Living Well
There are those who still believe that PN and exercise do not mix; that exercising, because it can be painful, will make PN worse.
Learn more about some options you may want to pursue.
Acupuncture for Diabetic Neuropathy
Many of you want to take a more holistic approach to your care.
Learn more about how acupuncture might help.
PN Patient Forums
Are you interested in joining a discussion group with other Peripheral Neuropathy patients? If so, we'd like to hear from you. Learn more |
Patient to Patient
Why Me - Why Not?
It is not news that neuropathy all too often creates serious disabilities. Life can be turned upside down. We often lose the ability to do things we have taken for granted, challenging the very core of our life's purpose and meaning. Every one of us has been there in this struggle and it is natural to ask ourselves, "Why me"? Eventually, we begin to search for adjustments to renew our purpose for living. It is what we call normal grief work; emotional work that must be done by anyone who experiences a loss. However, there comes a time when we must refuse to remain fixed on "why me", seeing ourselves as helpless victims to those around us.
As you leave the question of "why" behind, you discover the "what" questions. What can I do? What are my choices? These "what"questions surprise us with the discovery of new purpose, driving our resolve in the face of the darker side of living, inspiring hope and leading us to answers.
Learn more about what you can do to add new purpose to your life.
Lt. Col. Eugene Richardson, USA (Retired) EdM, MS (Counseling) and patient with CIDP/Autonomic PN for 42 years due to exposure to Agent Orange in Vietnam |
Q & A
Patients attending our Living Well with Chemo-Induced PN seminar in May asked many questions. The team from our Northwestern PN Clinic took the time to provide answers.
Q. Does bio-feedback help?
A. There are various forms of bio-feedback. Generally speaking, bio-feedback is a form of relaxation training aimed at increasing a person's awareness of their body and their body's stress response. Training in bio-feedback can enable a person to regain a sense of control over their body's response to stress/anxiety by effecting physiological changes such as progressive muscle relaxation, lowering pulse rate, slowing down breathing, and even increasing blood flow to hands and feet. Bio-feedback can be an effective tool in the management of neuropathic pain. ~ Elizabeth McTaggart MSN RN Additionally, in the context of physical therapy, bio-feedback is used as an approach to muscle re-education in the presence of decreased sensation, and pain. ~ V. Tysseling-Mattiace PhD PT
Find answers to all of their questions: Learn more |
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Summer...is moving quickly and before you know it we will feel the crisp fall air! We hope you have had some wonderful experiences this summer and have connected with family and friends. Some of you have attended various events sponsored by the Foundation; we hope you found them helpful. You will find some highlights from those events sprinkled thoughout the E-News.
We are working on ways to include you in the important work of the Foundation. Each one of us is needed to make sure the collaborative research is funded and patients get the treatments and information they need. There are so many options for how to give - monthly, quarterly or annual pledges, memorials, or hosting fundraising events.
The options are endless! Small or large - your donation matters! You'll be hearing from us soon about these and other options.
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Count Yourself In!
Our matching gift campaign has been widely supported this year....we have reached 95% of our goal! Our thanks to all who have given so generously. There is still time for YOU to make a donation to the Foundation and have it matched by our anonymous donor.
You can learn more about why our donor made this challenge on our matching gift page. DOUBLE your gift - DOUBLE your impact. Let's make sure we reach this important goal on behalf of eveyone living with PN.
But, don't forget...even after the matching gift campaign is over, your gift is still very important to the work of the Foundation. We need YOU to help us make a difference! |
In the News
NEW: Living Well with Chemo-Induced PN Video
A video of our seminar in May is available on our website. The hour long video showcases our panel from Northwestern and the information they provided to an audience of 75 participants. Click here to view the video.
Reducing Diabetic Risk with Brown Rice
A new study shows that eating brown rice instead of white rice can lessen your chance of developing type 2 diabetes.
Since diabetes is a leading cause of peripheral neuropathy, this information may help you avoid diabetes and its complications. Learn more.
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Clinical Trial for DPN
Northwestern University, Chicago
Northwestern is recruiting subjects for a clinical research study. If you have been diagnosed with painful diabetic neuropathy, you might be eligible to participate. Learn more
New Method Helps Nerves Grow After
Trauma or Injury
Scientists at the University of Calgary have discovered a way to enhance nerve regenertion in the peripheral nervous system which could lead to new treatments for nerve damage from diabetes or traumatic injury. Learn more
Marijauna for Pain
The University of Texas reports on a new compound, similar to the active ingredient in marijuana, that might provide effective pain relief. Learn more
The VA is easing its rules on medical marijuana so patients being treated at VA hospitals and clinics can use medical marijuana in states where it is legal. Learn more |
A Tale of Two Cities: Trials and Tribulations
by Catherine Marts, Facebook fan
Living with Asperger's and Peripheral Neuropathy isn't easy. As a child, I was diagnosed with Acute Lymphocytic Leukemia and ADHD. Then, no one even knew about Asperger's. I became a full-blown fighter during the two years I dealt with the chemotherapy treatments and the stares of other kids. The treatments kept me alive but I was socially awkward, impulsive and a chatterbox - and there would be lasting side effects. Being a fighter would serve me well.
I spent my Atlanta childhood like most kids - chasing bugs and snakes and hitting home runs. No one would have guessed what I had been through. My family moved to Long Island after I finished junior high school and I became even more awkward; I just didn't understand how to interact with other teenagers. Sports kept me out of trouble but my motor skills deteriorated and I forgot how to play. High school graduation came with the new millenium - I wasn't even excited. My life completely changed. In college, my social skills kept getting worse and I had symptoms that would paralyze me. I developed a million bad habits to ease the sensory sensations and restlessness I felt. I had no idea what was going on. I left college and found a job where I could use the 'high attention to detail' traits that defined my still undiagnosed Asperger's.
I moved temporarily to Atlanta but went back to New York and found a new job. It didn't last long...the stock and housing markets crashed and I was out of a job. My symptoms worsened, electric shocks rocked my body and I didn't know how to communciate what was happening to anyone. I moved back to Atlanta to be with my family. I finally got a 'break'. I had broken my leg while I was in New York and developed a strange case of spasticity and tremors. Two years ago, after all these years of social and sensory symptoms and neuropathic pain, I was diagnosed with Asperger's and peripheral neuropathy. I finally had the answers I had been searching for so long.
Through those years of disease, the fighter in me never left but she did become dormant. I realize a combination of things kept me alive - my trials in New York and my tribulations in Atlanta. My personality kept me going and today I am far from the person I was two years ago. I could barely keep my head up straight and was going through daily episodes. With hard work, most of the symptoms from both conditions have been reversed though I am aware of my PN. I still have more challenges than most to overcome. However, I am proud to say I am still a fighter... and a tale of two cities!
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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. |
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