Letter writing campaign for John Robinson

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Postby Chrystal » Mon Jun 21, 2010 9:33 pm

Just trying to keep this post at the top of the list...
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Postby Cece » Tue Jun 22, 2010 1:20 pm

Statement from John's Family:
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John is a caring, thoughtful well loved man. He wishes the best for everyone. For all the 18yrs he has struggled with his PPMS, through the loss of leg strength, (cannot stand or walk anymore), the loss of bladder and bowel control, the loss of his arm strength, (cannot move his arms anymore), the weakening of his diaphragm (difficulty breathing now), the inability to swallow correctly, (cannot eat food - fed by tube only), through all these losses this man is still gentle, loving, and caring towards everyone who crosses his path. When he meets you he smiles and wants to know, "How are you? How is your day going?" He is a man who lies in bed (cannot get up into his wheelchair now), thinking of others, thinking of how everyone is doing. He sleeps 75% of the day due to his chronic fatigue. He does not complain. He does not ask for much. He wants to say thank you to all the people who have written letters to the Canadian government on his behalf. He is forever grateful for your caring, your compassion and your time. He is hoping for CCSVI treatment, hoping it will stop the progression of his MS, to prevent the obvious next step and save his life and remove or decrease his CCSVI symptoms. John, his wife and his two children thank you from the bottom of their hearts. We will keep you posted on any developments regarding John and his request for CCSVI treatment.
*********************************************
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Postby Chrystal » Wed Jun 23, 2010 6:50 am

Please, let's send daily letters to the powers-that-be and media until John Robinson receives help.
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Write every day

Postby Blight » Wed Jun 23, 2010 10:01 am

Email the Premier of Ontario, Dalton McGuinty. What ever assistant reads the email will know the details. Please, at least send the email below.

email Dalton McGuinty dmcguinty.mpp.co@liberal.ola.org

Dear Premier McGuinty,

Please try and save John Robinson. Please immediatley approve him for CCSVI treatment.

name
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bump

Postby 1eye » Thu Jun 24, 2010 10:10 am

bump
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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bump

Postby 1eye » Thu Jun 24, 2010 10:50 am

bump
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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Postby Cece » Thu Jun 24, 2010 12:52 pm

I thought we might continue the campaign until Saturday, I'd posted Barb's campaign on a Saturday, then John's on the next Saturday, and I'm open to posting another campaign this Saturday if there is interest. (I'm not sure how to go about a US based campaign, who do we write and what would we ask?? With Canada CCSVI is already on the political playing field, there is some clarity about who is holding things up: Deb Mathews, Dalton McGuinty, at least for the folks in Ontario.)

But I do not want to forget John Robinson. Does anyone have a blog or website set up where we could continue to post his campaign? PM if you do.

I read of Barb's improvements and I think: why can't Canada let everyone have that? What does John Robinson have to lose, what does he have to gain? And who else out there is dying of MS with this just out of reach?
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Mine Sent

Postby PointsNorth » Thu Jun 24, 2010 2:40 pm

I just finished my letter.

PN
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Postby Cece » Thu Jun 24, 2010 4:16 pm

PN, thank you.

I was just reading the Barrie Examiner article from yesterday, I came across this (about her pre-procedure condition):

But there's a reality as well. Barb's condition is advanced. She has a feeding tube because she can't swallow. She's been bed-bound. The brief times she tried to utter a word, she has barely been audible. A do-not-resuscitate order, issued before the trip was even conceived, still stands. A month ago there was a family discussion about a transfer to Barrie's new hospice facility.
...

"I am at a loss for words about how they can let somebody deteriorate to the point of death," said Paulette O'Leary, a Toronto neuroscientist with MS who underwent the procedure in the U.S. last month. "I'm devastated, as a health-care professional, that we cannot help people.

"I'm still beyond words on how they can deny someone who's going to die."

http://www.thebarrieexaminer.com/ArticleDisplay.aspx?e=2637475
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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johns letters

Postby xyz » Thu Jun 24, 2010 4:39 pm

keep the letters coming
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Postby xyz » Thu Jun 24, 2010 4:50 pm

lets support john
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Postby Brightspot » Thu Jun 24, 2010 7:18 pm

Thanks for posting John's story and the request and the links. Did a bit of cutting and pasting and sent much the same letter by email to each.

I will echo Cece. We will make a diference.

Go Canada!
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Postby Cece » Fri Jun 25, 2010 11:29 am

SoberSandy has posted about John's condition in Dr. Sclafani's thread, hopefully she will repost it here. Yesterday was a scary day for them. He had a mucus plug and couldn't breathe. It took an hour of work to get his oxygen saturation and heart rate back to normal. She feels he is running out of time.

I don't think there's time to wait for Canada to come through, but I don't know square one about how to organise treatment for John. She says that he would be able to withstand the seven hour drive to Albany if there is a doctor there (Siskin, or some other undercover doctor, is there one??).

updated to add: driving would be better for him than flying; she has contacted Dr. Siskin this week and is waiting for the first phone call back; it is a terrible shame that people this ill have to try to travel this far to get treatment; if anyone knows of an undercover doctor close to Albany, please pm.

Please keep him in your prayers and thoughts as well.
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Postby Cece » Sat Jun 26, 2010 10:21 am

*bump*

Not sure where else to post this, I'll move it if there's a better spot, but it's Canadian and Dr. Sandy MacDonald news: a lady on Facebook is saying she has been chosen to be in Dr. MacDonald's clinical CCSVI trials starting in November! So he is doing a study? How is this related to the whole being shutdown-by-Canada? Treatment as part of research is allowed but straight-up treatment is not? Because he owns his own imaging center, there is no irb involved? While he is doing research, will he still not be allowed to perform any compassionate exemption cases on the side?
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Postby xyz » Sat Jun 26, 2010 4:27 pm

john is my son who i love dearly please keep the letters coming
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