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expate
Member
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Posted: Tue Sep 23rd, 2008 13:10 |
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It is so hard to accept that you can't change someone. They have to do the changing. Some people listen to me, some don't. But even the ones who listen basically say, "When you can show me the study that proves this works, then I'll try it."
I read on some thread that's never going to happen given the culturue of medicine here.
It's the nature of the MP that it is difficult to accept for so many reasons. First, there's understanding it. It's pretty science intensive. Then, there's the fact that you have to do it full out. You can't cheat science. (Though I still maintain that if there were a trusted source for MP products, it would be easier.) And the patient has to manage it him/herself, really be tuned in to the process and body and make decisions about what to do or not do next, how to adjust meds. And then there's the whole IP thing. So, yeah, it's a scary prospect.
Just think of how many people can't stick with an exercise plan, or a diet, or a budget, or whatever kind of disciplined self-improvement program they may attempt. The MP requires strict adherence for YEARS. I expect many people don't believe they can do it.
Ironically, I came to the MP because my doctor recommended it. By MP Study Site standards, I'm not very symptomatic at all. In fact, until I started reducing D, I didn't realized that I did/do have sypmtoms of th1 disease. So, I began the MP somewhat prophylactically (I have a brother with psoriasis and another with frontotemporal dementia).
We'll see where it goes, but my hope is that with fewer bugs to kill, I will be able to re-engage from lifestyle restrictions sooner than 2 - 5 years. And maybe that will give encouragement for others to get help sooner.
Oh, I also think the role of doctors in spreading the word and treatment is crucial.
Odette
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Hypervitaminosis D 1,25-D 52 pg/ml, 25-D 38 (4/08), 25-D 34 (8/08), 25-D 29 (10/08), 25-D 14 (3/09), 25-D 15: D3=15, D2<4 (6/09): all ng/ml, started Ph1 7/17/08, Ph2 11/4/08, Ph3 2/18/09. Covered up, but no facemask any longer. NoIRs. Home low light.
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Deb Grabetz
Support Team
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Posted: Mon Jan 25th, 2010 13:57 |
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This weekend we went to see "Extraordinary Measures" starring Harrison Ford...it is a MUST SEE! As I sat in the theatre I thought of what possibilities lie ahead for the MP...now who would play Dr. M??!!!
Risky business: Harrison Ford takes a chance on new film
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Date: Saturday Jan. 23, 2010 11:19 AM ET
After four decades on the big screen and some 60 acting roles to his credit, Harrison Ford -- the living, breathing incarnation of action-heroes like Indiana Jones and Han Solo -- wants to have some fun.
"The fact that I'm known for something presents an opportunity and an obligation to become known for something else. That's what actors do," Ford told reporters during a promo-stop in Toronto for his new movie, "Extraordinary Measures."
What a stop it was.
Like the crackling snap of Indy's bullwhip something electric stirred the air on this occasion at Toronto's Hazelton Hotel.
Well-pressed doormen snapped to attention. Watchful PR reps patrolled the lobby.
Would anything less do with Ford in the building?
"Marry me Indy!" a passersby squealed.
Some hummed the "Raiders of the Lost Ark" theme song. Others tossed Han Solo one-liners from "Star Wars" ("It's not wise to upset a Wookie" sound familiar?).
But, in the suite that Ford shared with reporters, the 67-year-old Hollywood titan made one thing clear.
He's grateful for the attention. He's proud that his films that have earned more than US$6 billion at the worldwide box office. But, doing the same thing over and over again on screen "is no damn fun at all."
Ford is eager to take more risks
As part of his mission to shake up in his career, Ford signed on to play the fictional Dr. Robert Stonehill, the gruff medical hermit with heart in "Extraordinary Measures."
This is the first project produced by CBS Films, CBS's new movie division. It is based on the real-life story of John and Aileen Crowley (played by Brendan Fraser and Keri Russell).
Two of the couples' three young children have Pompe Disease. The rare genetic disorder causes a deadly enzyme deficiency in the body.
As the film opens daughter Megan (Meredith Droeger), one of the Crowley's afflicted kids, has turned eight.
It's a joyous event. But, the clock is ticking for this vivacious little girl. Megan has hit the life expectancy mark for Pompe patients. Death could come now at any time.
Determined to keep his child alive, John Crowley seeks out Stonehill, the Pompe research genius that Ford created based on several real-life figures.
Together they join forces to bring a cure to the market based on the curmudgeonly scientist's work.
"It seemed like a good idea for a movie to me," said Ford, who is also one of the film's producers.
Ford stumbled upon the biotech exec's tale six years ago in the Wall Street Journal.
Like most people, Ford knew little about this disease that affects 400,000 people in the developed world.
"I knew less than you," said Ford. "But, this was not the story of a disease. It was the story of adversity and one man's dominance of the situation he found himself in."
In Stonehill, a frustrated man who works, lives and even fishes alone, Ford netted an intriguing part to play.
Stonehill's interest in the disease is purely intellectual at the film's outset. In fact, interacting with Pompe patients "is not really high on his list of ambitions," Ford explained.
Crowley's arrival saves Stonehill from his academic dead end. It also tosses the recluse into a world of entrepreneurial science that he is ill-prepared to meet.
"Stonehill doesn't anticipate the reality of the world that he is going into," said Ford.
Suddenly budgets, deadlines, criticisms and second-guessing of his work "come dropping like a rock on his head."
Ford masters the language of science
In fact, it's hard not to squirm upon hearing one pharmaceutical executive ask what kind of mortality rate would to net their company a nice profit.
"The pharmaceutical business is an industry like any other," Ford told CTV.ca.
"You might decry the influence they have on our legislatures as a business. But, if it was your pension fund that invested in a pharmaceutical company you would want them to make a profit from your money," said Ford.
"That is the irony of it all," Ford added, his hazel gaze focused and intense.
"It would have been very easy to seize the bully pulpit and cast the pharmaceutical company as the villain of the piece. But, in fact, they are not. The villain of the piece is the disease. The villain is the ticking clock."
That reality, combined with an inspirational story, should be enough to entice Ford's fans into theatres once "Extraordinary Measures" opens on January 22.
This drama is light years away from "Star Wars" or Ford's uncredited screen debut as a bellhop in the 1966 film, "Dead Heat on a Merry-Go-Round."
But "Extraordinary Measures" has clearly cranked Ford's enthusiasm.
"A lot of people today want to manipulate rather than allow the audience to think and feel their way into the story. I didn't want to be in that kind of movie," said Ford.
This screen legend had his fun and walked away revved and amazed by Crowley's remarkable real-life children.
"When I looked into their eyes I saw two kids who had had a very difficult life, who were indomitable spirits, who faced life with humour and resolve. I found intact personalities despite weakened bodies," Ford told CTV.ca. "Their personalities were strong and singular," he smiled "They were terrific kids, both of them."
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Sarcoidosis/lungs, lymph,liver, GI, neuro, D12542, Ph17/07, MPh2 9/07, B12, cover up, NoIRs,return to work after 2 years off- 4/07D2511
5/09 D25<4
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marysue
Foundation Staff
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Posted: Thu Feb 4th, 2010 07:36 |
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Thanks for sharing Deb. I saw the trailer for this movie and also thought of the MP. I hope we get a chance to see it soon. Last summer we went to a movie and I had to wear both my 2%NoIR and fitovers plus earplugs.  Then over the holidays we went to one and I was fine with no fitovers and no earplugs. Yeah.
Marysue
P.S. I think Anthony Hopkins (?) could play Trevor. 
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CFS/FM '95; restrict light/D Oct08; 125D70 25D30 Feb09; Benicar26Apr09; NoIRs, low light, no sun; 25D=10 (Jun09); 25D=5 (Nov09) Marysue on Benicar
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Deb Grabetz
Support Team
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Posted: Thu Feb 4th, 2010 13:56 |
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Marysue,
That is truly progress...and measurable! You must feel wonderful about this!
Back in 1990 I had the sensitive ear thing going on for about five years. I was undiagnosed back then, to say the least, that WAS living hell during those years. The slightest noise would make my head spin and as I now understand, it was my sarc affecting the nerves. Of course no doctor could explain it and well, it is a tough thing to explain to anyone isn't it?!
So happy to hear that you were able to enjoy the movies---ahhh what some take for granted Because I am still light sensitive, I wear my 40% in the movies...but that is a huge improvement from the fitovers also. I just always figure someone will think I'm a movie star, incognito, in my small town...yeah, we see a lot of movie stars here (lol)!
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Sarcoidosis/lungs, lymph,liver, GI, neuro, D12542, Ph17/07, MPh2 9/07, B12, cover up, NoIRs,return to work after 2 years off- 4/07D2511
5/09 D25<4
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marysue
Foundation Staff
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Posted: Thu Feb 4th, 2010 19:11 |
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It's funny how I never feel weird wearing sunglasses at the movie theatre--must be the whole movie star vibe! And yes, I'm happy with my progress. I've had a lot of improvement in my CNS and I don't feel any "nerve stress" anymore. So, maybe that's why I'm OK without earplugs now. I'll bet I'd still need them though if it was a loud action movie--so I'll stick to lighter comedy/drama type films for now.
Marysue
P.S. OK, maybe someone should write the screenplay first....but then we can start casting!!
Here's Anthony Hopkins and Trevor Marshall.
 
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CFS/FM '95; restrict light/D Oct08; 125D70 25D30 Feb09; Benicar26Apr09; NoIRs, low light, no sun; 25D=10 (Jun09); 25D=5 (Nov09) Marysue on Benicar
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Deb Grabetz
Support Team
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Posted: Thu Feb 4th, 2010 21:35 |
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| marysue... Yup I think you've got it! Let's see what Trevor thinks???!
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Sarcoidosis/lungs, lymph,liver, GI, neuro, D12542, Ph17/07, MPh2 9/07, B12, cover up, NoIRs,return to work after 2 years off- 4/07D2511
5/09 D25<4
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