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February 2015



Have you ever wanted to help make a difference in research that would benefit your life and others? You can!


Volunteering for research is a gift you give to benefit you, a family member, your community and the health of people everywhere. All too often important research studies end early because there are too few volunteers, which means important questions go unanswered and treatment options remain limited.


ResearchMatch helps solve this problem by matching people who want to participate in research with researchers who need volunteers for their studies. To learn more about how you can get involved, click here.

Support Groups:
Making Connections
Support groups bring together people facing similar issues, whether that's illness, relationship problems or major life changes. Members often share experiences and advice. It can be helpful to just talk with others who are facing the same issue.

While not everyone wants or needs support beyond that offered by family and friends, you may find it helpful to turn to others outside your immediate circle. A support group can help you cope better and feel less isolated as you make connections with others facing similar challenges. A support group shouldn't replace your standard medical care, but it can be a valuable resource.

Regardless of format, in a support group you'll find people with similar problems. Members of a support group typically share their personal experiences and offer emotional comfort and moral support. They may also offer practical advice and tips to help you cope. Benefits of participating in a support group may include:
  • Feeling less lonely, isolated or judged
  • Gaining a sense of empowerment Improving your coping skills
  • Talking openly and honestly about your feelings
  • Reducing distress, depression or anxiety
  • Developing a clearer understanding of what to expect with your situation
  • Getting practical advice or information about treatment options
  • Comparing notes about resources, such as doctors and alternative options
Click here to find
a support group:
Visit our website at
www.foundationforpn.org. If you don't see one in your area and are interested in learning about starting a support group, please contact us at info@tffpn.org.
5 Tips for Maintaining Good Balance & Preventing Falls

Falling is no laughing matter. Patients with Parkinson's disease, peripheral neuropathy, lower extremity weakness, sensory loss, and substantial vision loss have a higher risk of falling. Good balance requires reliable sensory input from an individual's vision, vestibular system (the balance system of the inner ear), and proprioceptors (sensors of position and movement in the feet and legs). Balance is also dependent on good muscle strength and joint mobility. A sedentary lifestyle and arthritis or diseases of the bones and muscles can compromise strength and mobility.


Most people are familiar with the problems associated with the aging of senses such as vision and hearing. However, the vestibular (inner ear) system can also begin to function poorly with age. The vestibular system is a complex structure of fluid-filled tubes and chambers that constitutes part of the inner ear. Specialized nerve endings inside these structures detect the position and movement of the head and also detect the direction of gravity. The signals sent from the nerves of the vestibular system are critically important to the brain's ability to control balance in standing and walking, and to control certain types of reflexive eye movements that make it possible to see clearly while walking or running.


Because balance is a complex function, there may be no single identifiable cause of a fall. Symptoms of dizziness and/or vertigo can have a variety of causes: vestibular disorders (inner ear), central nervous system disorders (such as stroke), cardiac problems (including low or high blood pressure), low blood sugar, medication side effects or interactions between drugs, or an inadequate or poorly balanced diet. A thorough evaluation by a physician is usually necessary to help sort out possible causes of a fall. The trouble in any one system may not be severe, but the combined effects may cause a serious problem with balance.


The good news is that there are things you can do to reduce the risk of falls:

  • Consult your doctor. When a person falls two or more times within a year or has an injury caused by a fall, they probably need an evaluation by a doctor.
  • Maintain good vision. Vision problems can increase the risk of falling. Make sure your prescriptions for glasses and contacts are up-to-date and schedule an annual eye check-up.
  • Exercise regularly. Play golf, walk, or go dancing-do whatever you can to stay fit. Exercise can help people maintain their balance and strength, especially for those with neurological conditions. At the 2014 American Stroke Association conference researchers reported that tai chi reduced falls among stroke survivors. A tai chi course modified for people with balance problems is a good option. The YMCA often offers these modified classes. The National Association of Area Agencies on Aging can help you identify programs near you. Also, a physical therapist can help you develop an exercise plan. Exercising safely, with good form and under professional supervision, is important.
  • Take stock of your medications. Certain medications can cause dizziness or drowsiness and can affect balance. Make sure your pharmacist, primary care provider, and other specialists have a complete list of all your medicines, including over-the-counter medicines and supplements. Ask them to identify medications that may cause drowsiness and dizziness, and have them recommend the safest options for you.
  • Do a home assessment. Ask your doctor to recommend a physical or occupational therapist to evaluate your home for falling risks. A professional can help ensure grab bars are properly placed and at the right height, floors have the right kind of non-skid surface, lighting is appropriate and well-placed, and doorways are wide enough.

Being proactive instead of reactive can reduce significant physical, emotional, and financial costs, but sometimes people are reluctant to follow advice or make changes. Hearing advice from more than one person can help. So, too, does framing the message in a positive way. For example, if you are told you must use a cane or walker, consider a friendlier message: A cane or walker isn't a defeat-the larger defeat is not using it. Remember you're not giving up. You're being smarter about staying safe.


Source: Stephanie Stephens; Neurology Now

        Living Well with PN


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Disclaimer: The information contained in this newsletter is not intended to substitute for informed medical advice. You should not use this information to diagnose or treat a health problem or disease without consulting a qualified health care provider. You are strongly encouraged to consult a neurologist with any questions or comments you may have regarding your condition. The best care can only be given by a qualified provider who knows you personally.