1 Year in the Life of ALS

[@steveheidi6662]

A tribute to a brave woman. Love to those she left behind. ALS is a terrible disease.

[@patricesteiner1168]

Heartbreaking. We need Congress to act so that experimental - but potentially LIFE SAVING - drugs can be available to all ALS patients!!

[@fademan]

Potential is the key word here...

[@christiwitcher6950]

Interesting and well done until the ending.

[@jamierose71]

Hi Christi, thank you for watching my video, & leaving a comment. I had to watch the video again, to remind myself of what I put at the end. When I made the video, the advocacy group that I am part of, was doing a campaign where we put red tape over our mouths, with messages to the FDA. Basically saying "Take action ASAP because we don't have a lot of time" If I did not know that, and watched the video -I agree that it does not make sense. I think you for your input

[@amberlynn8591]

If anyone is here to comment that this was done in bad taste please read Jamies explanation in the comments, IT IS IMPORTANT AND MEANT TO SEND A STRONG MESSAGE❤️

[@Californiadreamin715]

Praying for you sweetheart. I love your awesome spirit!!!!!! ❤

[@teach4him841]

God bless you and help you with this sad diagnosis ❤🙏🏻✝

[@dnakase]

I have ALS. Diagnosed Nov. 2020. Still got my legs but that's about it. The fact that medication mentiomed in the comment is now approved only claims to extend life 6 mos and costs $100k tells you the hellscape we inhabit

[@Tracy-rf7ri]

I'm so sorry

[@hemplifeglobal]

A rare soul indeed ❤

[@gregwingate4715]

God Bless! I’ve been there

[@patpatou6207]

C'est quoi la fin elle est dans une tombe j'ai pas compris sorry

[@kengreenberg]

Yes, what’s with the ending?

[@jamierose71]

Hi Ken! This is a bit of a copy/ paste -but I am paralyzed now, so sometimes I take shortcuts. Thanks for watching my video, & leaving a comment. I had to watch the video again, to remind myself of what I put at the end. When I made the video, the advocacy group that I’m in, had a campaign where we put red tape over our mouths, with messages to the FDA. Basically saying "Take action ASAP because we don't have a lot of time". There are thousands of us, so it made sense at the time. If I did not know that -I agree with you, what's up with the ending?? Thank you for your input, I appreciate it

[@kengreenberg]

@@jamierose71 No apologies! My observation was at the very least tone deaf. A close friend was recently diagnosed and the progression (more accurately, the deterioration) has been stunning. ALS is insidious. All of us owe PALS our love and support.

[@davidfleck6700]

There's no cure and it's a sad sad disease

[@Team920_]

Go see Dr .Mark Ghalili of Regenerative Medicine LA while there is still time . He can help you . He's in Los Angeles

[@TinCupChalice40]

Can you please elaborate on this doctor my cousin was just diagnosed last month. Can you tell me more about what this doctor can do? Thank you for your time.

[@Team920_]

@@TinCupChalice40 This doctor has reversed cases of aphasia, dementia , multiple sclerosis. It's worth even calling for further info . Just Google his name , his clinic pops right up . He's located in Los Angeles

[@DaisyG37]

The end should be cut out.

[@jamierose71]

I had several comments about the end.I had to watch the video again, to remind myself of what I put at the end. When I made the video, the advocacy group that I am part of, was doing a campaign where we put red tape over our mouths, with messages to the FDA. Basically saying "Take action ASAP because we don't have a lot of time" If I did not know that, and watched the video -I agree that it does not fit in. I appreciate the feedback!

[@amberlynn8591]

Please, a lot of people are saying that and it is frustrating,watch her videos and you would know the meaning behind that picture which is meant to send a message to the FDA for access to treatments for ALS. This is the sad truth and Jamie is living it, many people have done this very thing.

[@lifewellloved0204]

The ending was in poor taste.

[@jamierose71]

Thank you for your candor. I had to rewatch the video to figure out what was in Poor taste -because it's all Little clips of my life. I can clearly see your point of view. At the time, the ALS advocacy group I am part of, was doing a campaign where are we all put red tape over our mouths & wrote died waiting, etc.. About 5000 people Took part. At the time, it made sense at the end of the video… as to say FDA act soon or we will die! Without all of that knowledge, the ending does not Connect with the rest. Several people I have pointed it out -so I think it's worth revisiting. I just need to borrow hey set of hands

[@TinCupChalice40]

How are you doing? I see that it’s been a year since you responded to this question. My cousin was just diagnosed last month and don’t worry about your video being of poor taste. Sometimes it Hass to be that way to get peoples attention.@@jamierose71

[@hemplifeglobal]

@@jamierose71well said ❤️🙏

[@GaZonk100]

@@jamierose71 the end is slightly absurd. mocking and even goading the relentless crushing certainty of where this process is going. . .I think its art-school whimsy suits the theme

[@jillnunnen1815]

Extreme poor taste....

[@jamierose71]

Hi Jill, Thank you for taking the time to watch the video of my first year fighting this horrible disease. I pray that you are not suffering from ALS/MND. I appreciate your feedback, but would ask that you elaborate. When you were watching the video showing me losing the ability to walk, doing my best to smile while I am literally dying… which part did you find to be in"Extreme poor taste"… not just "Poor taste", but EXTREME poor taste. Becoming a quadriplegic, losing the ability to breathe and eat can lead to poor judgment. As the mommy of a 10 year old, I do my best to fight ALS with a smile on my face and courage in my heart.… since we don't have much time left, I drive to set a good example. Please let me know what would cause you to take time out of your day, to address a woman on her deathbed, with such extreme elaboration. I will do my best to rectify the situation, so that I do not inflict negative emotions upon anyone else. PS -reply quickly… I DO have ALS⏰

[@carlosburgos56]

Watching the video is shocking. Living the experience first hand or having someone you love going through ALS is a different story. Sadly but truly the only way to open peoples eyes is to show videos like this. More so, to have politicians signing bills to approve the budget for more studies regarding ALS is really needed. Until we get that done, I don’t think that anything is “extreme poor taste”

[@davidfleck6700]

She's lucky that she going to go swimming my husband would go up to his waist and stop breathing because it takes your muscles away and it wasn't able to go at the pool or the beach he passed away after 3 years when he found out what he had and he quit walking fast he lost all his muscles so if she had ALS she had a light case of it I don't understand the end did she pass away