Occupy als let us try

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km2149

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Mar 6, 2014
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29
Reason
PALS
Diagnosis
04/2011
Country
US
State
ia
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g
if you have Facebook join the group occupy als let us try. we are planning a date to Pickett outside the fda home office to help get the right to try act passed. if you want to truly advocate and truly try and fight for ur life then please join the group and be prepared to make history. stop making excuses and make things happen. have a voice and be heard.
 
Hi km,
You had stem cell therapy in China right?
How did this go, have you had improvements?
I'm very keen to hear about your experience and results.
 
yes I have been trying unsuccessfully to get into a stem cell trial. Although I am queasy about China its not like I have a lot of options now. How did it go?
 
sent a request to join your group
 
I have a blog going about my trip and treatment in China. you could read all my posts so far at keithsalstreatment.blog.com. still waiting to see how much it's going to help cause it takes 3-6 months for the cells to grow and maintain. so far id say it was worth it the bursts of strength I get is pretty neat. read the blogs from the very first post to my latest post. it will be easier to understand how it's going so far
 
over 100 views on this post and only one person asked to join the page. pathetic. seriously folks do u want to fight, kick, scratch, claw your way back to life and save your life. or just sit around and complain , moan and whine about your condition. seriously I can't believe how ridiculous it is that people don't want to fight for there life. a chance at a cure or treatment will come from patients figuring it out . THIS IS US PATIENTS, AND ALS COMMUNITY PEOPLE CHANCE TO HAVE A SAY
 
How much does it cost total to go there and get treatment?
 
>over 100 views on this post and only one person asked to join the page

Keith, have you put it up on the fb Living with ALS ~ For PALS ONLY group?

I put your note up on my wall as well as http://www.racersagainstals.com/About-Us.html
 
I haven't yet but I will post it on that group wall. or u could if your in the group if you want to
 
>I haven't yet but I will post it on that group wall. or u could if your in the group if you want to

I think it will be higher impact if you do it. When the time comes, we will join you at the FDA and will petition for Dr. Appel to join us!
 
Keith try not to take your frustration out on the other PALS, that is not going to make anyone want to join with you.

Everyone has the right to decide HOW they want to live with and cope with ALS, they are not pathetic if they don't agree with someone else.

My PALS has already passed on and I'm in Australia, so that counts me out quickly.

I think it is great that you are being proactive about what you believe :)
 
Tillie-I have been reading some of the laws in Australia with respect to end of life and they are absolutely horrific. I never expected that of a western democracy-censoring of the internet, no right to free speech etc. What is wrong with the politicians there-they all seem to come from the 16th century. even the US is better and we are no great shakes.
 
>and I'm in Australia, so that counts me out quickly.

come on, Tillie, we can teach you enough English to get by ...
 
Hi Neil, (Max I'll try to use English, bear with me)

I'm not sure of what you have been reading.

I can say however that the palliative care system in the area I live in at least are amazing. They totally supported us in Chris staying at home and choosing what help would be given.

He gained his wings in total peace, comfort and in our home alone with me. I had 24 hour phone support from palliative care and was phoning them twice a day to update progress and receive any advice gratefully. I was allowed to tend to him my way, doing his care according to my own gut instinct without any interference of any kind.

Chris flew free around 3am on April 22. I simply phoned the funeral director who arrived around 8.30 am. Together we phoned the GP and organised that the funeral director would bring his body to the surgery to have the death certificate filled out, then he took his body on with him for cremation.

It was very easy, from the point of view that I had no forms to fill out, no permissions to be granted, no investigations, no ambulances, no police, just a dignified collection of his body WHEN I WAS READY.

I felt grateful to be living somewhere that allowed us to do things on our own terms, and just be supported to make that happen. I also have much comfort now as a widow to know I could give that to my Chris with all the dignity and comfort that is possible.

I'd be interested to know what you were reading, as maybe I can interpret some of it in the reality of what happens?

Howzat Max? ;)
 
Tillie, Max, I was thinking that Tillie could probably teach us how to speak proper English a Ndebele you teach her American while I taught her hillbilly.
 
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