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View Full Version : CPM: My Five Year Anniversary


WhataBreeze
02-07-2007, 12:44 AM
To: World of the Healing Arts, Healthcare and Drug Manufacturers

From: All of us that have been diagnosed both pre and post mortem with Central Pontine Myelinolysis since 1959.


Dr. R.D. Adams, the lead neurologist of the team studying this unknown disease from cadavers of those victims who died with the critical disorder of alcoholism was responsible for the name of the white matter disease of demyelination. In fact it is said the initial diagnosis of CPM to those alive post the demyelination period which has been stated to be as quick as forty eight hours did not happen until aproximately ten years after it's naming.

I'm pleased to say after my official diagnosis of CPM in mid 2003 (Yes, it's a long story to justify my 5 Year Anniversary) as my acquired disabilitating CPM symptoms ended my long professional career I began my research as a layman. It's hard to believe but as I started my direction, it was Google that initially was my guide to learn as much for my own world renown neuroscience physician to give me the title as the #1 CPM Layman Advocate in the world.

Yes, I said Google as the first time I pulled up Central Pontine Myelinolysis, there were just over 1,500/Fifteen Hundred available links including the "Generic Information Pages" that were all the same with only a change of sponsors name. As it might still seem to most as a minimal amount, today there are over 70,000 available CPM links. Pull up Myelinolysis only as there is a version of CPM referred to as EPM (Extra Pontine Myelinolysis) which is the case when demyelination occurs outside the pons of the brainstem. Mylinolysis only, now on Google will add an additional 10,000 to 15,000 links which takes it well over 80,000 links.

At this point, the fact I'm doing my best to bring is Central Pontine Myelinolysis, the world wide secret of "Hospital Error," said to have no cure is to the best of my knowledge a complete falsehood as the actual cure is the error itself. The actual mortality statistics are impossible to be authenticated. This is why the truth will bring the AWARENESS needed to be able to truly CURE this horrific IATROGENIC TOXIC NEUROMUSCULAR disease/disorder of the Central Nervous System.

I continue to pray as NIH, (National Institutes of Health) NINDS (National Institute of Neurological Disorders and Stroke) and ORD (Office of Rare Diseases) has begun to answer.

It is God's vision, those of us who have been blessed to survive CPM along with our chronic futures will be able to watch what many fine physicians have been steadilly reporting in their articles of reality. We are very close to what we who have CPM pray for you to never have to experience. G-d Bless...


Franky and Breeze
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February 13, 2007: I really didn't want to add another Posting to this Thread at this time. Both Buttons2 and Javisi still continue to offer their thoughts as well as cordial wishes as they did for the last few years. They both have experienced what the old BrainTalk Community was like pre-crash. It's still wonderful to come back to B/T every few days at it really has been a helpful experience for many needing support and the assistance or advice someone could find from those of us who have been living the issue.

Buttons2 and Javisi, I'm very pleased to say what those who had knowledge of CENTRAL PONTINE MYELINOLYSIS knew when it was first titled. There is a CURE for CPM. It's called AWARENESS by those whose position it is to order treatment that has to be carried out by nurses, techs, etc. Some of us who live on with the severe symptoms of this chronic disease, have discussed the unbelievable reality how this concequence of Hospital Error that only gets diagnosed by MRI if your blessed to have a real professional caring physician of the "Healing Arts." The only other possibility is post mortem by autopsy and how many times does the family want to pay for that especially when God only knows what they were previously told. The truth is CPM is not as RARE as those responsible have found a way to make the world AWARE of. Trust me those who view these Postings as I have no reason for "Sour Grapes," as I've been blessed to live.

_________________________

Buttons2
02-09-2007, 12:44 PM
Wow, Breeze-you are an incredible man, do you realize that? Your faith has never wavered, and you have done sooooo much to get this horrific "condition" out in the open.

Congratulations on 5 years of survival, may there be many more years ahead for you.

Hugs to you & Franky!
Spring walks are coming soon!
Buttons

JAVISI
02-13-2007, 01:52 PM
Breeze,
I haven't corresponded with you for so long! It is really good to see your name. It is sad thatThey can not find the cures for so many of these Neuro problems.

It is just like anything else if it is rare not much is spent on finding a cure.

Congratulations on your 5 years, I am happy for you and Franky:D

Dream Big with Inner Peace, Javisi;)

WhataBreeze
02-14-2007, 11:12 PM
As those who have followed my Postings over the years know I seem to end up in three Forums at any given time. Myelin Disorders, Advocacy and Activism have been my main stay over the last year but I'm starting to enjoy it here in PCI. Put the Psychology label on it and it gives me liberty to go any which way. I use to include both my Father and Mother off and on in my postings until Dad passed in March of 2005.

Today I feel a definite need to put Mother back up in the lights. Naturally with the incidence of what I went through in regard to my acquisition of CPM, I hope your ready for this. I have to walk Franky, "Be Back Soon." ;) OK, here we go again with "Health Care Hippaa Jig." Today dear kind Mother who turns 86 in March experienced surgery for the first time in her life. Suffering for quite some time as her knee has limited her life for a couple years as it was initially the opinion to continue with shots and drainings of fluid. Mother made up her mind if she was going to have the party she has been telling everyone about when she reaches 100 the decision was made she can't go on in this current mode.

Myself being the youngest child of two but now residing together again as we had hoped to assist each other with our needs along with a care giver have power of attorney in regards to about everything we could think of and definetely including all health care issues along with the care giver do to my own chronic illness. (I'm getting pretty good at it when the cards are on the table.) I'm hoping someone in the "World of Healthcare," reads this Posting and can explain this.

Mother was taken into the actual surgery suite at 11:30AM. Sometime after 1:00PM she was taken to the Post Op Recovery. Our care giver was contacted by a hand held paging system as I had to come home to rest and recharge my good brain with the faulty "CPM Demyelinated Brain Stem Nerves." She was told to go into the consultation room and the "Surgeon" will be in shortly to give her the surgical results and current condition. Two hours later, no consultation, no doctor, no current info status, etc. As she was told, no one is allowed in recovery with the patient along with still no status update. I made the call to the hospital planning to weave my way through all the unnecessary obstacles to just get the status of my own Mother. Having God's blessings as I continue with life, the hospital operator whose cordial and knowledgeable ways, listened to the entire situation an preceeded to remain on hold. Aproximately two minutes later I was talking directly to my Mother's recovery room nurse. After giving her the "Short Form" of what has been happening outside the Recovery Room, she explained that she was unaware of what was happening and went on to tell me Mother's blood pressure numbers were low, she has continued to have breathing problems and she needs to be monitored there in Recovery but it was her opinion she was in no danger.

With that I was dressed, took Franky out to do his duty and off to the hospital I went. As I arrive at the hospital, I'm notified that our care giver has now been allowed into the earlier "Not Allowed Recovery Room," and she will come to the surgical waiting area to get me and take me back to see my Mother in that same "Not Allowed Area." Now being close to 6:00PM the very first question I ask the "New Duty Nurse" as I'm quickly told is, "Has my Mother's internist who is "Chief of Medicine," at the sister hospital to this one or the on call hospital Pulmonary Specialist been called in regard to this issue. I am told, "In the Post Op Recovery, your Mother is in the care of her Surgeon and Anesthesiologist. At that point I couldn't say much more as we were then asked to leave as a tech came in to proceed with a blood gas test along with some others we had no clue were even ordered and by who since her Surgeon and Anesthesiologist left the hospital several hours ago.

With that off to the Hospital Cafeteria we went for dinner as the nurse told us to call her upon our return. We make the call and she proceeds to tell us to stay in the waiting area and she'll contact us when Mother will be sent to ICU. We changed her plan instantly as back to the recovery we go as its now after 7:00PM. Upon our "Unscheduled Arrival," I'm now told she called Mother's Internist with some rediculous info that meant nothing. After visiting with Mother a few minutes, we are given the Room number in ICU and told if we want to start up there she and Mother, "Will be on our heels." Following her instructions we go to the ICU waiting area just outside ICU that has a clear view to see anyone moved in or out as we saw a gentleman being moved in.

Still waiting at about 8:15PM, our care giver desides to go in ICU to now try for more info as for the ____ time we either get no info or wrong info. You can imagine how I'm feeling and our care giver walks back in to tell me someone other than Mother is in the room were told but Mother had just got there about fifteen minutes earlier and in a different room there in ICU. She then proceeds to tell me there is a back way to bring patients in which was the case and Mother's escorting charge recovery nurse left no message that we would be in the waiting area or even wall out the normal ICU entrance to notify us. I can only hope you have the picture. "Happy Valentines Day." G-d Bless...


Franky and Breeze

WhataBreeze
02-19-2007, 11:58 AM
Hello Everyone:

Not really sure if it's a belated CPM 5th Anniversary acknowledgement but to my surprise I was contacted by a bioscience firm with offices in the US and Germany. What a new direction they have put me on as again I get to add another important link to the actuallity of why Central Pontine Myelinolysis is being kept somewhat of a hidden secret. It was somewhat hard for me to believe even in the United States there is currently a patent Pending until 2021 that has CPM listed along with several other diseases of the "White Matter and Demyelination Status."

Now that I started this posting in this Forum I probably should stop here and move up to the Advocacy Forum. As the great doctors at JHMI and KKI stated, I'm so thankful to still have a solid brain even though the connecting nerves are somewhat tainted. G-d Bless...

Franky and Breeze

JAVISI
02-19-2007, 01:46 PM
Breeze,
I am sorry to hear about your mother and all of the confusion you had to go through. I know that iot can be very frustrating at times!

I am glad Franky is doing well and you are able to get out and take him for walks. It sure feels good to get outside. The weather has been snowy and cold. I am ready for spring.

Although my healthhas gotten worse, and things in my life seem to be piling up with my son in jail for a DUI, FLIGHT TO AVOID ARREST, HITTING A PATROL CAR, AND THEN HITTING AN OFFICER WITH HIS CAR! He is in a lot of trouble although I am happy to say he is alive the officer shot at him and missed his head by 6 inches.

The state had to investigate this since their was a shooting. I am happy that the video that they have on the event shows that he tried to stop and his car went out of control and was not purpoly trying to hit the officer!

But, although I get sad and depressed even feel a little guilty about this. I am free finally. I am divorced, and am so much happier in that respect!

Keep in touch,
Dream Big, with hope for inner peace to all,
Laurie;)

WhataBreeze
03-04-2007, 03:32 PM
Good Afternoon Members and Viewers.

I hope this short "Breeze By," finds everyone doing the best they can with whatever the reason is to be viewing this Posting. Personally, I continue to pull up BrainTalk as it has become a habit. There is always that initial thought why. Yes, in no way is it "What She Use To Be," but then again neither am I. I guess I continue to think back to all the great people who have made their selves known and established a network of online friends who can share all of our lives in the forest. I'm sure most of you will understand in regard to the "Forest" that those of us with a neurological disorder will feel at home in with the rest of us. Through my volunteer efforts in the hospital Neuro Departments, my conversation with patients in many different status areas of care are very aware to those of us who have been there. Truly, I feel that at one point B/T was such a positive influence for anyone reaching out for help. No, I'm not saying this site is has taken a 180 degree turn but let's atleast be realistic, as today this B/T ship is at best just coasting along. It took me some time to accept that fact but I'm still very greatful for its existence. I can remember when I reached out for help here at BrainTalk and it seemed as if someone from each Forum greeted me and was kind enough to give me great advice of what it was to make BrainTalk such a positive influence which made it very easy to find a home along with others who entered the forest prior to me. At this point as I'm Posting these thoughts I can pray for many our old neighbors who left the forest for reasons that will be unkown but hopefully they have found a comfortable new home where ever it may be. G-d Bless....

Franky and Breeze

jena1225
04-30-2007, 10:21 AM
Hi WaB :)

I just noticed that this forum ( Psychology of Chronic Illness ) even existed! I wonder why it isn't very active? I think it is a great concept! I have Multiple Sclerosis and Chronic Pain, and even though there are forums for them, sometimes we don't talk about how we feel simply having a Chronic Illness, you know?

I have "scanned" your posts and see you are dealing with a lot, and I hope you are doing ok these days :)

Also, I wonder what you mean by this BT not being quite the same as the last one ??