COUNSELING IS AVAILABLE

Hi everyone,

I felt I needed to post regarding counseling for those of us who suffer from a chronic illness. There is help available we just need to know where to look. I have spent many hours researching differnt things about our mutual concern. Please leave a comment of suggestion's and please leave a way to contact you. Let us keep HOPE IN MOTION.

God bless,
David

Advocacy information from the American Academy of Neurology

New Task Force Developed for Upcoming Health Care Reform Debate

With a new President-elect and Congress already beginning to tackle the issue of health care reform, the AAN Professional Association has developed a task force dedicated to developing a comprehensive strategy that will present the needs of neurologists and their patients on Capitol Hill.

Chaired by Bruce Sigsbee, MD, FAAN, members of the Health Reform Task Force (HRTF) will be implementing a proactive strategy in regards to health care reform involving neurology and will also act as a rapid response team as legislation is proposed.

Since the HRTF was formed in October 2008, it has created an educational piece for policymakers on Capitol Hill. Titled "The Critical Role of Neurologists in our Health Care System," this vital information explains what exactly a neurologist does, why there is an increasing demand in the profession, as well as the growing concerns of neurologic diseases, including Alzheimer's, Parkinson's Disease, and autism in children. HRTF staff has also met with patient organizations to discuss how certain efforts can be combined, though these discussions are still ongoing.

The HRTF will decide its next steps during a meeting in mid-January. Discussions taking place during this time will include developing reform principals that will ultimately drive the Academy's efforts on Capitol Hill.

For more information, please contact Rod Larson, Chief Health Policy Officer at rlarson@aan.com or at (651) 695-2772.

Common Sense !

New nurse for my IVIg infusions

I received a message today from Crescent Health Care the company who handles my IVIg infusions. They handle everything from getting the "Gammaguard Liquid" to sending the product to me at home and sending the nurse to give me the infusion treatment. I get the infusions every 14 days. Well, I moved and I requested my regular nurse. She has been my nurse since January and I like her alot. And she is a christian which is the best part because she and I can talk openly about our faith and neither one of us get in trouble for sharing our faith with each other in this "politically correct" society we live in. Well, they said I cannot keep my good friend nurse Barbara. They said my new address is just to far for her to be allowed to travel. It would had been a 70 mile ride one way (but she told me if I were to request that I keep my same nurse they would let it happen but sadly she was wrong). I will have to get to know a new nurse. :(

Well, there is a "reason for everything" I trust God has a good one, He always does!

New Support Groups in Southern California !

BREAKING NEWS ! Just coming into the news room. "Southern California Chapter of the Neuropathy Association" announces two new support groups. The Temucula valley and the Desert communities will launch there support groups in two weeks!

On August 27th, 2008 at 10:00am the Palm Springs area group will meet at Rick's restaraunt and Bakery on Palm Canyon Drive. For more information call: David Hines at (951) 671-5980 or (951) 852-7843.

The Temecula valley group will meet that same week (Exact date TBA).

Our goal is to have support groups throughout Southern California just as our good friends in Northern Calif has done. (see http://www.pnhelp.org/) This is very exciting news for the many people who suffer alone without anyone to talk to or to get information from. Please check back often for continuing updates regarding news from "SCCNA" and it's founding members. Let us all Choose Hope by putting Hope in Motion!

God bless,
David Hines,
Chief Editor and PN'er

"Together we can and will beat Neuropathy"
http://www.neuropathy.org/

News about new home

It's a beautiful day in SoCal (Southern California). I have a good reason to be very happy today in spite of my health issues. I got plenty of sleep last night which is rare for me considering my health problems. But today I feel good which is also rare for me. I have been searching for another place to live that is cheaper then where I live now. I was only looking for something else to rent knowing there was no way I would be able to buy anything on disability.

But, God is good. He opened a door that I thought I would never see. Home ownership, especially in these times of economic "disability". During one of my searches a couple of weeks ago I ran into a miracle, a used mobile home in a desert oasis called "Desert Hot Springs, Calif. About an hours drive from where I live now. The owner was the son of a woman who died four months ago and he just wanted to "unload" it and get some closure from losing his mother. He only wanted $10,000 dollars for it! On top of that he just had a new air conditioning unit put in less than two years ago that cost him nearly $6,000.00 dollars! To make a long story short I ask God to open the door if it was His will, and the door opened "Literally"! Yesterday I met the seller and finalized the deal. I'm now a proud owner of my own home! WOW!

This is something that would have never happened if it were not for a wonderful God who continues to look after me day after day.

I took pictures yesterday and I will post them as soon as I can.

No more rent payments! No more landlords! Wow, I'm so excited! And so blessed!

Have a wonderful day!

A great video about neuropathic pain-A must see video for all

http://www.youtube.com/watch?v=Zo-xQLigqDo

Peripheral Neuropathy

I am 48 years old. In the fall of 2006 I began to have symptoms of tingling and burning sensations in my toes. I worked as a haul truck operator on southern California's mine sites. By January of 2007 I could no longer get my steal toe boots on. That day my life changed forever. After many doctor appointments and many test were performed I was diagnosed with peripheral neuropathy including Chronic Inflammory Demylinating Polyradiculoneuropathy (CIDP).

These are variants of different types of peripheral neuropathy. I hope to bring forth awareness of this rare disease. Another form of the diagnosis is called Motor sensory mixed axonal and demyelinative polyradiculoneuropathy.

It is difficult to explain this disorder. It is a nerve disorder that effects the peripheral nerves. This does not effect my central nervous system.

The symptoms of my disease are tingling, burning, stabing and many other pain sensations. When explaining my symptoms it is like a paradox. In other words, it feels like my feet are on fire and in a bucket of ice at the same time!

Some suffer's only feel this pain in there feet and in others in can spread. My neuropathy spread up my legs and into the lower back area. Sometimes my burning in my upper legs feels like a bad sunburn. These pain symptoms can really change the way you live life. I hope to post more as often as I can. My symptoms have also gone from the tips of my fingers up my arms. This can cause me to feel like my hands are in a fire place. There is so much I want to share with you all. This disease can be a very lonely disease. I now am an advocate for a cure for peripheral neuropathy and all neurological diseases/disorders. Over time I will share other web sites to visit that can help in the process of sharing information that can help educate people about this insidious, disabling ailment. Until next time, God bless, David.