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NEWS JUST FOR YOU!

If you have any news you want to report CONTACT US and we may include it on our website.

VISIT OFTEN - We Are Always Updating This Page With "New" News Just For You!!

Please note that the content on our website is offered to our readers solely on an informational basis.  The Columbia Parkinson's Support Group does not research or investigate further any published articles or stories we have included.  We do not provide additional follow-up to verify that they are anything other than informational.  We urge you to do your own follow-up on any of the information found in our newsletter. Please use caution when "surfing" the internet and any website!

Reverend Charles Martin Blackmon, 92, of Rock Hill, SC

The Columbia Parkinson's Support Group was very sorry to hear of the passing of one of our long-time Parkinson's support group members, the Reverend Charles Martin Blackmon, 92, of Rock Hill, SC, formerly of Columbia, SC.

We knew him as Charles. He always took time to say "Hello" to everyone at our support group meetings. He always asked thoughtful questions of our speakers, and freely shared comments about his own journey with Parkinson's. Charles had a warm smile and kindness for everyone. Our thoughts and prayers are offered to his loving family and friends as they grieve for their loss. Charles will be missed.

One of the more interesting facts of Charle's life is that he served with distinction as an Administrative Staff Sergeant in WWII from 1944-1946, European theatre, on the staff of General George S. Patton during the liberation of the Jewish concentration camps.

Charles was a very loving, caring husband and father. He was an exceptional inspiration to all who met him. You can read more about Charles at this link: http://tinyurl.com/qfc5vzy

Memorial donations can be made in the name of Reverend Charles Martin Blackmon to the Columbia Parkinson's Support Group. Click here to make a donation www.columbiaparkinsonsupportgroup.org/donation.html

ARE YOU LOOKING FOR THE PERFECT GIFT TO GIVE?
  • Birthday
  • Wedding Anniversary
  • Mother's Day
  • Father's Day
  • Valentine's Day
  • Christmas
  • Kwanzaa 
  • Hanukkah/Chanukah
  • or any holiday, celebration, or special occasion

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Gift Giving can sometimes be a stressful challenge. Often we purchase items without fully knowing whether the recipient will use them. Simplify your gift giving with a charitable gift of a donation to the Columbia Parkinson's Support Group in "Memory Of" or "In Honor Of" of an individual. Or you can give "In Support Of" the Parkinson's community. We will send an appropriate gift card acknowledging your donation.

Your gift of a donation will allow us to continue with our mission of providing Support - Information - Education - and Awareness about Parkinson's disease for Parkinson's patients, their caregivers, and others who have an interest in Parkinson's.

Click here to make your donation gift?

Click here to learn what we do as a support group, and how we use your donations [Note: This page may be slow to load due to videos on the web page]

Very Important! If you are on medicare or have a loved one on medicare
"Very Important.. If you are on medicare or have a loved one on medicare....please watch this video.   It could save you thousands of  dollars if you go to the hospital.  It appears that if you are admitted into the hospital with the words, "Under Observation", you could be responsible for large hospital expenses.  Insist on the "In Patient" designation." Provided by NBC Nightly News - January 9, 2014 - Brian Williams

CLICK ON LINK BELOW: Note there is a brief commercial ad before the segment.

http://www.nbcnews.com/video/nightly-news/54026469/#54026469

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The South Carolina Assistive Technology Program is on Facebook!

The South Carolina Assistive Technology Program needs your help to share information about our activities and services. Please help them promote their page in the following ways: ·        

Go to https://www.facebook.com/scassistivetechnologyprogram and “Like” our page.
       

SCATP would like to suggest that you "share the page with your friends by clicking the "Invite friends" link and manually select your friends who would be interested in their page. Please take the time to do this! It makes a huge difference. If you can add a personal message, that’s great, too."
       

"When you see a post on our Facebook page, take the time to select “Share” so the information can go on your Facebook page, too.  With everyone’s help, we can promote the upcoming Expo, our trainings, and any information we have to share. We can all make a difference in the lives of people with disabilities and age-related limitations. Our Facebook page has a huge potential to impact equipment reuse in South Carolina. Keep checking our SCATP web page and AT Expo page, for updated information!" 

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Anti-Constipation Paste/Tea -- Provided by Dr. Christina L. Vaughan
At our November 17, 2013 Columbia Parkinson's Support Group meeting, guest speaker Dr. Christina L. Vaughan gave a presentation on non-motor symptoms of Parkinson's Disease. The non-motor topic of constipation was discussed as being not only uncomfortable, but also can be medically dangerous for Parkinson patients. Dr. Vaughan mentioned that she had an anti-constipation paste/tea recipe, which she recommends to some of her patients. Below is the recipe:

"Dottie, As promised, here is the recipe for the anti-constipation paste to make a tea for drinking. I do not recall who created this, but I offer the recipe to patients as needed – many find it helpful, though not all. Definitely worth trying!  Kind regards, Dr. Christina Vaughan"

ANTI-CONSTIPATION PASTE:
1 pound pitted prunes
1 pound raisins
1 pound figs
3.5 - 4 ounce package of Senna tea
1 cup brown sugar
1 cup lemon juice 

To prepare anti-constipation tea: Use about 3.5 cups boiling water to a package of tea - steep for 5 minutes.
Strain tea and add 2 cups to large pot. Add fruit to pot. Boil tea and fruit for 5 minutes.
Remove from heat. Add sugar and lemon juice. Cool.
Puree with food processor or blender. 
Freeze in glass jars or plastic containers.
Take 1-2 tablespoons daily.

[Dottie's suggestion: Rather than having to thaw out a whole frozen jar or plastic container of the constipation tea liquid - perhaps put some of the constapation tea liquid in each of the individual cube compartments of an Ice cube tray - freeze the whole ice cube tray. Then when frozen, pop-out the frozen cubes into a freezer zip-lock bag, and put back in the freezer. You can remove and thaw out as many cubes as needed. If you have difficulty finding "Senna Tea" - we found some at our local health foods store.]

Christina L. Vaughan, MD, MHS
Assistant Professor, Department of Neurosciences
Associate Director, Movement Disorders Program
Medical University of South Carolina
326 Calhoun Street
Suite 308/MSC 108
Charleston, S.C. 29425
(o) 843 792 7262
(f) 843 792 1751 


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Carla Cozart, of Abbeville, who had both ovaries removed instead of one, encourages patients to speak up when something goes wrong. An education campaign will help inform South Carolina residents how to avoid hospital errors and infections. - See more at: http://states.aarp.org/protect-yourself-from-hospital-errors/#sthash.5SPklBks.dpuf

Carla Cozart says she now knows the value of asking tough questions and holding health care providers accountable.

After insisting that one ovary be left intact during her hysterectomy five years ago, she awoke to find both ovaries had been removed.

- See more at: http://states.aarp.org/protect-yourself-from-hospital-errors/#sthash.5SPklBks.dpu

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Uncle Sam



















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PROGRAM CHAIR WANTED
Like any other support group, our monthly programs, and services are made possible because of our wonderful volunteers, who donate their time, their many talents, resources, and other types of contributions.   

We believe that periodically having a change of members on our Board and on our committees is healthy.  We believe that having new people will help create "fresh ideas" for meeting our mission goals.  Currently we need a new "Program Chair" to coordinate and organize the scheduling our speakers and programs.  As "Program Chair", you will always have assistance from other members on our Board and on our committees.  You will receive speaker and meeting suggestions/ideas from our meeting Feedback Forms, suggestions from our members, and from other sources.  We already have forms, letter templates, and checklists ready for your use to assist with organizing and coordinating our speakers and meetings.  There is a team of willing volunteers available to help set-up our meeting space before our meetings, and to provide any other assistance needed.

A "Program Chair" volunteer can be a PD patient, a caregiver, or just someone interested in Parkinson's disease.  As a volunteer, you can share your experience, skills, talents, and learn new skills.  As a volunteer, you will have the opportunity and to experience and meet some very special people in the Parkinson's community, and those who provide services to the Parkinson's community. 

If you are interested, and want more information about volunteering to be our "Program Chair", please feel free to contact Carol Baker or Dottie Gantt.

Carol Baker, Vice President
Telephone 803-781-6193
Email:  caroltbaker@bellsouth.net


Dottie Gantt, President
Telephone: 803-604-0061
Email: contact@columbiaparkinsonsupportgroup.org

Five Important Questions To Ask Your Neurologist
"You've waited weeks to see your neurologist. When you arrive, he/she conducts a physical examination and asks about your symptoms since the last visit, all of which is vital. But when you or a family member has a chronic or life-threatening neurologic condition—such as Parkinson's disease (PD), Alzheimer's disease (AD), multiple sclerosis (MS), or a brain tumor—the concerns that keep you up at night might not make it into those discussions. Maybe you're concerned about your job, but you can't seem to find the right opportunity to bring it up. Here are the five questions that neurologists think patients should ask to get the best possible care."

Visit this link to read the NeurologyNow article [June-july 2013, Volume 9(3), p 20–26] http://tinyurl.com/o9kkr2e

A Suggestion: Make a list of your questions before your visit your neurologist - pull it out - and go down each item, one-by-one. Have a family member, caregiver, or friend write down the doctor's answers to your questions, so that you can review everything when you get home.


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Important Medicare Changes For PD Patients (Information provided by the Parkinson's Action Network)
Important Medicare Changes For PD Patients (Information provided by the Parkinson's Action Network) Effective January 7, 2014, Medicare beneficiaries can no longer be denied coverage for physical, occupational, and speech-language therapy services solely for lack of improvement. 

In 2011, the Parkinson's Action Network (PAN) joined a class action lawsuit against the Center for Medicare and Medicaid Services (CMS) over a standard for Medicare coverage that we believed discriminated against people with Parkinson's and other chronic degenerative diseases. The standard, commonly referred to as the Improvement Standard, required Medicare beneficiaries to show improvement to continue physical, occupational, and speech-language therapy services.

For a degenerative disease like Parkinson's, therapy is not a cure, but it is a treatment option that can improve quality of life and help maintain independence.  The lawsuit reached a favorable settlement in January 2013, and CMS was given one year to update its policy manual as well as develop and implement a nationwide education campaign for all who make Medicare determinations.

This will help ensure that beneficiaries with chronic conditions are not denied coverage for critical services because their underlying conditions will not improve. If you or your therapist has questions about the policy manual changes, we suggest you review and discuss this CMS summary of the changes. Visit this link for more information http://tinyurl.com/mfmsn6w


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VA Expands Benefits for Vets with TBI & Parkinson's
The Department of Veterans Affairs (VA) just finalized a new regulation that will make it easier for some veterans with moderate or severe traumatic brain injury (TBI) who also have parkinsonism, including Parkinson's disease, to receive additional disability pay. This will enable the VA to decide these claims more expeditiously and efficiently.Visit this link for more information. http://www.nwpf.org/News.aspx?Item=4381 

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Hand Jive -or- It Is All About Your Hands
Read this NPF article in PDF format for interesting information and several tips about enhancing hand coordination http:// tinyurl.com/pd3va8q This article is for everyone.

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The "A" List For Caregiver / Care Partner Survival
Assess your own situation realistically. Your situation is unique and what works for one does not necessarily apply to others. And avoiding the real situation only prolongs finding solutions to problems.

A
ccept
the things you can not change. The first step is to come to terms with what can't be changed so that you can work on the things that can be changed to benefit you and your loved one. And remember you can not change others; you can only change yourself and how you cope with things.

Admit to negative feelings; anger, anxiety, frustration, and burden are all feelings that are possible when you are a caregiver. Once you own them, you can manage them much better. These feelings are a warning signal that you need help. Remember that you are human, too!

Acknowledge your strengths and your limitations. Caregivers often focus on what they think they aren't doing and fail to give credit for what they do. And you do so much!

Acquiesce that you can't control everything! Yet we spend a lot of valuable energy trying to, at a very high cost. Giving up the need to control will help to fine tune your expectations to a realistic level.

Abandon "all-or-nothing" thinking. There is a middle grou
nd where everyone wins something. ("I have to be available to my loved one 24/7 or else I have failed him/her." Think instead, "I will do as much as I can, but I have to take care of myself to be able to provide the care he/she needs.")

Avoid the "Fix-It" syndrome. Another form of control.
("My loved one isn't happy and I must 'fix it' for him/her!")


Appreciate the good times, past and present. The simple act of letting go is a blessing.

Allow others to help. This is not the time to become a martyr. Look to family
, friends, church, and professionals to help carry the load.


Attend to your own needs: emotional, physical, spiritual. Putting your needs first will give you the strength and energy to carry on. Who will provide the care if you are no longer able?

Provided by Debbie Kelly. LMSW, C-ASWCM of Geri-Advocates Care Management of Columbia SC
http://www.geriadvocates.com

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Ten Things I Wish I Knew When I Was Diagnosed - Source is PDPlan4Life.org
  1. Seek out a movement disorders specialist (MDS) -- a neurologist who has advanced training in treating Parkinson's disease.
  2. Learn all you can about PD so you can partner with your doctor to develop a treatment plan that best manages your symptoms with the fewest side effects.
  3. Be aware that your eligibility for clinical trials of potentially neuroprotective treatments is greatest prior to your starting on Parkinson's meds. Make the most of this small window of time by checking Fox Trial Finder and PD Trials for studies currently enrolling "de novo" or newly diagnosed patients not yet being treated for PD. Consider joining the Parkinson's Progression Markers Initiative (PPMI).
  4. Continue your normal daily activities for as long as you can. Do not make Parkinson's the focus of your life.
  5. Make physical and mental exercise part of your daily routine to help you remain active and independent and enjoy a better quality of life for longer.
  6. Build a support network by telling family and friends what you need from them. They cannot read your mind.
  7. Live in the moment. Focus on what you can do, not what you can't.
  8. Maintain a positive attitude.
  9. Keep your sense of humor. Learn to laugh at yourself.
  10. Never lose hope for a cure.

    PDPlan4Life.org is an interesting website. The website was created by two individuals with PD. The information on the website is from a PD patient's perspective.

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"My happiness grows in direct proportion [to] my acceptance and in inverse proportion to my expectations." Michael J. Fox

Flu You Too?

Man Receiving Shot Woman Receiving Shot Man Receiving Shot Woman Receiving Shot
Influenza (flu) can make pneumonia infection more likely - especially for Parkinson patients. 

Try to avoid people who have colds or the flu.  Ask them to visit you when they are feeling better  Do not wait for symptoms to worsen, as you may develop an emergency condition.  Eat a healthy diet, exercise, and get plenty of rest.  Contact your doctor if you think you have cold or flu symptoms. 

It is suggested by many doctors that Parkinson's patients get a viral influenza (flu) vaccine (shot) each year.   Flu vaccines are prepared annually in anticipation of that year's virus strain. 


What kind of flu vaccines will be available in the United States for 2013-2014?
There are several flu vaccine options for the 2013-2014 flu season.  Traditional flu vaccines are made to protect against three different flu viruses (called “trivalent” vaccines) are available.  The trivalent flu vaccine protects against two influenza A viruses and an influenza B virus.
 

This flu season, there are flu vaccines also available that have been made to protect against four different flu viruses (called “quadrivalent” vaccines).  The quadrivalent flu vaccine protects against two influenza A viruses and two influenza B viruses.  Ask your doctor if you should get the “quadrivalent” vaccine instead of the regular flu vaccine.

The CDC (Centers for Disease Control) does not recommend one flu vaccine over the other.  You should consult your medical provider as to whether or not you should get a flu vaccination; and if so, which vaccine type you should get. For more information about flu vaccines 
http://tinyurl.com/p4ux9r9

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Cognition and Parkinson’s: What You’ve Always Wanted to Know
By Alexander Troster, Ph. D. [Dr. Tröster is Professor of Neurology at the University of North Carolina-Chapel Hill.]
"Traditionally, Parkinson’s disease (PD) has been known as a movement disorder, characterized by such symptoms as tremor and slowness of movement. Increasingly, it is becoming recognized also for its nonmotor characteristics, including cognitive difficulties. For many people with Parkinson’s, these problems can be especially distressing, and can also be among the toughest to bring up with their doctor and their families." "Cognition is a bit difficult to define, because it covers several different mental skills and activities. It generally refers to the brain processes through which we discover and understand the world around us, and how we apply that knowledge from day to day. These include: making sense of perceptions; storing and retrieving memories; learning things; forming concepts; solving problems; planning activities; language; achieving insights; and abstract thinking."

To read the rest of this article click on this link http://www.pdf.org/summer11_cognition_and_pd


This Article Had Some Excellent Tips for Care Partners
  • Offer help only when your loved one asks for it
  • Prompt the person — for example, instead of asking, “Did anyone call?” ask, “Did Linda call?”
  • Say the name of the person and make eye contact when speaking to them, to gain and hold their attention
  • Put reminder notes in a prominent place
  • Keep things in routine places
  • To ensure medications are taken on time, provide the person with a dispenser, perhaps with a built-in alarm
  • Use photos on cell phone contact entries to prompt face-name association
  • Write lists and keep them in a routine place
  • If the person is searching for a word, provide a cue, such as, “the word you are looking for probably begins with ‘d’”
  • Do not finish the sentences of a person who needs more time to put them together
  • When presenting the person with a list of actions, first verbalize them, then write them down
  • Ask the person questions in order to moderate the pace of conversation and allow them an opportunity to pause, catch up, think and reinforce
Dr. Tröster first presented this topic at one of PDF’s PD ExpertBriefings. If you missed the six-part series in 2011, just order a set of free DVD's or watch online at anytime.
www.pdf.org/en/parkinson_briefing_cognition

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The 10 Commandments of Health - Give 5% of your time to keeping well, and you won't have to give 100% getting over to being sick.

By Dr. George W. Calver - In 1928, the US Congress' first appointed doctor.
While Dr. Calver's list was created many years ago, the current medical community acknowledges that his 10 Commandments of Health are true for today.

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  • Eat Wisely
  • Drink Plentifully (of Water)
  • Eliminate Thoroughly
  • Bathe Cleanly
  • Exercise Rationally
  • Accept Inevitables (Don't Worry)
  • Play Enthusiastically
  • Relax Completely
  • Sleep Sufficiently
  • Check-up Occasionally

SC WEB-SITES TO HELP YOU MAKE YOUR BEST HOSPITAL CHOICES

Many patients checking into a hospital simply go where their doctors recommend, or they head to the hospital closest to their home. But is that always the "best hospital" for you or your condition?

If you want to do research to help you answer this question, there is information available online. Some of the information may not always be easy to understand, but then again some is straightforward.

The SC Department of Health and Environment Control (DEHEC) compiles annual reports on hospital acquired infections. It is incredibility detailed, broken down by hospital, and condition (e.g., hip replacement or coronary bypass).

http://www.scdhec.gov/health/disease/hai/reports.htm

The federal department of Health and Human Services has a hospital comparison Web tool, based in part on patient
surveys. You can find out which hospitals offer service that satisfies patients. Enter your Zip code, City/State, etc. and you will receive the information.

Note: There is a message currently on the web page "Due to the 2013 government shutdown, Hospital Compare data could not be updated in October 2013. The data will be refreshed again on or about December 12, 2013.
" You can still enter your search information and receive valid results.

http://www.medicare.gov/hospitalcompare/search.html

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Which Are You -- the 30% -or- the 85% -or- the10%?
Which Will You Be?
Will You Help Find A Cure For PD?
Will You Help Find Ways To Improve The Quality Of Life For PD Patients?


PLEASE VOLUNTEER FOR CLINICAL TRIALS AND STUDIES

Clinical trial and study recruitment is a challenge across all diseases, and Parkinson's disease is no exception. 

  • Did you know that 30% of all the clinical trials and studies "fail" to recruit a "single" subject?
  • Did you know that 85% of clinical trials/studies "finish late" due to "recruitment troubles"?
  • Did you know that despite a willingness to participate, "less than" 10% of Parkinson patients "take part" in trials or studies?
All Parkinson's patients pay the ultimate price for "under enrollment" in clinical research -- it means longer time to achieve treatment breakthroughs.
 

We encourage Parkinson patients to please volunteer and participate in clinical trials whenever you can.  Help yourself and others in the Parkinson's community! 

Below is a Clinical Study that needs volunteers now!  You and your caregiver can each be paid $40 to play on a computer for approximately 1 hour!  Your time is not just worth $40.  Your time may help researchers understand Parkinson's better.  Your time may help lead to better treatment and care of Parkinson patients in the future.

Volunteers Are Needed Now For This University of South Carolina Clinical Study --- Get Paid $40 To Play On A Computer
Dr. Rutvik Desai, Associate Professor of Psychology at the University of South Carolina wants volunteers to participate in a Parkinson's study; and will pay $40 to play on a computer for their time and effort. 

Dr. Desai's USC lab is studying "mental function and language processing in Parkinson's disease".  The topic of "mental function and language processing in Parkinson's disease" is not very well understood.  The team hopes that the information from this study will help understand Parkinson's disease better, and could lead to better treatment and care of individuals with Parkinson's in the future.  Dr. Desai works at Palmetto Health with Dr. Faber.  They and their team will be doing the testing. 
 

Simple computer based tests will be used.  Words or sentences will be displayed on a computer screen, and you will be asked to respond to them.  For example, you may be asked to indicate whether a displayed word is a real word or not.  For "building" you would say 'yes', for "jolpding" you would say 'no'.  The total time for the testing session is about 1 hour.   

All Parkinson patients are included, except those diagnosed with dementia, and those whose native language is not English.  All PD patients will be paid $40 for their time and effort.   As a comparison to the Parkinson patients, the testing team would also like healthy individuals without Parkinson's, as study subjects in the age range 55 to 80 years old.  Spouses, caregivers, and friends of the patients are welcome to participate; they will also receive $40 for the approximate 1 hour testing session. 
Parkinson patients, their spouses, caregivers, and friends can volunteering today! 

The clinical study team needs Parkinson volunteers and healthy non-Parkinson's volunteers for this particular study.  They will schedule a time and place for the testing that is convenient for the patients and caregivers. 
 They will be happy to answer any questions anyone may have.  Interested individuals can write to SCDeLab@gmail.com with their questions or to volunteer. 

NOTE:  The Columbia Parkinson's Support Group encourages Parkinson's disease patients, their caregivers, and friends to participate in clinical studies and trials.  Parkinson's disease patients can help further the research in finding a cure for Parkinson's disease, and help to find ways for improving the quality of care for Parkinson's disease patients.  Our support group recommends that before participating in any clinical study or trial, you make an "informed decision".  Ask questions and do your own research about the study or trial before participating!


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Myths versus Reality about Parkinson's Disease
by Craig G. Van Horne

Parkinson's disease is one of the most common neurological disorders, affecting about 1 million Americans. Despite its prevalence and the increased awareness due to celebrities like Michael J. Fox who have Parkinson's, the disease is often misunderstood. The Kentucky Herald-Leader had an interesting article about what are the "myths" versus "reality" about Parkinson's disease.

MYTH or REALITY?
--- All individuals with Parkinson's disease have tremors, and tremors are always caused by Parkinson's disease.
--- Parkinson's disease causes individuals to have extra, uncontrolled movements.
--- Only one part of the brain, the substantia nigra, is involved in Parkinson's disease.
--- Parkinson's disease is strictly a movement-related disease.
--- and more myths versus reality

Click here to find out the answers https://www.nwpf.org/News.aspx?Item=4364

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A FEW TOPICS THAT MAY BE OF INTEREST TO YOU!
Carla Cozart, of Abbeville, who had both ovaries removed instead of one, encourages patients to speak up when something goes wrong. An education campaign will help inform South Carolina residents how to avoid hospital errors and infections. - See more at: http://states.aarp.org/protect-yourself-from-hospital-errors/#sthash.5SPklBks.dpuf

Carla Cozart says she now knows the value of asking tough questions and holding health care providers accountable.

After insisting that one ovary be left intact during her hysterectomy five years ago, she awoke to find both ovaries had been removed.

- See more at: http://states.aarp.org/protect-yourself-from-hospital-errors/#sthash.5SPklBks.dpuf
  • The WebMD's website has information on the "Health Insurance & Affordable Care Act" for the "South Carolina Health Insurance Marketplace" -- Each webpage has a series of menus to help answer some of your questions.  As part of the website, they will ask for you to sign-up with your email address for "insurance news and deadlines by email".  With any website that asks you to sign-up for their newsletter or email news, we suggest that you "think before you sign-up".

  • TED Talks - TED is a nonprofit devoted to Ideas Worth Spreading. It started out in 1984 as a conference bringing together people from three worlds: Technology, Entertainment, Design.  If you have never visited the TED website, we suggest that you will find a topic you are interested in just by searching for it.  TED conferences bring together the world's most fascinating thinkers and doers, who are challenged to give the talk of their lives (in 18 minutes or less).  On TED.com, they make the best talks and performances from TED and partners available to the world, for free.  More than 1500 TED Talks are now available, with more added each week.  http://www.ted.com/talks

    For example: This link http://tinyurl.com/pq598zt will take you to several talks presented by the chair of neurosurgery at the University of Toronto, Andres Lozano has pioneered the use of deep brain stimulation for treating Parkinson’s, depression, anorexia and Alzheimer’s disease. 

  •  Here Is A Comprehensive List of Caregiving Resources --- http://tinyurl.com/nhtmcrm  -- Yes, the list is on Oprah's website -- it is a very good list.  We recommend that you save this list as a website Bookmark or print it out to keep the list somewhere.

  •  "Aware In Care" YouTube Video - http://www.youtube.com/watch?v=ZYOJ4xAEw5w&sns=em  -- Watch this true story about Marty Gershe, 71, who has been living with Parkinson's for four years.  Learn how the National Parkinson Foundation's FREE "Aware in Care" kit helped him during an emergency trip to the hospital, and what you can do to get the kit, know the facts, and be "Aware in Care".  We feel that it is important for you to order your FREE "Aware in Care" kit today!  http://www.awareincare.org/

  •  "Smart Spoon Helps Stabilize Parkinson's Tremors."  -- This article is for information only.  It shows that research is looking for new ways to help Parkinson patients.  Here is the link for this story http://tinyurl.com/l4uxqcb  By the way; this is a "research spoon" that costs $295.

  •  We have already marked our calendar on September 26, to watch the debut of “The Michael J. Fox Show” on NBC.  You can watch a preview of this new show at this link http://tinyurl.com/pl9hxjt  Michael J. Fox continues to amaze us with all he does to create awareness about Parkinson's.

  •  National Parkinson Foundation - Oksana Sucherowsky, MD has interesting comments about exercise for Parkinson's patients.  Here is the link for her YouTube video http://tinyurl.com/no955bb

  •  Parkinson's Disease Does Not Discriminate - Legendary singer Linda Ronstadt, 67, has revealed that she “can’t sing a note” because she suffers from Parkinson’s disease.  Click here for more information http://tinyurl.com/kaak3ct

  •  The Parkinson Association of the Carolinas website has information about many Parkinson's related events.  We recommend that you sign-up for their free E-Newsletter via their website http://www.parkinsonassociation.org/

  • Free Webinar - Thursday, September 19, 2013 at 1:00 p.m. ET -- What is integrative medicine?  What is complementary medicine?  Learn about these topics, and how they relate to Parkinson's disease care. http://tinyurl.com/oojugqd
    Online pre-registration is required.  For more details, please call the National Parkinson Foundation Helpline at 1-800-4PD-INFO (1-800-473-4636) or email helpline@parkinson.org.

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Easier-to-button shirts born of former coach’s Parkinson’s

Article from Northwest Parkinson's Foundation

http://www.nwpf.org
Northwest Parkinson's Foundation Logo
Carla Cozart, of Abbeville, who had both ovaries removed instead of one, encourages patients to speak up when something goes wrong. An education campaign will help inform South Carolina residents how to avoid hospital errors and infections. - See more at: http://states.aarp.org/protect-yourself-from-hospital-errors/#sthash.5SPklBks.dpuf

Carla Cozart says she now knows the value of asking tough questions and holding health care providers accountable.

After insisting that one ovary be left intact during her hysterectomy five years ago, she awoke to find both ovaries had been removed.

- See more at: http://states.aarp.org/protect-yourself-from-hospital-errors/#sthash.5SPklBks.dpuf
A small gesture by a big-time quarterback inspired Maura Horton to start her own business – and to help her husband in the process.

Horton’s husband, Don, a former N.C. State University assistant football coach, has Parkinson’s disease. After one 2009 road game, the coach was having trouble buttoning his shirt. He was tired from the stress of the game, and his fine motor skills were failing him.

The team, however, was in a hurry. Only about 10 minutes separated them from the locker room and their bus. And Horton usually needed 30 to 40 minutes to dress himself.

Russell Wilson, whose own father was suffering from diabetes at the time, noticed the coach. The former Wolfpack quarterback, who now plays for the Seahawks, buttoned the coach’s shirt for him .In that moment, a business was born.

“Don came home and said he was embarrassed,” Maura Horton said. “It was the first time we had addressed his challenges because we just really didn’t talk about it.”

So she set out to create an easier way for her husband to get dressed. Ultimately, she developed MagnaReady, a line of men’s buttonless dress shirts with magnetic closures aimed to help those with limited mobility. Regular buttons show on the shirt’s front to hide the magnets.

It’s not just a business idea for Horton, 43. Above all else, she hopes the company will raise awareness about Parkinson’s.

Note: A sample of the MagnaReady shirts was brought to our July 2013 meeting. www.magnaready.com

Click here for the rest of the story

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Protect Yourself From Hospital Errors --- AARP Bulletin July-August 2013 --- Article By Katrina Goggins
Carla Cozart, of Abbeville, who had both ovaries removed instead of one, encourages patients to speak up when something goes wrong. An education campaign will help inform South Carolina residents how to avoid hospital errors and infections. - See more at: http://states.aarp.org/protect-yourself-from-hospital-errors/#sthash.5SPklBks.dpuf

Carla Cozart says she now knows the value of asking tough questions and holding health care providers accountable.

After insisting that one ovary be left intact during her hysterectomy five years ago, she awoke to find both ovaries had been removed.

- See more at: http://states.aarp.org/protect-yourself-from-hospital-errors/#sthash.5SPklBks.dpuf
Carla Cozart, of Abbeville, who had both ovaries removed instead of one, encourages patients to speak up when something goes wrong. An education campaign will help inform South Carolina residents how to avoid hospital errors and infections.

South Carolina is one of five states selected by the Informed Patient Institute (IPI) for a campaign to educate residents about how they can help prevent hospital infections. Available online on http://informedpatientinstitute.org/index.php the campaign’s tip sheets provide information specific to South Carolina about keys to quality care in hospitals, in nursing homes and from doctors. They also provide state-specific details about patient rights.

See more at this link http://states.aarp.org/protect-yourself-from-hospital-errors/

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Going To The Dogs
Service DogsService DogsService Dogs
Did you know that there are "service dogs" for PD patients much like the "service dogs" for the blind and other disabilities? 

An excellent article about service dogs starts with ... "Have you been thinking that a service dog may be of use to you in your everyday life with Parkinson’s? Or are you not sure? And if you do want one, how do you go about getting one? Service dogs can be quite helpful for people with Parkinson’s disease in many ways. One of the most important is animal companionship has long been shown to help lessen and combat depression, which is a very common symptom of Parkinson’s. Dogs can also improve gait by maintaining a steady walking pace, and can be trained to bring a person out of a freeze. Additionally, dogs require regular exercise, forcing a person with Parkinson’s to have to get out of the house...."  To read the rest of this article go to http://tinyurl.com/k2oeqzw

Another resource for service dog information is at  www.parkinsonswalksd.com 

For listings of service dog web sites in the southeast go to http://tinyurl.com/ldy2ef6

Assistance Dogs International, Inc --- This organization offers a website-only membership directory of Service dog providers in the USA. Dogs trained in 'Service' work can help address some of the challenges associated with PD such as lending balance support, picking up dropped or requested objects, assisting in medical crisis and more. To find local accredited Service dog providers, click on 'Membership Programs List & Link' and then 'Accredited Members.'
Email: info@assistancedogsinternational.org  Website: www.assistancedogsinternational.org

Updated Post by PDF on April 07, 2011  

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What Is Going To Happen To Me Next?
When a diagnosis of Parkinson's disease (PD) is made, one of the first questions asked is, "What is going to happen next?"   

On our website we have listed many resources about Parkinson's -- Visit our web page link for "WHAT IS PARKINSON'S DISEASE?"  www.columbiaparkinsonsupportgroup.org/what_is_pd.htm  (This link can be found as one of the links on the left-hand side of our web site pages.) 

Dr. Ronald F. Pfeiffer presented an article on the topic of "Understanding the Progression of Parkinson's Disease" as one of the Parkinson Disease Foundation ExpertBriefing presentations - You will have to register to be able to view the video when you go to
http://tinyurl.com/m4sfd4z -- Or, you can just view the PowerPoint slides from the presentation at this link http://tinyurl.com/ltqz226

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$100 Million Initiative To Map Human Brain

Published on Apr 2, 2013 on YouTube, a video of President Barack Obama unveiled the BRAIN Initiative, a new collaborative effort to map the human brain and better understand how it works. BRAIN stands for Brain Research through Advancing Innovative Neurotechnologies. Using new neurotechnology, scientists will be able to understand how activity in specific cells in the brain affect behavior. To watch this video click here http://www.youtube.com/watch?v=Ol4SUlpXxXc

"President Obama has proposed a Brain Activity Map (BAM) project to reveal some of these remaining secrets, using the Human Genome Project as a model. Not all scientists, however, are on board..." This article has additional information about brain research, etc. Read more here http://tinyurl.com/bcbs62l

Article from the Northwest Parkinson's Foundation web site.
Reported in the Seattle Times by James Gormanjohn Markoff - "President Obama on Tuesday will announce a broad new research initiative, starting with $100 million in 2014, to invent and refine new technologies to understand the human brain, senior administration officials said Monday.

A senior administration scientist compared the new initiative to the Human Genome Project, in that it is directed at a problem that has seemed insoluble up to now: the recording and mapping of brain circuits in action in an effort to “show how millions of brain cells interact.”

To read more of this article click here http://www.nwpf.org/News.aspx?Item=4244

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Very Important Change In
Medicare Coverage of Outpatient Physical, Occupational and Speech Therapy!
(Includes Parkinson Patients Care)

Summary --- After a recent settlement of a class action lawsuit, Medicare will begin paying more often for therapy for those with disabilities and chronic conditions, including Alzheimer's and Parkinson's disease. The settlement ends Medicare's practice of requiring that patients show improvement for their treatment to be covered - which was a generally impossible standard for people with degenerative diseases. Medicare is also revising its policies to ensure that in-home, nursing home and out-patient coverage in such cases is available.

The information provided below is from the Medicare
web site.

"Medicare covers therapy services that help you maintain your ability to function. Medicare also covers therapy services that prevent you from getting worse or that slow worsening symptoms. If you meet the requirements below, Medicare should cover your outpatient therapy whether or not your condition is temporary or chronic and whether or not you need therapy to improve or maintain your ability to function.

Medicare will cover outpatient physical, occupational, and speech pathology services if:

  • You need therapy and it is considered a safe and effective treatment for you
    • This means that you need the technical skills that a trained therapist can provide or oversee
    • The therapist must perform the services or direct the staff who perform the services
  • Your doctor or therapist sets up the plan of treatment before you get care
  • Your doctor regularly reviews the plan of treatment to see if changes are needed"
Please click here to read the full article

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To reduce drug errors, Parkinson's patients are educating hospitals
Northwest PD Foundation
"Hy Carpenter must take his medication for Parkinson's disease six times a day in three-hour intervals."

"If he's late in taking a dose -- even by a few minutes -- the 73-year-old St. Paul man can experience "freezing," as his legs slow to the point where he can't keep walking."

"Avoiding such problems can be especially difficult for Parkinson's patients during a stay at a hospital or nursing home, where they can encounter yet another medication risk...." Taken from article on Northwest Parkinson's Foundation website

To read the rest of this important article on PD patients visiting hospitals click here http://www.nwpf.org/News.aspx?Item=4153

For more information about the Aware In Care program click here We strongly encourage all PD patients to obtain the FREE Aware In Care kit!

For more information about drugs & medications click here

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Young Onset Parkinson's Disease Handbook

"If you are young and have Parkinson's disease, you and your family are likely to have numerous questions. How will Parkinson's affect you and those you care about, and how might you have an impact on it? The American Parkinson Disease Association (APDA) and our National Young Onset Center are here to provide you with the education and support you need in order to make important decisions about your health and your life."

"To answer many of your questions, were are pleased to make our Young Parkinson's Handbook available to you at no cost.  Since our founding in 1961, APDA has been diligently working to "Ease the Burden -- Find a Cure" for Parkinson’s disease through research, patient and family support, and education."

The above is taken from the American Parkinson Disease Association (APDA) website at this link http://tinyurl.com/c5hzp3n where you can obtain the handbook.

For other reading material we recommend click here

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Videos From The Doctor's TV Show - Topics On "Parkinson's Disease"

CBS TV Network has THE DOCTORS -- a one-hour, daytime talk show delivering up-to-the-minute information from a panel of four practicing medical professionals in a compelling and entertaining format five days a week. Below are video links to different episodes where they have discussed Parkinson's Disease.

Diagnosed with Parkinson's At age 49, Suzanne noticed her thumb was twitching while she was watching television. She consulted her doctor and was diagnosed with Parkinson’s disease --

THE DOCTORS Examine A Parkinson's Surgical Procedure ... The DOCTORS examine a DBS Parkinson's surgical procedure

Deep-Brain Stimulation Surgery Watch as Suzanne undergoes deep-brain stimulation to control the symptoms of Parkinson’s disease. NOTE: This video may not be appropriate for young viewers - It does show a DBS surgery on the brain.

Deep-Brain Stimulation Results Suzanne and neurosurgeon Dr. Parag Patil join The Doctors to show how deep-brain stimulation improved Suzanne's symptoms of Parkinson's disease.

Muhammad Ali's Daughter Shares About Her Father and Parkinson's May May Ali, daughter of legendary boxer Muhammad Ali, joins The Doctors to share how her family is championing Parkinson's disease research.

Thanks to Kay and Michelle for submitting the DOCTORS TV Show as a resource!

For more videos about Parkinson's and related to Parkinson's resources found on the internet click here

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23andMe --- You Can Help Find A Cure For PD

Your "Spit" Is Needed!

Yes, You Read That Right - "Spit"


Do you want to learn more about yourself, your ancestry, and your health for FREE? Join now The 23andMe Parkinson's Disease Research Initiative - Supported by both the Muhammad Ali & Michael J. Fox
Foundations

"Take an active role in groundbreaking research by mailing in your DNA sample and answering surveys online. Over
10,000 people with Parkinson's have come together to form what is now the largest Parkinson's community for genetic
research in the world. This group is already powering research breakthroughs - they have found two new genes
associated with Parkinson's." Quote from the 23andMe website

Are you eligible? You must be - Diagnosed with Parkinson's disease by a physician - Able to access the internet - and
Willing to complete online health surveys. Learn more at www.23andme.com/pd Have questions about participating in
this research? Email pd-help@23andme.com

How it works: Fill out a form on this page https://www.23andme.com/pd/codereq/ --- Order your FREE kit --- DNA kit
arrives in the mail --- Spit and send in sample --- Fill out online surveys --- See your genetic results for health and ancestry
--- Help 23andMe scientists make discoveries --- 23andMe alerts you to Parkinson's discoveries and how they apply to
you. Your personal information and results will be kept private!

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Caregivers & Care Partners - Do You Need A Break or Time Away From Caregiving?
You May Qualify For A Respite Care Voucher Program That Can Provide Up To $500 Per Year

The South Carolina Alzheimer's Chapter provides short-term respite -- time away from caregiving responsibility--for full time
family caregivers. This caregiver respite voucher program for up to $500 worth of care available each year. This
program is possible thanks to funding through the SC Department of Mental Health.

This program also applies to Parkinson caregivers too!

With a respite voucher, family members are able to arrange care through approved home care agencies, adult day care,
or temporary placement in a long term care facility. The approved agency or facility will bill the association for up to $500
worth of services. The respite program is not designed to pay for services on a long-term basis and may not be applied
retroactively. The voucher may not be used for private sitters.

Go to http://www.alz.org/sc/in_my_community_10485.asp
– for more information about how to apply
– for the form to apply for the voucher
– for information about voucher renewal eligibility
– and for information about caregiver stress

For more information about caregivers and caregiving click here

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Got Questions About Medicare?

For example: How can I find doctors, providers, hospitals, facilities, plans & suppliers in my area? How can I find out if
my medical test, medical item / product, or service will be covered by Medicare? They have answers to many more
questions on this website. http://medicare.gov/

For more information about US Government, SC Government, and other types of government services click here

For a list of doctors and medical providers as recommended by our support group members click here

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Frustrated With How Congress and The Senate Are Running Our Government?

Learn -or- Refresh Your Knowledge About How Our Government Is Supposed To Work - On A Fun-And-Easy To Use Website
(Note: This information is being presented "not" to represent or support any particular political party.)

Why should you be interested in how our government operates, because there are current events happening every day that affect you, your life, your health, your finances, and those you love. Have you ever wondered how the Supreme Court really works? Want to learn more about the 3 branches (Executive, Legislative, Judicial) of our government? Want to learn about how laws are created?

This website will show you how our government is supposed to work; then you can make informed decisions when voting, and when choosing those you want to represent you. Retired US Supreme Court Justice Sandra Day O'Connor initiated this website http://www.icivics.org/ to help schools inform & teach students about our US government. You are never too old to learn things that are fascinating, things you have forgotten, and things you never learned in school about our government.

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Parkinson's Disease Foundation
LISTEN - WATCH - LEARN
Watch one of PDF's more than 30 online seminars on a wide variety of PD topics for free on this website http://www.pdf.org/en/pd_online_education

All events/seminars are available for you to view from the comfort of your own home, 24 hours a day, seven days a week. You can learn more about Parkinson’s symptoms, progression, treatments, and management. Whether you are a person touched by Parkinson's disease or a health care professional, they have a course for you. Join live or watch recorded seminars on their website at anytime.

For more videos about Parkinson's and related to Parkinson's resources found on the internet click here

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Beware of Buying Drugs Online 
Pill bottles and prescription equipment

Online drug purchases may be convenient and economical.  Online drug purchases can come with risks.  Online drug purchases can be contaminated or the wrong active ingredients.  Visit the U.S. Food and Drug Administration new website at http://tinyurl.com/8tqkd8t for more information

For more information about drugs and medications click here

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Do You Know How To Get The Most Out Of Your Next Doctor Appointment?

Your time with your doctor is limited. Make sure every minute counts. Below are just a few tips to help you make your appointment with your doctor a very effective one.

Before the appointment - Write down your list of questions or concerns you have about your health. Put the most important items at the top of your list to make sure you get them answered. Have a list of your medications / prescriptions, any herbs or vitamins, and any over-the-counter items that you are taking. Give a copy of the list to your doctor. You may want to bring the bottles of all your prescription medications with you - often the doctor will want to look at the medication, the dosage, when the Rx was last filled, etc.

During the appointment - Speak up! If you don't understand what is being said, ask questions and/or ask them to repeat. Take notes during the meeting. Better yet, bring someone with you (friend, family member, etc.) to take notes. You may be so focused on what you want to discuss or what the doctor is telling you that you forget to take notes. Also, sometimes we may hear what we want to hear, and having someone else to take notes will give you a better understanding of your visit.

At the end of the appointment - Ask for written instructions if your doctor writes a prescription or wants you to do something at home.

After the appointment - If you still have questions, call your doctor's office. Ask to talk with his nurse, or leave a message to have your doctor call you back.

Remember - It is your life and you need to be responsible for your medical treatment!

For more information about doctors and hospital care click here

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Do You Know About Your Wellness Exam and Shots?

Under Medicare Part B, you are now covered for a "wellness exam" every year. Make sure that you schedule one with your doctor each year. Contact Social Security / Medicare for more information.

If you are over 60 years of age, you should have a pneumonia and shingles shot - in addition to your yearly flu shot. Be sure to talk with your doctor about these shots and if/when you should have them.

For more information about doctors and hospital care click here

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6 Mind-Sharpening "Free" Brain Games To Exercise Your Brainpower

As we get older, brains undergo changes that affect memory and decision-making, as well as other difficult tasks.  Do you wonder whether brain games are really worth the time and expense? 

Read this article and find out. http://www.scientificamerican.com/article.cfm?id=brain-games-do-they-really  

You don't need to pay to play brain games online.  You can find several websites with free games.  Here are 6 "free" brain games for you to try.  Remember that practice makes perfect www.parade.com/braingames 


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IMPORTANT

SC Lt. Governor's Office On Aging - Special News Announcement!

PROTECT YOUR CREDIT AND ASSETS
SC Lt Governor's Office Seal
The following is from AARP Bulletin January/February and the protectmyid.com/scdor website.

The SC Department of Revenue was recently"cyber attacked", and personal data of 3.8 million citizens and 650,00 business of South Carolina was stolen (e.g., Social Security Numbers, Bank Account Numbers, etc.). The state is offering a free year of credit monitoring to South Carolinians.

To enroll for a free year of credit monitoring, go to protectmyid.com/scdor or call 866-578-5422 toll-free by January 31, 2013, and use the code SCDOR123. Also South Carolinians can contact the three major credit agencies to place a free security freeze on their credit reports.

Go to protectmyid.com/scdor or call 866-578-5422 toll-free


The following information is from the SC Lt. Governor's Office on Aging.

As a result, the SC Lt. Governor's Office on Aging has provided resources on their website to help Seniors regarding Identity Protection Services.


Through the Lt. Governor's Aging network, there is an easier process for seniors now established, where they can sign up for the stolen identity protection service the Governor's office has put into place as the result of taxpayer social security numbers and credit card numbers being stolen from the S.C. Department of Revenue.  This process is supposed to assist seniors who do not have the ability to access computers.

Please be reminded that no one in an official capacity will ask for personal data through an unsolicited call. The Governor's office reminds seniors that once they provide the information, as set out in the instructions on the Lt. Governor's Office on Aging, they should not give out personal information to anyone calling their homes. The Lt. Governor's Office and the Governor's Office will continue to monitor this situation and will alert you as we are notified of additional information that needs to be distributed.

Visit the website for the SC Lt. Governor's Office on Aging at the following link for more information http://aging.sc.gov/Pages/default.aspx

For the latest information on how to protect your Identity following the Cyber Attack of the South Carolina Department of Revenue, click here.

Assistance for SENIORS in Accessing Identity Protection Services:
http://aging.sc.gov/Pages/default.aspx
For more information about US Government, SC Government, and other types of government services click here

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"So Long, Paper Social Security, VA or Other Federal Benefit Checks In The Mail Box" --- Bye, Bye

Information below is taken from an article in the "AARP Bulletin January-February 2013" and from the" GoDirect.org website"

Are you getting Social Security, VA or other federal benefits by paper check? You are required by the U.S. Department of the Treasury to switch to electronic payments by March 1, 2013.

Starting March 1st, a new regulation requires almost all recipients of federal benefits to receive payments electronically. Payments will be accessible through direct deposit or a Direct Express® prepaid debit card. If you do not choose an electronic payment option by March 1, 2013, you may receive your payments via the Direct Express® card.

To sign up for direct deposit, go to GoDirect.org or call 800-333-1795

For more information about US Government, SC Government, and other types of government services click here

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PD PATIENTS' SURGERY MAY CONFILICT WITH MEDICATION

[Note - We suggest that everyone read this article. You may not think you are going to have surgery, but you never know. This is an excellent article!]

Northwest Parkinson's Foundation

The full article may be found on the Northwest Parkinson's Foundation website
http://www.nwpf.org/News.aspx?Item=4189

"Clinicians should carefully consider the scheduling of surgery for Parkinson’s disease patients to ensure optimal treatment with carbidopa-levodopa (Sinemet), the "gold-standard treatment" for PD, according to a study."

"Researchers with the University of Minnesota School of Nursing and the university’s medical school conducted a study to establish clear guidelines regarding perioperative symptom management in PD patients, who may miss several doses of carbidopa-levodopa when put on NPO (nil per os, or nothing-by-mouth) status for surgery. "

"One concern with carbidopa-levodopa is its short, one-to-two-hour half-life, requiring dosing several times per day," the researchers wrote in the January issue of the American Journal of Nursing"

"Moreover, because of wide variability in patients’ responses to this and other anti parkinson medications, individual regimens may be quite complex. Some regimens require frequent administration, alternating short-acting and sustained-release doses of carbidopa-levodopa. The complex medication regimens are of particular concern when a patient with Parkinson’s disease must remain on NPO status for several hours postoperatively."

The full article may be found on the Northwest Parkinson's Foundation website
http://www.nwpf.org/News.aspx?Item=4189

For more information about drugs and medications click here

SEE NEXT ARTICLE BELOW - AWARE IN CARE PROGRAM - FREE FOR YOU

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Aware In Care Program --- You, Parkinson's and Hospitalization

Our support group STRONGLY ENCOURAGES you to learn about this program and ORDER YOUR FREE KIT TODAY!
National Parkinson Foundation
Aware in Care Kit -- Get a "FREE" kit today.  Know the Facts.  Be Aware in Care.

Hospitalization: An Action Plan to be Aware in Care
Did you know that people with Parkinson's are hospitalized more often than people without it and also experience more avoidable complications?

NPF wants to help you or your loved one with Parkinson's get the best care possible during a hospital stay.
The best way to avoid complications in the hospital is to be prepared.  Aware in Care is here to help. Each kit includes tools and information to help plan for the next hospital stay—whether it is a planned visit or an emergency.  

The NPF "Aware in Care" kit has tools and information to help a person with Parkinson's prepare for a hospital visit. One kit per person please. Item on BACKORDER, expected delivery June 2012. To order a kit click here


To learn more about the Aware in Care campaign, please visit www.awareincare.org

For more information about doctors and hospital care click here

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Some Websites You May Find Interesting
and / or Informative


Reminder - "ALWAYS" use caution
when using the internet and
when using information from any website!
Photo of typing on keyboard
First Remember --- The Good, The Bad, and The Ugly About Websites

The Good
- The internet has excellent resources for providing education and information about Parkinson's disease.

The Bad
- The internet has resources that can provide incorrect and misleading information about Parkinson's disease..

The Ugly - The internet has websites that prey on desperate patients of chronic diseases like PD.  These websites may promise that they have products or techniques to "prevent" PD and/or to "stop" the progression of PD. 


Note: For those of you with Android Tablets & Android Phones or iPads & iPhones - some of the following links can be downloaded as apps for both types - try and see if they are available - some of the apps are FREE

PDPlan4Life - www.PDPlan4Life.org
This website was created by two women who were diagnosed with Young Onset Parkinson's.  To give you an idea of the type of information & articles on this website is the
article entitled "Ten Things I Wish I Knew When I Was Diagnosed".  Visit this Site Map to see the various topics about PD that they cover www.pdplan4life.com/pdplan4life-site-map.htm

How to Get Reliable Medical Information on the Internet Without Turning Into a Hypochondriac by Alan Henry http://lifehacker.com/5946540/

Medpedia - An open platform connecting people and information to advance medicine http://www.medpedia.com/

HealthFinder.gov - Your Source for Reliable Health Information - http://healthfinder.gov/

TED TALKS - Great talks/lectures to stir your curiosity. Browse by subject, length, or rating (inspiring, jaw-dropping, funny…)- Many of these talks were given by professors, scientists, medical doctors, researchers, etc. At the top of the TED page there are links to other types of TED information. http://www.ted.com/talks If you do a search on "Parkinson", you will find a wealth of information.

PocketPharmacist - Drug Information and Medication Organizer By Danike, Inc. - This resource can be found as an Apple app (for iPad and iPhone) from the Apple Store -and- it also can be found on the Google Play Store (for Androids). It is very good for finding about any
https://itunes.apple.com/us/app/pocketpharmacist-drug-information/id387365379?mt=8

Parkinson’s Resource Center of Spokane! While this website is based in Spokane, Washington it has some very good resource information on it. http://www.spokaneparkinsons.org/

Pharmacy Advocates, LLC - Parkinson's Category - "At Pharmacy Advocates, LLC, we do just that: advocate for the proper and safe use of medicines. Our Mission is to promote the safe and proper use of medications in older adults through diligent pharmacy review and education of clients, caregivers, and healthcare providers. We specialize in medication use in older adults and understand the unique considerations that must be in place when treating this population. If you’re concerned about your or a loved one’s medications or think you could benefit from a medication check-up, click the “Our Services” tab for more information about our services." http://www.pharmacyadvocates.com/category/parkinsons/

Medscape.com - Note: for this site, you will have to create a login and a password - other than that it is free - it can be found on the Apple Store as an app - not sure about Android on Google Play, but it never hurts to look - http://search.medscape.com/news-search?newSearchHeader=1&queryText=parkinson

X-Plain Parkinson's Disease - Reference Summary - This is a PDF document published by NIH (National Institute of Health) about Parkinson's - http://www.nlm.nih.gov/medlineplus/tutorials/parkinsonsdisease/nr039105.pdf

Parkinson's Disease Foundation - Over-the-Counter Medications - An article on OTC Medications - http://www.pdf.org/parkinson_otc_meds

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We Have Added A New Book To Our Book List

"Shaking Up Parkinson Disease: Fighting Like a Tiger, Thinking Like a Fox" [ Available in Paperback]  by Dr. Abraham Lieberman -- This book explains Parkinson's disease--how it's recognized, what causes it, who gets it, when and how to get help, and much more.  Available on Amazon at a very low price.

One review of this book - "This book explains Parkinson's disease--how it's recognized, what causes it, who gets it, when and how to get help, and much more."

Don't forget to visit our web page on "Books & Publications Library" at http://www.columbiaparkinsonsupportgroup.org/books.htm

Note:  If you have any books that you would like to recommend to our support group, please email them to us contact@columbiaparkinsonsupportgroup.org

For other reading material we recommend click here

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Traveling With Parkinson's Disease - If you are considering traveling during 2013, consider looking at these websites for information to help make your trip enjoyable.

Travel Tip - "If you are changing time zones, continue to take your medications as prescribed, with the same intervals between does." Marta De Leon, M.D. - Nacogdoches, TX (Movement Disorders Specialist)

Travel Tip - "If you aren't happy with your air travel experience, be aware that airlines in the US much have a "complaints resolution officer available to you 24/7." Marc Sherman, J. D. - Forest Hills, NY (Attorney Specializing in Real Estate, Elder Law and Estate Planning)

Traveling and Parkinson's: Communicating Your Needs by Peggy Willocks
http://www.pdf.org/en/traveling_pd?gclid=CLOItuTz17QCFQeDnQodyBoA_A

WEBMED - Traveling With Parkinson's Disease
http://www.webmd.com/parkinsons-disease/guide/parkinsons-travel-guidelines

Parkinson's Disease Caregiver Commentary - Traveling With A Parkinsonian by Susan Hamburger
http://www.myparkinsons.org/parkinsons-disease-caregiver-commentary/traveling-with-a-parkinsonian.shtml


For more information about general health resource information click here

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Logo for the Parkinson's Disease Foundation FREE NEWSLETTER!
The Parkinson's Disease Foundation has a "very good" FREE newsletter called the NEWS & REVIEW that comes out quarterly. The articles are timely, informative, and interesting. You can go to this link http://www.pdf.org/en/pdf_newsletter and sign up to receive this FREE newsletter.

In the current Fall 2012 issue there are two very good articles - "Driving and Parkinson's: Balancing Independence with Safety" and "Going to the Hospital With Parkinson's: How to Be Prepared".

The "hospital" article has a list of things that you need to take to the Emergency Room or to the Hospital. Many of the items listed are already available in the "AWARENESS IN CARE" FREE kit that you can order. Click here to read how you can order this FREE KIT.

For other reading material we recommend click here

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Test Your Knowledge About Parkinson's - Answer "True" or "False"

#1 - Parkinson's disease is an uncommon disorder

#2 - Parkinson's disease presents only in the elderly

#3 - The first physical symptoms of PD reflect early disease

#4 - PD manifests as only physical symptoms and signs

#5 - PD is the only form of parkinsonism

#6 - Not treating PD symptoms at the time of diagnosis improves the quality of life of the PD patient


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#7 - Motor complications in PD happen late in the disease

#8 - Motor complications in PD are only physical in nature

#9 - DBS Surgery is for end-state PD patients with no other options

#10 - There are no opportunities to contribute to ongoing research in PD

#11 - Support Groups do not help Parkinson patients and their caregivers / care partners

Click here to find out how many answers you have right

Micrographia prevalent in Parkinson’s

Micrographia
is abnormally small, cramped handwriting and/or the progression to continually smaller handwriting. This is one of the symptoms of Parkinson's disease. O'Sullivan and Schmitz describe it as an abnormally small handwriting that is difficult to read.

From NWPDF by Andrew Czyzewski

"Around half of patients with Parkinson's disease (PD) display symptoms of micrographia, a case-control study shows. Notably, micrographia correlated with disease severity, cognitive impairment, bradykinesia, and hypophonia "suggesting a possible overlap in their pathophysiology..." Click here to read more of this article

For more non-motor resource information click here

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Important Information For DBS Patients In The Midlands of SC!

Michelle Morton-Reed of Medtronic, Inc. has said that if DBS Patients in the midlands of South Carolina cannot reach their DBS neurologist during an emergency, and they need to have their neuro-stimulators reset or turned-on, to please feel free to contact her at any time - 24/7. An example of a situation where you would do this is - if you have to go to an ER, and the ER staff needs to turn-off or turn-on your neuro-stimulators for a medical procedure, and your DBS neurologist cannot be reached, feel free to call Michelle.

Michelle is a DBS neuromodulation expert who has been trained to work with neurologists, neuro-surgeons, DBS patients, and their neuro-stimulators. Michelle has also volunteered to answer via email any questions you may have about your neuro-stimulators or the DBS procedure.

Special Note: Each and every time you have your neuro-stimulators adjusted (during your DBS tuning procedure), ask your neurologist doctor what your specific DBS settings are for both the right side and the left side stimulator. This is important information that you need to carry with you at all times, and to have listed with your medical information (for example your medical alert bracelet or necklace).

Michelle Morton-Reed
Therapy Representative - Deep Brain Stimulation (DBS)
Medtronic, Inc. - Neuromodulation
Cell 803-587-9681
Email michelle.morton@medtronic.com


For more resource information about DBS (Deep Brain Stimulation) click here

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USB (Digital) Medical ID Bracelet - A new type of medical alert device

The newest type of medical alert bracelet or necklace is a USB (Universal Serial Bus) Digital Medical ID Bracelet. This can be a useful choice for people with difficult medical conditions. Paramedics, doctors, nurses, emergency responders, and even police are trained to look for medical bracelets in case of emergencies. Some types of these medical alert bracelets allow for 6 short, simple pages of information, wherein you can enter your personal information, such as your medical history, allergies, surgical history, medications, and more - and others allow for storage of more information. Most come with a software wizard for your convenience in entering your medical data. Some of the USB drives feature being waterproof and shock-resistant, so that the Digital Medical ID Bracelet will retain all your information even in hostile situations/conditions.

Note that there are many different styles from necklaces, bracelets, etc. (i.e., made of stainless steel and features an expansion band for wearing comfort)
. Prices can range from $20 and up --- "some" places where you might find this type of medical id are - Walmart - Amazon - Target - Walgreens - and there are other places. We suggest you shop wisely by searching around on the internet - compare prices and capabilities.

For more general health resource information click here

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Resources for Prescription Assistance
Logo for National Parkinson Foundation
Click on this link http://tinyurl.com/b2pbl4 to find "very useful" information about prescription assistance.
Information from National Parkinson Foundation

For more information about Drugs and Medications click here

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Don’t flush
Don’t pour it down the drain
Don't throw it in your trash
Rx and You
Do You Know The Proper Disposal of Unwanted Medicine?
What’s the problem? Unwanted and expired medicine may be a risk to your health, others health, and the environment if disposed of improperly. Traditionally, expired or unwanted prescriptions or over-the-counter medicine from households were disposed of by flushing them down the toilet, pouring them down the drain, or throwing them in the trash. DO NOT FLUSH! This method of disposal is now discouraged.

The S.C. Department of Health and Environmental Control (SC DHEC) has an excellent PDF document on how to dispose of all types of medications - including needles, syringes and lancets (or “sharps”).

We recommend reading this document and perhaps printing a copy for your home. Click here to read this PDF document

For more information about Drugs and Medications click here

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Electricity Power Outages -and- Special Medical Needs?

If you are a South Carolina Mid-Carolina Electric Co-op residential member and you have a health problem requiring special medical needs - contact your MCEC office as soon as possible to obtain a "Special Needs Account Member Arrangement" form. This is to register with MCEC your medical problems and that you need high priority assistance when there are electrical power outages.

Residential member-owners with such conditions will be required to secure the signature of a licensed health care provider on the form and return it to the cooperative.

If you have questions, please call 1-803-749-6400 or 1-88-813-8000.

Note: If you are "not" a MCEC customer, you may want to check with your own electricity provider to see if they have a similar program.

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Did you know?

The number of neurons in the human brain = 100 Billion

The number of neurons needed to form a new memory = 1

The percentage of brain we use = 100% [10% is a myth]

From AARP magazine May/June 2011


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WE ARE YOUR SUPPORT GROUP

HELP US TO HELP YOU

DONATE

VOLUNTEER


Contact Us To Volunteer


Get Some Sleep: When people act out their dreams
By Lisa Shives, M.D.

CNN Health - "The second time Charlie was awakened by his wife’s screams because he was slapping her in his sleep, he decided to move into the guest bedroom. The third time he hurled himself from his bed and put a big gash in his forehead, he decided to come to the sleep center.

Charlie has REM behavior disorder, or RBD. For each violent episode, he could recall the dream that he was having that prompted him to action. It is very common, and was true in this case, that when the person with RBD attacks his bed partner, usually he is dreaming that he is saving his spouse. In the dream, it is the bad guy he is hitting. " To read more CLICK HERE


For more non-motor information click here

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Northwest Parkinson's Foundation

Three Subjects People Avoid Talking About
Relationships -- Sex -- Intimacy

Man and Woman on beach holding hands Foundation
Relationships, Sex and Intimacy
"Intimacy and sex are hard topics to talk about. Many times people are hesitant or embarrassed to talk about these problems. Often movement problems and medications become the focus during medical visits and intimacy and sexual function become a lower priority. In addition, some medical providers may be reluctant to discuss problems associated with intimacy and patients may feel there is little time left during their appointment and feel too rushed to engage their provider about their changing sexual function. However, sexual function and the importance of intimacy in one’s life is one of the more important priorities for many patients at all stages of PD." From the Northwest Parkinson's Foundation article

This informative article helps to provide information you need to talk about these issues rather than avoiding the problem.
CLICK HERE


Relationships and Intimacy
"Living and coping with Parkinson’s and the evolving role of the partner as caregiver can impact your relationship in both positive and negative ways. Understanding how Parkinson’s affects intimacy, sexual function and desire as well as relationships is the first step in discussing the complicated and many times avoided subject of sexual function and intimacy." CLICK HERE

For more non-motor information click here

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Logo for National Parkinsons Foundation
8 Steps to a Healthy Brain
A global campaign to raise public awareness about the progress and benefits of brain research, including research into the causes of Parkinson’s disease and how to treat it. NPF presents 8 Steps to a Healthy Brain. Click here for more information about how to have a healthy brain

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Are You Having Problems Swallowing?

Click here and visit this website for more information on some tips and tricks to help you.

For more non-motor information click here

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Photo of woman swallowing pill

Be Safe!
Be Careful!
Be Informed!
Be On Guard!


Many Parkinson patients and their caregivers utilize the internet for information, education, social networking and sending email. All too often identity theft can happen quickly.


Onguardonline.gov
has practical information from the federal government and the technology industry to help you to be on guard against Internet fraud, secure your computer, and protect your personal information.

"GIVE 2 THE TROOPS" -- Please take a moment to remember our military troops overseas
Give To The Troops Logo
You can send a Care Package to our military troops overseas. Click Here or Click on the image above to go to the web site

"Since December 2002, GIVE 2 THE TROOPS has supported approximately ONE MILLION deployed U.S. troops with loving care packages and letters from all over the nation. This was made possible only with the help of tens of thousands of generous and patriotic friends in the U.S. and abroad. To date, we've sent more than 115,000 enormous boxes (APPROXIMATELY 70 LBS EACH) and more than 30 million letters and cards from caring citizens. This is the least we can do to show our troops how much we care about them. Our troops need to know that we support and appreciate the sacrifices they make for us, our families, and our future. This is about giving back to those who give all"

Information provided by "Give 2 The Troops"

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Tulip ImageTulip ImageTulip Image
Help create awareness about PD

  1. Spread the Word - Spread the word about Parkinson’s throughout your community, such as writing a letter to the editor, to your local and state representatives and senators, and to your US House and Senate members. 
    This link has several examples of different types of letters that you can write - just click on the various links

  2. Educate Yourself and Others - Read, listen, watch, and learn.  Attend support group meetings.  Go to your library, or purchase books and literature from bookstores.  Surf and use the internet wisely.  Talk with others who are in the PD community.  Ask questions - Ask questions.

  3. Support Finding A Cure - Participate in Parkinson's fund raising events and donate your time, talent, and resources.  BUT - please investigate and make sure the fund raising event is appropriate for your involvement, and is legitimate. Just because they may have a website or social media page (e.g., Blog, Facebook, Twitter, Linkedln, MySpace, Tumblr, Pinterest, Instagram), ask for their non-profit 501(c)(3) number and user your favorite browser (e.g., Google, Bing) to see if it is valid.

  4. Share Your Personal Story - Don't hide it - Tell it!  Connect on-line and use social media (such as Blogs, Twitter, Facebook, Tumbler, MySpace, YouTube, Web Pages, Flicker, Linkedin, etc.). Share with  your story with your community groups, church, clubs, organizations, reunions of all types, family, friends, neighbors, etc. to tell them about how Parkinson's disease has affected you; and the effect it has had on you and those you love. Don't forget to share the positive things too!

  5. Support Your Support Group - Help Us To Help You - Volunteer, Donate your resources, and Attend & Participate at meetings

  6. Participate in Clinical Trials that are appropriate for you. Educate yourself about Clinical Trials and which ones are available that you may have an interest in. This link will take you to more information about Clinical Trials
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Answers to "Test Your Knowledge About Parkinson's" - All of the questions are "False"

WHAT YOU CAN DO FOR PARKINSON'S DISEASE

READ
and
RESEARCH for information about PD

ATTEND PD support group meetings / events / seminars / classes / lectures

VOLUNTEER to help your PD support group help you and others

LEARN about lifestyle decisions you will need to make

MAKE SURE your legal and medical documents are up-to-date

ASK QUESTIONS - ASK QUESTIONS - ASK QUESTIONS!

Return Back To The Test

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Page Last Updated February 10, 2014
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