NINDS: Recognizes CPM Disease

[WhataBreeze]

November 17, 2006 Update: National Institute of Neurological Disorders and Stroke has recognized CENTRAL PONTINE MYELINOLYSIS (CPM) founded by Dr. RD Adams and colleagues in 1959.

To my fellow B/T Community Members both past and present as well as the wonderful viewers who were my "CPM Awareness Associates," as I'm sure many were helping me plant my "Seeds of Awareness" at all parts of the world.

Many know of my trials and tribulations as I'm a CPM Survivor who has made it a mission I share with G-d above as according to those associated in the "World of Medicine," they have no reason for my current presence on earth.

I have much more that needs to be stated but as I've notified most in my postings, it takes a few sessions for me to finish as my brain does not stay charged as long anymore in regard to my thought process. I'll look forward to continuing this, the most important posting I've ever made that completely validates the four hard years of research as a Layman and now a noted CPM Advocate.

In my temporary closing, please view the link below as I truly believe NINDS went above and beyond in their updated information and facts about Central Pontine Myelinolysis.


Will return shortly to continue the "Blessed Kindness" from the NIH and NINDS.


http://www.ninds.nih.gov/disorders/central_pontine_myelinolysis.htm


Franky and Breeze

[Susie_que]

jumps up & down.
Wooooo Hooooo Breeze Big Congrats !
I know you worked hard for this.
God Bless You !
sending hugs,
hoping you, Momma & Franky have a wonderful Thanksgiving weekend.
~s

[WhataBreeze]

Hi Que, Members and Viewers:

Always appreciate your never ending thoughtfulness,Que. I just came in from Franky's night run as well as my therapy session. I'll tell you, it's so hard to fathom the totally unexpected change my life has taken over the last almost five years now.

The research, constant awareness, health conventions, advocacy working along with the NIH, etc. Que, I know what I have to go through on a daily basis as I fit my volunteered work between my unscheduled periods when my brain forces me to sleep a few hours to charge back up. I never mentioned it before but some of the wonderful physicians who really care about my existence living on with Central Pontine Myelinolysis as I assist those who found themselves in a similar situation as I did along with making it my reason to assist my positive attitude love my newly established nickname being the "Mayor of La La Land."

Getting back to the newly created information page as the National Institute for Neurological Disorders and Stroke of the NIH saw me shake the trees in a very professional outlined pattern when I planted my seeds starting in September 2005 starting in Senator William Frist, MD and Senate Majority Leader's office right there on Capitol Hill.

People are entitled to their own opinions in regard to "Search Engines." The fact is when I started my research excluding nothing, Central Pontine Myelinolysis had about 1500 hits/links available. I know at one time as hard as I was pushing, I know it went all the way to 70,000. Quite and increase true.

Enough of all this, as now the US Government has taken a stand in regard to this "ACQUIRED IATROGENIC DISEASE." If you care to find the truth to the definition of iatrogenic causes, ask someone in the health care field. At this time I can only tip toe through what I pray will make a major difference in the "World of Medicine and Health Care."

Hope everyone who has a chance to view this posting will join me in looking forward to a 2007 that keeps us all within what both we and God wants for us. Mother, Franky and I wish the best for you and your families.


Mother, Franky and Breeze

[cpmdaughter]

Keep up the good work, your word is being herd, you have defintely accomplished something big, and I want to thank you for my fathers behalf. Great Job.
Kim

[dahlek]

I sure would!

Just surprised they didn't cite you or, at least NORD, as reference sites.

To brass tacks tho, HOW should I inform my medicos that I don't want a SALINE IV of Which what %, what key words should I use to ask for sucrose of plain old sterile liquid?

I ask as from my own experiences, being on a 10% saline prior to an IV infusion for extended periods of time creates headaches, taste alteration, and other quirks...IF I can find some tech talk way to emphatically say NO! I'd like to say it in the most assertive of terms. I believe it's something WE ALL SHOULD BE aware of and alert to address.

Best thoughts to you always and heaps of scritches to FRANKY the supervisor dog! - j

[WhataBreeze]

Hello my friendly viewers:

I've not been (love to say under the weather) running up to CPM par the last week or so. Doing better now but had to have another dosage change as my brain is working just a we bit faster than those 12 partially demyelinated brainstem nerve wires want to carry the messages.

Enough of that as its time to start getting ready for my "2007 CPM Awareness Directives." Now that the wonderful doors to the NIH/ORD/NINDS have opened to recognation as well as validation to Central Pontine Myelinolysis the time has come to introduce my "CPM Awareness Foundation" to the "WHO" and I don't mean the band or Abbott and Costello's "Whose on First," old gag.

The truth of the matter is the WHO (World Health Organization) appears to be further advanced in its CPM Awareness than everyone else. With all the events this year in regard to CPM, my hope, dreams and prayers will make 2007 the year to remember.

The good people in Bethesda, Maryland should expect our messages starting shortly. I'm wanting to close on a very positive note as I must leave for my volunteer assitance I do a few afternoons a week. The last two CPM victims who have contacted me are going to be very important to what CPM Awareness is all about. Neither person had any alcohol or liver transplantation involved. This now fills the initial causes of CPM that have been brought to the forefront Entrez Pub Med. It's hard for me state what I'm about to but the fact is those being educated right now who either are just becoming physicians or specialists in the "World of Medicine or Healthcare" are truly much more knowledgeable than those that you have been counting on.

BEWARE: Hypertonic Saline - Iatrogenic - Sodium - Hyponatremia - Alcohol - Water - Malnutrition - Dehydration - Infection - Hypernatremia - Electrolytes

Franky and Breeze

[WhataBreeze]

I sure would!

Just surprised they didn't cite you or, at least NORD, as reference sites.

To brass tacks tho, HOW should I inform my medicos that I don't want a SALINE IV of Which what %, what key words should I use to ask for sucrose of plain old sterile liquid?

I ask as from my own experiences, being on a 10% saline prior to an IV infusion for extended periods of time creates headaches, taste alteration, and other quirks...IF I can find some tech talk way to emphatically say NO! I'd like to say it in the most assertive of terms. I believe it's something WE ALL SHOULD BE aware of and alert to address.

Best thoughts to you always and heaps of scritches to FRANKY the supervisor dog! - j


Hello Dahlek my friend and all the kind viewers who continue to see/watch me pound away in regard to CENTRAL PONTINE MYELINOLYSIS Awareness. As those of you that have followed my quest to alert the world of this toxic neuromuscular disease, when I think back to early 2003 when I was over a year late in being diagnosed, WE still have MUCH to be very thankful far. If anyone knows about where CPM is today compared to four years ago I'd enjoy chatting with them.

Even my own health status as a full fledge victim of CPM has definitely declined. (Thank G-d for E-Tech and Word Spell not that I can't but between my fingers and my brain, there is something going on as they say in football highlights thats, "Jacked Up!"

Anyway, keep your eyes and ears posted as I truly believe that because of the wonderful director of the "Office of Rare Diseases at the National Institute of Health," is paving the way now but yes it takes time and "Anything good does not come easy." My goal is to bring awareness to several other Institutes at the NIH that directly link to the causation of CPM. G-d Bless...


Franky and Breeze

[WhataBreeze]

Hello Dear B/T Members and Viewers Supportive to my Daily Directive Bringing Awareness to My Own Acquired Neuromuscular Disorder of the Central Nervous System Called Central Pontine Myelinolysis.

Yes it's been some time since posing on this perticular Thread. I'm "SO PLEASED" to tell you that "Advocacy and Activism" really does work. You must have the PATIENCE needed however. As my own unique CPM care physicians have been behind me all the way, It's so exciting as the very first "International Meeting including Researchers, Clinicians and believe it or not, those currently diagnosed with CPM and their families will be invited.

"Special Thank You's" go out to the following: NIH/NINDS/ORD; Kennedy Krieger Institute; International Center fo Spinal Cord Injury; Johns Hopkins University Medical School; Hopkins International; BrainTalk Communities, who gave us a dream which now will soon become reality. G-d Bless....