Nashville-based country music artist, Doug Briney and the National Parkinson Foundation have partnered for the release of Briney's "Parkinson's Song." Briney will donate a portion of the single's sales to the organization, and he will perform at live events, benefiting Parkinson's. "Parkinson's Song" was written by Briney and Howie Garoutte, a Parkinson's survivor. It was recorded at SweetSong Nashville with producer, Dennis Money (Dolly Parton, Bill Anderson.) The single is available for preview and download on itunes, amazon, and all major online retailers. It can also be downloaded from Briney's website at http://www.dougbriney.com.
Parkinson’s disease is the second most common neurodegenerative disease after Alzheimer’s, affecting about one million people in the United States and an estimated four million worldwide. The Center for Disease Control rated complications from Parkinson’s disease as the 14th leading cause of death in the United States. The prevalence of the disease is expected to increase substantially in the next 20 years due to the aging of the population in the U.S., Europe and globally, as well as an increase in the age-related incidence of the disease. The economic burden of Parkinson’s disease is estimated to be over $14 billion annually in the U.S. — $8.1 billion in medical expenses and $6.3 billion in indirect costs attributed to Parkinson's disease.
For over half a century, the National Parkinson Foundation (NPF) has focused on meeting the needs in the care and treatment of people with Parkinson’s disease (PD). NPF has funded more than $189 million in care, research and support services.
In each of their research, education and outreach programs, NPF is dedicated to promoting their passionate belief that the best care is a comprehensive approach that addresses the whole person and the full range of symptoms of the disease, while continuously searching for the next insight that will change the course of this devastating disease. For more information, visit http://www.parkinson.org.
Doug Briney is a Nashville-based country artist and pastor. Signed with Tate Music Group, Doug has released two albums, It’s All Country and Super Country Cowboy. He is an Award-winning artist who has toured the country from Alaska to Alabama, winning an Independent Country Music Association Award for Best Live Performance and Best Video at the International Music and Entertainment Association Awards. He has appeared at CMA Fest, Hard Rock Cafe Nashville, Silver Dollar Saloon, Nashville Palace, Iditarod (Alaska), and the Alaska State Fair, performing alongside Bobby G. Rice, Georgette Jones, Ashton Shepherd, Billy Yates, Lulu Roman and many others. He is a Musicians On Call artist, performing for patients in Nashville hospitals. Doug is currently climbing the airplay charts with "Pretty Big Deal." For more information, visit http://www.dougbriney.com.
Welcome to Our Parkinson's Place
I copy news articles pertaining to research, news and information for Parkinson's disease, Dementia, the Brain, Depression and Parkinson's with Dystonia. I also post about Fundraising for Parkinson's disease and events. I try to be up-to-date as possible. I have Parkinson's diseases as well and thought it would be nice to have a place where updated news is in one place. That is why I began this blog.
I am not responsible for it's contents, I am just a copier of information searched on the computer. Please understand the copies are just that, copies and at times, I am unable to enlarge the wording or keep it uniformed as I wish. This is for you to read and to always keep an open mind.
Please discuss this with your doctor, should you have any questions, or concerns. Never do anything without talking to your doctor. I do not make any money from this website. I volunteer my time to help all of us to be informed. Please No advertisers, and No Information about Herbal treatments. This is a free site for all.
Saturday, April 18, 2015
Michael J. Fox made his 41st and presumably final appearance on "Late Show With David Letterman" on Wednesday. And as with many of the final round of guests on the late night show, he didn't have anything in particular to promote so much as to have a final chit-chat with Letterman, who retires in May.
Fox, who was diagnosed with Parkinson's disease in 1991, spoke candidly about the moment when his doctor informed him he had the degenerative nervous system disorder.
"It was scary," he said. "I was 29 years old and so it was the last thing I expected to hear. I thought I'd hurt my shoulder doing some stunt because I had a twitch in my pinkie. And the doctor said 'You have Parkinson's disease.' He said, 'The good news is that you have 10 years of work left.'"
But as Fox proudly announced, he's managed to keep going for more than 20. He even had a new series, "The Michael J. Fox Show," which aired for a season on NBC in 2013.
Fox, whose Michael J. Fox Foundation is working to discover more clear-cut biomarkers to diagnose people with the disease before they start to display symptoms, was amazed that the way it's diagnosed is still akin to taking a drunk driving test.
Question: My elderly father flew on
PenAir from Boston to Presque Isle, Maine. I phoned the airline ahead of time to ensure he would have wheelchair service. He has Parkinson's and is unable to walk any significant distance and the disease has affected his cognitive functions to a degree.
On his return trip from Presque Isle to Boston, he approached the ticket counter on foot and due to the close proximity to the gate he was not offered a wheelchair. He had a small, wheeled suitcase as his carry-on, but due to the small size of the PenAir plane it could not be brought into the cabin. When the agent checked him in, she handed him a small ticket that she said was to be used for retrieving his carry-on luggage when he arrived in Boston and took his suitcase away. He then went through security screening and waited at the gate.
During the flight, an agent at PenAir from Presque Isle phoned me to tell me that my father had left his luggage behind. We determined that while his medication was not left in the bag, his hearing aid was. My father is unable to hear without use of his hearing aid. I worked to set up an overnight delivery of the bag and the PenAir agent was kind enough to deliver it to the UPS office after I faxed over the shipping label.
The total cost of shipping his luggage to California was $237. I am requesting a refund for this expense. My father was under wheelchair assistance request and as such, I would hope that the airline would assist with his boarding, including assuring that he brings his bags on board. I believe the ultimate responsibility for the safe passage of my father and his single carry-on item rests with PenAir. Can you help me get reimbursed for the cost of shipping his carry on?
— Liz Chassé-Crouse,
Answer: Chassé-Crouse tried ahead of time to ensure her father's long travel day would be as easy as possible by requesting wheelchair assistance from PenAir, a commuter airline with hubs in Anchorage and Boston. That's a free service that PenAir and other airlines offer travelers who need additional help transiting the airport. The service would have helped him manage his luggage, too.
"A passenger requiring wheelchair assistance has the option of holding onto their carry-on (in their lap while in the wheelchair) or our agent can assist in getting the bag to the security checkpoint, and onto the aircraft," says PenAir's chief operating officer, Dave Hall.
But while airlines will provide wheelchair assistance to anyone who has difficulty making it to the gate, they don't provide assistance to passengers who may have some cognitive issues, says disability travel expert Candy Harrington, author of several books on barrier-free travel.
And as it turns out, Chassé-Crouse's father was on his own once he left the check-in area. When PenAir reviewed Chassé-Crouse's complaint, the airline determined that her father had declined wheelchair assistance at Presque Isle. The distance from check-in to the
Transportation Security Administration (TSA) security checkpoint is no more than 30 feet, according to the airline.
Getting an older parent to accept assistance can be challenging, according to Harrington, especially if they think it's only a short distance or that they don't really need the assistance.
"There is just nothing you can do to force a relative to use an airport wheelchair," says Harrington. "Sometimes it's like walking on eggshells."
Due to space limitations on the aircraft, PenAir required that Chassé-Crouse's father's gate check his carry-on, rather than bring it into the cabin. The check-in agent tagged the bag with the airline's blue carry-on label, and explained that he was to leave it planeside when boarding and to collect it upon arrival in Boston, but did not take the bag from him, according to PenAir. While waiting for TSA screening to start, Chassé-Crouse's father apparently forgot his carry-on in the lobby seating area.
Although every Parkinson's disease situation is unique, the stress of travel can make Parkinson's symptoms more pronounced, including cognitive issues, according to Linda Pituch, senior manager of patient services at the Parkinson's Disease Foundation.
Of course, the stress of travel leads people of all abilities to leave things behind. The TSA alone collects thousands of forgotten bags, cellphones, laptops, sunglasses and more from the 60 million people who fly each month. The catalog of misplaced items in airports and planes, hotels and rental cars can be downright bizarre -- and valuable.
Fortunately, Chassé-Crouse's father's left-behind bag was spotted in the Presque Isle airport by a TSA agent, who brought it back to PenAir.
From there, the normal procedure would have been to first do a security screening of the bag and then send it onward to his connecting carrier in Boston, according to Hall. But when a PenAir agent looked in the bag to identify it, she found that it contained items that the airline assumed he needed, says Hall. That included his hearing aid, without which he had trouble communicating.
In order to expedite delivery of the bag to the address Chassé-Crouse provided, and not just to the airport, PenAir worked with her to send it overnight. A PenAir agent even drove several miles to drop it off for delivery.
"If we had forwarded the bag via normal procedures, it wouldn't have gotten to the
San Francisco airport for at least a day or more," says Hall.
PenAir agreed to take a second look at Chassé-Crouse's complaint, and offered to reimburse her for the $237 in shipping costs.
"We have made a special exception to cover the costs of shipping the bag," says Hall. "We care about our customers and are sorry Mr. Chasse left his carry-on item behind, and are happy to make this service gesture in shipping the bag."
How can you avoid trouble?
• Escort travelers with special needs all the way to the gate. Airlines can issue gate passes to parents bringing unaccompanied minors through security and all the way to the gate. Likewise, family members or companions can also conduct people who need assistance, such as elderly parents or spouses.
"This is authorized under the Aircraft Operator Standard Security Program and it's been our experience that it is usually approved and a rather seamless process," says TSA representative David Castelveter. The accompanying family member needs to request the gate pass from the airline and present valid identification. The airline runs the information through the TSA's Secure Flight program, and issues a gate pass. Airlines issue these gate passes, not the TSA, but the latter can help answer questions and facilitate the process with airlines. Travelers can contact the TSA at (866) 289-9673 or via e-mail at TSA-ContactCenter@tsa.dhs.gov.
• Discuss travel with the doctor. Travelers with Parkinson's disease may do better with medication adjustments on the day of travel, under the supervision of their physicians, according to Pituch. Timing travels well is also important, since Parkinson's symptoms can be worse at specific times of the day, she says.
• Attach a note to the ticket information of the traveler requiring wheelchair assistance. Describe his or her carry-ons in detail, so it's easier for attendants to keep track of luggage when the traveler with Parkinson's might not remember to share those details, says Pituch. Make sure luggage has contact information both inside and out.
• Call the
Parkinson's Disease Foundation's toll-free Help Line for additional tips and support at (800) 457-6676.
• Go along for the trip. For some aging parents or travelers with cognitive issues, traveling alone may simply become too difficult. "There may be some resistance on the part of the parent to have someone accompany them, so my best advice is just to make it sound like it will be a fun trip for the both of you," says Harrington.
Friday, April 17, 2015
In my last article, I discussed the signs, symptoms and consequences of Parkinson's disease. Much like many other degenerative neurologic processes, Parkinson's presents many challenges to the person affected and to the caregivers as well.
The focus after diagnosis, which can be challenging, is often aimed at treatment of the movement complaints, while the other symptoms can prove to be just as debilitating. These other symptoms — which can include pain, depression, anxiety, hallucinations, and memory and focusing problems — can lead to stress in both the person affected and the caregiver. Caregiver depression is often directly related to patient depression.
Caregivers often complain that they are overlooked and ill-equipped to provide care to their loved one. Many feel thrust into the role with little attention given to their needs. Many may feel that they are just "expected" to jump in and provide care with little preparation for what will be expected of them, as well as anticipatory guidance for what challenges they may face.
In an article entitled "Quality of Life in Caregivers of Parkinson's Disease," caregivers were noted to have increased depression scores, poor social lives and low quality-of-life scores. Another study published in the South African Journal of Occupational Therapy in particular cites isolation, lack of time, feelings of powerlessness, stress, financial concerns and feeling physically drained as the most common experiences of caregivers.
Parkinson's is progressive and the course for each patient is different. Not all who are affected will experience the exact same symptoms at the same time. Some may experience symptoms occurring at different levels of intensity, and the progression may vary from one person to another. With so much uncertainty, the emergence of new symptoms may take the person affected, as well as the caregiver, by surprise. Unless they are prepared.
Particularly challenging is the sleep disturbance that often accompanies Parkinson's disease. Special attention to quality of sleep and bedtime routines is important for quality of life. Vivid dreams may interrupt sleep and contribute to decreased quality of sleep. The sufferer's quality of sleep often affects the caregiver's quality of sleep. Hallucinations can be particularly difficult to control and distressing for both patient and caregiver.
What can the family affected by Parkinson's disease do to increase quality of life for all involved? As previously acknowledged, caregivers are often the most overlooked while being a crucial part of the care team. Managing caregiver stress requires the caregiver to reach out to those around them: family, friends, social circle, and community resources to provide support.
I find an effective means for the primary caregiver (whether a spouse, child, relative or friend) to connect with other family members is to communicate via a family meeting. The experiences of various family members are often very different. When all involved are connected in person in the same room and/or via a conference call, everyone can have the opportunity to share their thoughts, concerns and suggestions for solutions.
When family members are at a distance, it can be particularly difficult for those family members to feel connected and have a full understanding of what daily life looks like for the immediate caregiver. Unfortunately, long-distance family members may have unrealistic expectations of the local caregivers and an altered view of what's really happening. This results in additional stress for the caregiver(s) who is/are doing the daily work.
If a hospitalization takes place, the most all-inclusive approach may be to involve your local palliative care team. Palliative care is often mistaken for hospice care and consequently overlooked as an option for comprehensive long-term planning. Carroll Hospital Center offers palliative care to complement on-going treatment for the symptoms of Parkinson's or any chronic disease process. This excerpt from the Carroll Hospital Center Palliative care brochure best explains what palliative care offer:
What can the palliative care team do for patients and families?
•Provide emotional and spiritual support
•Collaborate with nurses and physicians to address the management of symptoms, such as pain, shortness of breath, nausea, fatigue and anxiety
•Educate to promote understanding of the underlying disease process
•Provide easy-to-understand explanations of difficult medical conditions
•Improve care when provided simultaneously with optimal medical management
•Coordinate care between multiple providers and consultants
•Assist in establishing goals of care and priorities
•Assist with advance directives
•Ease transition out of the hospital using a multidisciplinary approach
Caregiving is a demanding and challenging endeavor. Self-care is so important for caregivers. Take a break, get help, create a "helper list " now so that if you need help you can go to the list of all the people who have offered to pitch in and access it quickly.
Some other self-care ideas for caregivers include: Create a folder or book to organize medical records and include a question page for the doctor or health care professional, let go of feelings of guilt, attend a support group, talk about your feelings with a trusted friend, and take care of your own health needs. These are just a few of the suggestions for caregivers to decrease the stress of providing care. Remember caring for another requires caring for yourself as well.
Jill Rosner is a registered nurse, certified geriatric care manager and owner of Rosner Healthcare Navigation. She provides patient advocacy and care management services to clients with health and aging issues. Contact her at JillRosnerRN@aol.com.
Caregiver Distress scale and Caregiver stress inventory: http://www.parkinson.org
Caregiver Alliance Caregiver Self Care: Caring for You: http://www.caregiver.org
Carroll Hospital Center palliative Care call 410-871-7890 or visit http://www.CarrollHospitalCenter.org/palliative-care
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