Showing posts with label hope. Show all posts
Showing posts with label hope. Show all posts

Sunday, September 12, 2010

Neuropahty updates and corn flakes


Hi everyone, Here I go again letting to much time go by between post. So much going on. I"ve been to Sacramento for a Neuropathy Action day. I returned home from Las Vegas and didn't put one dime in a slot machine but there for a great cause, a fund raiser for a documentary called "Dying to help". Google it. I'm going to get the ball rolling with the non-profit and I"m going to do my damnest to get to Washington D.C. first weekend in December for a neuropathy summit. Keep me in your prayers. I'm eating sugar frosted corn flakes as I type

Wednesday, September 2, 2009

Meeting with Congresswoman Mary Bono Mack's staff

I was able to meet with Mr. Marc Troast the District Director for Congresswoman Mary Bono Mack. It is my Hope and prayer that we can work together to help those suffering from the pain of peripheral neuropathy in its most cruel forms, that they may find help and Hope (in motion).

Sunday, June 14, 2009

New poll confirms Neuropathy hits millions in there prime

First-Time National Poll Confirms Neuropathy Hits Millions In Their PrimeData shows 82% of patients have neuropathy onset during their 30s-60s
New York, May 13, 2009—A new national Neuropathy Association poll of peripheral neuropathy patients finds that the majority of respondents had their neurological disease begin during their prime adult years, with 82% experiencing neuropathy’s onset between the ages of 30-69. “Peripheral neuropathy does not discriminate: it affects all ages, all types of people,” observes Tina Tockarshewsky, president and CEO of The Neuropathy Association. “However, our survey shows neuropathy strikes most patients in the prime of their lives, when they are building their families, careers, and futures.”“With the potential for millions of active adults to suffer from progressive chronic pain and possible disability, we are leaving the U.S. unprepared to face a major public health crisis if healthcare providers, the media and public policy officials continue to ignore the inadequacy of medical resources and research funding for neuropathy. Neuropathy is taking an immeasurable toll on Americans’ quality of life and generating extreme social and medical cost burdens,” adds Tockarshewsky.For nearly 15 years, The Neuropathy Association has been an active national patient advocacy organization working to change misconceptions about this progressive, chronic neurological disease. May 11-15 marks the fifth annual National Neuropathy Week, an event launched by The Neuropathy Association to raise awareness about neuropathy and its warning signs. Peripheral neuropathy, or “nerve damage,” impacts over 20 million Americans, making it one of the most common chronic diseases in the U.S. Neuropathy results from injury to the peripheral nerves, disrupting the body’s ability to communicate with its muscles, organs and tissues. Most Americans do not recognize neuropathy’s symptoms, which include weakness, numbness, tingling and pain, especially in the hands and feet. If experiencing these symptoms, patients need to consult with a neurologist. With early diagnosis, neuropathy can often be controlled and some types can be cured. If ignored, symptoms can intensify to loss of sensation, unremitting pain, or disability. Too often neuropathy is discovered only after causing irreversible nerve damage.The Neuropathy Association’s national survey of 1,300 patients asked about the age when their neuropathy began, revealing:- 3 percent had their illness start in their 20s;- 27 percent had their illness start in their 30s-40s;- 55 percent had their illness start in their 50s-60s; and- 15 percent had their illness start in their 70s-80s.This survey was complemented by a second national survey which asked 1,000 patients to identify their specific type of neuropathy. While there are over 100 known types of peripheral neuropathy, 52% of the patients responded their neuropathy was “idiopathic,” meaning of no known cause. Other types noted were:- 15 percent had diabetic neuropathy;- 12 percent had an autoimmune-related neuropathy;- 6 percent had a hereditary neuropathy;- 4 percent had a chemotherapy-related neuropathy;- 4 percent had a trauma-induced neuropathy; and- 7 percent had a neuropathy related to other sources such as toxin-induced, nutritional deficiencies, gastro-intestinal disorders, metabolic diseases, or infectious diseases such as HIV or Lyme.“Neuropathy is often misrepresented as only being diabetes-related. However, this survey demonstrates that for every diabetic neuropathy patient, there are at least six more patients suffering with various neuropathies, including some for which there is no known cause and, consequently, no known treatment. Right now, we see great hope in our research community: we are on the verge of real progress in many areas. However, neither funding nor public attention is being directed towards getting these researchers across the finish line,” notes Dr. Thomas H. Brannagan, III, medical advisor for The Neuropathy Association.“The neuropathy patient community has only three FDA-approved treatments for three types of neuropathy, faces increasing Medicare reimbursement restrictions, and receives inadequate levels of federal research funding. With millions suffering, this is an unacceptable public health state of affairs,” Tockarshewsky emphasizes. “Supporting neuropathy research would bring better treatment options and cures to millions of neuropathy patients. Doing so would also help a range of other patients, including those with multiple sclerosis, muscular dystrophy and cancer. Americans must demand cures for neuropathy.”About The Neuropathy AssociationThe Neuropathy Association is the leading national nonprofit organization providing neuropathy patient support and education, advocating for patient’s interests, and promoting research into the causes of and cures for peripheral neuropathies. The Association currently has twelve neuropathy medical Centers of Excellence at major university hospitals across the country in order to serve patients with neuropathy, provide treatment and conduct research, including: - Banner Good Samaritan Medical Center (Phoenix, AZ)- University of California at San Francisco - Good Samaritan Hospital (Los Angeles, CA)- University of Miami Miller School of Medicine (Miami, FL)- University of Florida and Shands Jacksonville - University of Michigan (Ann Arbor, MI)- Saint Louis University (St. Louis, MO)- Columbia University Medical Center (New York, NY)- Weill Cornell Medical College of Cornell University (New York, NY)- Ohio State University (Columbus, OH)- University of Kansas (Kansas City, KS)- University of Utah (Salt Lake City, UT)The organization works to connect patients with one another through its active network of members, regional chapters, medical Centers of Excellence and 135 patient support groups. For more information, please visit www.neuropathy.org.


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Sunday, May 24, 2009

Neuropathy Action Foundation Awareness Day!

The neuropathy action foundation is having there 3rd annual awareness day on June 25.

You can get all the info at: www.neuropathyaction.org

It is being held in Sacramento and folks are coming from all parts of the country!

Everyone is welcome!

I HOPE to seeing you there!

Best regards,

David Hines

Saturday, March 14, 2009

COMMENTS LEFT ANONYMOUSLY

The following was a comment left by "Lory" regarding her daughter but left no way to contact her. Please if you see this give me a way to contact you in order to try and help your daughter.


Hi David,Our daughter was dianosed with CIDP three years ago. She is 14 and still has not regained use of her feet. They do not lift. The doctor told us that's pretty much it. She will not walk correctly again. Anyway, she was just asking me if there was any counseling she could get to help her deal with her condition. she said she feels like she just wants to hide in our house and not try anything new because it makes her stressed because she's afraid she won't be able to do it. For example, she has a trip to Washington DC to go on for her eigth grade trip. she's afraid she won't be able to keep up with everyone and take part in the activities. She wants to go to Christian counseling or talk to other people with her condition to maybe get help. Anything you can help us with, we appreciate it. Thanks, Lory
February 17, 2009 6:02 PM

Thanks,
David Hines

Peripheral Neuropathy Support Group News

Welcome to my blog. Yesterday we had our monthly support group meeting and what a wonderful meeting it was. We had around 8 new members join us and I am so grateful for there presence.

The current group I attend is the Palm Springs neuropathy association support group. We meet the second Friday of the month at 1:30 to 3:00 PM. I moved to the Palm Springs area last year, a community in southern California that is visited by snow birds from the north and college students during spring break and others around the world for its mild weather and beautiful landscape and views of the mountains that encase the desert. It is also a year round home to many retired people and celebs. It is a heaven to hundreds of non-profits and philanthropies of all kinds.I have been coming to this area all of my life threrfore I know the area very well. After being diagnosed with a variance of peripheral neuropathy (PN) called CIDP (Chronic Imflammatory Demylenating Polyradiculoneuropathy) over two years ago I new I had to spread the word and awareness regarding this rare disease. I live in a highly populated area of the world and there were only 4 support groups within a 200 square mile area. It is my goal to get started as many support groups as possible in my lifetime inorder that no one can go without answers to there questions and others who are alike with the same disorder.

We meet to educate, support, and lend an ear and/or shoulder to listen to and/or to cry on. We can relate to each other and understand what other's are experiencing. We try to answer other's questions and if we cannot we will find the answer. There are reported to be hundereds of different types of neuropathies. We are all so different but at the same time all so much alike.

I am a member of the neuropathy association (http://www.neuropathy.org/). The GBS/CIDP Foundation International serving patients of GBS, CIDP and Variants with support, education and research. (http://www.gbs-cidp.org/).

The next support group meeting in the Palm Springs area is April 10th, 2009 at 10:00 AM at the Mizell Senior Center in Palm Springs. For more information you can contact me at my email address: david-hines@hotmail.com or you can call me at: (760) 671-5980 anytime.


Once again, Thanks to everyone who attended the meeting and I look forward to learning more about each one of you and hopes of a long friendship.

In closing, I recommend the following books, "Numb Toes and Aching Soles" "Numb Toes and Other Woes" both by John Senneff. "Peripheral Neuropathy When the Numbness, Weakness, and Pain won't stop" by Doctor Norman Latov, M.D., PhD.

In God's Healing Hands,
David Hines
Advocate, Patient and Child of God