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July 2008 Meeting

December 2008 Meeting


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DBS Resource Information
Doctors & Hospitals
Drugs & Medications
General Health Information
Non-Motor Resource Information


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

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Beware of Buying Drugs Online 
Prescription image

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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

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!

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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

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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 is from the National Parkinson Foundation

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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!

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Five Things Patients Should Question by The American Academy of Neurology (AAN)

AAN Choosing Wisely List Affects Headaches, Fainting, Migraine, Multiple Sclerosis, Stroke

The American Academy of Neurology, in participation with the American Board of Internal Medicine (ABIM) Foundation and Consumer Reports, announced its list of top five questionable tests, procedures, and treatments for patients and physicians to consider in a news conference today.
View the AAN’s list.

Patients are encouraged to talk about this list with your neurologist or physician to determine the most effective means of testing and treatment. The Choosing Wisely campaign encourages patients and physicians to talk about the overuse of particular tests, procedures, and treatments and to help patients make smart and effective care choices.
Learn more about Choosing Wisely

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The October 2012 - May 2013 Flu / Influenza Season
Have you had your 2012 - 2013 Flu shot yet?
Woman getting flu shot Woman getting flu shot Man getting flu shot Man getting flu shot
Ask your doctor if you are at risk and
Should you have the Flu Shot and
What kind of flu shot
(regular or high-octane)
"Each year, people age 65 and older have the highest rates of influenza-related deaths and hospitalizations, according to the Centers of Disease Control and Prevention (CDC). The season "generally" runs from October through May. If you are over 65, you have two options - the regular-strength flu shot or a higher-octane vaccine to combat age-related weakening of the immune system. Called Fluzone High-Dose, this pumped-up version contains four times the amount of antigen, intended to create a stronger immune response. Your health care provider can help you decide which dosage is better for you. Medicare and Medicaid cover both vaccines. Many drugstores and grocery chains also provide the shots." Information from the October 2012 AARP Bulletin

To find locations near you that are providing flu shots go to http://flushot.healthmap.org/ All you will need to do is provide your zip code and the website will list all the locations in your area.

Below are links from the Centers for Disease Control and Prevention (CDC) for information about Flu / Influenza

Click here to learn what you should know about Flu / Influenza

Click here for some key facts you should know.

It can cause mild to severe illness, and at times can lead to death. Some people, such as older people, young children, and people with certain health conditions, are at high risk for serious flu complications. The best way to prevent the flu is by getting vaccinated each year.

The upcoming season's flu vaccine will protect against the three influenza viruses that research indicates will be most common during the season. This includes an influenza A (H1N1) virus, an influenza A (H3N2) virus, and an influenza B virus.

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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

WEBMED - Traveling With Parkinson's Disease

Parkinson's Disease Caregiver Commentary - Traveling With A Parkinsonian by Susan Hamburger

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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.

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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.

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Photo of woman swallowing pill

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.

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

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Micrographia prevalent in Parkinson’s

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

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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

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Northwest Parkinson's Foundation

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