Amyotrophic Lateral Sclerosis ALS, Motor neurone disease MND

[wowfornoobs]

I can't imagine what it would be like to have this disease or how to act if one of my friends would get this disease. I imagine it would be a very hard trial to pass and i don't think that anything i say would make it any easier for either you or anybody else but i sincerely hope that you and everybody that watches this video gets better and that a cure is found. I wish you the best. Regards, Robin.

[HylianFury]

pretty girl tough :P

[HylianFury]

does she still live ? i have had fasciculations for a year now no weakness tough but im scared as hell !

[hellspawnds]

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

[summ22]

this disease is so sad and you can still smile. i wish you all the best

[MrBigbadbruins]

God bless.

[kadsoccer]

Thank you for posting the video!

[spinedoc4U]

The positive attitudes I read from those that are afflicted with this dx are amazing and awe inspiring.

[SteveMc1958]

I've watched this video on many occasions and every time it brings a tear to my eye. My brother Terry died of MND in September 2008.

If you want to know more about him and the disease you can visit terrysmnddotcom

Good luck

Steve

[grac27]

and also.... May God Bless you on this journey you're taking.... much love....

[grac27]

My uncle was just dx'd with ALS. He's been such an active man. You look so happy and courageous in spite of your dx. How do you keep your courage up and do u have any helpful words for me for him?

[magalixuminha]

é uma pena que esta doênça esteja mantado pessoas de varias idades e a ciência ainda se mostre tão atrasada.algo estranho esta acontecendo temos que nos inir p descobrir de onde parte p depois buscamos soluções .espero um dia ver a cura ou pelo menos como evitar que mais pessoas morram com uma doênça tão estupida.magali

[911TruthFacts]

Truely sorry about your illness. My thoughts are with you. Chronic pain/ atrophy/ numbness/ fasciculations is my reality yet a situation such as yours and the many others affected puts everything I see into perspective. I'm so very sorry. I constantly remind myself our body is only a vessel, our mind is all that is required to get everything life has to offer. Your smile is more than inspiring. I'm sure this has been such a long road, yet you continute to smile.

[mrdude999]

My mother has PLS. It sucks.

[kaylosydney]

I have it too and it does suck, but I have to make the best of it. It's a reality, my life...so why moan and groan.

[showersheets]

I AM ALREDY LOSIN IT....i have myoconic jerks shaking ....painful burning muscles...vidion problems....four oder ...diahrea for past year.....cold all the time......and the doctors cant find anything....makes no sense...i am glad to see her smile but it is not right and i would not be smiling when i am at that point...she is very strong...............

[maciejwrotek]

been tested for Lyme Disease ?

[showersheets]

i am 26 male from MD. I was in gulf war and messed my back up doin construction. i sweat nonstop, and have mild denervation and muscle atrophy,,.....i know i have something similar to this disease but the docs have no idea what is going on.......i really hate u fuckin christionas and your bullshit.....anyone afflicted with this should have the right to euthenasi.....when i get to this point i will loose mu FUCKIN MIND...

[Knappa22]

I wish I could make it better- you're so young and beautiful.

I'm undergoing lots of tests myself at the moment- I started having muscular pains and twitching back in December, followed by speech problems, and now I've lost a lot of muscle tone. MRI has ruled out tumour and MS, and I've got normal CK and EMG results. MND scares me a lot, and the specialists just don't know at the moment.

I hope you have someone to hold your hand and love you. A thousand blessings on you, K x (aged 28)

[CATZscamp]

I couldn't tell until almsot the WHO ahd it..the guy or the girl..God Bless...

[joewilkins]

Jeannie, I am awaiting diagnosis, but your courage inspires me so much. God bless you

[Sefardisafran]

What a BEAUTIFUL smile!

Sefardisafran (Luis)

Hoboken NJ

USA

[kaylosydney]

You are too young to have this disease. I'm sorry that you have this to deal with and have young children to raise. I am 52 and have Primary Lateral Sclerosis and cannot walk holding onto someone's arm because of severe leg spasticity and a huge balance deficit. I think that we with PLS actually have ALS and that the two are the same thing. Some of us just progress faster than others. I wish you the best.

[gillian2009]

kaylosydney

would you be willing to share some of the symptoms of pls? I have taken every neurological test available with no positive results, also lyme disease test twice, blood tests, etc. The only thing not yet ruled out is PLS. My worst symptoms appear every four months and last for a few weeks. These include difficulty walking (hard to lift my feet and swing at the hips, muscles rapidly fatigue). Did your symptoms relapse in the early stages?

[kaylosydney]

gillian

I guess you could say that my symptoms came and went in the beginning. I would only experience foot drag in the beginning when I was cold or stressed or when I had a glass of wine.Symptoms going for four months at a time sounds more like MS. At first I thought as well as the doctors that I had MS. I had balance issues, foot drag, and fatigue.(similar to MS). Good luck with the diagnosis. It took me over 3 years to get one. It really is hell as you feel as though you are crazy.

[gillian2009]

Thank you kaylosydney. It was very helpful to hear from you. It has been just two years so far for me, so I know I must continue to be patient. Best wishes to you.

[conran4eva]

my mother has been diagnosed with mnd;at the moment its early stages her speech is slightly slurred but does not want to tell any one dont know what to do. siobhan

[jazzshampoo1]

hi i have pls upper motor only i have difficulty walking i use a chair part time u look so young for this disease!!!

[stephanoz]

this video made me cry,,, i lost my mother 5 years ago due to this ,,, seing you smile just warms me and reminds me of my mother,, god bless

[Schizomanicman]

My Mum has just been diagnosed with upper and lower als MND and I know how much of an effort it would have taken you to do that. I will show this to my Mum in the hope that seeing this will give her the strength to do the same. Wishing you all the very best for your future :)

[jeanals]

Hi, sorry to hear your mum has just been dxed with als/mnd, where in the world are you? does your mum have internet access? I'm not totally sure how youtube works, would it be possible for you to contact me privately here on youtube?

Thoughts and prayers to your mum and family.

Best wishes Jeannie x

[Schizomanicman]

We're in London UK. Thank you for your kind thoughts and wishes they are gratefully received, I will send you a private message now :)

[cavaliersfan08]

@jeanals i have a very close friend who has a SERIOUS case of als/mnd and has to use a wheel chair and cant talk he is like stephen hawking he is the smartest person i know and we are very very close friends and i usually spend the weekends when im not working over at his house helping him out

[The391956]

@jeanals Jeannie A injustice has been done to you. You were mis dx with als people die within 2 to 5 years who can't eat can't talk can't WALK you are walking, talking and I would guess eating normal food and no resperator and OUT LIVED the 2 to 5 years and still not bedridden which happens within 2 years of dx You got MILD M.S. or something else not ALS You need to see another doctor MILD M.S. is bad enough to live with.

[childofgod413]

@The391956 MS presents with upper motor neuron damage as opposed to both upper and lower (ALS) MS does not affect LMN and an EMG can easily show this as can a naked eye, lower motor neuron damage presents with weakness fasciculations, atrophy, and more, these are easily distinguishable to a neuro...good to be careful with commanding absolutes without knowledge ...and if you look at statistics there are 10%+ that live past the numbers you quoted...and that number is on the upswing

[teflonmagnet]

thanks for providing this glimpse into your struggle with als. your smile is wonderful.

[jeanals]

Thank you :-)