Perseverance = Real Heros: 173 stories
Dr. Timothy L. Vollmer
Chairman, Division of Barrow Neurology

Director, Barrow NeuroImmunology Program

Barrow Neurological Institute
St. Joseph's Hospital and Medical Center
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Timothy L. Vollmer M.D.
Director, Barrow NeuroImmunology Program
Barrow Neurological Institute
St. Joseph's Hospital and Medical Center


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Beverly Dean

"I've had MS for 2 years...this is the most important advice you'll ever hear."
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Multiple Sclerosis Research
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Friday

 

FRANCINE...OUR FRIEND FROM THE PHILLIPINES




















Hi Stan... =)


My name is Francine Drilon and I’m a 32 year old kindergarten teacher
In 2003, I was diagnosed with Multiple Sclerosis. I want to thank you profusely, for allowing me to join this group. I’m from the Philippines and we don’t have a lot of information about MS in my country. Whatever I’ve learned about MS, I’ve gotten from my doctors and the internet. As far as I know, we only have one MS support group. I’ve called them twice, and I was told that this small group meets once a month to socialize. There is no information dissemination of any kind, no networking or actual “support”.

I look forward to reading the blogs and articles even though most, if not all, the (new) medication and therapies (sometimes discussed), are not available here.


My battle with MS started with a sore pain in my wrists. I thought it was because I was spending too much time on the computer. The pain didn’t improve and I was beginning to worry. I thought it was Carpal Tunnel Syndrome. After a few days, I started experiencing the same pain on both feet. I was beginning to limp and that’s when I knew I needed to see a doctor. I went to Saint Luke’s Medical Center. After a few minutes of the usual Q&A with the doctor, she said I needed to see a neurologist. I thought, “What?!?! A neuro?! Isn’t that a brain doctor??! I need a brain doctor for sore wrists and a limp?! What’s going on?!”
I made an appointment with the neuro and saw him the next day. He asked me more questions and gave me a long list of tests I needed to go through. He said he would wait for the results the same afternoon, and then decide whether I needed to be confined. I said to myself, “Ok, let’s do the bloody tests and get this over with!” I was in pain and the pins and needles sensation was beginning to advance towards my legs.
The tests consisted of needle poking and what seemed like electric shock treatment! It was agonizing. I have a high tolerance for pain, but this was almost unbearable. I was OK with the whole idea of having needles injected all over my body, but I couldn’t bear the doctor’s hand on my skin. The slightest touch felt like I was being burned alive. There came a point when they needed to insert needles in my spine, but they hesitated because they knew I would shudder as soon as the doctors touched me. They said they had no choice but to attempt to insert the needle without touching any part of my skin. “Attempt?!” I, of course, dreaded the thought that they would miss and leave me a veggie. Needless to say, I survived that ordeal. The tests were over, but I was still in pain... After half an hour from the last needle poking, the doctor said I couldn’t go home yet. “Oh brother! What now?!?!” I had to be confined and more tests followed. The pain was up to my chest in a matter of hours. I got progressively worse. My hands and arms... my feet...legs... chest... and neck, all hurt like *#&$@#! I had difficulty breathing. It felt like I had a belt tightly wrapped around my chest. I couldn’t move from the neck down! Several neurologists and neuro-surgeons came to see me. They said I had a demyelinating disease. I asked them to pretend that I was a 5 year old and explain to me what exactly that meant. I was told that the myelin sheaths of my nerves were depleting. ”Hmm... How did that happen?” I had to undergo 3 MRI scans and more tests. I couldn’t walk. I couldn’t write or eat on my own. They said that I was hypersensitive, which explained why I physically ached when people spoke louder than a whisper. I ached when the lights were on. I was sensitive to touch, sight, and sound. “Wow! I had super powers!” If I didn’t experience pain, I could be related to superman!

After being hospitalized, a lot of steroids and a dozen other meds, I was finally released. Now I had to get Physical and Occupational therapy! I had to learn how to walk again. I had to learn how to write, feed myself, button my shirt, comb my hair, and do all the basic everyday functions I took for granted. They said I had to desensitize my nerves. I had to retrain my brain and convince it that all these actions were not harmful... not painful. My therapist would say, “Tell your brain... to tell your arm... to tell your hand ... to move this marble.” There was a moment when I thought, “Didn’t I see this in the movie Lorenzo’s Oil?!?!”
They made me dip my hands in warm paraffin wax, move items from one tray to another, practice with a pen, a spoon, a comb... They even made me dip my hands in a pail full of sand. They hid tiny objects in the sand and then showed me pictures of each object they wanted me to find (using my hands). I must tell you that that was difficult and excruciatingly painful. I cried because of the pain. I cried because I couldn’t believe that looking for a small car in a bucket of sand would be so hard. I felt so useless and helpless.
I had to stop working for six months and focus on getting better. I felt dizzy and weak. I experienced chronic fatigue. I had to sit on a chair in the shower while my mom bathed me. I couldn’t even shampoo my own hair! I needed a wheelchair, so working or going out with friends were totally out of the question. I stayed home, went to the hospital, and went back home. I suffered from insomnia. I couldn’t sleep and I stayed up till six or seven in the morning. I was hurting, frustrated, lonely, bored, angry, and depressed. The doctor told me early on, that there is such a thing as MS depression. They said it is due to the “unpredictability of the disease.“ I thought maybe, compared to cancer, with which we are more familiar with the stages and what to expect, MS is far different. We can be OK today... and then totally helpless tomorrow.

As soon as I started walking on my own, thanks to the steroids, I went back to work. Still feeling the pins and needles, still feeling weak and sore, I was determined to go back to my job and my students. Since there are no visual symptoms of MS, it was difficult to explain to people what I was going through. I was sick of answering the same questions about what was going on with me. I was tired of hearing, “Really? But you don’t look sick.” I wanted to say, “Do I need to lose my hair? Lose an eye? Lose weight? Gain weight? Sever an artery perhaps? ... just so you believe that I’m suffering from a progressive disease?” But I always ended up saying, “Well, what you see and how I feel are two different things.”


I worked from October till March of 2003. I suffered another attack come April, and then I was back in the hospital. Three more MRI scans and a couple of second opinions later, I was diagnosed with Multiple Sclerosis. They found lesions in my spinal cord. The doctors said that I should not take it lightly. “There is no known cure for MS”, he said. “The medication is given to address the symptoms, nothing more.” I took medicine for pain, nausea, insomnia, and even meds for epilepsy. My doctors suggested that I quit my job and consider a change of lifestyle. I needed to avoid stress. And since I live in a tropical country, the heat exacerbated my condition. They told me that I should consider moving to a colder part of the Philippines or another country.


As much as I wanted to give everything up... I could not. I told my doctor I couldn’t quit my job because I had no way of paying his doctor’s fee! I wouldn’t be able to buy my medication or pay for my other bills. “God! I would love to focus on myself for a change... but I can’t do that right now.” I did not have medical insurance, and it seemed as though I could only file for disability benefits with Social Security if I lost my head! We don’t get disability benefits that easily here. As long as you can stand, walk, BREATHE... you don’t get anything! I really had no other options but to teach again .


It is now 2006... And yes, you guessed it, I’m back to work. I teach 2 major subjects and 3 minor ones. At this point, I'm taking neuropathic anti-convulsants and morphine every 4 hours. I also take medication for my nausea and really strong sleeping pills prescribed to patients with Schizophrenia. I could be a stock holder of our local drug store! Hahaha! My neurologist and Pain Management doctor still suggest that I stop teaching and finally move to a colder climate or maybe look into a program for MS patients in the States. The heat weakens me and dealing with the pain and chronic fatigue is difficult. I'm still trying to improve my penmanship, but my walking has greatly improved. Each day can be agonizing. In fact, typing this letter is making my fingers sore. But, it’s nothing I can’t handle. I will not be defeated by this. I refuse to give up on living my life the best way I know how.


My father taught me, that in life, it is essential to make peace with one’s pain. I agree with my dad. I have made peace with the physical and emotional pain MS has given me. After reflecting on my own mortality, I have found many things to smile about each day. I find joy in seeing my friends every single week. I embrace each time they come to visit me for coffee laced with meaningful conversation. I treasure DVD marathons with my mom... and singing with my dad... or receiving little notes from my students. I value my alone time, which is when I can read about Gustav Klimt... watch the moon rise... paint pictures... listen to cello music or India Arie. I look forward to corny television shows and even pathetic ones! I can’t wait to take long baths... wash my hair... and button my shirt (even if it’s painful and tiring)... I get excited when I teach my Reading class. I get even more excited when I start preparing elaborate lessons about Henri Matisse for my Art class! I’m in pain... but I’m alive!


I have basic medical insurance now. Unfortunately, it doesn’t cover any of my medication or major medical exams. It only offers free hospitalization, if and when I need it. It doesn’t even pay for my visits to the doctor. I still have no disability benefits from the government. I still suffer from fatigue everyday, especially when it’s hot. I still feel the pain in my entire body. I get nauseated easily. My vision is getting hazy. My short term memory is starting to fail me. I still have those involuntary twitches which causes my hand to launch my spoon or pen into outer space! I still can’t sleep. It’s three in the morning now. But despite all of these and more, I continue to EMBRACE LIFE. I want to be the best daughter, friend, teacher, girlfriend.......and LOVE LIFE AS MUCH AS I CAN, FOR AS LONG AS I CAN.
After all, having this disease is NOT A DEATH SENTENCE... It’s simply LIFE MODIFIED. Thank you again, for letting me join your MySpace group. You have no idea how much you have helped me.
God’s choicest blessings to you... today and always... – Francine


Wednesday

 

PERSEVERANCE=Real Heros: Trauma Center Nurse Kim Womack
“My diagnosis 4 years ago has to catch up with me,” she says. “I have MS. I’m not disabled. I’m intelligent and upbeat and by the way, I have MS.”

 
Richard Cohen explained he discovered a trend that became a power influence in his life: People afflicted with MS want to talk to people in the same boat..."The Waterbury Connecticut Newspaper"
Cohen, who wrote a best-selling book about his struggles with the disease, at home and at work, explained he discovered a trend that became a power influence in his life: People afflicted with MS want to talk to people in the same boat.

"It's positive reinforcement no matter where you look," said Canton resident Zimmerman, bracing herself with a wooden cane as women rolled by in wheelchairs. "We all have the same diagnosis, but we each have our own disease."..MORE: "The Waterbury Connecticut Newspaper".

 
PERSEVERANCE: BREEDERS CUP WIN! McLaughlin on his battle with MS: "
'Well, I feel like I'm very lucky. I'm one of the lucky ones with MS . I'm able to keep going on a regular basis. I don't walk as well as I used to, but this is the best medication you could have, winning a $5
million race.

But MS has entered my life and I've handled it the best that I can. I'm lucky I have a great team of people with me and a support group in my wife and kids and family.'"....MORE:

 
GREAT STORY OF PERSEVERANCE: Thousands Running In NYC Marathon Sunday...PLUS a woman known as the world's slowest marathoner
Competing alongside some of the world’s greatest athletes, such as former Tour de France champion Lance Armstrong, will be a woman known as the world's slowest marathoner.

Koplowitz, who is afflicted with multiple sclerosis, has participated in 20 marathons, 18 of them in New York City.

Her projected finish time: about 28 hours.

Koplowitz intends to get a head start Sunday by beginning around 5 a.m., and she expects to finish between 9 a.m. and 11 a.m. Monday.
Friends and family will help her along the way as she walks the course.
Members of the New York City chapter of the National Multiple Sclerosis Society are planning to greet Koplowitz at the finish line.... MORE ON WNBC

 
Trey Fortner and Potter are part of Shannon Hoelzel’s strong support group as she fights multiple sclerosis with a positive attitude
PERSEVERANCE=Real Heros: Meeting one of life's big challenges
"At first Shannon Hoelzel just felt tired. Really tired. The kind of tired that doesn't go away, not even with eight hours of sleep. Next she started to get migraines and then her vision started to blur and double, even when she didn't have a headache.

Not knowing what was wrong or not being taken seriously when she knew something was wrong was even harder than hearing the diagnosis: multiple schlerosis.

Hoelzel, 27, who grew up in Plymouth and graduated from Armstrong High School, was diagnosed two years ago. When doctors gave her a MRI and found lesions indicative of MS, they followed with a spinal tap. Other possible illnesses, such as lupus, were ruled out, and doctors said her symptoms were indicative of MS. That day, Dec. 22, 2004, is etched in Hoelzel's memory.

"It is not really what I asked Santa for, but it was a relief," she said.

Now taking medications to help her deal with the illness, Hoelzel's naturally optimistic outlook is back in full force. She's working, and she's making plans to get the degree she didn't complete before, when fatigue sidelined her plans.

Hoelzel also is trying to lead others with MS into taking a positive approach to their illness and to take care of themselves.

"Every day is a new experience," she said. "Of course, I have my 'down' days. I find brownies and ice cream take care of them."

As a person with MS, Hoelzel needs to have an annual MRI. She also needs to keep stress down and make sure she gets enough rest.

"I'm blessed I don't have walking problems," she said. "Everybody has their burdens to bear, and everybody needs some support.

"I had to try so hard not to hold life by the throat. I had to realize the only thing I can control any more is my reaction and my perspective. I leave the rest to God."

When Hoelzel was diagnosed, she didn't know anyone her age with MS. That has changed.

"There's an instant connection," she said. "They understand what you're going through. They are people I wouldn't have met if I didn't have MS. Being able to represent them in the media is so great."



There are 400,000 diagnosed cases of MS in the U.S., and 7,500 in Minnesota and western Wisconsin alone, Hoelzel said.

Instead of sitting home feeling sorry for herself, Hoelzel believes in making plans for the future and setting goals for herself. Some goals are simply fun ones, such as hiking in the Grand Canyon this summer, and others involve life changes, such as going back to school.

"As my dad says, 'Whether you think you can or can't, you're right about it,'" she said. "Everybody has a burden. Nobody would know mine is MS."

Hoelzel is doing what she can to educate the public about MS, and she is working to raise funds to finance research that will some day lead to a cure for the elusive illness.
"

Tuesday

 

PERSEVERANCE=Real Heros: CEO Rick Baldini will not let MS stop him....:
"...While the severity of the symptoms varies from person to person, Baldini said he has managed to stay almost symptom-free for the past six years with a combination of medication, acupuncture, massage therapy and yoga. He learned of the diagnosis in 2000, and at first experienced some numbness, tingling in his limbs and some loss of balance.

Baldini said yoga has been critical in regaining his balance, strength and agility and also credits a strong will and desire to overcome adversity in meeting the challenge of living with MS.

'A positive attitude,' Baldini said, 'there's no way to scientifically prove it, but I think it definitely helps.....'"

 

PERSEVERANCE=Real Heros: Shirley Armstrong overcomes MS to win blue ribbon
Shirley Armstrong of Rancho Bernardo shows off her winning watercolor, ‘Leo,’ which helped earn her a best of show honor at this year’s San Diego County Fair....

Shirley Patrick Anderson has multiple sclerosis, a neurological disorder that changed her life, put her in a wheelchair and almost robbed her of a cherished pastime — creating animals in watercolors.
Like others with MS, Anderson found a way to cope with the symptoms and move past them. After she lost the feeling in her right hand and arm, it looked like her ambition to become a better watercolorist was doomed.

But, she worked diligently to retrain herself to be a left-handed artist.

It was fairly frustrating to make that transition, but she eventually got the hang of it and now produces stunning, blue-ribbon art.

Winning “best in show” in the student division at the San Diego County Fair this year is turning out to be a personal testament to the ultimate goal of not giving up and moving past obstacles, Anderson said.
Her entry, a regal lion — resplendent in golden colors, some orange and browns — is aptly named “Leo,” a contribution her husband, Andy, helped provide.

The fair’s judges had no idea that Anderson is confined to a wheelchair with MS, said her art teacher Jenny Leeg. And that’s the way it should be: judge the art, not the artist.

“She didn’t win because she has MS,” Leeg said. “Her art was selected because it speaks for itself — and her ability.”

Art allows Anderson to release something of her inner self and show others her abilities, while she stretches beyond her physical limitations, Leeg said.

If nothing else, Anderson’s outgoing, positive personality is demonstrated in her brush strokes.

Leeg has observed the effect that Anderson has on her fellow art students during classes, which are hosted by Palomar College at Joslyn Senior Center in Rancho Bernardo.

“She’s inspirational to all of us,” Leeg said. “She’s always smiling and never seems to have a bad day.”

Leeg has been teaching that particular class for six years, five of which Anderson has been a student.

The camaraderie that has developed during class time, has expanded outside the center with students meeting for lunch and other social activities.

At least four students have become close friends with Anderson, sometimes volunteering to meet at her home to massage her legs so muscles will get the workout they need, she said.

 
PERSEVERANCE=A Real Hero: Lauren Zaccaro...working on a NASA project:
"To look at her, you would never guess she has been drafted into a fierce battle for which no one would volunteer - a battle where health, well being and independence are at stake. Young, attractive, fit and a successful engineer, Lauren Zaccaro hardly fits the typical description of a woman living with chronic illness. The five-foot, seven-inch blonde looks more like a competitive athlete than someone battling daily the potentially debilitating effects of multiple sclerosis (MS).

Two years ago, while still enrolled at the University of Hartford, Zaccaro, now a systems engineer with Hamilton Sundstrand Space Systems, began experiencing difficulties with her vision. In the midst of finals she noticed an annoying spot in her right eye.

"I thought something had gotten on my contact," said the Ledyard, Conn. native who now lives in Colchester, Conn. "I went back to my dorm room, removed my contacts only to discover the blur spot was still there."

Zaccaro scheduled an appointment with her optometrist, who upon examination referred her to a neurologist. A series of tests, including a painful spinal tap, confirmed she had multiple sclerosis.

"Although initially I was somewhat shocked at the diagnosis, I'm thankful that I'm not facing something even worse," said Zaccaro, who is currently working on a NASA project to remove water and carbon dioxide from the air while maintaining proper cabin pressure and temperature for astronauts in space on a future space vehicle. "I feel fortunate. The effects of multiple sclerosis aren't keeping me from pursuing my dreams or keeping me from enjoying my favorite activities."

Despite symptoms that include ongoing vision problems, occasional leg and arm pain and some numbness and tingling in her extremities, Zaccaro, determined to fight back, signed up in the summer of 2005 to cycle in the National MS Society, Greater Connecticut Chapter Mohegan Sun MS Bike Tour - a two-day tour winding through southeastern Connecticut's breathtaking shoreline and blossom-covered countryside.

Zaccaro, who could have chosen to cycle as few as 50 miles over two days, successfully completed a 150-mile route. If that wasn't enough of a feat, particularly for someone warring with the unpredictable effects of multiple sclerosis, Zaccaro went on to raise an amazing $10,000, making her the event's top fundraiser.

"Lauren inspires me and many others with the courage she possesses in the face of adversity and her understanding that even she alone can make a significant difference in the fight against multiple sclerosis," said Amanda Saccuzzo, development coordinator and event coordinator. "Lauren's willingness to step out and speak up and her fundraising efforts are going far to help bring us close to finding a cause and a cure for what has proven to be a formidable foe - multiple sclerosis. Her confidence and optimism is contagious.""MORE