Wednesday, 14 May 2008

Steps To An Abundant Life...

"You can't wait for inspiration. You have to go after it with a club."

"Friends are born, not made."

"Friendship improves happiness, and abates misery, by doubling our joys, and dividing our grief."

"You can have anything you want--if you want it badly enough. You can be anything you want to be, do anything you set out to accomplish if you hold to that desire with singleness of purpose."

"There is no such thing as can't, only won't. If you're qualified, all it takes is a burning desire to accomplish, to make a change. Go forward, go backward. Whatever it takes! But you can't blame other people or society in general. It all comes from your mind. When we do the impossible we realize we are special people."

"Optimism is essential to achievement and it is also the foundation of courage and true progress."

Tuesday, 13 May 2008

Teen hopes treatment will help disease (RSD)

The shelves on the wall of 17-year-old Melissa McCormick's bedroom boast dozens of trophies, ribbons, and medals a testament to her athletic ability.

But Melissa, who was once on her way to an athletic scholarship, is now confined to a wheelchair. The Deptford Township resident was diagnosed with Reflex Sympathetic Dystrophy (RSD) late last year.

RSD is a progressive disease of the autonomic nervous system that causes severe pain, described as a "burning pain," swelling, discoloration of the skin, and other symptoms.

For Melissa, it started last November with a pain in her arm, and then spread to her leg.

After Melissa was finally diagnosed doctors were initially stumped as to what was wrong she was put on pain medication and started a physical therapy regime. But things only got worse.

"It got to the point where I couldn't walk at all," Melissa said.

Meanwhile, the Gloucester Catholic High School student was still going to school, determined to finish out her senior year.

"I just wanted to have fun with everyone else," she said.

Then in April, the pain became so intense that she had to stop going to school.

"The pain was unbearable," she said. "I couldn't do it."

Now Melissa is preparing for a treatment conducted by Dr. Philip Getson, a family physician based in Medford who specializes in the treatment of RSD.

Getson, who said he sees about eight to 10 RSD patients a day, uses Ketamine, an anesthetic, to treat the portion of the brain that appears to be malfunctioning.

Typically, patients are treated with the Ketamine 10 consecutive days for five hours each day. Then the treatment is reduced over a period of time.

The McCormick family believes this is the treatment that will work for Melissa.

"I'm worried, but I'm to the point where I don't care I just want to walk," Melissa said.
And, according to Getson, there's a good chance it will.

"Eighty-five percent of the people that I have treated since 2004 with Ketamine have improved," he said. "There are varying degrees of improvement, but improved."

Melissa's father, Mike McCormick, expects "to go to battle" to get his health insurance to cover the treatment, which he said can cost about $1,400 per day.

To help the McCormicks pay for the treatment and Melissa's numerous medical bills, Melissa's friend of six years, Dan Glassman, has started a fund-raising campaign called "Putting out the Flame." For more information, visit

Thursday, 1 May 2008

Things I try to remember...

A true friend is someone who reaches for your hand and touches your heart

Most of today's worries are like puddles: tomorrow they will have evaporated

Gratitude unlocks the fullness of life and your relationships.

Be grateful for all the people who show up in your life

Shoot for the moon; even if you miss you'll land among the stars

You cannot prevent the birds of sorrow from flying over your head, but you can prevent them from building nests in your hair

Kind words can be short and easy to speak, but their echoes are truly endless

Many people die with their music still in them. Why is this so? Too often it is because they are always getting ready to live. Before they know it, time runs out Oliver Wendell Holmes, Jr. Stick to it

When things go wrong as they sometimes will,
When the road you're trudging seems all uphill.
When the funds are low and the debts are high, And you want to smile but you have to sigh. When care is pressing you down a bit, Rest if you must, but don't you quit.

Life is queer with its twists and turns, As everyone of us sometimes learns.
And many a fellow turns about, When he might have won had he stuck it out.
Don't give up though the pace seems slow, You may succeed with another blow.

Often the goal is nearer than It seems to a faint and faltering man.
Often the struggler has given up, When he might have captured the victor's cup.
And he learned too late when the night came down, How close he was to the golden crown.

Success is failure turned inside out, The silver tint of the clouds of doubt.
And you never can tell how close you are, It may be near when it seems afar.
So stick to the fight when you're hardest hit, It's when things seem worst that you mustn't quit.

I hope you all enjoy it - the first one really got me thinking.

Sunday, 27 April 2008

RSD self help tips...

A) Be an active partner of the Dr.(s) in charge of your health-care. Write down any questions you have ahead of time, since short-term memory problems are common with RSDS. Always be willing to learn from your Dr. and share with them new information on RSDS as you receive it. Try to take someone into the office with you to help you remember what went on there.
B) Follow your Drs. advice on medications, exercise, rest, etc.
C) Know the medications you are taking and their side effects (if you are not sure then review them with your Pharmacist).Protect yourself, and your stomach, by eating properly.
D) Exercise regularly to keep joints flexible, muscles strong, and to maintain a range of motion in all of your limbs, RSDS affected or not.
E) Use good posture when you are sitting, get up and stretch when you need to. Don‘t over-do. Balance your workload.
F) Be kind to yourself.
G) Keep a journal. This becomes especially helpful for your Dr. and/or SSD/WC and other Drs. and other officials to show what you can and can‘t do on a regular/daily basis. It is also a good source of information to others whom you wish to share your story with.
H) Understand that some of your friends may drop off along the way or have a difficult time understanding and coping with your disease. This is not because you suddenly have become a bad person. Try sharing some basic information with them about RSDS and let them know it is ok to talk about it or not talk about it; that you are still the same person underneath.
I) Involve yourself in a support system such as an RSD Discussion Group, or local RSD/Pain Support Group. Take advantage of it as well as becoming a vital part of it. Help yourself by helping others and getting the word out.
J) Get a Medic Alert tag (1-800-432-5378) to alert Drs. and others to the fact that you have RSD and are on medications !!!
K) Become involved with the Internet Programs available such as Listservs and ChatRooms. These will help you learn about your disease as well as help others by sharing your story. If you don‘t have your own computer, try your local library.

Rocking out to raise money for RSD research...

One of the most painful experiences for Ashley Goodall is when a person walks by.
The 16-year-old high school student from Bakersfield was diagnosed with a condition called Reflex Sympathetic Dystrophy Syndrome (RSD) when she was 8, and faces constant pain from stimuli as small as the breeze created by a person walking past her.
RSD, also known as complex regional pain syndrome, is a condition in which the sensory system of one part of the body gets turned on, leading to increased sensitivity to pain out of proportion to its stimulus.
“The pain is very excruciating ... it’s a stabbing, shooting, burning kind of pain,” said Lonnie Zeltzer, director
of the pediatric pain program at UCLA.
At one point, the pain was so bad for Goodall that she had to stop going to school because she could not be touched.
But instead of silently suffering from the condition, she decided to actively fight against RSD by forming a nonprofit organization with her mother called “Rock Out to Knock Out RSD”, to raise money for RSD research at UCLA through concerts.
The money raised by the organization will be used to provide the Pediatric Pain Program at UCLA Mattel Children’s Hospital with money for research for RSD as well as to purchase medical supplies and to teach others about the syndrome.
People suffering from RSD, often triggered by traumatic incidents such as accidents or invasive medical treatment, have a malfunctioning nervous system where neurons misfire, sending multiple pain signals to the brain.
RSD is usually limited to one part of the body, but can spread and cause temperature sensitivity and difficulty with certain types of movement.
Zeltzer added that about 200,000 to 1.2 million people, mostly women, are affected by RSD.
Before it was determined that she suffered from RSD, Goodall spent seven years visiting over 10 doctors, and in one misdiagnosis she almost had her arm amputated because a physician believed it was infected.
Once she was properly diagnosed, she underwent treatment, which for RSD patients can include medication, physical therapy and psychological support.
Though she had a very complete recovery, Zeltzer said she had a relapse, which is not uncommon.
Before her visit to Zeltzer in the pediatric pain program, where she was diagnosed, some people started to believe that she was making up her syndromes.
“It was hard to explain to people what I had. People thought I was making it up,” she said.
Goodall’s mother, Lori, said it was frustrating to witness her daughter’s difficulty in being properly diagnosed.
“It’s very difficult to see your child screaming in pain, and going through a ton of doctors to see what was wrong with her,” she said.
Though the idea started several years back, Goodall’s project became a reality last year, when $5000 were raised at the first concert event.
The second concert took place this past Saturday in San Luis Obispo where local bands Seed and Mystic Red performed.
Ashley’s mother said her daughter’s efforts are in the hope of helping families avoid repeating their difficulties in properly diagnosing RSD.
“I’m very proud of her,” Lori said.
“She does it not for the recognition, but so that other people won’t have to go through the same thing she did. So others won’t have to wait 7 years before finding out what is wrong.”
Goodall said she donated half of the proceeds and will use the rest to plan the next event.
She said she has received offers for help from as far as Canada and New Zealand.
Zeltzer said given Goodall’s difficulties, her efforts were selfless and commendable.
“Its unusual to have an adolescent still in high school take their condition and turn it into something positive,” she said.
“I think she’s a remarkable young woman who is dedicated, knows what she wants and goes after it. She exhibits tremendous strength and courage. Despite her own pain, she is still working to help others.”

Chronic pain disorder can affect the whole family...

HILLSBOROUGH -- Living with Reflex Sympathetic Dystrophy Syndrome can be a new experience not just for the person diagnosed but for families who also adapt to the disorder's conditions.
Stephen Brilliant, who was diagnosed in 1997, and his wife, Antoinette, said a major challenge was deciding whether to have more children -- at the time of the diagnosis, they had one daughter. They went on to expand their family with two more children: Nathaniel, now 11, and Jacqueline, 7, but gave up their dreams to try for a fourth child, Antoinette Brilliant said.
The couple's youngest children have learned they can't "play rough" with their father or rub against him the wrong way because they could hurt him. Their older daughter, Anna, 13, is old enough to recall when her father wasn't in as much pain as he is now.
"All family members live with it, not just the person in pain," Antoinette Brilliant said.
When the couple vacationed at Walt Disney World in 2001 and in 2005, Brilliant missed out on roller-coaster rides and other experiences he once enjoyed.
"If it is 80 degrees during the day and drops to 60 degrees overnight, his foot will start throbbing immensely," Anna said.
When describing a recent snowstorm, Anna said, "When we all woke to the beautiful snow, my dad had already been in pain due to the pending weather change. I swear my dad can predict the weather!"
While RSDS is not genetic, the family also had a scare when Anna was a fourth-grader about four years ago and began to develop similar painful symptoms when she sprained her ankle during a physical fitness test in gym class. Once Anna thought the ankle healed, she resumed her usual activities of ice skating and other sports.
"I ran around at recess and played softball. This unfortunately made my ankle worse," Anna said. "So I went to three more doctors in New Jersey and New York. They all said that I had nerve damage, but it might be something more. I had to stop skating. I couldn't participate in gym the whole third marking period and wasn't allowed to run around anymore."
Anna then saw Dr. Alyssa Lebel, an anesthesiologist and neurologist at the Boston Children's Hospital in Massachusetts, who confirmed the youngster only had peripheral nerve damage and not RSDS. Anna then had physical therapy three times a week for about 18 weeks. Then, for about another year, she had physical therapy once a week. Today, she can enjoy physical activities again but knows her father isn't as fortunate.
In helping other families cope with these and other changes, the family attends group support sessions monthly at Somerset Medical Center in Somerville. The sessions, "Living With RSDS," help the family share experiences with others who have been diagnosed with the disorder. About 50 members throughout Central Jersey attend the support sessions.
In the fall, the group took its efforts a step further and planted about 200 flower bulbs in pots, then sold the plants to various Central Jersey medical offices to raise awareness about RSDS. The group raised about $2,000 im various fundraising efforts to help other families with the disorder get the services they need.
"I am living with RSDS, even though I don't have it," Antoinette Brilliant said. "I've been through everything with my husband. It gave us a different perspective on what's important in life."
Brilliant said that for those who think they might have RSDS, early diagnosis is critical. His advice to those who have been diagnosed: "Don't give up and keep going. That's very important because I can see the difference with people with positive attitudes and those who don't have positive attitudes."

An intense Physical Therapy story...

Kara Loree broke down on a Friday, 11 days into pain boot camp.
The tub step-ins did it.
They're tough. With an occupational therapist timing her, Kara had to step in and out of a bathtub as often as she could in one minute. And she had to beat her own record: 37.
That morning, on the 11th step-in, the 15-year-old Oregon City girl tripped and crumpled.
"I can't," Kara said, gasping.
Take a moment, therapist Cyndy Coughlin told her. Breathe.
In late October, Legacy Emanuel Children's Hospital admitted Kara to a new program designed to cure young patients with certain debilitating, chronic pain -- or at least teach them to cope. Doctors bill the program, one of a handful of such nationwide, as medicine with a tough-love twist: To help her, Kara's medical team would make her hurt more than she had since constant, excruciating foot pain started in September.
Rule No. 1: Unless her doctor asked, she wasn't allowed to whimper a word about her pain.
Kara leaned her head against the shower wall. Tears streamed down her cheeks, and her shoulders heaved as she sobbed.
"Everybody has a time," Coughlin said gently, "when they need to stop and take a break and start over again."
"No," Kara said, her voice rising defiantly from its usual soft pitch.
"I am not doing it.
"I am not doing it.
"I am not doing it! And I really don't like you!"
Kara's pain seemed to come out of nowhere.
She hadn't injured her right foot. It wasn't infected. She hadn't even slept on it funny.
Yet, from the Saturday the pain started, Kara said, her foot felt as if an elephant were crushing it. When anything touched it, drops of water in the shower or the soft swipe of a towel, her foot felt as if it were being pounded with a spiked hammer.
Kara's mother took her straight to her doctor.
Lisa Loree is a registered nurse. She and the doctor thought Kara's pain might be linked to granuloma annulare, a common skin condition that periodically caused bumpy breakouts on the girl's feet. The doctor biopsied the bumps, prescribed the painkiller Vicodin and sent Kara home, advising she use crutches.
An artistic sort who sings and writes poetry, Kara decorated her drab new crutches with glow-in-the-dark puff paint and hobbled on her custom sticks to Gladstone High School, where she's a sophomore.
Two days later, Kara phoned her mother from school, weeping. Pain screamed through her foot. She asked her mom to come get her.
In a hospital emergency room that day, doctors tried to calm Kara's pain with morphine and Dilaudid, a narcotic analgesic. Neither helped.
Lisa Loree remembers her daughter pleading, "Mom, can't they just make me unconscious?"
Pain is complicated, but in essence: Receptors on the skin trigger electrical impulses that travel to the spinal cord. There, pain signals can be blocked, enhanced or changed before they move to the brain, where chemicals called neurotransmitters combine to produce pain.
It can feel as quick as a pinprick, as achy as arthritis or as sharp and burning as the condition a rheumatologist diagnosed in Kara: complex regional pain syndrome, type I, or CRPS.
Doctors figure an abnormal reflex in Kara's spinal cord might have caused blood vessels to constrict, causing pain. When Kara's foot hurt, she stopped using it. The result was poor circulation, which caused more pain.
Research suggests that hormones, stress and emotions play a role in CRPS. The human nervous system continues to develop into the early 20s; hormonal, cognitive and psychological changes during puberty might affect adolescents' vulnerability to pain.
Adults can get CRPS, too. Much about the ailment remains unknown -- including how many people have it -- but doctors say one thing is certain: The pain is real, not imagined.
Kara's pain was stuck in a bad loop. It wouldn't turn off.
Kara checked into the hospital Oct. 29. Her father, Derek Loree, followed doctors' orders: He took away her crutches.
Kara knew she'd miss weeks of school, choir rehearsals, her friends, parents and 17-year-old brother, Colin. She'd have to skip several "Horde Nights," as Fridays are called in the Loree home, where up to a dozen of Kara's and Colin's pals gather for pizza, games and sleepovers.
But the foot pain had spread to her right knee.
Doing dishes and vacuuming fell unmissed off her chore list. But the pain, she said, kept her from the things she loves. Like many youths who develop CRPS, Kara is driven -- good at everything and a year ahead in math. She dropped that class because the pain exhausted her. At choir practice, she had to sit instead of stand. She couldn't bowl with her church group or shop with friends.
Rail thin at 5 feet 4 and 106 pounds, she'd lost weight, saying it was too hard to get to the kitchen to fix food.
Some days, her mother recalled, Kara would cry for hours, saying, "Mama, make it stop. Mama, make it better." All Lisa Loree could do was hold her hand and say, "Hang in there."
So when the rheumatologist referred her to Emanuel's hard-core pediatric pain program -- a physically intense approach based on the work of Dr. David Sherry, a Philadelphia physician who has helped more than 1,000 children with similar problems -- Kara agreed. She wanted her life back.
That first morning in the hospital, though, she was petrified.
"All I know," Kara said, tears welling, "is I'm gonna get hurt."
When she tried to put a shoe on the foot that hadn't worn one in a month, Kara panicked. Hyperventilating and crying the second morning in the hospital, she dialed her mother.
Don't call me, call your nurse, her mother advised. After all, the key to the program is teaching patients to solve their own problems.
At 9 a.m., when Michelle Swift, a physical therapist, arrived at room N3509 to collect Kara, a brown paper bag sat on the teen's bedside table. Kara's nurse had told her to breathe into the bag to quell her panic.
Her tone kind but firm, Swift insisted that Kara put on her shoes.
Kara fingered a medallion on a chain around her neck, a gift from her mother. Imprinted in it was one word:
She pursed her lips, slipped into her ratty old Asics and stood. Limping slowly, Kara followed Swift out of the pediatric unit and into a stairwell leading to the therapy gyms.
If Rule No. 1 was no pain talk, then Rule No. 2 was no elevator. And more: Do everything the doctors, physical, occupational and psychological therapists ask. Take responsibility for improving. If an exercise is timed, always beat the previous time. If it's repetition, always beat the count. If it hurts, tough it out. Don't follow the rules, and you're out.
"What's the difference," Swift asked Kara, "between a physical therapist and a terrorist?
"You can negotiate with a terrorist."
A smile slipped across Kara's face. Swift's, too.
Walk like a duck, Swift instructed.
Kara crouched, waddled down a hall, turned and waddled back.
She squeezed her eyes shut and covered her face with her hands. The duck walk had worked Kara's knees and toes, her most painful parts.
Swift handed her a box of tissues and gave Kara a minute to compose herself.
Scuttle like a crab. Move like an inchworm. Hop like a frog.
If one day feels like the next for any hospital patient, it felt doubly so for Kara. Day after day, therapists asked her to repeat exercises so they could chart her progress.
She rode a bicycle, walked a treadmill and hopped on a trampoline. She maneuvered through obstacle courses, balanced on tippy boards, and when she limped quickly down a long hall, Swift told her that -- believe it or not -- she'd run that course soon.
"Ready? Go!" Swift said, and Kara did pushups, her hands on a mat and her knees on a chair. After 16, she stopped.
"I can't," Kara said, huffing.
"You can," Swift said. "Do you need to sit for a minute?"
"Can we do this tomorrow?" Kara asked.
"No," Swift said.
The push-pull between therapists and patient would become routine as Kara's motivation and emotions boiled and chilled. Her body and brain would find new ways to respond to pain signals, but the treatment came with its own stresses. Being away from home, school and friends so long wore on Kara.
During five- and six-hour days therapists distracted Kara with word games or personal questions -- anything to make her think about something besides pain. Repeatedly, they reminded her of her goal: to be able to do everything a healthy teen could. Achieving that was up to her.
Her creamy complexion flushed with exertion, Kara got back into position. Swift resumed counting pushups. "That's 20 . . . 25. There's 30. Last 10, girl, you can do it."
Swift punched a stopwatch.
"Nice job," she said.
Kara sank to the floor, crying.
"It's not all gonna be torture," Swift said. "I promise."
Auburn hair flying, Kara sprinted down a hall one week after she'd hopped into Emanuel on crutches.
A smile stretched from one side of her face to the other -- and that wasn't the only thing looking good. When she removed her shoes and socks, Kara's right foot looked as pink as a piglet, not the bone-white shade of the week before. For the first time in weeks, blood circulated properly to her toes.
That afternoon, Swift put Kara through her paces: jump rope; crunches; lunges; jumping jacks. Kara completed them without complaint, and a surprise followed.
That first Monday in November, the sky shone a sapphire blue. Drifts of maple leaves turned the sidewalk on North Graham Street into a celebrity-worthy red carpet.
The two pushed open a hospital door and stepped outside.
"Sunshine!" Kara cried. She kicked her feet through the leaves and sucked in fresh air.
Her goal, Swift told Kara, was to walk with a steady, even gait -- like a normal teen -- down the steep hill.
Kara did.
Two blocks below, Swift suggested they race back.
Arms and legs pumping, Kara reached out and touched a pole at the top of the hill.
"I won," she said.
Desensitization was the worst, and several times each day Kara required the tactile therapy designed to retrain her pain response.
Therapists massaged Kara's foot. Or they asked her to submerge it in hot water, then ice water. Often, she ran a plastic brush across her toes and arches. To anyone else, it might have felt less like torture and more like a pampering pedicure.
On her 10th morning, desensitization meant walking barefoot in the dewy grass, and it pushed her over the edge. More than an hour later, Katie Harpster found Kara in a corner of the gym, her angular frame curled into a tight ball. She'd spent the lunch break sobbing.
"Kara, c'mon," said Harpster, an occupational therapist. "Let's go for a walk and a talk."
The next day, Kara's mood bounced back.
The day after that, she threw her, "I'm-not-doing-it" tantrum over the bathtub step-ins.
Neither the highs nor lows surprised Dr. Steve Janselewitz, the pediatric physical medicine and rehabilitation specialist who directed Kara's care team. Since he and Emanuel's Dr. Mark Shih started the pain program early this year, they've watched about half a dozen children ride pain and mood swings similar to Kara's.
"It's kind of nice to see them break down while they're here," said Janselewitz, "because then we can get them through that, and they can say: 'Hey, I can do this.' At home, they don't necessarily have that support."
On her 19th and last day in the hospital, Kara and Linda Krausse, a physical therapist, charged across a sky bridge and ducked into a stairwell.
Kara had plenty on her mind. Her team of therapists, doctors, a psychologist, teacher and social worker had armed her with coping strategies and a home exercise program she'd need to follow faithfully. Her foot and knee still hurt, but she could deal with it. She could run and jump and planned to glide around the Lloyd Center's ice rink that weekend.
In a few weeks or months, Janselewitz predicted, Kara's pain would subside, then disappear, as it typically does for children who can endure the treatment program.
In the stairwell, Krausse told Kara that together they'd run four stories up, then four down. Four times.
"You've come a long way, Kara," Krausse said.
"I have," Kara replied.
"That must feel good."
"You have no idea," Kara said, "how good it feels