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← Previous postLiving with HD: Treat Your Brain to a Spa Day
November 21, 2011We spend a fortune every year on clothing, buying the right foods, beauty products, and other things to take care of our physical bodies. Huntington’s Disease certainly wreaks havoc on our physical well-being, but it is a neurological disorder. When was the last time that you did something nice for your brain?
There are many things that you can do to help you deal with HD and improve your ability to function.
If you or a loved one has been diagnosed with HD you will be dealing with stress. There is the stress over whether or not you’ve passed on the gene, the stress about your prognosis, and the stress about what your level of care will be. A leading cause of death for HD sufferers is heart failure. A major contributor to heart-related issues is, you guessed it, stress. Evaluate how you deal with stress.
Verbalizing what is causing stress can become difficult. Woody Guthrie was probably the most famous sufferer of HD. As his symptoms became more advanced, his wife designed a series of flash cards to facilitate their discussions. She presented him with a series of words and images that he could choose from to communicate his feelings. In addition to “yes” and “no” he was given the option of a face showing a smile or a face showing a frown. He could sort through the cards to better express what he was feeling.
HD brings with it a loss of control. Many will present with “anosognia” which is a lack of awareness of one’s condition. A patient with anosognia may still seem to be functioning at a relatively high level but be oblivious about things like communicating feelings, about personal hygiene, or about eating.
Someone in the early stages of HD may be unaware of their hunger or lack of suitable food. As the disease progresses they may find it difficult to swallow, or medications may make calorie absorption a problem. If you have HD, you get a free pass when New Year’s resolutions come around. You get to go on a Reverse-Diet. Increase your caloric intake! A diet high in protein has been shown to slow the deterioration of cognitive ability. Many of the physical aspects of the disease (chorea, spasms) also cause HD patients to burn calories at a very high level.
The posturing and chorea that comes with HD can make daily activity a chore. Many report that trying to remain motionless is an exercise in futility. For an exercise in non-futility, try to establish a good walking regimen as soon as possible. HD sufferers have reported that walking eases some of the physical symptoms of the disease, it has therapeutic benefits in dealing with stress, and it’s good exercise for the heart! People who’ve done this have also reported better sleeping habits.
Life can be difficult without a good night’s rest. Lack of sleep leads to fatigue, higher levels of stress, confusion, moodiness, and loss of coordination. Does this sound like Huntington’s? Chorea, a poor diet, and stress can all rob you of valuable rest. Instead of looking at this as a revolving door of issues, tackle it head on. Talk to your doctors about medications that will help lessen the physical effects. Your doctor may also prescribe something to help you deal with stress or depression.
Finally, a spiritual approach.
Studies have shown that Buddhist monks have the ability to regulate breathing, heart rate, and now brain activity, through the use of meditation. Monks who have trained for a number of years showed neural activity that was considerably more responsive and synchronized than the scans of people who had never practiced.
We’re not suggesting that everyone become monks, but 15 to 20 minutes of practice per day can’t hurt. All that you need is some quiet, and a cue to clean your mind. Some use a chant, or “mantra”. For some it is a visual cue, like a candle. For some, it is the image of a river. You just allow your thoughts to flow down the river. It is very easy to get caught in a pool or eddy, but concentrate on flowing down the river.
So get creative about verbalizing your stress, and feed your brain with good proteins. Use social interaction to give it a good workout, and meditation to give it a good rest. Treat your brain to a Spa Day!
Posted in Diseases, Featured | Tagged Caring Voice Coalition, chronic, CVC, disease, Huntington's Disease, illness, non-profit, npo, Richmond, RVA | Leave a comment
The Power of One: Pulmonary Hypertension Month
November 8, 2011According to the American Lung Association, there are an estimated 300 new cases of Pulmonary Hypertension each year, and there are over 160,000 hospital discharges in which it was one of the diagnoses. It can affect anyone at any age, but is most common among young women. 25 years ago there were no treatments and the average life expectancy from diagnosis was 2.8 years.
We’ve come a long way. While there is no cure, there are a variety of treatments that can prolong and improve quality of life in patients. Better yet, there is a great deal of research into new ways to treat and possibly cure the disease. The University of Wisconsin is one of 14 facilities participating in phase II clinical trials investigating the use of adult stem cells to treat arterial blockages. This could lead to breakthroughs in treating PH. And researchers at NIH are working with a gene that they call the “resilience gene” which adjusts potassium levels that allow people to react to stress. Could this be a cure for stress-related blood pressure issues?
If you or someone that you know has PH, this is your month! The theme for this year is “The Power of One”. The power of one person to exhibit courage and bring about change.
Last year saw groups all over the country lending support and raising funds and awareness in ways both large and small.
- A Casino Night in Arizona raised more than $20,000
- A PHun Walk in Baltimore raised almost $15,000
- A conference in Omaha was hosted by Nebraska’s First Lady and saw 160 attendees
- A seminar for young women with PH introduced Lauren’s Hope, a company that makes Medical ID bracelets that combine safety AND style.
PH is rare but is still quite serious. Many doctors have great experience with cardio-pulmonary related diseases but little exposure to PH. The Pulmonary Hypertension Association has a great list of professionals that can give you the specialized care that you need.
Living with PH is going to require some lifestyle changes in addition to medical treatment. Some have added a bar stool to the kitchen for resting while cooking or cleaning. Some have given up salt in favor of garlic. There are a variety of ways that you can ease your daily stress. Did you know that most Sanitation Departments offer a service that will pull your trash to the curb for you?
Medications are also a cause for concern. 3% of all hospital visits are the result of medication errors. Be clear with your doctor and pharmacist. Keep a note pad for questions and concerns. Keep your medications in their original bottles, and have your medical information handy. Be your own best advocate.
Use this November to raise your voice and be heard! Pulmonary hypertension is a serious, chronic, life-threatening condition. It is not, however, a death sentence. The Power of One voice can combine with many to create a beautiful racket as we work towards better treatments and eventually a cure!
Posted in Diseases, Featured | Tagged Caring Voice Coalition, chronic, CVC, disease, illness, PH, Pulmonary Hypertension, Richmond | 6 Comments
Lift Caregiving: Methods of Better Care
October 11, 2011In 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 commentThe Earliest Signs of Huntington’s Disease
October 11, 2011A Review of Kids At-Risk for HD Study
By Dr. Peg Nopoulos, Department of Psychiatry, University of Iowa Hospitals and Clinics
Article courtesy of Huntington’s Disease Society of America
Is it possible that there are subtle signs of Huntington’s Disease (HD) throughout life – even as far back as childhood? This is a question being asked by researchers at the University of Iowa who are conducting a study on children and adolescents who are at-risk for HD.
We know from studies in adults who have had presymptomatic testing for HD, that subtle changes in brain structure, thinking, behavior, and motor skills can be detected up to 15 years before onset of disease. Is it possible that these changes are present lifelong and therefore can be detected in childhood?
One reason why it is thought that signs of HD can be seen lifelong is that the gene responsible for the disease is an important gene in the development of the brain. It may be that when this gene is abnormal, then brain development is also abnormal and it may lead to subtle signs of the disease that can be detected lifelong and all the way back into childhood. These may be changes in thinking or learning, mood, behavior, growth, development, or motor skills. Understanding when these changes begin can help us understand important things about the nature of HD.
More importantly, identification of the earliest signs of the disease may help to track signs and symptoms over time and possibly help to better identify the earliest phases of disease onset. Ultimately, this could help treatment and even prevention strategies for HD.
Funded by the National Institutes of Health (NIH) and the CHDI Foundation, The Study of Kids At-Risk for Huntington’s Disease (referred to in short as Kids-HD) is being conducted by Dr. Peg Nopoulos at the University of Iowa in Iowa City. Participants can come to Iowa from anywhere in the country and are reimbursed for airfare, mileage (if driving), hotel and meal costs for their visit to the study site. Participants are also compensated for their time and participation in the study. A typical day for the study includes paper and pencil testing of thinking skills, filling out forms regarding behavior and emotion, a motor examination, collection of blood or saliva (spit) sample, and a brain MRI scan.
Parents or grandparents may accompany the study participant. Siblings can be enrolled together and tested on the same day for convenience of the families. Eligible participants are children or adolescents from ages 6-18 years of age who have a parent OR a grandparent who has either tested as gene-expanded for HD or has been given the clinical diagnosis of HD. If the potential participant has a grandparent with HD and their own parent has not been tested, that parent does not need to get tested in order for the child/adolescent to be enrolled.
Although the blood or saliva will be assessed for the HD gene expansion, results of this assessment are for research purposes ONLY – the results are blinded and are not released to the participant, the family, or any member of the research team including Dr. Nopoulos.
For more information on this study, email [email protected] or call toll free: 1-866-514-0858.
Posted in Diseases, Featured | Tagged Caring Voice Coalition, health, Huntington's Disease, illness, Richmond, RVA, University of Iowa | Leave a commentSupport Resources & Community for Caregivers
September 16, 2011Two Richmond-Based Organizations Partner to Offer Support Resources & Community for Caregivers
Lift Caregiving and the Caring Voice Coalition, Inc. (CVC) announced a strategic partnership that will expand the reach of free resources for family caregivers.
From free articles, assessment tools and access to experts, the functionality of liftcaregiving.com provides a comprehensive and actionable resource that was designed with the overwhelmed caregiver in mind.
The announcement represents an expansion of Lift Caregiving’s non-profit partners, including those with the Alzheimer’s Association of Greater Richmond; The American Red Cross, Virginia Capital Region; the Better Business Bureau; the Older Dominion Partnership; the United Way of Greater Richmond & Petersburg; and Virginia Commonwealth University.
“Lift Caregiving is proud to be working with such an impressive organization. CVC’s work improves the lives of people across the country everyday, and we are grateful for the opportunity to offer our resources to their network of patients,” said Ted Ukrop, co-founder of Lift Caregiving.
Taylor Scott, Marketing Manager for the Caring Voice Coalition, adds, “CVC’s financial assistance and patient support services have helped improve the life situations of our patients. We believe that our partnership with Lift Caregiving is an important way that we can expand our network of support and provide much needed resources to the family members and loved ones caring for our patients.”
About Lift Caregiving:
Lift Caregiving is dedicated to positively changing the lives of family caregivers by offering them a holistic, content-rich resource that is helpful, actionable and easy to use. Founded in 2010, the company is headquartered in Richmond, VA.
About the Caring Voice Coalition:
Caring Voice Coalition, Inc. (CVC) is a national 501(c)(3) non-profit, charitable organization established in 2003 to provide financial, insurance education and personal support to individuals diagnosed with specific chronic or life-threatening diseases. CVC seeks to empower these patients by providing comprehensive programs delivered through a holistic approach by a staff of knowledgeable, dedicated and caring individuals.
