-Bob Marley

Bob Marley should know a thing or two about that.  Marley is to many the face of Jamaica, and is widely credited with bringing Reggae music to the world.  His music brought the people of his island nation together, and his songs of hope and redemption still sing to people today.  He died in 1981 after a four-year battle with cancer.

We wrote a few weeks ago about some artists that used music to illustrate the disruption of brain activity for someone experiencing a seizure.  Music has been shown to do very curious and creative things in the minds of listeners.  It has been documented to allow others to express themselves, and these people were often considered unreachable.

Doctor Oliver Sachs is perhaps best known by the movie Awakenings.  It tells the story of his search for a drug therapy to treat patients who had been rendered catatonic due to disease.  In his book Musicophilia, Doctor Sachs relates stories of people who have curious disorders related to music.  One such patient had amusica, or a complete lack of the ability to process a tune.  Music to this patient sounded like an atonal mishmash of clanging pots and pans.  He also profiles Clive, a successful musician.  Clive had an infection that robbed his brain of short-term memory.  He would instantly forget anything that happened before he blinked his eyes.  A chocolate in his palm would become a brand new sweet every time that he opened his hand.  He became convinced that his fugue was a sort of death, and he wasn’t sure that his life wasn’t some sort of dream.  He found his salvation in his music.  He was able to remember pieces, recognize works, play piano, and conduct.

There has been extensive documentation of people with a savant aptitude for music.  You may remember the story of David Helfgott, the Australian pianist who inspired Shine.  He was diagnosed with schizophrenia, and had trouble functioning in life but became relaxed and involved while playing piano.  It was most recently the subject of The Soloist, with Robert Downey, Jr. and Jamie Foxx.  That film told the true story of Nathaniel Ayers, a Julliard-trained musician who suffered a breakdown and ended up homeless in Los Angeles.  While Nathaniel suffered a significant break with reality, his gift for music remained.

Derek Amato dove into a swimming pool and was rendered unconscious.  He made a seemingly full recovery from an apparent concussion, but had lost some of his hearing.  He went to a friend’s house where he saw a piano.  He knew how to play a little guitar, but had no experience reading music.  He found that while at the piano not only could he play, he instinctively understood chord structure, phrasing, and could instantly improvise or “compose” entire pieces.  He said that the music came to him as images of little black and white blocks floating around in his brain.

So what of music’s more medicinal uses?  We wanted to explore how music may improve health.

Mel Tillis developed a pronounced stutter after a childhood illness.  He had difficulty forming words and finishing a sentence.  When Tillis sings, he displays not only a fantastic voice (with a string of top 10 hits as a singer and as a songwriter), but the stutter disappears.  This same sort of control has been seen in people suffering from Tourette’s Syndrome.

A study at the Cleveland Clinic looked at the use of music during surgery.  Patients undergoing brain surgery are often required to be “awake” during a procedure.  Music allowed them to relax, better manage anxiety and pain, and many simply fell asleep during an operation.  If the surgeon needed a patient to respond to a verbal cue, they simply took off the earphones, performed their diagnostic test, and then the patients went back to la la land.

Music enhances memory.  Listening to something like Mozart uses both sides of your brain, and simply recalling a piece of music can allow you to retrieve information stored during the initial listening.  It has also been shown to speed the recovery from a stroke.  Might this not be helpful for someone suffering from cognitive impairment from a disease like Huntington’s?

Listening to relaxing or favorite music helps to reduce stress.  When you are feeling stress, your body releases a hormone called cortisol.   Studies have shown that people who listened to relaxing music showed high levels of immunoglobin A, the building block of our immune system.  People using music have also been able to change the way that they perceive, and can thereby control pain.  In addition to being a distraction, it caused the body to release endorphins that counter-acted pain receptors.

In contrast, music that is upbeat or more intricate can help to speed up the heartbeat.  Music that brought listeners pleasure caused blood vessels to dilate, increasing the flow of blood to the heart and brain.  Researchers studying laughter have showed the same sorts of results.

Perhaps you use music to set the pace for a brisk walk.  Maybe you plug in the iPod for an energetic round of house cleaning.  You may set your playlist to enhance an intimate dining experience.

We think that you should have a daily dose of music alongside your vitamins and your apple.  Not only does it sound good, it’s good for you!

In June of last year, Campbell revealed that he had Alzheimer’s disease.  He’s 75 now, and has had a stellar career.  He’s known for such hits as Wichita Lineman, By the Time I Get to Phoenix, and Rhinestone Cowboy.  He has performed with Frank Sinatra, The Monkees, Elvis, and the Righteous Brothers, and for a time was a full-fledged member of the Beach Boys.  At the Grammy Awards he performed a medley of hits with the Band Perry and Blake Shelton.

Campbell still tours (after all, he’s promoting a new album!), and he has a few ringers in his band to help him along.  In addition to using a teleprompter to remember the lyrics to songs that he’s been singing for 50 years, he is joined by his brother, Shannon, on rhythm guitar, his sister, Ashley, on keyboards and violin, and his son, Cal, on drums.  One of Campbell’s symptoms is a loss of short-term memory, and when he goes astray, the family and his gadgets get him back on the rails.

Glen Campbell certainly isn’t the only professional in the spotlight working around his disease.  Pat Summit, the longtime coach of the University of Tennessee women’s basketball team, has eight NCAA Division Championships, 16 SEC Championships, and is an eight-time SEC Coach of the Year and seven-time NCAA Coach of the Year.  When she announced her diagnosis of Alzheimer’s in August she told the assembled media that she planned on continuing her career.  In typical Coach Summit style, she said, “There’s not going to be any pity party and I’ll make sure of that.”  She’s led the Lady Vols to a 19-7 record so far this season, and when they meet Kentucky on February 13, part of the proceeds will go towards a cause that she truly believes in.  It’s not Alzheimer’s research, but Cancer awareness.  Coach Summit lost a colleague, Kay Yow, to cancer a couple of years ago.

There is some exciting news on the research front, and it could have implications in the search for a cure or treatment of such diseases as Parkinson’s, Lou Gehrig’s, and Huntington’s.

Last May, 39-year-old Ted Harada was diagnosed with ALS, or Lou Gehrig’s disease.  ALS is the disease affecting Stephen Hawking, and while he has lived with it for 40 years, the average person dies two to three years after the first symptoms appear.  ALS robs your body of life but leaves your mind otherwise intact.  Scientists at Emory University and in Israel have been experimenting with stem cells to slow the progress of the disease.  While expectations are low and Harada is still living with the disease, he no longer needs a cane to walk and has a somewhat active lifestyle.

Biologists at Sloan-Kettering in New York have been using stem cells to treat mice and rats with Parkinson’s.  The transplanted cells produce dopamine, a chemical that is not efficiently produced in a Parkinson’s patient.  Animals that received the new cells saw a cease in their Parkinson’s symptoms.

Researchers at the University of California San Diego have used stem cells to recreate Alzheimer’s neurons.  That gives them a better picture of how the disease operates and allows for more robust research.

A few days ago, a study published by Case Western Reserve University in Cleveland reported a possible breakthrough towards a cure for Alzheimer’s.  A drug that treated a cell lymphoma, or cancer, caused mice to produce less of a type of peptide that causes dementia.  Mice with dementia were treated with the cancer drug and resumed normal mouse behaviors within 6 hours, and the effects lasted for as long as three days.

Over the last year, geneticists in England and here in the United States were able to target an enzyme that is associated with Huntington’s disease.  Using fruit flies, they were able to inhibit the growth of this enzyme, and while it is not a cure, the news certainly did constitute a breakthrough towards the treatment of the disease.

While all of this research is very promising, we are still pretty far away from human trials and cures.  While the scientific community does its thing, Stephen Hawking helps us to make some sense of the universe, and Glen Campbell sings and plays his guitar.  As millions learn to live with the diagnosis of one of these tragic diseases, Pat Summit teaches her girls how to win basketball games.

In the mean time, it’s not a pity party.  Make sure of that.

It is the stories of the people that we’ve helped that have inspired us the most.

We shared the story of Justin, and how his mother has struggled to raise him.  Kindra is like many other moms, married and raising children, but her story has a twist:  In addition to school, groceries, and family, she seeks answers for dealing with Justin’s pachygyria and infantile spasms.  Her story touched us, and led us to the story of Marissa and her father’s chronicle of her life.

We got to tell you about Meghan.  She was 2 when her father was diagnosed with Huntington’s disease.  As she started college and began to plan her own adult life, she also received a diagnosis of the disease.  Her father’s illness gave her a 50/50 chance of having it herself, and the coin flipped against her.  Meghan didn’t give up, though.  She graduated college and is sharing her story on YouTube and is hosting a concert to spread awareness of her disease.

Roberta has a story like many of the people that we talk to.  She went through months of illness, testing, misdiagnosis, and was finally told that she had Pulmonary Fibrosis.  After reaching several roadblocks in her journey to treatment, she made a right turn and found us on her road.  She still has many hills to cross, but breathes easier knowing that she has an advocate in Caring Voice Coalition.

Matthew went from an active lifestyle to one of uncertainty after a diagnosis of Alpha 1.  Many people commented on his story.  They shared with us their own tales of fear and uncertainty, and of the struggles that they had endured in a quest for treatment.  Matthew’s stories put us back in touch with Steven, whose mother died of Alpha 1.  We became involved with Steven after his own diagnosis, and it was wonderful to help him, to know that he was hanging in there, and we were honored to make a small dent in his life.

Sometimes it’s hard to convey the message in some of our stories.  How does one express a lifetime of chaos, doubt, and failure?  Joyce experienced all of these things in her journey through Narcolepsy.  The comments to our telling of Joyce’s story conveyed the message:  You’re not alone, you’re not crazy, and your perseverance is an inspiration.

We often receive notes and messages from the people that we help that thank us for what we do.  We’re referred to as “angels”, “lifesavers”, and “heroes”.  That is all very flattering but we sometimes come across someone who puts everything into perspective for us.  Such is the case with Dennis.

Dennis is a bona-fide New York City Detective with over 20 years of experience on the beat.  He went from a street cop to an undercover officer, and then received his Detective’s shield.  He was in Manhattan on September 11, 2001 and spent several grueling months at Ground Zero as he and his comrades combed the wreckage for remains.  He was then diagnosed with Pulmonary Hypertension.

Dennis’s story brought comments, encouragement (and some flirting!), from friends, PH sufferers, and cops with PH.  People heard his story of courage from just across town in Long Island, from all over America, and from as far away as Scotland.

We wonder how many others there are out there like Dennis, Joyce, Matthew, Roberta, Meghan, and Justin?  We’re sure that there are millions of you.  And we plan on continuing to provide a voice for you.  If you’re someone who is currently working with us, or someone who stumbled across our site, we’d love to hear from you.  Contact us and let us share your story.

We empower patients who live with life threatening chronic diseases.  The people in the stories that we’ve shared are the heroes.

Kindra was able to carry her baby, and her family was overjoyed when she gave birth to a son, a brother, and a handful.  They named him Justin.

Justin seemed fine.  He was a little smaller than the other babies, but everything seemed normal.  His parents grew concerned when he didn’t put on weight, and another visit to the doctor brought a diagnosis of pachygyria.  It is a rare malformation of the brain that caused Justin to have seizures across one side of his body.  Justin’s family watched as he began to experience infantile spasms.

What must it be like to see your child experience this?

A child with infantile spasms will have delays in their development.  When other children crawl, yours may not.  When other children babble, yours may stay mute.  When other children begin to walk, yours may be like Justin; he requires a very special wheelchair.

Imagine life for Justin.

We came across a blog a few weeks ago that is written by a father whose daughter is very much like Justin.  He has spent the past four years documenting the painful cycle of diagnosis, treatment, therapy, hope, and very often failure.  Marissa’s Bunny is often an outlet for Marissa’s father, but is brutally honest about the challenges that Marissa and her family face.

It can be hard to imagine what is going on for children like Justin and Marissa.  While they do have a form of epilepsy, they are still children.  Some have compared seizures and spasms as being paralyzed but moving.  The activity of the brain during an event has been described as a circuit breaker tripping during an intense storm.

A few folks have had an interesting take on that brain activity.  The American Epilepsy Society has a lecture series about research and dealing with epilepsy.  At their December meeting they unveiled a piece by the Relanche Ensemble.   In a work entitled When the Spirit Catches You, they put a seizure to music.  A young composer, Cynthia Folio, who has a daughter with epilepsy, wrote the piece.

At the University of Kansas, three professors also used music to help people “experience” these episodes.  Two of the professors work in music theory and composition, and the third is a professor of neurology.  They used a piece by Mozart that is then “deconstructed” to demonstrate the random firing of neurons.  The resulting “concerto” was performed by the KU orchestra and illustrates the dynamics of a seizure.  It became the soundtrack for their film, It is Epilepsy-The Challenges and Promises of Automated Seizure Control.

Having epilepsy, and especially a form like infantile spasms, is most certainly a challenge. For many, hope comes in rare spurts.  Perhaps works like these can help us to better understand what living with infantile spasms is like, and perhaps an understanding will lead to breakthroughs in learning.  Perhaps children like Justin and Marissa will have hope for a cure in their future.

The stresses and worries that plague a person with one of these conditions strike the caregiver as well.  Your health and well-being is every bit as important as the health and well-being of the patient.

A study conducted in 2004 by AARP and National Alliance for Caregiving estimated that there are over 44 million adults who provide a level of care for a friend or loved one.  This represents over 20 percent of the adult population.  These selfless people provide a free service valued at over $250 billion dollars in about 20 percentof the homes in America.

The study asked caregivers about the Level of Burden in the care that they provided and used that as a measurement against the perceived health of the caregiver.  The Level of Burden was a 5-point scale with simple tasks rated a 1 and difficult tasks rated a 5.  They also created an index based on the level of burden, the activities of daily living, and the amount of time dedicated to caregiving.  Nearly 20 percent of the people polled said that they provide more than 40 hours of care per week.  Over 80 percent were caring for a family member.  Over half were managing care for someone and working at the same time, and over 60 percent were married or living with a partner.  That’s a lot of juggling.  Most of these people provided this care for at least four years.

When asked, most of the people surveyed said that being a caregiver wasn’t that hard physically, and not very emotionally stressful, and not a financial burden.  Of the ones that responded with a high level of stress or strain, they generally said that they didn’t have a choice of whether or not to be a caregiver.  These respondents also reported a lower sense of their own personal health.  About half of these folks said that they needed help to manage their stress.  They were also more likely to spend more money on the person in their care than they did on themselves or their loved ones.  Over a third had asked for information on getting financial help for the person in their care.

The troubling thing is that the person in their care will often not be getting any better.

The American Psychiatric Association recently updated their list of what qualified as a mental disorder.  New on the list this year is ‘grief’.  As you deal with the loss or decline of a loved one, your mental condition is on the same list as ‘autism’ and ‘psychosis’.  In many cases, the grieving process starts before the actual death.  Add that to the burden of being a caregiver.

What is your outlet for dealing with this stress?

Lee Ann Cox is writing a book about the loss of her husband.  She expressed her feelings daily over Twitter and is weaving this 140-character-per-page diary into a narrative about the toll that his cancer took on her young family.  It was a way for her to scream out loud as her world crashed around her.  How will you know when it is time to scream out loud? When is it time to cry out for help?

Listen to yourself.  Do you feel as if you’re never rested?  Do you have flashes of anger at those around you?  Are you unable to eat or sleep?  Have you noticed issues with the person in your care, like missed medication or skin problems?  You have to care for yourself if you wish to have any hope of caring for another.

The first step is to define the reality of your situation.  What is the prognosis of the person in your care?  Be informed, and know what is coming in the days, weeks, and years ahead. Defining this reality will help you to be better prepared and have a plan for if and when things seem to go from bad to worse.

Part of your plan needs to include time for yourself.  Are you able to engage others in your caregiving?  Many parents commit to a specific ‘date-night’ and point to that
as a key to a healthy relationship.  Is it possible to arrange a ‘sitter’ for the person in your care?

It’s important to have hope.  Hope is contagious, and while your hope may be different than the person in your care, it’s still important to care.  Perhaps it is the small hope for a miracle cure; perhaps it’s hope for a better today.  Either way, it’s hope.

Meghan Sullivan is 22 years old.

When Meghan was 2, her father was diagnosed with Huntington’s Disease.  She didn’t understand it at the time, but by the age of 6, she knew that she had a 50/50 chance of having the disease herself.

In the summer of 2006, when Meghan was a sophomore in college, she came home one afternoon and started to pour herself some lemonade.  She clumsily spilled the pitcher and knocked her glass to the floor.  Her mother came in and began to help her clean up the mess.  Meghan looked at her mother and said, “I think that I have Huntington’s.”

“I know,” said her mother.  Cheryl had been noticing the symptoms in her daughter for a few years.

Meghan visited a neurologist and was officially diagnosed at the age of 19.  The average age of onset for HD is 40.

Initially angry with everyone, Meghan thought about quitting school.  Realizing that she was only four classes away from graduating, she finished college, earning an associates degree.   Meghan’s father died in September of 2008, proud of his daughter but never knowing about her diagnosis.

Her neurologist recommended an experimental drug that she would be a perfect candidate for.  She started taking it in December of 2008.  The monthly cost of the medication is $6,000.  The specialty pharmacy that Cheryl used for Meghan’s medications suggested that she contact Caring Voice Coalition.  Cheryl said, “It was like winning the lottery.  They are truly invested.”

Meghan, now a college graduate, lives at home where Cheryl can help to manage her daily routine.  Meghan hasn’t given up, though.  She is fighting to stay an advocate for Huntington’s Disease, and wants to see better treatments and a cure.  She has organized a charity concert, “The Concert to Fight Huntington’s Disease, Concert for Meghan.  With a Little Help From My Friends.”  It will be held Saturday, May 12 at the Chelmsford High School Performing Arts Center in Chelmsford, Massachusetts.  Performing that evening is Peppertown, the most spot-on Beatles tribute band you’ve ever heard.

We hope that you’ll find yourself in New England in May and be able to join Meghan and her friends.  We hope that you’re moved by her story and that you will also become an advocate for HD.

We also hope that you’ll take Meghan’s advice:  “Live your life like me:  Every day to your fullest.”

Imagine living that with a clotting disorder.

Millions of people around the world have some sort of bleeding or clotting disorder.  Queen Victoria had a clotting disorder, and passed it on to her daughter.  That daughter married a famous Russian guy and their son, Crown Prince Alexi, had it.  Do you think that Czar Nicholas and Czarina Alexandra had some concerns about young Alexi?

Of the many types of blood disorders that are known, Factor XIII is the most rare.  One in five million people rare.  It is also unlike most of its cousins in that it doesn’t discriminate.  It affects boys, girls, and all races.  It does, however, share some characteristics.  It is treatable, but there is no cure.

So what does this mean to your little daredevil?  Should you wrap little Nicky in bubble wrap and stow him away on a shelf?  Maybe.  But being a kid is supposed to be fun, and it can still be fun if you use some common sense.

Children have a tendency to learn things by experience.  Sometimes this experience is by experiment, like “the effects of metallic objects on toaster elements” or “the viscosity of cooking oil on old sneakers”.  You can’t stifle this level of curiosity or inventiveness.  It helped Edison invent the light bulb and put the Wright Brothers in the air.  It’s important, however, that your fears don’t become your child’s fears.  Your concerns over Factor XIII should be a part of your conversation with your child, but shouldn’t be every conversation.  One of the last traits that we develop as humans is common sense, and you can certainly share some of yours with your child.

You can also develop a plan for “safe” activities with your child.  Little kids are active buggers, and that’s a good thing.  Staying active, healthy, and maintaining a proper weight are all things that can help people with Factor XIII.  It helps reduce stress on the joints.

Can your little Tebow play football?  Contact sports are probably a bad idea.  But baseball?  Why not?  A common injury in baseball is getting pegged with a ball, so take advantage of the equipment.  There are masks and chest protectors available to reduce the risks of errant flies and wild pitches.

What little one doesn’t fall off of a bike?  It’s a right if passage.  You should always wear a helmet (even if you don’t have Factor XIII!) and while a little casual roadwork is probably all right, we wouldn’t recommend back flips on a BMX.

The activities that you discuss should be low-contact, low-risk sports.  Running, tennis, swimming, etc.  Sports like ice hockey, skateboarding, and rugby should be left to the others.  In a great irony, archery is a great activity.  It teaches skill, patience, and coordination.  Just be sure that you’re William Tell and not the one wearing the apple.

All of this activity is also good for something else:  plenty of rest.  We all do silly things when we’re tired, and a sharp mind will help someone with Factor XIII avoid those clumsy moments that all too often land us in trouble.

Having this sharp mind will also help to plan ahead.  You can work with your child to teach them to be responsible.  They can take ownership of their disorder and know that an activity may sometimes require them to pre-treat.  An activity that involves a great deal of movement may call for some meds up front.  They can also learn to quickly estimate the results of their actions.  A good conversation can answer the question of whether or not it’s going to hurt if you put a fork in the toaster.  They may not have to find out for themselves.

Most importantly, share.  Share the fact that they have Factor XIII with friends, coaches, teachers, parents, and anyone else who is going to be involved in keeping your young one healthy, active, and happy.  It isn’t who they are; it’s something that they have.  Look at it this way:  1 in 5 million kids is a pretty special number.

“Wash Teeth If Any”
“Eat Good-Fruit-Vegetables-Milk”
“Drink Scant If Any”
“Learn People Better”
“Stay Glad”
“Dream Good”
“Wake Up And Fight”

The complete list is 33 items, and it comes complete with illustrations.  Some of them seem to be the wishes of the optimist who penned and sang such songs as “This Land Is Your Land”, “Pastures of Plenty”, and “Better World”.  Many of them seem to make perfect sense to us today!

“Wash Teeth If Any”.  You can never underestimate the importance of personal hygiene.  But it’s more than just freshening up.  Many people suffering from chronic disease have suppressed or compromised immune systems.  Proper hygiene is often the only thing standing between you and a serious infection.  Wash your hands, put on some clean clothes, and keep your surroundings clean.  There is also the added benefit of feeling good! It is a good boost to the morale to get cleaned up, drag a comb through the hair, and look better.  Doesn’t your car run better after a trip through the car wash?  If you keep the machine pretty it will want to hum better.

“Eat Good-Fruit-Vegetables-Milk.”  We posted a blog a few weeks back about living with Huntington’s Disease and discussed the importance of maintaining a solid calorie count.  This is good, common sense advice for anyone.  Since you’ve gotten your machine all shined up, it only makes sense that you’d want to put some good, high-octane fuel into it!  A body fighting disease burns a great deal of energy, so fuel the body up!  Fresh fruits and vegetables will go a long way towards providing valuable vitamins that help to keep a person healthy.  Reports have indicated that high protein diets help slow the deterioration of cognitive abilities.  Newer research has shown that people with diets high in vitamins like B, C, D, and E, and omega 3 fatty acids (the kind that you get from good, fresh seafood) had less brain shrinkage and better mental performance.  They were studying dementia risk and found that elders whose diets were high in trans fats (the kind that you get from bad, processed fast foods) scored lower in cognitive tests and had a higher presentation of Alzheimer’s.

“Drink Scant If Any”.  Various reports will say “eliminate all alcohol” or “drink some wine” or perhaps “only drink red wine.”  Moderate intake of alcohol has been shown to help with blood pressure.  We’re not advising one way or the other.  Who are we to prescribe or judge?  We will, however, stand firmly behind this: if you choose to consume alcohol, do so safely and in moderation.  Like Woody says.

“Learn People Better.”  If only it were that simple.  The world would be a better place.  This is a resolution, though, that can benefit people on all sides of illness.  Who do you reach out to if you’re sick?  If you’re caring for a loved one, are you listening to the silent messages?  As we navigate the path of illness, it’s important that we keep our ears and hearts open to everyone’s message.  Our connection to others is often what keeps us spiritually alive.  We’re sociable animals.  Nowhere is this connection more important than the case of someone fighting illness.  The French Philosopher Simone Weil said, “Difficult as it is really to listen to someone in affliction, it is just as difficult for him to know that compassion is listening to him.”  Knowing that someone cares is often a powerful tool for healing.

“Stay Glad.”  It’s all about attitude.  Have you seen the video of the “contagious laugh”?   A woman on a train in Berlin reacts to a humorous text and begins to giggle.  Her laughter amuses another passenger, and over the course of a couple of minutes the entire train is engulfed in laughter.  If you ever desire to freak out a complete stranger, give them a big smile and hold out your hand.  They will smile back and grab your hand in almost every instance.  They will then look back and wonder who the heck you are.  It’s contagious, though.  A sort of contagion that we shouldn’t mind sharing.

“Dream Good.”  We like this one for two reasons: a good dream and a good sleep.  If you’ve ever had a fitful night of sleep after watching a frightening movie or after having had an argument with a loved one, you know what we’re talking about.  If you’ve taken care of your machine, gotten along with those around you, and maintained a positive attitude, you should sleep like a baby.  Let your body recharge, and let your dreams take you on a vacation.

“Wake Up And Fight.”  An elderly friend had a very full life and lived to an old age.  Every conversation started the same:

“HOW ARE YOU TODAY?”  He was vehemently opposed to hearing aids.
“Woke up this morning.  That was nice.”

He never stopped fighting, never stopped being feisty, and for over a century, woke up to do it every day.  He worked into his 80’s, and was seemingly never ill.  When asked for the secret to his longevity, he said, “Every day when I wake up, I figure that I’ve got the game half beat.  The rest of the day is the good stuff.”

Here’s to a healthy 2012 and some more of the good stuff.

After hours of testing and waiting, the physicians at the hospital were nowhere close to determining the cause of Roberta’s condition.  They treated her skin irritation, and wrote a prescription that addressed it like a common allergic reaction.

A few months later, Roberta was again in discomfort.  This time, however, something was different.  She was constantly out of breath, couldn’t climb stairs, and could barely make it through the basic functions of daily living.  After numerous visits to her doctor, she was finally diagnosed with pneumonia.  While her doctor attempted to treat her illness, it seemed as if her symptoms never got better.

After a series of specialists and an alarming shortness of breath, Roberta had her husband again take her to the emergency room.  Because of her extreme lack of oxygen, she was admitted so that doctors could hopefully pinpoint the cause of her condition:  she couldn’t breathe!

Things took a turn for the worse when the phone rang at the house.  It was the hospital, calling for Roberta’s husband.  This one took his breath away.  Roberta’s lungs had collapsed, and the physicians needed his permission to put Roberta on life support.  It was only then that someone suggested a possible trigger for Roberta’s dangerous decline:  Idiopathic Pulmonary Fibrosis.

Pulmonary Fibrosis is a scarring of the lung tissue that results in difficulty breathing.  There is no certain cause for it, no way of knowing who may get it, and no cure.  Some have had moderate success in treating the symptoms, but the ultimate option for some is a complete lung transplant.  Over 128,000 people in the United States has Pulmonary Fibrosis, with about 48,000 new cases diagnosed each year, and about 40,000 dying of the disease.  That is about the same mortality rate as breast cancer, but much less is known about this disease.

Roberta eventually recovered enough to return home, but her days were a maze of medical mayhem, pain, and confusion.  She wasn’t interested in seeing or talking to anyone.  Her husband spent hours researching the disease and trying to sort out their medical options.  Then one day, he came across Caring Voice Coalition.  He sent in a request for more information.  Roberta thinks back and says, “We had no idea what a blessing we had just encountered.”

They received a phone call from a CVC representative who explained the mission of the group, and upon hearing the diagnosis and condition of Roberta, began to offer contacts and organizations that would be able to assist.  Roberta says that the initial contact offered them an “angel in disguise” who has been with them ever since.

Caring Voice Coalition was able to find insurance for Roberta that was reasonable and affordable, and suggested a local organization that catered to PF patients.  The organization continues to work with Roberta and her family, helping them to deal with a chronic and ultimately fatal disease.

Roberta still suffers with Pulmonary Fibrosis, and she’s still scared.  Each day is confusing, and she’s still adjusting to living with her disease.  She’s doing better, though, and she says that with the help of CVC her family can breathe again.