Jean Wittie shared her story with us back in November of 2012 for our special edition of Community magazine, In Their Words. Her story detailed how Huntington’s Disease has affected her family. Below is her story.
My husband Frank and I have been married for over 30 years. We have a blended family of seven children, six grand children and five great grandchildren. The two oldest boys are my boys from my first marriage, and they are the ones who have been diagnosed.
Todd is the younger one, he’s 43. He began having some problems – facial twitching and jerking – in 2009. He’d always had problems with his thyroid, and his doctor at the time thought all of Todd’s problems were related to that. The doctor kept raising and raising the medication, until he took Todd completely off it. Nothing worked.
I finally took him to my doctor, who thought he had MS. We went to see a neurologist who ordered an MRI and genetic tests. When the diagnosis came back, it blindsided us. We had no idea that there was anything like this anywhere.
After Todd was diagnosed, his doctor ordered testing for Todd’s older brother, Dale. Dale had some symptoms, but they weren’t very pronounced, so he thought he was home free. But just before Christmas 2010, his diagnosis came back as positive for HD.
So I set out to learn as much as I could about Huntington’s. I found the UC San Diego Autism Center of Excellence and they were so encouraging. They invited Todd and myself to their research symposium, where we met researchers, officials with the Huntington’s Disease Society of America, and families with HD. It was all very encouraging.
As a result of that symposium, we were finally able to get both Todd and Dale on a medication that helped restore their quality of life.
Dale lives in his own home with his adult son, daughter and her family. Dale’s daughter and her family moved back to Oregon to be closer to Dale and help out.
Unfortunately, Dale’s daughter was diagnosed positive in March. Dale’s son, and Todd’s two daughters have not yet been tested. Todd’s two girls live in Alaska and want to be tested but they are working their way through the state’s medical system now. Dale’s son is practicing avoidance behavior – he’ll get to it, but for right now, he does not want to be tested.
My husband Frank has always been supportive of the boys and of me. He’s the one that keeps reminding me to be patient when I need to be.
I still work and I go to school, so Todd is at home alone during the day. I make meals that will be easy for him to eat, he takes care of the yard, feeds the dogs… both my husband and I want Todd to have as normal a life while he still can.
Our extended family is huge, and Todd and Dale have all of the love and support our family can offer. Various family members have attended the conferences, support groups, walks – everyone in the family is there for Todd and Dale.
I truly feel that if I stay positive and persevere, then there will be a cure. We all have to have the courage and the hope to keep going. You have to keep fighting.
So that’s my story.Diseases, Featured, How We Help | Tagged disease, Huntington's, Huntington's Disease | Leave a comment February 21, 2012
“One good thing about music, when it hits you, you feel no pain.”
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 February 14, 2012
Did 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 | 3 Comments February 7, 2012
We’ve been thrilled with the reaction to our website, and we really enjoy sharing with our many fans on Facebook. We get to share with you tips for healthy living, breaking news about medical research, and stories of hope and courage.
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.Posted in Diseases, Featured, Uncategorized | Tagged Alpha 1, Contact Us, Huntington's, Infantile Spasms, narcolepsy, PF, PH | Leave a comment October 11, 2011
In February of 2011, Katie Gilstrap did what people who have an idea for a startup company rarely do. She jumped.
While working for a community bank in Richmond, VA, Gilstrap became aware of a lack of support among family caregivers. At the bank, she was tasked with creating a product to help caregivers financially, but in her research, she realized money wasn’t enough.
“A lot of folks didn’t understand the full extent of the services available to them,” Gilstrap says. “The overwhelming response we got through interviews [at the bank] was, ‘Thank you for the response to our financial needs, but we have larger, more comprehensive issues here.’”
Earlier this year, Gilstrap and her colleague, Ted Ukrop, started Lift Caregiving, a resource that informs and assists caregivers on how to better care for their loved ones.
“We started Lift Caregiving because we realized that there was a huge need for caregiver support,” Gilstrap says. “We’re connecting people to the resources that will help make their experience easier. We also help counter the isolation people often feel when caring for a loved one by allowing them to connect with others who may be going through the same thing.”
What Lift Caregiving provides, essentially, are methods to explore better care. On the company’s website, caregivers can seek free advice – tips and insights in a multitude of areas including adult day services, end of life care, etc. – search for nearby providers, shop for useful products, and so on.
If a person, for example, cares for someone with Huntington’s disease, Lift Caregiving’s website would grant them a plethora of knowledge on how to provide better care, as well as offer support on how to manage their care and the stress often associated with it.
While the bulk of content on their site is aimed at those in the aging population living with serious illnesses, Lift Caregiving, Gilstrap says, has nowhere to go but up.
“We want Lift Caregiving to go as far as it can,” she says. “With the exception of our services section, which is currently for Richmond-area residents only, everything on our site is accessible from anywhere in the world.”
Their expansion, Gilstrap says, will soon take form by adding more services to their website, hosting community events, and establishing firm partnerships with local businesses, as they did with Caring Voice Coalition in April.
“CVC’s work improves the lives of people across the country every day, and we are grateful for the opportunity to offer our resources to their network of patients,” Ukrop said in a prepared statement.
According to CVC, their partnership with Lift Caregiving will help expand the reach of free resources for family caregivers.
“CVC understands the importance of family caregiving,” says Taylor Scott, Marketing Manager of Caring Voice Coalition. “We believe that our partnership with Lift Caregiving is an important way to expand our network of support and provide much needed resources to the family members and loved ones caring for our patients.”
If Lift Caregiving has found early success in targeting a specific niche, it can be credited to Gilstrap and Ukrop’s determination in implementing their vision, a notion Gilstrap offers words of advice on.
“It’s important to do your homework [when starting your own business], because there is a lot of risk involved in an economy like this,” Gilstrap says. “The difference in being your own boss is that you never really have time off. You have to love and nurture your idea because it will always need attention. We’re fortunate because there is such a big need for the services we provide. The sky’s the limit.”Posted in Caregivers, Featured | Tagged care, caregiver, caregiving, CVC, disease, health, Huntington's, illness, Richmond, RVA, small business, startup | Leave a comment