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PITTSBURG —
At first Robin Creemer, Joplin, didn’t think she could make it to Pittsburg Sunday to speak to the Bike the US for MS group that was stopping for the night before continuing its cross-country journey.
After all, she underwent her 10th back surgery on June 21 and got out of the hospital on Friday. But, with the help of a friend to drive her over, the advocate and motivational speaker made it.
“I am here tonight because of all of you,” she told the 20 cyclists. “Today I am standing taller than I have stood in the past five years.”
That she’s standing at all is a combination of miracle and modern medicine. In 1985, doctors at Mayo Clinic discovered why Creemer, an RN, had been experiencing periods of total blindness, lack of coordination, weakness, stumbling and fatigue for 10 years.
They told her that she had multiple sclerosis.
“In 1985 I was 31, director of nurses at a hospital, the mother of three little girls and an avid snow skier,” she said.
For her first 15 years with the disease, the only treatment available were steroids, which had life-threatening side effects. Then it was learned that a process called plasmapheresis could be used during MS flare-ups, called exacerbations, instead of steroids.
“By 1993 I was legally blind, deaf and numb from head to toe. I also could not smell or taste,” Creemer said. “MS had robbed me of my five senses. That same year, the first disease-modifying drug was introduced. It does not cure, but it does reduce the exacerbations.”
This was vital, because the doctors had told her that, at the rate her disease was progressing, she would soon lose her ability to walk.
“They told me that I would never be able to hold my grandbabies,” Creemer said.
The new drug slowed her MS down by 75 percent.
“Instead of having four exacerbations a year I dropped down to having only one,” she said.
In 1996 came another advance that treated the spasticity which is a common symptom of MS.
“I was stiff as a board,” Creemer said. “Now I have a pump implanted around my spinal cord that drips medication and allows me to move. I’m not Speedy Gonzales, but I’m moving. This treatment has allowed me to shed the heavy leg braces I had worn and use the wheelchair as an accessory, not a necessity.”
MS also paralyzed her vocal cords, but the doctors made new ones of gortex grafts.
At first Robin Creemer, Joplin, didn’t think she could make it to Pittsburg Sunday to speak to the Bike the US for MS group that was stopping for the night before continuing its cross-country journey.
After all, she underwent her 10th back surgery on June 21 and got out of the hospital on Friday. But, with the help of a friend to drive her over, the advocate and motivational speaker made it.
“I am here tonight because of all of you,” she told the 20 cyclists. “Today I am standing taller than I have stood in the past five years.”
That she’s standing at all is a combination of miracle and modern medicine. In 1985, doctors at Mayo Clinic discovered why Creemer, an RN, had been experiencing periods of total blindness, lack of coordination, weakness, stumbling and fatigue for 10 years.
They told her that she had multiple sclerosis.
“In 1985 I was 31, director of nurses at a hospital, the mother of three little girls and an avid snow skier,” she said.
For her first 15 years with the disease, the only treatment available were steroids, which had life-threatening side effects. Then it was learned that a process called plasmapheresis could be used during MS flare-ups, called exacerbations, instead of steroids.
“By 1993 I was legally blind, deaf and numb from head to toe. I also could not smell or taste,” Creemer said. “MS had robbed me of my five senses. That same year, the first disease-modifying drug was introduced. It does not cure, but it does reduce the exacerbations.”
This was vital, because the doctors had told her that, at the rate her disease was progressing, she would soon lose her ability to walk.
“They told me that I would never be able to hold my grandbabies,” Creemer said.
The new drug slowed her MS down by 75 percent.
“Instead of having four exacerbations a year I dropped down to having only one,” she said.
In 1996 came another advance that treated the spasticity which is a common symptom of MS.
“I was stiff as a board,” Creemer said. “Now I have a pump implanted around my spinal cord that drips medication and allows me to move. I’m not Speedy Gonzales, but I’m moving. This treatment has allowed me to shed the heavy leg braces I had worn and use the wheelchair as an accessory, not a necessity.”
MS also paralyzed her vocal cords, but the doctors made new ones of gortex grafts.
“I’m thankful I have a voice,” Creemer said. “I can’t sing a note, but I couldn’t sing even before I had MS.”
She showed the group her Olympic torch from the January 2002 Olympics in Salt Lake City. Creemer was one of 285,000 persons nominated to carry the torch a small portion of the way, and one of 11,500 selected for the honor.
“This was in August 2001, then 9/11 happened,” she said. “It was up in the air whether we would even have the Olympics. Then, four days after 9/11, my husband, Lee, died. In two years I had lost my husband, mother, father and brother. Life became a blur.”
But the Olympics were held, and Creemer carried her torch under the St. Louis Arch.
“The journey of the torch was an overview of a much greater journey, that of my life with MS,” she said.
Creemer gives the riders special presents each time she sees them. Past presents have included handmade lace angels, because the riders are the angels in her life.
She was working in her sewing room on this year’s gifts on May 22 when the Joplin tornado struck. Because of her hearing loss, she was unaware of the situation until Tootsie Roll, her service dog, alerted her.
“Tootsie goes everywhere with me, and alerts me if the telephone rings or there’s somebody at the door,” Creemer said. “This time she was just going crazy. When I understood what was going on, I took her and we went into a closet.”
She apologized to the riders because their gifts were not completed, and took their names and addresses so she could mail them. Creemer wants the riders never to forget how much good they are doing for her and the others with MS with the money they raise for research and treatment.
“This is what your money is paying for,” she said. “I have not only held all seven of my grandbabies, but I am an active part of their lives. You have given them a grandma.”
