Being the first celebrity to come out publicly with news of her disease, m.s., Annette Funicello became the face of this terrible disease for millions of her fans. Her story of living with m.s. is not an uplifting one. She has the thing most ms'ers dread - " the most severe form of the disease and over the years lost her ability to walk, relying first on a cane, then on a wheelchair." And it only got worse.
Watching her struggle verges on being sensationalistic although it sheds light on the need for a cure and there is a research fund in her name to raise money.
This blog has no affiliation with the research fund or A. Funicello and merely reports on developments in the M. S. world. We try to keep a positive tone and to offer ways of coping with the symptoms of m.s. in the most effective way.The use of Ms. Funicello's name is fine by me. On the other hand, the images are far too graphic and intrusive for my sensibilities and will probably offend some people. But the people closest to her have made the judgement that this harsh realism will help raise funds to aid in finding a cure.
Annette Funicello Interviewed On Television Program
From A 1980's TV Program
When Annette Funicello debuted on a new children’s variety TV show called the Mickey Mouse Club, she was a shy 12-year-old girl -- an unknown with big brown eyes and a sweet smile.
But the Mickey Mouse Club quickly became a television megahit and the girl known simply as “Annette” became the most popular “Mouseketeer” on the show, attracting fans all around the world.
She developed into a stunning young woman, starring in several iconic, beach movies with teen heartthrob Frankie Avalon.
Annette Funicello: Her life with multiple sclerosis
But in 1992 at age 50, Annette went public with devastating news -- she had multiple sclerosis, a debilitating neurological disorder.
She had the most severe form of the disease and over the years lost her ability to walk, relying first on a cane, then on a wheelchair.
The singer and actress eventually lost her ability to talk and Annette faded from public view.
Annette Funicello's husband Glen Holt is now her primary caregiver. Annette receives around-the-clock care, is fed through a tube and must be carried from her bed to her wheelchair.
Now in a world exclusive Annette is back in the public eye. Glen Holt, her husband, invited W5 into their home to show the devastating effects of chronic progressive multiple sclerosis and to talk about his 25-year quest to find a treatment to help his wife.
Her long-term friend Shelley Fabares says seeing Annette today will be shocking to some but necessary to truly understand the effects of her illness.
“There are some people who will think she must be preserved in people’s minds exactly as she was. But exactly who she was is not who she is now,” she explains. “In order to get people to understand the ravages of this disease and what happens…there is no better way.”
Despite her condition Glen never gave up hope that Annette would improve one day.
He spent 25 years trying various experimental treatments -- a surgery to implant electrodes in her brain to control her tremors, even an experimental drug that sent Annette into ICU for eight days. But nothing helped.
Glen figured if CCSVI could make one small bit of difference it was worth a shot.
Glen took Annette to Dr. Donald Ponec, an interventional radiologist at Tri City Hospital in Oceanside, Calif., who had some experience with the new therapy.
Dr. Ponec conducted a study published in August in the Journal of Vascular and Interventional Radiology that followed 259 patients with MS. The researchers used balloons to open up their narrowed veins. After six months, 53.6 per cent of the patients reported improvements in MS symptoms.
In September 2011 at a private clinic, Dr. Ponec tested Annette and found her results fit the new theory. She had a blocked right jugular vein with only 30 per cent blood flow. Her left vein was completely blocked. The blood was flowing back into her brain.
There was no proof that the treatment would even improve her condition but Glen asked doctors to try.
“I saw in front of my eyes things changed -- the glow of her face came in,” he says.
But Glen says there was another noticeable improvement. Patients with MS often have problems swallowing because of damage to parts of their brain, causing them to sometimes choke on their own saliva.
Before the treatment Glen says he would be awake several hours through the night to suction saliva from Annette’s mouth so she would not suffocate. Now she can get through the night without his help.
But Annette’s doctor Dr. Jeffrey Salberg says Annette’s improvements may be in the eye of the beholder.
“ ... remember she has had this damage for a long, long time and it has done terrible things to her nervous system and that damage cannot be undone," said Dr. Salberg.
"You have a scarred, injured brain, how much does venous flow change the function of what is left? I don`t see tremendous changes, said Dr. Salzberg.
"But Glen sees little changes and I`m hoping that`s real for him and for her and gives them some sense that it was worth doing." said Salzberg.
Glen decided to go public with their story.
Glen believes Annette`s loyal fans will send money to the Annette Funicello Foundation for Neurological Disease for new CCSVI research and how blood flow impacts other brain diseases.
"He wants to use her fame and popularity to move things in a new direction,” said Dr. David Hubbard, a neurologist who sits on the board of Annette`s foundation.
CCSVI Research slowed to a crawl after the U.S. Food and Drug Administration FDA issued a warning about the treatment in May, stating "there is no reliable evidence ....this procedure is effective in treating MS" and the procedure using balloons to open up veins "poses a risk to patients" and researchers who want to study CCSVI must get FDA approval.
But Dr. Ponec believes the CCSVI theory raises important questions and says funding more research is the only way to find out if CCSVI treatment can help MS patients.
Until there is a proper clinical trial that answers the question once and for all -- the debate will rage on, he insists.
For more information on the Annette Funicello Foundation, visit:
http://www.annetteconnection.com/About-the-Research-Fund.php
http://www.facebook.com/AnnetteFund
Read more: http://www.ctvnews.ca/w5/annette-funicello-her-life-with-multiple-sclerosis-1.984202#ixzz2KogR3Omw
Source:
Annette Funicello: Her life with multiple sclerosis
http://www.ctvnews.ca/w5/annette-funicello-her-life-with-multiple-sclerosis-1.984202
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