 19 only. haha I dont beleive them cause I am gonna make it.

[ckckbt]

@sidrabaig20 ............... try the website 'mnd association' type in ''what is PLS'' on the search for bit xx

[sidrabaig20]

@ckckbt Sure hun xxxx

[sidrabaig20]

@ckckbt lol for grammatical mistakes..typographical errors lol

[ckckbt]

@sidrabaig20 .............. look hun im not saying you havent got ALS, although i would find it very strange if you have as ALS is a very very fast motor neurone disease, with a life span of only up to 5 years, i have a friend whose dad has PLS???

just wondering if you have ever been tested with this?? it effects your upper motors not lower??? just wondering thats all, take care :O) xxx

[Anykey123]

Ich bin und war schon immer für Sterbe Hilfe, im Falle des Falles

was meine Person betrifft !