NINDS Recognizes Central Pontine Myelinolysis

NORD "Rare Diease Community," Members and Viewers

Friday morning September 29th at the beginning of the 2006 NORD Conference in Bethesda, MD., I can remember hearing three important words the current spokesperson made. In regard to the Healthcare System, you cannot assume anything so the vital advice was, "You Must Ask."

After hearing these words, as I sat paying attention to everything I could absorb. This being my second consectutive conference, it helped pave my way as I thought back to what my neurologist told me when coming to see him for an appointment. Pick your three most important issues. Write them down so he could have a copy to keep so each time I come in, we can get to the new and old which will create a pattern that can be watched.

His advice helped me make the most of an opportunity that was going to be totally available there at the conference. As NORD is an extremely professional organization, their conference has been such a positive influence on me as well as my direction as I personally began to reearch CPM as I started posting as a Layman Advocate expressing and giving "CPM World Awareness and Assistance," in regard to my iatrogenic acquired neuromuscular, demyelinating disease of the Central Nervous System.

You may ask yourselves why am I bringing this up for discussion. The reason is that there are sources available to help you. No it's not an easy road to travel but there is no doubt in my mind, the constant everyday efforts I put in are also part of the reasons I'm still alive or haven't lost more faculties already.

I've been at this now going on five years. A few days ago I recieved a memo from one of the most caring individuals that I was blessed to be connected with strictly because of NORD. Dr. Stephen Groft, Pharm.D., Director of the Office of Rare Diseases within the National Institutes of Health was kind enough to congratulate me for my persistence and dedication as I made the information available and the informational document is now available on the NINDS Internet Site. (National Institute for Neurological Disorders and Stroke) Not including all those who continue to assist me on a daily basis when needed, my years of effort have now made my goal for the cure to CPM a possible reality. I found the actual "CPM Cure"immediately after starting my research but it was very evident then that it didn't matter. I had to pay my dues to make the breakthrough as I had my own CPM symptom complications to deal with.

Now as the 2007 New Year is near, my faith in what I accomplish as a CPM Layman Advocate will start with wonderful ongoing expectations. At this time, my personal appreciation goes out to those from NORD, Dr. Steve Groft and Staff from ORD, Dr. Naomi Kleitman from NINDS, Doctor's John W. McDonald and Cristina Sadowsky and my CPM Team at Kennedy Krieger Institute along with Doctor's Krauss and Sepkuty at Johns Hopkins Medical Institute all who have a part in the Official Recognition of Central Pontine Myelinolysis.

I truly feel my dream of bringing back the awareness that started when Dr. R.D. Adams and Colleagues first founded and named the white matter disease Central Pontine Myelinolysis in 1959. Why it became lost within the archives really doesn't matter anymore. In closing, a special "Thank You," goes out to Mr. Augusto Odone' the founder of, "The Myelin Project," and Dr. Hugo Moser from Kennedy Krieger Institute, who I'm sure is also very recognizeable right here at NORD.

I can only hope after you have viewed this piece my CPM Awareness Foundation motto word of "PACE" which stands for, "Possitive Attitude Continues Effort," will help you when thinking of a "Dream Becoming a Reality." G-d Bless...

Mother, Franky and Breeze

By WhataBreeze
Posted May 30, 2009 at 3:04 pm
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It's hard to understand having 3 (three individuals) at one time with Central Pontine Myelinolysis. Almost feel like we will be needing to require our own Forum (actually hope it never happens) even though many of us with CPM all feel the actual numbers put out through different statistical sources are way off.
As more of us begin to speak up, the insurance companies (both health and life) social security disability, it's a promise that many hospital risk management departments will be getting some very harsh "Wake Up Calls." It's truly so difficult for me to understand why this "Said to be," rare disease/disorder is still being hidden from the Public for over 50 Years. I'd hate to see the true statistics in regard to false "Death Certificates," which has been mentioned in the research I've read over the last seven years. It's getting so bad lately even lawyers that do med mal are losing their unique touch. I know many of you I've chatted with privately in regard to going to court. Trust me when I tell you sometimes the law can be as bad if not worse. Even my ssda started seven years ago and we still have not seen the good man with the black cape. This is a very sad issue of life. It's stated in possibly one of the largest information networks that there is NO african americans on record that have CPM. (Central Pontine Myelinolysis) I'm still pretty good with voices and sayings. It's been some months but a wonderful family in the Cincinatti, Ohio area has there father and husband now in an old age nursing home with severe hardships. Truly it's so difficult to believe what I've seen, read and heard during my personal research. Once someone puts the time in to research then maybe one of these hospitals could start a special program that the others can follow up on instead of the continuance of issues that make them a "Me To," also. What do we have to do to break a 50 Year Error that not only takes lives as it can be worse as those "Locked - In." This is not what's called venting.

Speaking As One With Voices For All, We Need Help...

Thank You...

G-d Bless....

Franky (My Boston Terrier Neuro Service Companion) And Breeze (That's Me)

By djmtard
Posted May 30, 2009 at 9:29 am
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I am sorry to tell you that you will probably never get your dad back...He will improve with therapy. He and you will adjust to his "new self". You have to be patient. I know that is hard to hear but, it is truth...My boys who are 11 and 13 are dealing with this on a daily basis...Sorry to be so blunt, but the sooner you except that he will never be the same the better!! Then you can get on with helping him adjust to his new life!!

By bitsofglass
Posted May 30, 2009 at 9:20 am
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i think my day has cpm. He was hospitalized with low soduim on 04/13/2009 (level 114), His levels were raised and all seemed well until about one week after he came home. Then he began asking me crazy questions about how to perform simple everyday tasks. He says he feels lost sometimes. He is 88, but prior to being in the hospital, he was driving and taking care of his finances--now he is afraid to be alone, He had a CAT scan and it showed no stoke. He can not have a MRI due to having a pacemaker. He had a EEG on Tuesday and we return to the neurologist on 06/22/2009. Doc said last month he was 99% certain dad has cpm. I have been researching online and I am scared. Will there be improvement? Will I get my dad back and more importantly, will he have himself back.

By WhataBreeze
Posted April 21, 2009 at 5:19 pm
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Hello all my ear followers! Yes the last 6 to 8 mo ths ha e bee harsh to cope with just li e this lap top! 1 thi g I promise you all is that I will go bac to Washi gto if I ha e to! The TRUTH must be RELEASE about CPM! (Ce tral Po ti e Myeli olysis) I ha e helpe so ma y people plus their families e erywhere! They all say I will be history by this time!!! I suarace Compa ies better hire smarter actuauries!!! Go Bless (~8

Fra y is GREAT as I still am the BREE E

Better Laptop Or PC 4 Me!!!!

By djmtard
Posted April 13, 2009 at 10:34 am
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I am so happy to find someone else with cpm. I got this disease after being put on 2 sodium waisting drugs. On Sept 12, 2008 I was finally hospitalized after being mis-diagnosed for 2weeks! My sodium level was 100 when I was finally admitted! I was in a coma for 10 days. The first thing I remember is on October3rd when I woke up in a nursing home! I spent a month there before going home to my husband and 2 boys. It is April now and still finding new problems! I have tried to find what the future holds for me but, nowhere do I find anyone who describes what my future may be.

By WhataBreeze
Posted December 13, 2006 at 1:53 am
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I neglected to make the link available in regard to the above article in my initial posting of this disscussion. Please see below.

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

I'm very pleased to notify everyone starting with Abbey Meyers, President of NORD through every NORD Member and viewer, that since this Internet availability of this NORD, "Rare Disease Community," two more CPM victims as well as their families have both located and communicated with me. Many of you knowing exactly what your initial feeling was one you contacted a peer with the same rare disease/disorder.

In closing my comment, I have a very legitiment request of the official NORD Organization who has been one of the most important factors in my personal direction bringing the CPM Awareness issue which also by the way happens to be CPM's CURE.

I feel the time has come for NORD to officially recognizing CPM also as it will sure be sad not to take recognition of the wonderful positives to be shared by all such as NIH affiliates ORD, NINDS and hopefully several others with possible links to CPM.

Wishing you all a positive sign in all your health issues thin coming new year of 2007.

Franky and Breeze

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