HOPE-IN-MOTION !

David Hines

Happy New Year to all ! Lord grant us strengh to continue to keep Hope-in-motion as we continue to strive to live with our illnesses and pain. May there be a cure soon for all neurological disorders/diseases.

Your friend, advocate and fellow patient/sufferer,
with Hope,
David Hines

David Hines

This is me getting my IVIg infusion. It is just a short clip. The actual treatment takes about 2-3 hours. It is treatment for CIDP in an effort to slow down the progression of the disease. It is done through Crescent Health Care in home nurse.

David Hines

Lifesong Live

David Hines

I'm a advocate in training but I didn't know my training would be so over bearing. Not that I am complaining. Not at all. I will be 49 years old next month and I will be in by 3rd year with peripheral neuropathy-CIDP. I've come along way and I still want to learn and help in the search for a cure. I was thinking I would not see a cure in my lifetime but I've come full circle and I must believe that a cure will be found soon. We need to work together and beat PN.

As you all know I get sidetracked with my blog and I get off message. But my heart (my hands and feet)are in the right direction. I've come in contact with a number of advocate and lobbying groups that want better healthcare for us and more research which means more dollars from Washington, DC.

Please keep up the hope and lets keep hope in motion.

David Hines
www.neuropathyaction.org
www.neuropathy.org
www.plasmaalliance.org

David Hines

David Hines

David Hines

"THE LIFE OF JESUS CHRIST IS A MESSAGE OF HOPE, A MESSAGE OF MERCY, A MESSAGE OF LIFE IN A DARK WORLD".

-Max Lucado

David Hines

"SOMETIMES STORMS OF LIFE COME TO TEACH US THAT GOD IS IN CONTROL, THAT WE MUST LEAN ON HIM AND LEARN TO BE THANKFUL FOR THE RICHNESS OF HIS BLESSINGS TO US"

-Max Lucado

David Hines

Merry Christmas to everyone! To my friends and my family, I Love You all very much~

David Hines

I was eleven years old when Neil came out with this song and I can still remember listening to it on the radio ! Those were the days...............

David Hines

David Hines

David Hines

T'WAS THE NIGHT BEFORE CHRISTMAS,> HE LIVED ALL ALONE,> IN A ONE BEDROOM HOUSE MADE OF> PLASTER AND STONE.>> I HAD COME DOWN THE CHIMNEY> WITH PRESENTS TO GIVE,> AND TO SEE JUST WHO> IN THIS HOME DID LIVE.>> I LOOKED ALL ABOUT,> A STRANGE SIGHT I DID SEE,> NO TINSEL, NO PRESENTS,> NOT EVEN A TREE.>> NO STOCKING BY MANTLE,> JUST BOOTS FILLED WITH SAND,> ON THE WALL HUNG PICTURES> OF FAR DISTANT LANDS.>> WITH MEDALS AND BADGES,> AWARDS OF ALL KINDS,> A SOBER THOUGHT> CAME THROUGH MY MIND>> FOR THIS HOUSE WAS DIFFERENT,> IT WAS DARK AND DREARY,> I FOUND THE HOME OF A SOLDIER,> ONCE I COULD SEE CLEARLY.>> THE SOLDIER LAY SLEEPING,> SILENT, ALONE,> CURLED UP ON THE FLOOR> IN THIS ONE BEDROOM HOME.>> THE FACE WAS SO GENTLE,> THE ROOM IN SUCH DISORDER,> NOT HOW I PICTURED> A UNITED STATES SOLDIER.>> WAS THIS THE HERO> OF WHOM I'D JUST READ?> CURLED UP ON A PONCHO,> THE FLOOR FOR A BED?>> I REALIZED THE FAMILIES> THAT I SAW THIS NIGHT,> OWED THEIR LIVES TO THESE SOLDIERS> WHO WERE WILLING TO FIGHT.>> SOON ROUND THE WORLD,> THE CHILDREN WOULD PLAY,> AND GROWNUPS WOULD CELEBRATE> A BRIGHT CHRISTMAS DAY.>> THEY ALL ENJOYED FREEDOM> EACH MONTH OF THE YEAR,> BECAUSE OF THE SOLDIERS,> LIKE THE ONE LYING HERE.>> I COULDN'T HELP WONDER> HOW MANY LAY ALONE,> ON A COLD CHRISTMAS EVE> IN A LAND FAR FROM HOME.>> THE VERY THOUGHT> BROUGHT A TEAR TO MY EYE,> I DROPPED TO MY KNEES> AND STARTED TO CRY.>> THE SOLDIER AWAKENED> AND I HEARD A ROUGH VOICE,> 'SANTA DON'T CRY,> THIS LIFE IS MY CHOICE;>> I FIGHT FOR FREEDOM,> I DON'T ASK FOR MORE,> MY LIFE IS MY GOD,> MY COUNTRY, MY CORPS.>> THE SOLDIER ROLLED OVER> AND DRIFTED TO SLEEP,> I COULDN'T CONTROL IT,> I CONTINUED TO WEEP.>> I KEPT WATCH FOR HOURS,> SO SILENT AND STILL> AND WE BOTH SHIVERED> FROM THE COLD NIGHT'S CHILL.>> I DIDN'T WANT TO LEAVE> ON THAT COLD, DARK, NIGHT,> THIS GUARDIAN OF HONOR> SO WILLING TO FIGHT.>> THEN THE SOLDIER ROLLED OVER,> WITH A VOICE SOFT AND PURE,> WHISPERED, 'CARRY ON SANTA,> IT'S CHRISTMAS DAY, ALL IS SECURE.>> ONE LOOK AT MY WATCH,> AND I KNEW HE WAS RIGHT.>> 'MERRY CHRISTMAS MY FRIEND!> AND TO ALL A GOOD NIGHT.>> This poem was written by a U.S. military service member>> The following is his request. I think it is reasonable.....>> PLEASE.>> Would you do me the kind favor of sending this to as many people> as you can? Christmas will be coming soon and some credit is> due to our> U.S.service men and women for our being able to celebrate these> festivities.>> Let's try in this small way to pay a tiny bit of what we owe.>> Make people stop and think of our heroes, living and dead, who> sacrificed themselves for us.>> Please, do your small part to plant this small seed .

Thank you and may God bless our Troops and may He bless America!

Merry Christ-mas,

David

David Hines

I received mail today from Pacific Care my so-called health insurance company. It was a notice of non-eligibility for services I received on November 14, 2008.

I received my twice monthly IVIg infusion that day in which is always pre-approved by my insurance company. So, what has changed suddenly? NOTHING except the incompetence of this company!

I have been fully covered with this health insurance company since 2006 when I was a full time employee of McLaughlin Engineering and Mining company out of Temecula, California. I was forced into the disability world at the end of January 2007. I was on family leave until June of '07 at which time I went on Federal COBRA which I'm still on.

I am responsible for my own premiums and I am paid up till the end of this year. This is a huge mistake that needs to be fixed. I hope to get some help from various advocacy organizations and possibly legal action this coming week.

Stay tuned,
David

David Hines

My health insurance was cancelled on November 25th with no warning or explanation. After many many phone calls and emails the insurance company and my former employer finally corrected the severe mistake that had happen.

For now, I've been able to find out that it seems my former employer did not pay the group health insurance on time and they cancelled the whole group without thinking this could kill someone. It really had the potential to cause death and many terrible injuries. This is far from over. My health insurance coverage was corrected in the late afternoon of December 3rd, 2008. NINE DAYS LATER!

I have received (too many to count at this time) phone calls and emails from friends, healthcare organiztions, advocacy groups from New York, Washington, D.C., Sacramento, San Francisco and from all over southern California.

I will continue to blog about this situation as the "investigation" continues to unfold.

P.S. I am completly disabled and my premiums are not paid by my former employer but are my responsibility through the federal COBRA laws. This should not have ever happened.

May God bless you and God bless America,

David Hines
Patient advocate and
Peripheral Neuropathy, CIDP, Idiopathic progressive polyneuropathy,
Painful Diabetic neuropathy (sensory and motor)
and Disturbance of the skin sensation (its really a diagnosis!) patient.

David Hines

I am always thankfull for what God does in my life. I heard there was a yard sell just down the road a spell and I drove over and the lady who was having the sell was once in the health field and knew about Peripheral Neuropathy!

She even knew some about CIDP, (Chronic Imflammatory Demyelinating Polyneuropathy).

It is very, very rare that I find people (and even doctors) who have never heard of PN much less know something about the disease. I was so excited about that. We talked for about 15 minutes about various things in regards to PN. We even had a brief talk about stem cell research and how it may cure or at least help so many different types of diseases and especially neurological diseases and disorders. It was such a pleasant brief time of conversation. I truly enjoyed it.

As they say, "It made my day". Thanks to God who continuse to put people in my path who give me HOPE and Inspiration!!!

God bless,
David

David Hines

To Anon:
What type of neuropathy do you have? Who dx you? Have you seen a neuro? What test(s) were done to back up dx? What meds are you on? and who prescribed them? How bad is your pain on a 0-10 scale?

Stay in touch,

David

David Hines

My health insurance was cancelled as of November 25th....HOW COULD THIS HAPPEN?

It's kinda a long story but it's one every person needs to hear. It could effect your peripheral neuropathy, CIDP, IVIg, pain medications, etc, etc. It affected me in a big way. The catch is....it was a mistake? I'm on COBRA through my former employer and the whole group was terminated. All because of a human error by my former empolyer. It's that easy.....and bam it hit me like a sledge hammer....I am so tired and in so much pain I will need to finish this blog another time.

David

David Hines

I had my IVIg infusion this morning. I had gone into a semi-remittance state for about 10-12 days but today is came roaring back with a vengance. I was also due for a new fentanyl patch so I threw it on real quick but Nothing! No relief! I cannot believe how this disease progresses inspite of all the medications I take.

I get so frustrated I can hardly hold back my tongue.

What really upset me is I finally was able to get my dental insurance to get all the dental work I will need to fix what the fentanyl patch has done to my teeth and gums. I was in so much pain and was so weak I couldn't make it to my appointment and stayed in bed for much of the day. I now will have to wait until December 19th to see the dentist. The dentist told me last week after my x-rays and examination that is will cost $17,000 dollars and my co-pay will be over $6,000 dollars. They are giving me a $2,300 dollar line of credit so I'm so blessed even though sometimes it is hard to see. I do thank God for what He has done for me and what He is teaching me everyday. Patience is one and trust is another.

I'm pooped, so I'm finishing up and going to bed for the night.

God Bless and always know there is Hope and we need to keep it in motion.

David

David Hines

CIDP

David Hines

DaySpring Movies

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DaySpring Movies

David Hines

Future is nuclear war and famine - US intelligence | The Australian

David Hines

Peripheral Neuropathy - Health News Story -

David Hines

The Freedom Page

David Hines

David Hines

A man and his dog are in the same car. The dog howls bright-moon-in-the-middle-of-the-night caterwauling howls. The man pleads, promising a daily delivery of dog biscuit bouquets if only the hound will hush. After all, it’s only a car wash.
Never occurred to him—ahem, to me—that the car wash would scare my dog. But it did. Placing myself in her paws, I can see why. A huge, noisy machine presses toward us, pounding our window with water, banging against the door with brushes. Duck! We’re under attack.
“Don’t panic. The car wash was my idea.” “I’ve done this before.” “It’s for our own good.” Ever tried to explain a car wash to a canine? Dog dictionaries are minus the words brush and detail job. My words fell on fallen flaps. Nothing helped. She just did what dogs do; she wailed.
Actually, she did what we do. Don’t we howl? Not at car washes perhaps but at hospital stays and job transfers. Let the economy go south or the kids move north, and we have a wail of a time. And when our Master explains what’s happening, we react as if he’s speaking Yalunka. We don’t understand a word he says.
Is your world wet and wild?
God’s greatest blessings often come costumed as disasters. Any doubters need to do nothing more than ascend the hill of Calvary.
Jerusalem’s collective opinion that Friday was this: Jesus is finished.
Such is the view of the disciples, the opinion of the friends, and the outlook of the enemies. Label it the dog-in-the-passenger-seat view.
The Master who sits behind the wheel thinks differently. God is not surprised. His plan is right on schedule. Even in—especially in—death, Christ is still the king, the king over his own crucifixion.
Can’t he do the same for you? Can’t he turn your Friday into a Sunday?
Some of you doubt it. How can God use cancer or death or divorce? Simple.
He’s smarter than we are. He is to you what I was to four-year-old Amy. I met her at a bookstore. She asked me if I would sign her children’s book. When I asked her name, she watched as I began to write, “To Amy …”
She stopped me right there. With wide eyes and open mouth, she asked, “How did you know how to spell my name?”
She was awed. You aren’t. You know the difference between the knowledge of a child and an adult. Can you imagine the difference between the wisdom of a human and the wisdom of God? What is impossible to us is like spelling “Amy” to him. “For as the heavens are higher than the earth, so are My ways higher than your ways and My thoughts than your thoughts” (Isa. 55:9).
I keep taking Molly to the car wash. She’s howling less. I don’t think she understands the machinery. She’s just learning to trust her master. Maybe we’ll learn the same.
From Next Door Savior© (Thomas Nelson Publishers, 2006) Max Lucado.

UpWords ® is a 501c3 nonprofit organization.

David Hines

David Hines

OSU joins Nationwide neuropathy centers - Metro

David Hines

David Hines

John Adams Thoughts on Government

David Hines

Does anyone, that has CiDP, also have severe neuropathic Pain?

I was reading an article by Richard J. Barohn, M.D., Professor of Neurology at the University of Texas Southwestern Medical Center at Dallas, TX

He says that, "painful paresthesias are not common" ? I was diagnosed with CIDP but I suffer from dibilitating neuropathic pain in my feet and hands daily and I am using the Fentanyl Patch, strength 75mcg, every 48 hours, Elavil 150mg a day and Neurontin 3600mg a day and I still suffer from the pain. I also undergo IVIg infusions every 14 days. I do have some ok days, pain at 2-3, but other days my pain shoots upwards to a
7-9 on the pain scale. So, I was wondering how common place or uncommon place is severe neuropathic Pain with a dx of CIDP?

Thanks for any information you might beable to share.

Warmest regards,

David Hines
Blogger for "Hope-in-motion"

David Hines

& Piper is a RockStar too! - Team Sarah

She is ready to join the RNC party!

David Hines

Avalon Project - Declaration of Independence, July 4, 1776

I promise to keep this a Neuropathy information and education site....But I'm really into
the American History thing now I truly hope you enjoy what I've posting if not let me know.

God Bless America!

David Hines

Campaign For Liberty

Education is power!

David Hines

Talecris IVIg Product Gets FDA Approval for Serious Neurological Dis - GLG News

David Hines

McCainBlogette.com - Musings and Pop Culture on the Political Trail

I have come to love this daily blog by John McCain's daughter! I hope she continues to write and keep us updated on the "inside scoop" of the McCain family !

I will also miss the updates on Gov. Sarah Palin. I don't pay any attention to what
the disgruntled/unhappy former McCain aides say. They are all liars! I still love ya Sarah!

David Hines

David Hines

David Hines

David Hines

COMMON SENSE; Revisited

This is from the Ron Paul website. It is worth taking a look at, I am!

David Hines

Please help support prop 8 Vote YES. It is the prop that will require people to be a man and a woman only! Help keep gay education from being taught our schools. This is a big time prop and we must stand for tradeitional marriage just the way it was always suppose to be.

Thank you and may God bless you and yours,

David Hines
Advocate/Activist

www.protectmarriage.com

Do the right thing and vote YES on 8

David Hines

I would like to share one of my favorite web sites. One of the most common statements I hear are "But you look so good!" Well, if they only could see what I see and feel like I feel! Thus, the web site of the invisible disability advocate. Please take a few moments and click here: www.invisibledisabilities.ning.com/profile/David

Thank you and may God bless you,

David Hines

David Hines

The National Republican Trust !

www.GOPTRUST.com

David Hines

The desert neuropathy support group met last Friday at Bob and Odette's home. We had a really nice meeting. We all shared how we have been doing and how our overall health has been.

One of our members even helped us out on the latest information about medicare. He is a volunteer medicare counselor at a local senior center and was he helpfull. He was extremely
helpful for me because of my disability I will be going over to medicare before retirement age
after my COBRA insurance ends.

I heard from the Mizell Senior Center also today and we have hammered out the details for our future meetings.

We will start meeting every second Friday of the month starting with November. Therefore, our next meeting will be November 14, 2008 from 1:30 p.m. to 3:00 p.m.

The center will also start listing our meetings in there newsletter and information board. This is very good news since I expect our group to begin to grow as we get the word out to the community at large.

If you have any questions feel free to contact me. I will post the address and map in a future post.

Best Regards,
David

David Hines

This is my personal blog. It is geared toward Peripheral Neuropathies and related information. But, this is an election
year of huge porportions. With that said, I am putting information about my party and who I am voting for. On experience alone Senator John McCain is by far the best
candidate. He has over 25 years in the senate and over 20 years of armed forces experience. Including 5 1/2 years as a POW in
the Hanoi Hilton! Senator Obama has NO armed forces experience and only 4 years as a senator where he has voted over 130 times "present". That means not YES and not NO just maybe? Do we want socialism in America? NO WE DO NOT !
www.johnmccain.com

David Hines

The Policy Report

David Hines

• View topic - UPDATE: Finance Crisis News & Discussion

David Hines

Interesting Info about IVIG (Gamunex) - BrainTalk Communities

David Hines

I know this is a blog about Neuropathy, health, pain, insurance, IVIg, CIDP, God, Life, The future, co-pays, government, etc.

This is a very important Presidential election year. Probably more important then any election since I've been alive (January 1960).

The next president will either change the way we receive treatment or make it better or worse. The next president could very well nominate 1 or even 2 Judges to the U.S. Supreme Court.

Joe the plumber from Toledo, Ohio has brought back some good memories for me. This could very well be "David the plumber" from Toledo, Ohio. Yes I once lived in Toledo from 1997-2005 and I worked for a local plumber named "Phil Schuster plumbing". Phil is a 2nd generation plumber. His Dad started the plumbing business early in the 20th century and Phil followed his foot steps. Phil is a licensed plumber in Toledo and Lucas County, Ohio. When I worked for Phil I was not required to have my own license as long as the owner was licensed. All my work was approved by my "licensed boss Phil Schuster" and then verified by the local plumbing inspector in the city of Toledo and county of Lucas, Ohio. Phil's business was a very prosperous one and very well could have exceeted $250,000 in income
a year easily. Plumber's as well as electricians make very good money.

Obama's people and the left wing news needs to do there homework and admit the truth. It amazes me to how these people think the American people are that stupid. Even plumbers are smarter than that !

So, in this time of changing politics and a new generation of young people it is my Hope that everyone does there due dilegents. If only all Americans could look back at the 1980's when a great man named Ronald Reagan led this country and was a wonderful example of how a
President should believe and act this country would not be where it is now and not going where it will go if Obama is the next president. I promise everyone who is reading this blog, if Obama gets into the White House this country will go to hell in a hand basket. Mark my words. If you think things are bad now you just wait ! The morals and values of our time is leading this great country down the sink with all the dirty water. Our future is at stake and the future of the new generation of young people. This country was founded on God and the trust of this country is printed on our currency, "In God We Trust" !

If we go back to the time when this nation trusted in God we would be a great country once again !

If Obama is elected the 44th President of the United States, socialism will quickly become the core of this land and evil will not be far behind. The history of John Adams, His Son John Quincy Adams and the 3rd President of the United States Thomas Jefferson are Presidents Americans should study. Not to mention George Washington and of course President Ronald Reagan.

Character could be the one word to sum it all up for us all. To quote a great book title, "When Character was King" does sum it all up. That book was all about a man who very well could have been a King. President Ronald Reagan was one of the top five Presidents who upheld the values of America and changed our great land for-ever and for the good of all mankind. May God bless Him and His family. Go ahead, read the book, it will change your life and how you view the world.

Trust in God and may God bless everyone,

Sincerely,
David Hines

Putting Hope in Motion and trusting in God !

I Hope and Pray you take some time out to view the you tube videos on my blog. Keep an open mind and remember that democrats and republicans both want a better country to live in.

David Hines

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David Hines

I am undergoing my last IVIg infusion as I speak. My Neurologist, Dr. Raja Boutros of the Neuro Center Medical Clinic in Murietta, California saw me on Oct

7th and concluded that I am responding to the treatment and ordered that I continue the treatment for at least another 6 months.

The company that is in charge of my IVIg treatments is Crescent Healthcare in

Orang County, California. After I moved out to the Desert I have had a new nurse

Kathy. I truly enjoy the days that she comes to administer my IVIg for my CIDP.

We have some very enjoyable conversations. I hope to have some photo's to share with you in the near future.

I am so thankful to God for all He has done in my life. In hindsight I can see how He has been in charge of my life and all that He has done.

"The life of Jesus Christ is a message of HOPE, A message of MERCY, A message of LIFE in a dark world".

"Sometimes storms of life come to teach us that God is in control, that we must lean on Him and learn to be thankful for the richness of His blessings to us".

May God bless you all with His richness of blessings,

David Hines

Christian/Advocate/CIDP Patient

The two pictures of beach sculptures are in a beach in Maryland. I will try and find out where
you can go to see these wonderful works of art. In the mean time enjoy !

David Hines

I wanted to let those that are interested we will be having our 2nd support group
meeting on the 24th of October a Friday at 10 am. If you are interested please respond to : SCCNA08@hotmail.com (Southern California Chapter of the Neuropathy Association08)

You can also comment on this blog entry and I will be in touch with you with the
information on our meeting site. I have been in touch with the Mizell Senior Center regarding a room to use for future meetings. They will be getting back to me soon I hope.
If you know anyone who might be interested please pass on the contact information for us to share with members of our group. We hope to grow in size over the up coming months and years. We also have a group in the Temecula, Lake Elsinore, Wildomar area's. If you live in that area get in touch with me and I can pass on information for that area's group. Thanks to all who have helped us in getting the word out about our group meetings in the Southern California area's. We hope and pray to start other meeting's in other area's of our state. If you have an area in which you would like to see groups started let me know and we can get the ball rolling for you.

God bless everyone,
David Hines
Advocate/Patient of CIDP

David Hines

I went to see my neurologist yesterday and he said 6 more months added to your
sentence of hard labor at the prison camp of IVIg!

We believe I am benefiting from the once every 14 day infusions. I still get the roller-coaster ride effect being that I feel stronger some days and some days I
don't. That is the nature of the disease. Up and down, all around.

I will take what I can get. I continue advocating for all who suffer from this insideous disease they call "neuropathy".

Have a good day and may God bless !

David Hines

This is another great informational article on the great news of a FDA approval for the
much needed drug approved to treat CIDP with IVIg infusion's. This is a first my friends. For those that are struggling to get or keep approval from insurance company's and get this much needed drug.

Talecris IVIg Product Gets FDA Approval for Serious Neurological Dis - GLG News

David Hines

The link below is an article announcing the approval by the FDA for treatment for CIDP using the IVIg.
This is very good news for me and others who have CIDP and IVIg infusions.

cidp - Google Blog Search

David Hines

Another article regarding the new drug to treat CIDP. It's called Gamunex. This drug will be used as IVIg treatment. I undergo this infusion type drug through Baxter and Crescent health care in southern California.

Health: Hearsay and Headlines: FDA Approves Treatment for Rare Neurologic Disease

David Hines

This is news from today about a new drug to treat CIDP. I undergo IVIg but it's called "off label". This
is the first drug approved by the FDA to treat CIDP.

FDA grants approval to Talecris Biotherapeutics for Gamunex for neurological disorder CIDP

David Hines

For nearly seven months I've been through a process of starting two support groups in the southern California area. This process is no easy task. I had to work hand in hand with the national headquarters for the Neuropathy Association in New York. We finally picked the dates and locations and times. I also was moving from one area of socal to another. It was not a large distance about 60 some odd miles.

About two weeks or so before the scheduled dates one of the participants volunteered to handle one of the groups allowing me more time to concentrate on the group out in my new area of Palm Springs and it allowed me some much needed time and energy to do the things that people do after a move.

Everything seemed like it was coming together and the date was soon approaching. Then it happened. My CIDP neuropathy flared up and showed its ugly face with full force. It hit me during the night while trying desperately to get to sleep. By the time the sun was starting to rise I was in the worst state I'd been in some time. I kept telling my caregiver I had to go to my first support group meeting and she said your nuts. she was right. I continued to get worse as the minutes and hours past. I told her she needed to call them but I could not even think clearly through the pain to tell her the names. She tried and tried to find something about the group on my desk or my computer. My office area was still a complete mess from moving and most stuff had not even been unpacked. She gave me a strong dose of medicine after talking with my neuro. She said at one point before I finally passed out from the meds that she was going to take me to the emergency room. Last year before my IVIg and Fentanyl going to the hospital was an every week thing. I eventually was out of it and the following days were as dark as the first one. They call it simply a "relapse". It is very common in patients with CIDP. It's like a roller coaster ride of ups and downs.

I finally got some emails out to some of the group but have not heard back from any of them. I can hardly blame them from having to show up at the meeting spot and me not there. I could understand to some point but I would hope they would forgive me after finding out what had happened. So, maybe one of them will read this blog and pull together and get another date set that we could meet.

This disease has a life of it's own. I wish I could have my "other" life back. Oh well, Thanks to all, and to all a good night (or morning).

David

David Hines

As you probably have already heard Gov. Sarah Palin from the state of Alaska is John McCain's V.P. selection. Here is her Bio just released by the RNC. Enjoy this wonderful story about a "Hockey Mom" turned Maverick!

David Hines

David Hines

Dr. Nitin Sethi, MD is currently an assistant professor of neurology for Cornell University. His patient-friendly weblog can be found at http://www.braindiseases.info/

Dr. Sethi is a friend of the Northern Calif Chapter of the Neuropathy Assoc. and the Southern Calif Chapter of the Neuropathy Assoc. If you have any questions regarding any neurological disorders, diseases etc. send me an email and I will do my utmost in getting an answer for you. Just please remember do so judiciously as His time is stretched in His everyday duties at Cornell University. You can also do your own research and share what you find with us and we could add it to our own blogs and websites. As information comes in I will share it with you as soon as I can get it posted.

Enjoy, oh happy day!

Chief Editor,
David Hines

NCCNA08@hotmail.com

David Hines

I will meet my new nurse this friday the 22th. The person in charge of nursing schedules at Crescent Health Care in southern Cal called me and told me her name is Kathy. I had the same nurse for over 6 months until I moved so now I get to meet the new one. I will update you on how it all turns out. I continue to strive to keep "Hope in Motion". God bless, David

David Hines

McCainBlogette.com - Musings and Pop Culture on the Political Trail

Posted using ShareThis

This blog is 99.999% neuropathy related. But...I consider the up coming elections a chance to vote my belief in who would be the best President in ALL areas including health. It is my belief that Senator John McCain is that person so from time to time
I will share things regarding His campaign. Thanks for your understanding and you
can trust me to always share the latest information regarding Peripheral Neuropathy.

David Hines

This is Arianna and her Mom Bahar. Please read there story at Sacramentoheartsupportgroup.blogspot.com! You can also scroll down to my Blog List and click on Hearts of Hope!

David Hines

The first picture is the new home and then a picture of the snow on the Mtn's in May

David Hines

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!

David Hines

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/

David Hines

One of my neuropathies (there are hundreds of different neuropathies) is called CIDP
(Chronic Imflammatory Demyelinative Polyradiculoneuropathy). I under go IVIg infusions every 14 days. I will talk more about CIDP later. It presents it's self like a yo-yo. I have ok days and without warning I plunge back down with severe fatique (weakness) and severe pain. The pain feels like my feet, legs, and hands are on fire. I also get stabbing pains like an electric probe sticking me. I also experience terrible memory loss. I don't remember what I did yesterday much less last week. We had a 5.4 magnitude earthquake last week the 29th. I found out today by just having a casual conversation with my Mom and it just came up by her and I have no memory of anything! I really dislike not being able to remember things. It's scary.

I still lean on my faith. If it were not for my belief in Jesus Christ I would have given up already. I'm starting to really hurt sitting here. I usually stay in bed when I hurt like this but I also get "sick" and tired laying in bed. Oh well, hopefully tomorrow I will feel better. God Bless everyone,
David

David Hines

For more info go to: socal.harvest.org

This is an event that you will remember the rest of your life! God Bless!!

David Hines

Please Pray for Pastor Greg and the Laurie Family: Christopher Laurie, son of Pastor Greg Laurie and Cathe Laurie, was called home to be with the Lord on Thursday morning. Christopher, 33, died in a car crash while driving to Harvest Christian Fellowship, where he had served as the church's art director for the past three years. In addition to his parents, Christopher is survived by his wife, Brittany, and daughter, Stella, as well as his brother Jonathan. Christopher and his wife are expecting another daughter in November. More information will be posted at harvest.org as details become available. We ask that you pray for the Laurie family in this time of mourning. You may pass along your condolences and thoughts for the Laurie family by posting a comment at Pastor Greg's blog.

David Hines

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!

David Hines

David Hines

Check out this cool community!

Visit My Invisible Disabilities Community

David Hines

Find more music like this on My Invisible Disabilities Community

David Hines

View my page on My Invisible Disabilities Community

David Hines

www.invisibledisabilitiescommunity.org/profile/David

David Hines

David Hines

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

David Hines

Millions in this country and elsewhere have peripheral neuropathy in different forms and to various degrees. The number usually cited in the U.S. is two million. Yet a study of its incidence just among specific population groups, for example among people with diabetes or with HIV infections, would suggest a much larger number.

It can strike any age group in any social or cultural strata. Many, perhaps most, victims do not realize what ails their aching soles and numb toes, as well as their tingling fingers, throbbing hands or weakening muscles. The shame of this is that without early action based on knowledge of their afflictions, the pain and other symptoms experienced by these sufferers almost invariably gets worse. Moreover, their neuropathies often tend to advance in their bodies, causing more and more areas to be affected. Another problem is that if attention is delayed certain neuropathies can become more difficult to treat.

Hope in Motion. Without Hope we have nothing. Choose Hope!

PERIPHERAL NEUROPATHY EXPLAINED

Perhaps because it's poorly understood and not commonly discussed, peripheral neuropathy is sometimes called the "silent disease" (though it has company using this tag!).

Yet it affects more people than rheumatoid arthritis-a much better known ailment-with just as severe consequences in its worst form.

To start with, it should be understood PN is not really a disease at all. Rather it's a complex of disorders in the peripheral nervous system resulting from damage to the nerves' protective coating or from damage to the nerves themselves.

Our peripheral nervous system is made up of nerve fibers bundled together in nerve trunks. They run from the brain and spinal cord (which make up the central nervous system) to other parts of our body. The fibers are shielded by a coating or membrane called the myelin sheath. Like wires protected by insulation, the coated fibers carry "electrical" impulses from receptors located in internal organs, muscles a skin, back to our brain through our spinal cord. When an injury to our peripheral nerves or their protective coating occurs which interferes with the transmission of impulses from these receptors, one of two things (or sometimes both) occurs depending on the receptors and nerve fibers involved. Either the brain simply acknowledges and registers the abnormal transmission as pain or some other unpleasant sensation, or it prompts a response back to the muscle or organ from which the original impluse emanated. In the latter case the response may result in decreased muscle movement or changes in organ functioning.

Peripheral neuropathy (particularly sensory neuropathy) seems in most cases to initially occur at the extremities of the longest nerves farthest from the spinal cord and brain. Consequently the feet being at the end of the line, are usually the first to be hit. Frequently the hands are next. Over time the affliction can spread to ankles, legs and arms if the underlying cause is not addressed.

Types

Most of the disorders are called "polyneuropathies." This means that they are multiple and usually (but not always) symmetric, affecting both feet, for example, or both hands, in the same way. A term often used to describe this condition is "distal symmetrical polyneuropathy." In contrast "mononeuropathy" refers to the injury of a single nerve such as in carpal tunnel syndrome, where only one hand and wrist may be affected, or Bell's palsy, involving a single nerve to facial muscles.

Other neuropathy classifications are based on whether the sensory, motor or autonomic nerve fibers are involved. Damage to sensory fibers, concerned with feeling and touching, results either in abnormal paresthesias (sensations) such as tingling, numbness, electrical shocks, or in outright pain. Damage to motor fibers, which are responsible voluntary movements such as fist clinching, may result in bodily changes such as muscle weakness or atrophy, or cramps and spasms. Damage to autonomic fibers, which affect involuntary or semi-voluntary functions such as control of internal organs, can cause such changes as decreased ability to sweat, loss in blood pressure (with or without dizziness), constipation, bowel and bladder problems, and sexual dysfunction.

Somewhat rarer neuropathies and attendant complications include:

Chronic Inflammatory Demyelinating Polyneuropathy (CIDP is a chronic autoimmune disorder-the immune system itself is attacking the myelin sheath-and is characterized by muscle weakness and burning sensations);

Guillain-Barre syndrome (GBS is also autoimmune, oftentimes resulting in paralysis of the legs, arms and breathing muscles);

Charcot-Marie-Tooth disease (CMT is a complex of hereditary nerve disorders of various types frequently involving the myelin sheath); and

"Restless Legs Syndrome" (RLS is a complication of neuropathy-as well as f iron deficiency anemia-manifested by creeping, crawling sensations accompanied by motor restlessness, most often experienced at night).

The Neuropathy Association publishes an excellent booklet written by Dr. Norman Latov (Professor of Neurology at Columbia University) and Mary Ann Donovan (President of the Association) as a primer on peripheral neuropathy. It lists a number of neuropathic disorders in terms of whether they are "acquired" or "inherited."

I hope this information helps. This information was from "Numb Toes and Aching Soles." by John Senneff. I highly recommend. GB until next time.

David Hines

Letter To People Without Chronic Pain... - BrainTalk Communities

David Hines

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.

Wednesday, December 31, 2008

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