NORD: CPM Awareness Foundation

[WhataBreeze]

Central Pontine Myelinolysis Awareness Foundation



One year ago you might remember Breeze going to Washington, DC to attend the 2005 National Organization of Rare Disorders Annual World Conference. Quite interesting all the events since then including how on earth did I have meetings in offices of Senator William Frist, MD. Majority Leader, Senator Christopher "Kit" Bond of Missouri and Senator Pat Roberts of Kansas just prior to the conference. The first official planting of seeds for world wide awareness was done.

An earlier quote made by Senator William Frist, M.D., continues to carry direction as I became the #1 layman advocate in the world stated by a world renown specialist in the realm of Spinal Cord Injury, Embrionic Stem Cell Research and one of only a few authorities in regard to knowledge of Central Pontine Myelinolysis my acquired iatrogenic toxic neuromuscular demyelinating disease of the central nervous system.

"It is simply not acceptable for patients to be harmed by the same health care system that is supposed to offer healing and comfort."

Senator William Frist, M.D., 5/24/01
Senate Majority Leader, Rep.
United States of America

As I continue to march forward balancing my chronic symptoms of CPM, I thoroughly believe my persistance has a blessed benefit. At this time I find no reason to go back to fill in the event. In time the reality of effects that continue to progress everyday will be known in detail. Yes, it is a fact that I presently am the only CPM subject in the world working on a daily basis to submit evidence of what is known by a small percentage of those said to be qualified to administer treatment and the current educative process continued to be taught has not measured up to it's daily world wide horrific results.

I'm pleased to notify those who have followed my trail by the benefits of the Internet forum communication. My thousands of postings for whatever reason will always have my intent to assist others who also have this road of chronic health matters to overcome.

This last Sunday I returned from a trip that took me back to Baltimore, Md. for my first return evaluation after the ten weeks of tests and an especially designed neuromuscular rehabilitation program I concluded late December, 2005 at the International Center for Spinal Cord Injury at Kennedy Krieger Institute. My testing during my rehab was done by the Department of Neurology at Johns Hopkins Medical Institute. If you've never experienced this combination of health care providers, be sure to give thought to be treated at the "Medical Meccah." Following updated conversation with both Dr.'s Cristina Sadowsky, Clinical Director and John McDonald, Director of the ICSCI in regard to my present CPM symptom status, I went directly to Bethesda, Md. as the 2006 NORD Conference would begin. This years program featured many facets of interest including several offices under the umbrella of the National Institute of Health and the Food and Drug Administration.

Hard to imagine that there are over 6,000 rare diseases on record which 80% are genetic and 20% acquired. CPM, not only being acquired, it is said to be of iatrogenic reasons. (Note link below.) Come February 2007, I will be in CPM's wrath for five years which it in itself is somewhat unheard of. Some days I ask myself why do I continue this expedition most all by myself as no matter what I do even though there is no question with all the puzzle pieces I've been able to find and label, it continues to take so much out of me.

Just today as I spent the afternoon as I do twice a week since relocating here to my orriginal home, at a major hospital med centers in-patient rehabilitation departent working again on my own as I was asked to design and develop a new "Peer Support Program" that will be ready for by July 2007. Currently they have a new "Rehab In-Patient Facility" under construction. I happen to be visited by the Director and the Rehab Psychologist today. In conversation I mentioned CPM and I don't want to ait it but I was somewhat surprised as it was apparent they were blank on the subject. I will admit that the Director did as several of those being rather intelligent by taking the name Central Pontine Myelinolsis and tearing in down backwards to help get the meaning. Myelinolysis being of infection to the myelin, Pontine being the pons located in the brainstem an Central being the area of the pons where the nerves are located that have the myelin protective sheath around them. Ending todays episode, as I arrive at my building condo, I see the local fire department's ambulance at my buiding. I notice one of the EMT's is about to go up the elavator with me. In small talk, I mention how they had to rush me to the ER last July when I became overwhelmed by "Transient Dysphagia" ne of many chronic symptoms of CPM. Several months ago, I lost a CPM associate and friend to this same complication as he choked to death. An EMT happens to have a very direct connection to CPM as they can be first on the scene and if not fully knowledgeable in regard to the electrolytes especially sodium correction, the CPM can start at that point.

As I've stated from a victims perspective, It's so hard to fathom how many people daily are either dying or left in some state of severe chronic illness because of those responsible who are supposed to be trained to observe the complications that cause Central Pontine Myelinolysis. OK, how can I just walk away knowing what I've learned whether it be research, my own reality that has left me in an unexcusable lifestyle or watching what continues to go on around me.

Advocacy and Activism can only be achieved with "Awarness," when CPM is the subject. Currently as CPM has no cure or research, not recognized by almost every health organization in the world, no essential training to those who are to give the initial care by making sure it doesn't occur and what I personally feel is unexcusable which is substituted diagnosis on death certificates. If those who view my postings want me to only report on how my continuous efforts are now making real headway in not only the United States Government Agencies whether it be the US Senate Offices, Natitional Institute of Health Offices, World Health Organizations, all who should be well versed starting with EMT's proceeding all the way to officials in all the CPM common areas in the "World of Medicine," who accept the responsibility by the accuracy of their employees. Please note, in almost all cases I'm aware of the "Blame" should start at the top as I have found most in that capacity also are unaware. How long did it take from the actual time of known knowledge in regard to nicotine and cancer? I can only assume at this point there is a major parallel coming in regard to alcoholism, malnutrition, electrolyte unbalance and a collection of severe illnesses that will bring "Awareness" to this current mystery to why Central Pontine Myelinolysis is still concealed. Could it be that CPM is considered caused by iatrogenic reasons? (See Link Below) No one knows better what a disease is doing to them that the victim themselves.

To Be Continued..... Please note it now takes me multiple sessions to complete postings. Thank you for understanding. Your personal thoughts are welcomed. G-d Bless...


http://nlm.nih.gov/medlineplus/ency/article/000775.htm

www.rarediseases.org

http://rarediseases.info.nih.gov

http://www.iatrogenic.org/define.html


Franky and Breeze

[dahlek]

Hopkins was rated #1 in the neuro field...according to USNews & World Reports this year?

For those of you with ANY neuro issues, check out NORD and how it advocates on behalf of us all. Then check out how your particular organization participates on your behalf at this conference and others...other than that for their own consituency.

Face it, We all here have problems, Problems that cost a great deal to treat and someday cure. If we are to continue to get/receive treatment-see research that can ultimately help us-and get something BETTER than what we have now, well, Just take a GOOD look!

Breeze, I am glad I got to the conference & met you there.. It was worth the trip. I'm only sorry that Franky wasn't with you! - j

[WhataBreeze]

Yes my dear friend J...

I'm sure there are many wonderful research hospitals or care centers around the world but after experiencing not only what I accomplished as well as others who shared similar care at the same time, both Johns Hopkins and Kennedy Krieger Institute in Baltimore, Md. are a "Medical Meccah."

What a pleasure having you come to a day at the conference in Bethesda. In a way its kind of fascinating for me being a victim/patient, researcher, advocate, founder as well as only member to the CPM Awareness Foundation and then you showing support for me.

It takes that special person extend like that under our "Normal" everyday conditions in life.

BTW, I agree it would really be great if I could bring Franky to these events.

G-d Bless My Friend....

Franky and Breeze

__________________

[Buttons2]

Hi Breeze! I just posted a couple of days ago (forget which forum) to see if anyone had heard from you or our dear nurse Laurie!

So glad you are still with us!

Maybe Franky can join in on the pet therapy?

How's your Mother doing?

Buttons

P.S. Sorry this is all OT but I'm in a hurry right now & just wanted to make sure I connected with you! Big hug!!

[WhataBreeze]

What a pleasure getting your posting my wonderful BT associate. You are a friend, survivor and an important to BrainTalk's Forum. I've had a few changes in regard to my own health so my direction in regard to my goals of advocacy and activism have had to find a different pattern to parallel my current CPM status.

It's really kind of interesting what has happened in the last few months that we who had a huge communication investment through BrainTalk were in a holding pattern. Just returning from Baltimore and Bethesda/Washington DC, as I was re-evaluated at Kennedy Krieger/Johns Hopkins and on to what turned out to be a very positive conference in regard to rare diseases/disorders. As it is now a known fact that I'm somewhat unique as now over a four year survivor of Central Pontine Myelinolysis, my initial personal research has lead to my individual soon to be world wide efforts to bring "Awareness," to this acquired iatrogenic fatal or chronic disease.

I surely can't sign off without an update for Mother and my Franky who by far is the main reason for continued strength as well as desire. Mother has really had continuous issues which has made it difficult for both of us but at 85 she is still set on having a huge 100th Birthday Party. Franky, who will be three in January has to be the heaviest but solid muscle Boston Bull on earth. He has done so well making the change as we relocated back in May. He is really something as we now live in nice older adult condo community. Quite a change from my multi bedroom home including a large fenced back yard and on our own. Now we go out three times a day with the handy use of an elavator. Around here its always, "There is Franky and his owner."

I look forward to your pleasant demeanor as all postings coming from Buttons are such blessing to view.

Franky and Breeze

[WhataBreeze]

Why is Advocacy and Activism So Important?

It's one thing to be told of events at best on a second hand basis. However, when the unfortunate opportunity arises to experience events that scream for exactly what your efforts call for, it deserves to be immediately brought to the forefront.

Yo have viewed in this Thread I ust recently returned from an evaluation in Baltimore at KKI/Johns Hopkins with my wonderful Team assisting me. They asked me to have both the EMG/NCS tests performed upon my return home.

Yesterday morning, I arrived at Neurology Department Lab requested by my doctors as they assured me I'm going to the best place to fulfill their requirements. Everything started very well as it wasn't hard to see how competent the tech was as she started. Within a few minutes, a very young faculty neurologist comes in and begins to ask me some backround questions.

Q. Without getting into full detail, he proceeds to ask me "What caused you to need these tests."

A. "I acquired Central Pontine Myelinolysis in 2002."

With that, the young doctor's facial expressions did the talking until I hear, "You Sure Appear To Have A Mild Case." At that point, I didn't know rather to be pleased he had heard of CPM (After all, he is a neurologist.) or to scream in disbelief how he had the unpleasant right to make such a statement to me. (Note: What I'd like to say would have me barred from B/T without ant rebuttle from me.)

Q. Why did your physicians send you to us. What were they looking for.

A. Im sure there were notes on the script or your more than welcome to call.

As it was evident they were having a difficult time obtaining the exact nerve responses, he opted to stop and as he stated, "I'm going to get the BOSS." I found his use of words not having a parallel with his status as an MD. When the BOSS arrived it turned out to be a blessing as the "Deprtment Director" took charge with the tech to complete my testing.

"You sure APPEAR to have a mild case." Could he of said this because I was still alive or not in whats called the "Locked-In Syndrome.

Today, as everyday is a new life. I'm blessed to continue my CPM Awareness....

Franky and Breeze

[Buttons2]

Oh Breeze! Just what you didn't need right? I understand how APPALLING this guy's statement must have been for you! Just how many cases has he EVER encountered??? Geez!

Hope you are requesting copies of the doctor's notes....these little tidbits of what they observe versus what you have tried to relay to them are often like reading about a total stranger!

At any rate,how did the testing go? Are you able to obtain a FULL copy of these test results?

You are surviving against all odds-keep up the fight but don't allow the nitwits out there to set you back! Give Franky a hug!

Take care,Buttons

[dahlek]

TRAINING THE DOCS?!!! Definitely a 'break out the 2'x4' MOMENT swinging as widely and solidly as we can! Frankly, I'm somewhat surprised you don't have all sorts of 'red flags' all over your file....as in: TALK TO X OR Y before doing anything! It's soo hard to provide constructive criticism when docs could get their backs up and be counter-productive...Is there any doc at that facility you could talk to that you trust, one who could instill a trifle of tact into that newbie? Or, Oldie?

There are times when I think we ALL should be wearing those No Turkeys Tees on a regular basis. While this kind of incident should put fur on our chests, all I'm getting is more gray hairs! IF I'd gotten chest-hairs in all my diagnoses and 'maintenance' processes, well I would probably look like a Ware-wolf! Howling at the moon, no less! Just imagine this person...years down the road, telling tales at conferences of HOW he'd met one w/MILD CPM?

To all, after having met Mr.Breeze, I can tell you that he is what we all want to be...a person that's challenging docs every step of the way! Prove to me that what you know is NOT WRONG...after all, LOOK AT ME! Breeze,you've never given up, and you shore are showing them! Go get them!
We all can learn a great deal from his adventures.

Good thoughts and scritches for Franky! - j

[WhataBreeze]

Greetings to you who give me strength...

Dahlek, twas a blessing to connect with you a few years ago. I wasn't hard to understand the kind of person you are when you searched me out when noticing a family in need do to another acquired case of Central Pontine Myelinolysis. With your alert assistance, we (The family and I) could do the immediate followup with said medical care as I'm sure they noticed quickly we were in tune.

It's so hard sitting back as when your a Foundation of one, you must pick your spots and be correct. I now look back of my first contact with Augusto Odone of the "World Wide Myelin Project." I saw the movie "Lorenzo's Oil" with Susan Sarandon and Nick Nolte playing Lorenzo's parents. Now I know why that movie and the day I first communicated with the Myelin Project and Augusto have had such a powerful need for me to go forward in a similar cause except for cause and cure.

The type of assistance I'm available to some may call prehistoric. As you will see below is an update from a CPM Survivor as those of us keep our own health updates between ourselves as we see there has been NO interest by those in the "World of Health Care" that feel those of us blessed to get past the initial CPM Grim Reaper could assist in this life cause.

Breeze: (Real name edited)

Report on my current CPM:

I am on what they term a level state.

No worse and no improvement.

Still have severe hand tremors, slurred speech and walk with the aid of a cane.

Am waiting patiently for January 2007 as there should be news from Daval International regarding trial results of AIMSPRO!

I can get it by paying 182 Pounds (England) a shot. Three shots a week are recommended but I refuse to pay, "As our Health Service gave me CPM" so if a treatment is available, they can pay for it.

Tried to get on Trials to no avail as all participants have "MS" and DAVAL "Knows NOTHING Of CPM."

Some things just don't change eh.

Also, I REFUSE to see any Neurologist as I have seen so many and to be honest with you, if you don't have MS or PARKINSON'S, they are ________ clueless!

Hope you are coping with your CPM. Guess not to bad as you have traveled.

Bob

Please view the Myelin Disorder Forum when time permits. G-d Bless...

Franky and Breeze

[WhataBreeze]

Good Morning Members and Viewers:

Many already are "Aware" of my trials and tribulations as I do everything in my power on my own as a victim of CENTRAL PONTINE MYELINOLYSIS to follow correct procedures making the right contacts of those REAL caring individuals in right places that will actually carry my efforts and message as it will bring, "World Wide Awareness."

I am so pleased to make the following announcement. Yesterday, I received an email from a Director of one of the Institutes that make up the National Institutes of Health in Bethesda, Maryland just outside Washington DC.

Note: This message will be partially edited in regard to personal names.

Breeze,

"This is tremendous that you are able to do this. To share your experiences with others is a wonderful gift that many are unwilling to participate. Your actions bring hope to others who are confronting situations similar to you."

"Keep up the great work and I know others appreciate your assistance and guidance."

"It was good to see you at the NORD meeting and I hope you have been able to follow up after your discussions with the other NIH Institute at the meeting."

Take care

Director

To Be Continued.....

Franky and Breeze

[WhataBreeze]

Those of you who know of me or have continued to follow my postings as I expect to make a difference in the WORLD by bringing AWARENESS to my own said to be not only Rare Orphan Disease, CENTRAL PONTINE MYLINOLYSIS but also highly unrecognized for reasons unknown. I have every right to make this statement as I have personally researched most all the information one is allowed to including all the articles I've personally paid up to fifty dollars for twenty four hours of usage.

You may of heard this saying as its one of my favorites. I'm sure I've posted it at one time or another. Being one who admires old sayings, this might be the one that will direct me in a way that the saying thoroughly advises.

"G-d has blessed us with two eyes, two ears, and one mouth for a reason."

Since my last posting I decided to take a few days to watch and listen. In fact I visited several forums right here at BrainTalk to see the new changes after the "Fall Out," as the new B/T begins a new life.

Being a CPM Survivor is as many doctors who admit they are aware of this horrific iatrogenic acquired disease, is quite an accomplishment based on mortality percentages. Personally speaking, the chronic symptoms that I continue with are those that have to be accepted as I force myself to be able to work around them if I will reach the pinnacle goal I've set for myself.

I have decided even though the entire basis for how this unbelievable event happened to end an outstanding professional career over thirty plus years, I must stay on my orriginal course of "Turning negatives into POSITIVES and squeezing lemons into LEMONADE."

Starting my research going on four years now by obtaining the "Correct Spelling," for CPM and learning how to "Google," I have been able to use my professionalism (With the hitches that accompany CPM.) to work independently as I'm getting very close to those few out there that I will be able to pass the ball to as I will still accompany the process all the way.

I still think back to the first major plateau I jumped to when contacting the "Myelin Project." Many of you who are not familiar with this World Wide Research Organization may remember the wonderful heart felt movie "Lorenzo's Oil" with Susan Sarandon and Nick Nolte. These wonderful people gave me what I needed to set out on somewhat of a similar course as Lorenzo's father Mr. Augusto Odone'.

***** I've ommited much between these two paragraghs but stick with me.********

To bring you all up to date, with the assistance of a few NIH offices, I shortly will be making my first official meetings strictly in regard to Central Pontine Myelinolysis world wide lack of knowledge and awareness. As I'm receiving tremendous advice from many to be named at a later point, there are presently about six institutions under the NIH flag that we plan to be involved with.

To be continued....

Franky and Breeze

[WhataBreeze]

Hello my kind viewers. Yes, It's been over a week since I have posted. There is only one possible reason if you should not see postings me, which knowing your support like I do, you know I'm in a period of not being well enough to put my thought together. I will tell you that it won't be long before I come to that fork in the road that a major life decision has to be made.

Central Pontine Myelinolysis is not going to continue to secretly take lives as it has at a minimum the year 1959, the first time it was brought to the forefront by Dr. R.D. Adams and his associates. I only wish my words as a CPM victim could fall into the hands of those who need me to as the one who by being studied can be enough to finally make the "Truth Be Known."

Don't get me wrong as I presently am blessed to be associated with very influential people who believe in my efforts. I also plead with you my followers to continue your support that fuels my soul as I move on.

The day will come that you can say, "Oh CPM, I remember hearing about that. It's unbelievable what has been going on in this world for so long." The next time you hear of anyone being dehydrated, have heat stroke, are in an alcoholic stupor, have a water imbalance, going for a liver transplant, find a friend with an eating disorder, etc. There are many more simple examples but these few possibilities can be you, family, friends or even an acquaintance. I make this final statement today. Those who succumb to Central Pontine Myelinolysis will rarely EVER have the truth listed as cause of death.

I will live on with my uncurable mix of CPM symptoms but as I do, my drive for it's AWARENESS will live also. G-d Bless...

Franky and Breeze:cool:

[WhataBreeze]

Hello B/T Members and Viewers

I'm so pleased to say my CPM associate and friend in the UK that I was blessed to meet here at B/T has been approved for the only clinical trial with "Aimspro by Duval," the real drug. It is being used presently for those in stages of MS.

It really gives me such validation as we go forward together, he on that side and me here. I don't usually state much about the woderful CPM contacts I've made all over the world. In a way, I have very deep feelings as we all were blessed not to die immediately as most diagnosed with Central Pontine Myelinolysis. In fact, most all of us have such varied chronic symptoms, there is such a mutual interest checking up on one another.

CPM, stated to be an acquired by iatrogenic causes gives us every reason to seek some form of restitution that will at least help each one of us for whatever future health issues will be there to challange us.

Now that we with CPM have finally been acknowledged, as stated by being added to the clinical trial which is all MS diagnoses, can continue to make our plea for "Awareness" loud and clear.

Just as a side note, my dear friend was my first known personally that was successful in regard to his battle for validation with restitution. As we all know, there is nothing worth good health.

We happen to communicate this morning here and afternoon in the UK. As we thought back together, of all the positive Activism we together continue in different parts of the world knowin it will eventually come together.

Have a comfortable weekend all. G-d Bless...

Franky and Breeze

[cpmdaughter]

Thank you for posting your information about cpm. My father was digonsed over 7 weeks ago with cpm and wow, what we have been through is unreal. He was in one hospital and had a soduim imbalance they treated him for 4 days and 2 days later he could not even walk he looked as though he had a stroke. I feel that medical professionals are at fault and I do not want another family to have to go through this. Any information you can provide would be greatly appceriated.
Kim

[dahlek]

He is living Proof that one can survive, and function against all odds.

Heaps of hugs and all good things in the meantime, any neuro illness is, well, NOT a walk in the park!

Be strong of heart, and soul, and more especially MIND to sort thru all the medical morass - you will get to the right place -I believe it, because I have to. - j

[cpmdaughter]

Thank you for the kind words, I know that we will get through this. I have been doing extensive research on cpm and trying to find out all I can. Do you have it too? It is extremely hard for me to see my dad like this, he has a feeding tube his speech is poor and he shuffles his feet when he walks. But on the other hand I never would have thought he would have gotten this well. We have to take each day for what it is and try to turn it into a positive. God Bless you.
Kim

[WhataBreeze]

Hi Kim,

I look forward to assisting you when your ready. My B/T associate Dahlek knows to contact me when the CPM alarm goes off. She is quite a kind sharing lady. Yes, in our initial contact your right on course to learning of the reality having the CPM connection to a loved one. We will "Talk" and you can adjust to a few suggestions I have made to many who I hate to say atleast were aware of the truth. Most importantly to be the best for you and your Father you must learn to "P.A.C.E. Yourself." (Positive Attitude Continues Effort)

I will be pleased to join your family, "Team" as you begin what G-d blessed you to do. Right now the only importance is your Father's current care. Until then my friend.....


Franky and Breeze

[cpmdaughter]

Franky,

Thank you so much for your response to me, may god bless you. I am looking
forward to calling you and hearing your advice I am sure it will help.
Kim

[WhataBreeze]

Hello Kim and Family,

I very pleased to be able to come to you and your families assistance as your father has become another victim to the iatrogenic acquired Central Pontine Myelinolysis. Yes, it is somewhat hard for anyone to believe anyone can be instructed to go directly to their hospital emergency care by your own primary care physician with the symptoms of what I would assume was severe dehydration, be treated by those educated and trained for a very common medical complication and within a few days be blessed to still be alive looking ahead to life with the chronic horrific symptoms without possibility of any cure.

I can only continue my personal efforts till someone within the "World of Medicine," who knows what I'm saying first is truth and second has the memory of what they said as they repeated the "Oath of the Healing Arts." I've never made a statement such as what I'm about to say. I can only pray that ANYONE who views this posting that has what it takes to send a louder message than I have to date, join me as this "Worlds Health Care System," has to STOP and recieve educative training in regard to "ELECTROLYTE UNBALANCES."

How many "KNOWN DEATHS" and "SEVERE CENTRAL NERVOUS SYSTEM DISEASES" is it going to take for the "TRUTH" to finally be known?

There are to many wonderful caring individuals in Heath Care to not have any knowledge of CPM and how its their own associates responsible. PLEASE, someone MUST stand up. G-d Bless...


Franky and Breeze

[cpmdaughter]

Franky & Breezy,

Thank you so much for the taking time out of your day to talk with me. It was nice to have fianlly talked with someone else that can relate. I plan on staying in touch with you and you are in our prayers and together we will all get through this.

Kim

[WhataBreeze]

Franky & Breezy,

Thank you so much for the taking time out of your day to talk with me. It was nice to have fianlly talked with someone else that can relate. I plan on staying in touch with you and you are in our prayers and together we will all get through this.

Kim
Hi Kim and Family

I want you to be at ease because your exactly as we all have been just after learning of a CPM diagnosis to a family member or in fact anyone. Back before BrainTalk had its last "c r a s h," someone with some connection to CPM would pop up. I surely can't say it hapened regularly mainly do to the sad fact that most of the time its another unknown mortality or it becomes a statistic for the "Locked In Syndrome." I keep pounding away as best I can. The fact that I know what is happening and "They" know I know helps fuel my daily energy reserve.

I September 05, I planted the seeds on Capitol Hill in Senator/Dr. Frist (Senate Majority Leader) office as his health staff I must say were extremely cordial as we had a very positive meeting with an MD present.

It takes time I know and I've made myself become very patient or maybe it's the meds. Anyway, we must all work as a TEAM assisting our own and if there is anything left even word of mouth is wonderful awareness. As a matter of fact, the best assistance that really helps is to become as knowledgable as you can about CPM and every time you are in the company of anyone in the world of health care or medicine is the time to "Ask and Tell."

Give my best to your Father and Mother and hoefully it won't be long that we can "Slurr at each other and forget what we said." Have a comforting weekend my friend. G-d Bless...

Note: Pace ("Positive Attitude Continues Effort") Yourselves!


Franky and Breeze

[WhataBreeze]

I know many of you, both members as well as viewer have been so kind either by your posts of your care about a disorder that has become a mystery killer that no one ever acted on. Your support over the last few years has meant alot to me. I know I'm getting so close to cracking this sad bit of reality that goes on daily all over the world. Today, Mother even stated to me she hates to see how this cause has effected me emotionally as I really get affected everytime another CPM victim is spared to live on in whatever chronic condition they are left in.

My prayer is before it takes me, this wonderful world of healthcare will step up to the reality of what was done under their care. All you will ever hear for the small percentage that live on is, "There is no cure and only the symptoms are treated." It continues to amaze me that the cure is very simple.

Cure: AWARENESS and EDUCATIVE TRAINING!

Stay with me as in time "I will hit the nerve thats still MYELINATED."

G-d Bless...


Franky and Breeze

[cpmdaughter]

Franky & Breeze,

What you are doing for the people that encounter cpm is a mircale. Not only being an advocate for us but having it and being able to know first hand what it is and what it can do to ones body. If there is any way that I can assist you all you have to do is let me know. My hope is like yours we need to educate the medical proffesionals so that this does not happen. My dear old dad had said to me this weekend his only wish for Christmas is that he could eat something. As I told him we need to be thankful that he is living and it could be worse and he knows this. I along with many other people take a lot for granted, just little things that we do not even put much thought to. We all need to live life to the fullest and be thankful for what we have. I hope all is well with your mother and that you had a nice weekend. You are in my thoughts and prayers.
Kim

[WhataBreeze]

Good Morning....

Yes Kim, there is not a moment go by that I ask myself how can so very few within the healthcare world have little to no clue in regard to CPM. (Central Pontine Myelinolysis) I remember just over three years ago when I first pulled it up on Google. There were 1500 (YES HUNDRED) available links. Last time I checked CPM was up to about 65,000.

At times I really get a bit confused as I ask myself can this really be happening or how on earth can nothing of been happining until I decided to start my own march on Washington, D.C. to plant my initial seeds.

I'm sorry but what is currently happening in regards to everything involved with CPM is to hard to believe. Could that many be acquiring this CPM that is stated that the cause is assisted by error. It is a fact there are over 6000 Rare Diseases. However, after all whys, do's, dont's, etc. it still leaves a mysterious set of reasoning behind.

As I was instructed when I went through my own first initial therapy program, CPM victims blessed to still be alive no matter the chronic state or status of the illness, we must take care of ourselves first before we can assist in any other venue.

What I do know, is I have no plans to go away as my work will continue as the "Day Will Come," as the Reality of the Truth will get to the right people.

OK, I'm going back to sleep. G-d Bless....


Franky and Breeze

[cpmdaughter]

Franky & Breeze,

I hope all is as well that can be expected with you today. As long as we are living it needs to be a great day. Not much news on my end lately. My dad do go for a follow up MRI but will not get the results with his doctor until the end of November. We all try and keep his mood as good as it can be. Some hours are good and others are not. Patience is a key factor and finding the positive. But it can be done and will be done, You are in our thoughts and prayers
Kim

[WhataBreeze]

Hello my friend Kim,

Again, I want to tell you how pleased I am to not only see your updates in regard to your Father's initial challenge with his acquired CPM. (Central Pontine Myelinolysis)

I'll tell you, since Mother is being assisted presently in the hospital, I've had a chance to catch up on some of my research which I'm pleased to say how involved many countries all over the world are starting to send more CPM information from within their own countries.

From what I've followed over the last three to four years compared to the initial pace starting in 1959 is actually going at a rapid pace. In my heart and mind, I know we who have had to accept CPM as it's life directive will hopefully be those who finally force the issue to be recognized.

Those of us here with CPM no matter our current chronic status, must continue to band together as it will be us that finally will be heard.

My best to your Father as I hope to communicate with him in the not to distant future. Also please remember my thoughts about todays MRI for your Father that has been notified to you it will have results by the end of the month. Knowing what I know in generalities, I have much doubt in the source where that person works. You must stay on top of everything. G-d Bless....


Franky and Breeze

[cpmdaughter]

Good Morning Franky & Breeze,

I first off want to thank you for the nice email on Thanksgiving day. I hope all was well with your thanksgiving. I had an excellent week with my family. My father is doing much better, and I can only hope and pray he will continue to go up hill. He has a swallowing test today to see if he can start eating. I will keep you posted. Not to much else is new, I will also update you on his MRI results Tuesday when I hear something.
God bless you
Kim

[cpmdaughter]

Good Morning Franky & Breeze,

Great morning to both of you. I hope and pray your mother is doing better. I want to thank you for taking time to talk with my father over the weekend. For him to be able to talk with someone who can relate I am sure done him a world of good. Thank you and god bless you.
Kim:)

[cpmmom]

Hi everyone. I stumbled onto this site by searching Webmd for information on CPM. December of 2005 my daughter, 12 at the time, was diagnosed with CPM. She received this injury from the doctors!!! (Ironic how doctors are suppose to help you!)
We learned in Oct of 2005 that she had a brain tumor (Craniopharyngioma to be exact) She was discharged the following month. After the brain surgery, she had to be put on a lot of medicines. One was to regulate her sodium! (We never realized how crucial your sodium level was until Dec. 23)
When she was discharged initially from the hospital, the doctors had toyed with her medication to regulate her sodium. She was never on the exact same amounts for consecutive dosages. However, they discharged her on a dose that we now know was extremely high! Her body began to swell as the weeks went on. I called the endocrinologist to ask what was wrong. They replied "You are feeding her too much!"
Upon readmitting her, her sodium was 126. They IMMEDIATELY took her off of her DDAVP (her sodium medicine). Over the course of 24 hours, her sodium shot up to 157. Being ignorant, we thought they knew what was best and trusted them. My daughter went into the hospital walking, talking and able to feed herself. Within 3 days she was no longer able to make coherent statements. After my husband insisted, they moved her up to the PICU. She continued to get worse.
After getting to the point where she was almost in a comatose state and once again the insistence of my husband, they preformed a MRI which determined she had CPM. Since then we have been through ****!!! We had to take her to another state so she could receive rehab to get her to where she is today.

[WhataBreeze]

Hi everyone. I stumbled onto this site by searching Webmd for information on CPM. December of 2005 my daughter, 12 at the time, was diagnosed with CPM. She received this injury from the doctors!!! (Ironic how doctors are suppose to help you!)
We learned in Oct of 2005 that she had a brain tumor (Craniopharyngioma to be exact) She was discharged the following month. After the brain surgery, she had to be put on a lot of medicines. One was to regulate her sodium! (We never realized how crucial your sodium level was until Dec. 23)
When she was discharged initially from the hospital, the doctors had toyed with her medication to regulate her sodium. She was never on the exact same amounts for consecutive dosages. However, they discharged her on a dose that we now know was extremely high! Her body began to swell as the weeks went on. I called the endocrinologist to ask what was wrong. They replied "You are feeding her too much!"
Upon readmitting her, her sodium was 126. They IMMEDIATELY took her off of her DDAVP (her sodium medicine). Over the course of 24 hours, her sodium shot up to 157. Being ignorant, we thought they knew what was best and trusted them. My daughter went into the hospital walking, talking and able to feed herself. Within 3 days she was no longer able to make coherent statements. After my husband insisted, they moved her up to the PICU. She continued to get worse.
After getting to the point where she was almost in a comatose state and once again the insistence of my husband, they preformed a MRI which determined she had CPM. Since then we have been through ****!!! We had to take her to another state so she could receive rehab to get her to where she is today.

THOSE OF YOU WHO HAVE VIEWED THIS POSTING #29 BY cpmmom I CAN ONLY HOPE WILL GIVE YOU THE WAKE UP CALL THAT I HAVE CONTINUED TO PREACH OVER THE LAST FEW YEARS. HOWEVER, THIS BEING A 12 YEAR OLD GIRL WHO HAS ACQUIRED CENTRAL PONTINE MYELINOLYSIS, THE IATROGENIC CAUSED DEMYELINATION OF NERVES IN THE BRAINSTEM IS A FIRST HERE ON BRAINTALK.

AS I HAVE BEEN SAYING, ANYBODY IS SUCEPTABLE TO THIS ERROR OF TREATMENT. I PROMISE IT WON'T BE LONG AS OUR OWN NIH IS GOING TO BE INSTRUMENTAL IN BRINGING THIS MISTIFYING HEALTH SECRET TO THE REST OF THE WORLD.

cpmmom, PLEASE PRIVATE MESSAGE ME AS I WOULD LIKE TO POSSIBLY CONTACT YOU WITH YOUR APROVAL. G-D BLESS...


Franky and Breeze


Note: My CAPS BUTTON was not stuck.

[cpmmom]

I wanted to thank everyone for their concerns and prayers. My, now 13 year old, daughter seems to have made miraculous strides towards recovery. By reading your message Kim, it took me back in time. What happened to your father is exactly what happened to my daughter. I am very glad to hear that he is doing better. This is a horrible condition that can be prevented! I want to do everything in my power to help educate everyone about this. I have already made a Myspace page with her story on it. I am hoping by doing that, it will get some exposure. If anyone has any ideas about getting information out about this... please let me know!!! Thanks again for all of your concerns and prayers!

My myspace address is: http://www.myspace.com/cpmmom. I only have her story on there up to the point of her actual diagnoses of CPM. I haven't went through the recovery process yet.

[WhataBreeze]

Hello Everyone:

As I could see this Forum picking up a little, I didn't feel it was fair to bump up this Thread without a good reason. Having been contacted by four new families since the first of the year might not sound like many but these are people who have "No Where or Nobody to turn to." Being a CPM Survivor for five years now may be totally outstanding. I Wish I Knew! Yes, when you acquire any toxic said to be fatal or chronically severe disease/disorder by iatrogenic or hospital error, good luck finding assistance. I'm not saying it can't or won't happen but, etc.

Four three years I've been saying it won't be long before my "Lighthouse of truth and reality," will send out a world wide wake up call. Somebodies message is going to lift many an eyelid. Central Pontine Myelinolysis, said to only take approximately 20 to 25 lives a year in the United States according to public record I personally feel according to our Wizard's of the Healing Arts you may be able to multiply the number by a 1000 or better.

I was taught many years ago if you tell the truth you won't forget what you said. "The hardest thing is seeing reality is how to accept it."

Of course if I have my way, it will be the United States that opens CPM AWARENESS to the world. Let it be known, the NIH, (National Institutes of Health) NINDS (National Institute of Neurological Disorders and Stroke) to the best of my knowledge has put out the most recent and updated "CPM Information Page," (See signature below) that is totally TRUTHFULL in regard to any possible CURE. Please view, "What Research Is Being Done." G-d Bless...

Franky and Breeze


Note: Those of you that have viewed any of my 1,000 plus Postings, you may have noticed my mention of the "Myelin Project," along with "Lorenzo's Oil," the wonderful 1996 movie with Susan Sarandon, Nick Nolte and Peter Ustinov. At a very low point post my CPM diagnosis, it was the Myelin Project who like everyone else did not have future plans for CPM. However, they were the first Health Organization who did open there door to me, which gave me what was needed most at that time being, "HOPE." If by chance not familiar with the doctor in the movie portrayed by the great actor Mr. Peter Ustinov, it was a man that has done incredible research as one of the worlds most renown and finest in regard to the Myelin. This man's name was Hugo Wolfgang Moser, M.D. Through Ms. Jaquiline and Mr. Augusto Odone' (Lorenzo's father portrayed by Nick Nolte in the movie) the Myelin Project, I was directed to meet Dr. Moser when blessed to be accepted by Dr. John W. McDonald and Dr. Cristina Sadowsky at the International Center for Spinal Cord Injury at the Kennedy Krieger Institute within the Johns Hopkins School of Medicine. Because of my results, Dr. Moser directed me on to aquaint myself with NORD, (National Organization of Rare Disorders) which brought me in contact with Dr. Steve Groft, Director of the Office of Rare Diseases at the National Institutes of Health. If not for these fine caring professionals in the "World of the Healing Arts," I would say at first I'm not sure I'd be Breeze and even more important is the fact of the possibility there would still be no one to turn to for some initial direction also I would of NEVER had the opportunity to open the doors to plant my seeds that have started to grow a yield of CPM Awareness.


________________

In Memory of Dr. Hugo W. Moser (1924 - 2007) "A Mentor and Friend"

http://www.kennedykrieger.org/kki_misc.jsp?pid=6101 In Memoriam
http://www.kennedykrieger.org/kki_misc.jsp?pid=6121 Personal Tribute
http://www.kennedykrieger.org/pdf/news/moser1.pdf The Doctor, The Father, The Movie and the Medicine

[WhataBreeze]

Hello B/T Members and Viewers,

I feel the time has come for the "CPM Awareness Foundation," to go back up. Personally, I am so pleased to see all the different media research information sources that are begining to follow the NIH/NINDS Information Page in regard to Central Pontine Myelinolysis. The changes that are now being addressed have the true reality of how and why CPM is acquired. Please if time permits please view the link that is in my signature below.

By the way, last night I had to visit a brand newly constructed ER at one of the best hospitals where I live. I had the misfortune of tearing my meniscus (cartilage) in my left knee. Yes, again in a very professional manner I needed to teach school in reference to CPM. You would see in research that the conciquence of treatment that leads to CPM usually has a good chance to happen in the ER. It's so hard for me to accept the fact that most have never heard of Central Pontine Myelinolysis in any ER. Hopefully I'll never accept this. G-d Bless...

Franky and Breeze

[WhataBreeze]

Good Morning B/T Community Members and Non Member Viewers,

As I continue to live with the "Aquired" Neuromuscular Disease CPM, (Central Pontine Myelinolysis) said to be So Rare With Out Cure, I want you all to know that the "DAY" is coming that will validate the TRUTH about this HIDDEN Disease that can only be diagnosed by MRI or "AUTOPSY."

I had a meeting yesterday with a very knowledgeable gentleman who made the statement to me, "You had a wonderful career, yes now living with CPM is a very difficult lifestyle and I was blessed to make sure if something out of the ordinary should happen, I'll be provided for." He proceded to tell me, why not find and do something in the balance of my retired years, I hope, to enjoy and be happy.

After hearing this advice, I went on to explain that one of the most common symptom with CPM is not having a need or desire to interact with people. However, it just so happens for some reason when it comes to assisting others with or without CPM I have found enjoyment being interactive as it has become a "Win Win Opportunity."

So let it be known, until this horrific disease totally stops me from, "Doing what I ENJOY to do, my plan is to continue to be there for those I can along with my individual plans of getting to the RIGHT people that can make this horrifying lie end." My dear viewers, the "CURE to CPM is AWARENESS!" G-d Bless...


Franky and Breeze

[WhataBreeze]

Speaking for all of us who live on with one of the acquired "Silent Diseases, CENTRAL PONTINE MYELINOLYSIS or CPM," known to be caused most often by iatrogenic causes, (Treatment Error) I thank you personally for making this Thread go over the 2,000 Viewer List I have here at BrainTalk Communities. Your viewing can assist us as we are close to our initial drive on the "World of the Healing Arts, Medicine and Healthcare." G-d Bless...


We Thank You...

PS: Franky To!!!

[Buttons2]

Well, I'll say it again Breeze-you are one amazing SURVIVOR of this terrible condition.

Wondering how your knee is doing? Progress in that area I hope!

Question, did they ever try steroids on you?

Take care,Buttons

[WhataBreeze]

Good Morning Everyone,

I wanted to start by saying that Buttons2 is one of a knd but it sure sounds much better saying "Buttons2 is two of a kind," and they are both Great! In regard to my knee, I will need surgery to repair a meniscus tear in my left knee. I'm currently babying it along until the "Great Wizzards of Medicine" can decide which way to go with anethsesia because of my current issue.

I have read the different attemped cures but nothing has been etched in stone. After all I've known the CPM cure for some time know as by the CPM Awareness I continue to get out there.

It is so nice to report that I can tell in a major way that several including the NIH/NINGS are really putting out "REAL INFORMATION and FACTS" about CPM. In my heart, something majoy is going to happen that will BUST this issue "Wide Open." G-d Bless...

Franky and Breeze

[Susie_que]

Hey Breeze, just wanted to say hi !
it's been a long time since I peaked in here at B/T. Have thought of you, Frankie & Mom though. Hoping she is doing ok. So sorry to read about your knee. Hoping they can figure how / what to do. I know if I were you, the hospital would be the last place I'd want to be. The thought of any of my family having to go to hospital now is so scary.
Give Mom a hug for me and give Franky a pat as well.
Take care guy ~ will try to pop in more often. I wish some of the others would return as well.
~s

[dahlek]

Having done the same knee twice {yep twice} in the past 5 years [first before my condition's onset, then this winter], I can truly identify with all your 'anticipations and fears'! In the meantime it REALLY REALLY must hurt!

Especially the first time as they could not tell by films etc whether it was tendon or miniscus damage and actually said to me: "We'll find out once we go in there". Yep you heard me right. I got off easily in that I'd just dented the inside of the knee-cap-they smoothed it out somehow. With the second fall, well, there was a hair-line second fracture, [they could see the first one clearly on films] was found a few weeks later when it'd started to heal. I'm now walking around sort of normally. If I can do it, YOU CAN certainly, as you are made of far stronger stuff than I. I truly can imagine how awkward extra little things of living are in the interim tho...

Key to any surgery will probably be having your doc 'educate' the anathesiologist and then [I'm betting], he/she will pass the details of that task to YOU. Don't let them start untill they sign an affadavit or something that THEY've done their homework!

In the meantime, scritch Franky for me! Maybe also, give him a cookie? Is he allowed extras? - j

[WhataBreeze]

Hello My Dear Community Members and Net Viewers:

Just wanted to let everyone know I'm still alive, kicking, spreading "CPM Awareness" and assisting CPM victims and their families all over the world. G-d Bless...

Franky and Breeze

[WhataBreeze]

Hello Dear Friends and Those Kind B/T Community Members,

If in fact this posting goes through I wanted to let you know I'm still out here try to assist all those with CPM world wide as it seems we all have so much in common. Since my Father, "May he rest in peace," taught me not to talk down those who truly deserve it, lets just say we are pulling together to do the best we can.

I'm always thinking about so many of you. G-d Bless....


Franky and Breeze

[Buttons2]

Hi Breeze! So good to see you post! How are you & Franky doing? I had a tumor removed from my rescue dog,Rags (luckily benign),and thought of Franky & your scare....

HUGS Buttons