Category Archives: Featured
Featured Posts for the Slider
← Previous postMay Is Huntington’s Disease Awareness Month
May 9, 2013Jean 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.
Jean Wittie, directly right of the groom, with members of her family on the Oregon Coast
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.
This article first appeared in the winter edition of Caring Voice Community magazine.
Posted in Diseases, Featured, How We Help | Tagged disease, Huntington's, Huntington's Disease | Leave a commentCVC one of the best nonprofits to work for 2 years in a row
May 6, 2013
Several months ago Caring Voice Coalition participated in a survey rating the best nonprofits to work for. It is with pride and pleasure that we would like to announce that CVC has been ranked in the top 50 for the 2nd year in a row.
This year CVC ranked #33 out of 50 overall organizations and #18 in the Medium Organization category. The NonProfit Times, who conducted the survey, included an article listing the results of the survey (click here to view the full article).
Posted in About Us, Diseases, Featured | Leave a commentDo I Need a Power of Attorney?
May 1, 2013
A question CVC’s legal department is often asked is whether or not patients need a Power of Attorney (POA). But before I can answer that, I’d like you to understand what a POA is and whether one is appropriate for you.
What is a Power of Attorney?
A Power of Attorney is an agreement between two people: a principal and an agent. The principal, or almost always the patient, grants powers to the agent, or the caregiver, to make certain decisions on the patient’s behalf. These decisions can be based upon a range of issues, but they are typically financial or medical decisions. A POA steps in when the patient is no longer able to make decisions on his or her own behalf, and it allows the caregiver to designate who will make those decisions. Without a POA, a court or state may be able to designate someone to make decisions on the patient’s behalf. The person appointed might not be the person the patient would choose to make his decisions.
As an example, married couple John and Peggy choose to draft durable Powers of Attorney granting one another the authority to make financial and health care decisions on one another’s behalf. John discovers that he is diagnosed with Huntington’s Disease and eventually loses capacity to make decisions on his own. Because of the POA, Peggy can make decisions for John. Without that POA, their home state of Idaho could determine that Peggy is not the best person to make those decisions and instead designate John’s cousin, Nell, to make those decisions.
Do I need a Power of Attorney?
Probably. Most people who own property or have any money will need to make financial decisions, or difficult health care decisions later in life. If this is the case for you, you may want to consider having a POA in place.
The Specifics
When you draft a Power of Attorney, you must have the capacity to do so. Capacity is essentially the ability to make or enter into a legal relationship the same way someone with a sound mind would. Everyone is assumed to have a sound mind and be of normal intelligence. Someone can try to prove that you no longer have capacity. However, to do that, they must have specific and realistic proof.
So, if your illness is expected to progress in a way that may cause you to lose capacity, it is better to draft a POA sooner rather than later. You can speak to an attorney about tactics like videotaping the signing, getting one or many doctors’ statements of your competence, and/or having multiple witnesses at the signing of your POA to further support your capacity.
A POA must be durable to last after a patient loses his capacity. A durable POA will remain intact after the patient is no longer able to enter into legal relationships. A POA will terminate at death, even if it is durable.
The laws that govern Powers of Attorney vary state by state. Many people will need separate POAs for health and financial issues. Consult an attorney in your state to answer any specific questions you have and to draft a POA for you. If this is not financially possible for you, many state Departments of Health have free Medical Powers of Attorney or Health Care Proxies available through their offices. Contact your local Department of Health to request a copy of their form and for any specific instructions to complete.
If your family does draft a Power of Attorney, please send a copy to CVC. We can keep it on file in case the caregiver must sign on behalf of the patient when completing a new Terms and Conditions form or the incredibly important Renewal to receive a grant in
the new year.
The information presented in our website’s “Legal Corner” section is intended to provide information of general interest to the public and should not be relied upon as legal advice or counsel. This information should not serve as the basis for any legal decision by you. The information offered is not intended to create an attorney-client relationship, and your visit to our “Legal Corner” shall not be deemed to create such a relationship. Information posted in our “Legal Corner” may not reflect recent legal developments or decisions and therefore website visitors should consult an attorney if you have legal issues requiring attention.
CVC Health Care Attorney Kristin Lough uses her background in finance and the law to help CVC patients. As part of the Appeals and Disability team, Kristin helps assist patients with insurance appeals and with applying for Social Security Disability.
Talking to Children About Illness
April 23, 2013Explain 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
Finding Support for Chronic Health through Social Media
April 18, 2013
In today’s world, the ever-increasing need for technology and immediate information has dramatically changed the landscape of managing one’s health. In a report published in January 2013 by the Pew Internet & American Life Project, 72 percent of American Internet users have gone online to look for some kind of health information in the past year. The report also found that women are more likely than men to head to cyberspace to investigate potential health issues.
Frequently, people start looking for more information with a search through Google, Bing or Wikipedia. Beyond searching for a diagnosis or information about a specific disease, people also have turned to the Web for support. Niche communities that focus on an array of health issues, such as HealthCentral, Patients Like Me, Inspire or Treatment Diaries, invite individuals to share their personal stories about living with chronic illnesses. For many, social media, especially places like Facebook, have turned into a place for support and comfort. The web offers a virtual support system for many people, battling both common and rare conditions.
Scleroderma is a relatively unknown disease that affects approximately 300,000 Americans. Most general practitioners will never see a patient affected by the disease. The same is true in far too many instances of people living with scleroderma. In my role at the Scleroderma Foundation, I increase connections of people living with the disease and help them better access the essential resources they need so they can be a more involved member of their care team. In two years, our Facebook community has tripled in size to more than 10,750 users – the largest and most active of its kind among similar scleroderma organizations. In addition, many of our 24 chapters and 150 support groups across the country manage their own social networking communities, further engaging the scleroderma community.
I attribute the Scleroderma Foundation’s online successes to several factors. First, patients are becoming more active participants in their treatment plans, and secondly, online tools like Facebook offer an improved access to health information.
“I initially reached out to online resources when I recognized that no one in my world ‘got it,’” said Teri H., a registered nurse from Texas who has lupus and scleroderma. Teri said she joined our social community because, “I have felt I was in desperate situations with these illnesses in the last couple of years and I found great comfort in being able to read others’ posts as well as be able to share on different websites.”
There are many instances where people are unable to attend a support group in their own town. A disease like scleroderma can limit one’s mobility. The psychological effects of the disease also make it hard for some to go out in public. A virtual support group offers a unique opportunity to connect with others in an intimate and personal manner.
“Social media is like a huge support group. You may not have the intimacy of being in a small group but… I have actually become friends with people who have scleroderma and are from other countries,” said Helene G., who runs a scleroderma support group in San Diego and belongs to the Foundation’s Facebook community.
When Lora K. was first diagnosed with scleroderma, she and her husband initially turned to medical professionals for support. She was surprised at what happened.
“To our shock and grave disappointment, we discovered they offered no help,” Lora said. “To our continued amazement, they offered no information. Not even a suggestion as to where we might find information,” she said. “We had no choice but to seek help and information on our own.”
Teri, Helene and Lora’s stories are just the beginning of how some people living with scleroderma – along with their caregivers, friends and family members – have gone online to empower themselves with information.
In May 2009, we began a partnership with Inspire. With their help, our global online discussion board has grown from 2,300 users in 2010, to more than 6,700 users in 2012. Last year, there were 2,877 discussions started with nearly 30,000 replies from discussion board members.
Working closely with our Programs and Services team, we review journal entries and discussion posts. The message board’s posts help us generate content for our publications and our annual patient education conference. It steers us toward what issues people are currently experiencing and ensures that we have a pulse on common concerns.
In the coming years, the trend of people turning to the web for health information will continue to grow. As access to mobile devices becomes easier and less cost-prohibitive, online communities will see membership numbers surge. I predict that more medical professionals will take part in online discussions as their comfort levels and confidence increase, as well. This will help change the dynamic in the benchside setting, causing doctors and patients to be engaged members in one’s care plan.
Christina Relacion is the Communications Manager at the Scleroderma Foundation’s National Office, located in metro Boston. Her primary interests include website production and social media. Her work has been recognized by the Wisconsin Healthcare Public Relations and Marketing Society, the Association of Marketing and Communications Professionals and other professional organizations. Christina has presented across the country on topics including social media, public relations and website management.
