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February 21, 2012“One good thing about music, when it hits you, you feel no pain.”
-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!
Posted in Featured, Media Center, Uncategorized | Tagged Huntington's, music, pain | Leave a comment
Make Sure of It.
February 14, 2012Did you have a chance to see the Grammys? Adele was a huge winner, the Foo Fighters asked everyone to actually play an instrument, and there were several stirring tributes to Whitney Houston. One of the most inspiring moments to us was the tribute and performance of Glen Campbell.
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.
Posted in Diseases, Featured, Media Center, Uncategorized | Tagged ALS, Alzheimer's, Huntington's, Parkinson's | Leave a commentWalking and Beating
December 12, 2011
My name is Dennis Stavropoulis, and I’m from Staten Island, New York. I’m a Detective with the New York City Police Department. I’ve been with the NYPD for
over 20 years.
I began my career as a simple beat cop, working the neighborhoods of Brooklyn. I was fresh out of the Police Academy and proud of my role. After a few years on the streets I was promoted to the Narcotics Unit, and it is here that I found my true calling. I would investigate, follow leads, and spent much of my time undercover, setting up and making drug buys. As an undercover officer, I grew, I flourished, and I was eventually promoted to Detective.
I was in between operations, and my Sergeant asked me to take a day and work an
election poll. They were holding local office primaries all over the city. It would put
me back in a uniform, and as it had been a few years since I had put on my blues, I
had to buy a new uniform that actually fit!
I awoke the morning of the elections and got into my new uniform. After a quick
trip to my office in Lower Manhattan, I jumped into my unit and headed Uptown to
work my detail. It was a beautiful morning. It was September 11, 2001.
I was inside the polling site and began to hear the first reports crackling over my
radio of an aircraft that had hit one of the Towers of the World Trade Center. Within
the first few minutes I could hear the sirens, as every emergency unit in the city
seemed to head downtown. People coming in for the elections were starting to hear
the news. I then heard over my radio that a second plane had hit the Towers. How
could this be? I was anxious to hear from my command.
After what seemed like days, a report came in that a Tower had collapsed. My
Sergeant finally told me to close down the poll, and get back to Lower Manhattan,
ASAP. As I made my way back to my Precinct I could see the dark cloud of smoke
and debris building over the island.
I was assigned to the World Trade Center to help evacuate the city, and after helping
secure the site, I was tasked with search operations. I would spend the next three
months, 16 hours a day, helping to guard the site and sift through debris. In the
evenings as the sun would set I could look through the remains of the World Trade
Center and see the light filtering through the haze of dust and brilliant crystals of
debris.
I began to work at the landfill in Staten Island where they were taking the debris, sifting
through to search for remains. I worked between the landfill and Ground Zero well
into 2002, never protected with anything more than a paper surgical mask.
I eventually went back to my normal duties, but as the years moved on I began to feel sluggish, I would tire easily, and I began to have difficulty breathing. I developed a loud cough that I couldn’t seem to get rid of. My normal routine became a daily challenge. I would get ready for work, head out the door, and have to grab a wall as I struggled to catch my breath.
My symptoms slowly worsened and I was eventually hospitalized. It was there
that I was diagnosed with Pulmonary Hypertension. It made sense, but they didn’t
explain the extent of the disease or how fatal it could be.
I’ve had to move to a restricted duty, and I’m now a liaison officer for The Missing
Person’s Squad of the NYC Medical Examiner’s Office. My PH may eventually force
me into retirement.
When I was first diagnosed, I was overwhelmed as I struggled to receive the care
and the medications that I needed. I worried every night about my future with the
Department, my health, and then I found out that my medication wasn’t covered by
my insurance. I’ve been a cop for over 20 years, but on a cop’s salary there wasn’t
any way for me to afford the cost of these medicines by myself.
It was a great relief and comfort to receive a phone call from Caring Voice Coalition.
A wonderful woman on the other end of the phone explained who they were and
how they could help. She asked about my diagnosis, asked about my health, and
then gathered some information to fill out some paperwork. With CVC’s help I’ve
been able to continue a regular regimen of medications and receive therapy for my
disease.
I’m not 100 percent yet, but things are looking better. I can get up the stairs without
resting, I walk around my neighborhood, and I even get out and play a round of golf
every once in a while. I’ve learned to appreciate these little things that I had started
to take for granted. My last echocardiogram even came back normal!
I’ll be forever grateful for the support of CVC and their team of caring voices. After
seeing the worst on 9/11, and feeling the worst before my diagnosis, and fearing the
worst after hearing the news, I once again have a quality of life. I may never walk a
beat again, but every day I wake up and I walk, and every day my heart still beats.
A Home Away From Home
November 30, 2011If you are dealing with a chronic disease, life can be pretty complicated. There
are mountains of insurance forms, rivers of medical bills, oceans of procedures,
appointments, and a general disruption of life. Those of us at Caring Voice Coalition know this. You often count on the love and support of your family, but what if they aren’t around?
For many sufferers of chronic illness the treatment that is needed is not offered at
the local pharmacy. Your family practitioner may not have the training or tools to
help you. You may have to travel far from home to receive treatment. Does that add
to the mounting stress of dealing with an illness?
Fortunately, there may be a resource for you. The Hospitality House.
On January 14, 1972, Cyril and Claudia Garvey lost their 13-year-old son to cancer. Kevin had fought the brave fight, and received extensive treatment at Roswell Park Cancer Institute in Buffalo, New York. The Garvey’s were from Sharon, Pennsylvania, and made frequent trips to Buffalo for Kevin. They stayed in hotels, slept at the hospital, and did whatever they could do to be there for their son.
The cancer community is like many, and you bond with similar people. During Kevin’s treatment, the Garvey’s met many families who were unable to afford any sort of lodging during the care of their loved one. They stayed in treatment rooms, cafeterias, and often in their cars.
The Garvey’s leapt into action, and started a fund to purchase property near the centers where Kevin was being treated. After finding a suitable location, volunteers donated paint, furniture, and sweat, and on July 26, 1972, The Kevin Guest House welcomed its first guests.
The Kevin Guest House spawned The Ronald McDonald Houses, the American Cancer Society’s Hope Lodges, and numerous other Hospitality Houses across the country and the world. Today they are part of a network of over 200 nonprofit organizations throughout the United States.
Not every Hospitality House is the same.
Most will take anyone, regardless of income. Rates for staying at a House range
from $15 to $60. Most of them count on donations and grants to keep the cost to
families in medical crisis low. The basic mantra at a Hospitality House,
however, is “Get Here, Get Better, and then we’ll figure out the finances.”
Many of the Houses invite people in treatment, and welcome their families. Some
cater specifically to a particular disease, and some are just for patients or just for
families.
Pittsburgh’s Family House operates four facilities around the University of Pittsburgh Medical Center. Together they offer 163 rooms and suites for patients and families.
The Helen K. Rossi House in Iowa City, Iowa is a 30 room facility near the University
of Iowa’s Children’s Hospital that caters specifically to the families of patients.
The Sumner Foundation Hospitality House in Gallatin, Tennessee is a 4-bedroom
home that calls itself “The Little House With A Big Heart.”
All of these facilities have something in common: A Home Away From Home. They
strive to provide a sense of normalcy during a very trying time. A guest at a House
in Kentucky was spending time with a young son going through treatment. She
found herself saying, “Going home. See you in the morning,” as she left the hospital.
She had a chance to cook herself a meal, do some laundry, and know that her child
was right next door.
If you or a loved one is pulled far from home for a life-saving treatment, talk to the
folks at the facility. If you’re lucky, there is a Hospitality House right next door! You
could have a Home Away From Home!
The Joys of Parenthood!
November 4, 2011Today we welcome a new little lady to the world as Caring Voice Coalition’s Taylor Scott becomes a DAD to a gorgeous, healthy baby girl! What a joyous day it is. We send our “Congratulations” to Taylor and his lovely wife as they dive into the wide, wonderful (nutty) world of parenthood!
Please join us in saying “Congratulations” to Taylor.
Here’s a little bit about Taylor…
Taylor Scott handles all of our marketing efforts. He is responsible for the development of educational and advocacy materials and provides professional oversight for the organization’s social media strategy. In addition to creating our internal and external communications, Taylor assists the President and Vice President with program awareness through local and national events.
Prior to joining the team, Taylor worked in the financial industry with a primary focus in retail management and customer communications. He has 12 years of leadership and management experience.
Again, “Best Wishes and Congratulations” from the entire Caring Voice Team!
A favorite quote to remember….
“Parenthood is like a roller coaster…Up, down, up, down. – Oh, what a ride. – l always wanted to go again. lt was just interesting to me that a ride could make me so frightened… so scared, so sick, so excited… and so thrilled all together. Some didn´t like it. They went on the merry-go-round. That just goes around. Nothing. l like the roller coaster. You get more out of it.” Grandma, Parenthood
Posted in Events, Media Center | Tagged Caring Voice Coalition, CVC, parent, parenthood, parenting, Richmond, RVA | Leave a comment ← Previous post
