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 April 23, 2013
Explain the disease.
Children may not understand disease names or their associated symptoms, and the word “disease” may make them worry that it is something they can catch.
Try not to go overboard, but address common fears.
Carefully explain that your loved one isn’t acting this way because she doesn’t love the child anymore. It is just that he or she has trouble doing some things now.
Even if your child doesn’t ask, make sure he or she knows that the illness is not contagious.
Emphasize that the disease has nothing to do with germs and cannot be “caught” by being near a loved one.
This information was provided courtesy of Lift Caregiving.
Posted in About Us, Diseases, Featured | Tagged children, disease, illness, lift caregiving | Leave a comment November 21, 2011
We 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 November 8, 2011
According 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.
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 October 11, 2011
Caring Voice Coalition, Inc. (CVC), a non-profit organization that provides financial assistance and insurance advocacy for persons with specific chronic illnesses, is pleased to announce a new program to assist patients diagnosed with Narcolepsy.
Narcolepsy is a chronic sleep disorder characterized by excessive daytime sleepiness (EDS) in which a person experiences extreme fatigue and possibly falls asleep at inappropriate times, such as work or at school. Narcoleptics usually experience disturbed nocturnal sleep and an abnormal daytime sleep pattern, which is often confused with insomnia. Narcolepsy is often associated with cataplexy, a sudden loss of muscle tone often triggered by intense emotions, sleep paralysis and hypnogogic hallucinations. While medications often help to manage the signs and symptoms of Narcolepsy, there is currently no cure.
This announcement represents an expansion of CVC’s current programs which include Pulmonary Hypertension; Alpha-1 Antitrypsin Deficiency; Idiopathic Pulmonary Fibrosis; Chronic Granulomatous Disease; Complex Partial Seizures; Infantile Spasms and Huntington’s disease.
“CVC is very excited to offer this new program,” said Samantha Harris, Vice President of CVC. “We strive to improve the lives of our patients every day and look forward to expanding our assistance to the Narcolepsy Community.”
Tim Robertson, Senior Director of Patient Services, adds, “The rising costs of healthcare prevents many patients diagnosed with chronic illnesses from beginning or remaining on therapy. CVC’s new program will provide financial support to help qualified patients afford the out of pocket costs related to their prescribed therapy for Narcolepsy.”
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 patient 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.