Thursday, February 27, 2014

I just spent two days taking the class “Mental Health First Aid” to learn about suicide. I missed the signs in Karen, I'm never going to do that again. Like learning CPR, you learn it in the hopes you never have to use it. Alas some questions about suicide have no answers. There is an empty painful ache in my gut, still after being six months, that will not go away.

Saturday, March 1 2014

So dark, so deep --
not sure I can keep up the fight
It's been so long
I'm forgetting the light
Seems so impossible,
the walls are steep
Thoughts of hopelessness
are all I keep.
I resign to give up --
there's nothing in store
I hear a fiat whisper --
"Just a little bit More."

With barely the strength to move
My fingers slide and find a groove
With all I have left I find a foot hold
But the voice of despair screams out so bold
I look ahead - it seems so high
Hopelessness taunts,
"You're a fool to try".
I resign to give up --
there's nothing in store
I hear a faint whisper --
"Just a little bit more."

I look once more, I find a rope
"A thought enters in --
maybe there's hope
My strength is renewed
As the victory is pursued.
Now the battle starts to rage
Will I find freedom
or stay locked in a cage?
I consider going back
As I remember all I lack.
Fear rises up like a raging storm
I'm paralyzed -- unable to perform.
I resign to give up --
There's nothing in store
I hear a faint whisper --
"Just a little bit more."

No strength left,
my muscles are sore
My eyes are heavy
but I look once more
A hand of compassion reaches out
Hope take the place
of fear and doubt.
I pull strength from inside
and reach for the hand
Now I'm entering
into uncharted land.
Should I, could I dare to trust
From all that's behind
I realize I must.
A scary adventure, oh what a trip
A storm crashes in
our hands start to slip.
I resign to give up --
there's nothing in store
I hear a faint whisper --
"Just a little bit more."

I try once more I look around
I begin to hear a startling sound.
I hear encouragers all in one voice
Letting me know I have a choice.
I make a decision once and for all
I'm going to make it up
and over the wall.
The storms come and go
I strive and continue to grow.
The celebration stats
Deep down in my heart.
I know I can face all that's in store
As long as I give it "a little bit more".

Sunday, March 9 2014, 4:18 AM EDT

Karen's mother died. She had a stroke and heart attack many years ago. For the last eleven years she battled COPD.

She told Karen's sister, Sharon, that she kept hearing Karen call her saying 'Mom' 'Mom'.

Tuesday, March 11 2014

Today was Karen's mother funeral. Karen's father had a heart attack at the funeral. He was taken from the funeral via ambulance. While I look for reasons to not attend funerals, having to go to the hospital to help with his admission is not a good way.

I had planed on being in Durham since last Friday. I asked the family if they wanted me to stay or to keep my appointment with the Dean at Duke. They said I could do nothing here and maybe I could do something of value there.

{I saw Karen's dad yesterday on the 4th of July, he is doing well now.}

Wednesday, March 12 2014.

I make the ten hour drive to Durham, alone, once again. It was so much easier with Karen helping me navigate. She got a large parabolic mirror so she could see behind her so she could tell me when it was clear to merge to my right. On our first trip down we were very surprised and frustrated by the sudden appearance of six lane highway to our right, right as we wanted to exit!

Thursday, March 13, 2014 9:30 AM EDT

This morning Lee Campbell and I meet with Helen Poole and Joseph Tynan whom are with Gift and Endowment Planning Duke Medicine, Development and Alumni Affairs about Karen's memorial fund. Then we meet with dean Nancy Andrews, M.D., Ph.D.. I asked her to find a way to pass Karen's story on to the future doctors being trained there, so others don't suffer for 20+ years trying to find out what is wrong with them.

I've been wondering for a long time if I'm doing what Karen wants me to be doing. Should I be pushing finding help for CSF Leakers, and trying to find funding? I wish I had some way of knowing. I know part of the reason that Karen took her life was to “set me free”. Free having having to deal with Chronic Pain and CSF Leaks. I don't feel free. Will I ever be free while others suffer? Karen wants me “to be happy”. She had more understanding of The Secret that I thought she did. Hard to be happy when crying all of the time.

The family thought I'd do more good seeing the Dean at Duke than setting in the waiting room at the hospital with them.

Thursday, March 13, 2014 5:00 PM EDT

When I got out of the van in the hotel parking lot I saw a penny laying there on the ground. Karen knew of the story 'Pennies from Heaven' where they say when an Angle is missing you they throw a penny down from heaven to let you know they are missing you. I picked up the penny and saw that it was from 1969 the year Karen was born. Do I have my sign?

Friday, March 14, 2014 9:10 AM EDT

I meet with Ella Little, sales director at Durham Homewood Suites. They give a discount for people with CSF Leaks, and I wanted to thank her. I also wanted to find out if there were other places that would support lower rates for leaksers. I also asked her if she hand any contacts inside the Hilton Foundation, as a possible funding source for Karen's Memorial and the Dr Gray Fund. Ms. Little also offered the facilities if anyone wants to do a 'Leakers' reunion. [We were never able to make the correct connections with the Hilton Foundation people unfortunately.]

Friday, March 14, 2014

Karen's father had a quad-bypass and a valve replacement. So far he is doing well. I'm sure the full impact of Karen's mother being gone has not sunk in yet.

Saturday, March 15, 2014

I spent the day at The Rhine Research Center, that is literally around the corner from Duke, learning about Dreams. J.B.Rhine started his studies of ESP at Duke in the 1920's. If Karen was stable I'd often hang out at the Rhine learning the things that have always interested me that few can explain.

Sunday, March 16, 2014

Make the lonely ten hour drive back home. I did pick up some CD books to listen to on the drive, makes the trip go a bit faster. Learning how to read Body Language.

Monday, March 17, 2014

I received this from Dr. Gray this morning:

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Thursday, July 3, 2014

I am to meet with a lady at the Franklin Area Chamber of Commerce to see if someone can scan Karen's medical records. I don't want to get rid of them in case they may help in CSF research, yet I don't want to carry them around with me like an Albatross from the The Rime of the Ancient Mariner.

She is late so I head across the street to have lunch. There I meet a friend that I'd lost track of. There are no coincidences in the Universe.

When we finally do meet she recommended Cadwell Printing Services in Oil City.

After those appointments I head it to the local paper's, The Derrick, office. I had no appointment. I was eventually directed to the editor Rich Jackson after explaining what I wanted to different a couple of different people. The Derrick often runs small things in the corner of a page near the back in remembrance of the loved ones that have passed on. I wanted one of those on the anniversary of Karen's death, August 7th 2013.

Mr. Jackson said they did not do such things for people that die of suicide, as that can lead to copycat deaths, see Werther effect.

I explained to Mr. Jackson that Karen's death had actually helped a few people, and inspired one lady to run a marathon. I told him I understood his concern. I asked him to at least read Karen's Journal, he said he would and would have one of the reporters he thought would personally understand Karen's story. I left the office disappointed. What would happen in September I could not have possibly imagined.

Saturday, July 12, 2014

I thought I might have 10,000+ pages to scan. Once I separated out the bills since 2009, apparently Karen got rid of all of the older ones, the stack on the left, I was left with the stack on the right that covers 1991 to 2013.

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Late July 2014, exact date unknown.

I received a phone call from from Ms. Savannah Barr a reporter at The Derrick Newspaper. The paper decided to run a story on Karen after all. She starts asking me questions on the phone. I suggests that it would be easier for both of us to meet in person at her office, which we do the following day.

Thursday, August 7th, 2014

Karen has been gone one year today.

I still cry a lot. Can at least manage to go a few days at a time without crying now.

I check the paper today, there is nothing in it about Karen. Guess they changed their mind about doing story on Karen.

Wednesday, August 20 2014 12:06pm

On the CSF LEAKS (Cerebrospinal Fluid Leak & IH) Private Group someone asked:

“What kind of leaks did Karen suffer from?” which started this exchange between Karen's cousin Charity Heilbrun and I. With Charity's permission I am posting our exchange here:

Me: … it is times like this that I really miss Karen. She could have just rattled off the answer to your question. I can't. I should dig that information out of the medical records. Right now they are at a scanning service to be put on DVD.

Her accident was a whiplash and head impact. There was never any signs of a cranial leak. We always assumed the problem was in the neck region.

She had some X-Rays from a fall at work before her car accident. Those showed a normal cervical curve. After her accident there was no cervical curve, bones looked like she had a ruler strapped to them they were so straight.

I know she also got some patches in the bra strap area as well as higher.

None of her image studies were ever absolutely definitive.

Her autopsy showed she was leaking at the tip of her Dura. This lead to speculation that she might have had Tethered Cord, that her cousin does have. Her cousin Charity Heilbrun also has chirari leading to speculation that there is a genetic connection.

Charity, I recall the discussion that the two of you had about your chirari and Karen wondered if it was pseudo chirari from a leak. I've never found anything in Karen's writings about Tethered Cord nor recall her ever mentioning that. Did Karen know you had TC?

Charity responds: I also have Chiari syringomyelia occult tethered cord, basilar invagination and Ehlers Danlos Syndrome [EDS] hyper mobile type… I suspect Karen may have had some of these as well.

Sorry forgot commas.

Yes Karen and I did discuss pseudo Chiari . . To be honest that is the first I have ever heard of it.. there is however acquired Chiari .. the problem is most drs are under an assumption it is the degree of herniation that is the issue .. and that is FALSE any Chiari even Chiari 0 is problematic. No we never discussed tethered cord, or EDS.. looking back I would have posed sooo many more questions to her. Hind sight is always 20/20 Karen was always one to ask more about another's issues more than discuss her own at length. 2 of my 3 kids also have syringomyelia and possibly hyper mobile eds… so there HAS to be some kind of genetic link. The symptoms are so vague that you almost have to look for them.

Me: Karen could tie her fingers into knots. She did this when she was nervous. Usually in a doctor waiting room. Her back was extremely stiff, which doesn't seem to fit EDS? She said that started as teen, pre-accident.

Charity: My back and neck started when I was about 14… I have syringomyelia c3 to l 1.. now I am younger than Karen .. not by much, but when they did my first MRI at 14.. they did not know what they were looking at and said nothing was wrong … it was not until I was 27 and had severe issues and was taken to Pittsburgh by emergency that they figured it out. I am sure Karen's heds [Hyper EDS?] was worse than mine, but that would explain her leaks .. I have gotten leaks.. but not unless I had surgery. I have a pseudo miningocele ( spelling ?) From my brain surgery as well.

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Some types of Osteogenesis Imperfecta are linked to defects in enzymes that help process collagen to its mature form. Elevated levels of a a signaling molecule called TGF-β have been found in experimental mice engineered to have this less common form of OI that affects collagen processing.

TGF-β may aslo be responsible for disrupting the way immune cells respond to common foods and environmental allergens, leading to a wide range of allergic disorders. Some of which Karen had, specifically mold.

TGF-β signaling are also keys to Marfan and Loeys-Dietz syndromes, genetic conditions marked by blood vessel laxity and dangerous stretching of the aorta, the body’s largest blood vessel.

What is relevant to us here is that over the years several doctors commented on Karen's Marfan Syndrome like traits such as long arms, legs and fingers, tall and thin body type, curved spine, large forehead. Also they commented that her head seemed unusually large and heavy comparing it to the weight of a bowling ball. We actually weighed it once by her laying on a scale, not the most accurate way, where we found it weighed about twelve pounds.

The blood-pressure medication Losartan, known for its ability to tame TGF-β signaling has been experimented with as a promising treatment for allergies. The drug is an old, common medication already approved by the U.S. Food and Drug Administration to treat high blood pressure. Losartan’s effects on TGF-β were discovered by Dietz and colleagues. His group subsequently showed that Losartan can halt the dangerous ballooning of the aorta caused by abnormal TGF-β in patients with Marfan and Loeys-Dietz syndromes. I wonder if there are any studies that could link TGF-β to Dura damage or that Losartan would treat the underlying cause of “Crappy Dura”?

Statistically women suffer more often than men when it comes to EDS, Marfan and CSF Leaks. What is the connection? TGF-β? The hormone Relaxin, which has significantly higher levels in females and is related to bone reformation?

• Study in Mice Links Key Signaling Molecule to Underlying Cause of Osteogenesis Imperfecta
• Johns Hopkins Researchers Reveal Genetic Glitch at the Root of Allergies: Genetic pathway also known for its role in Loeys-Dietz, Marfan syndromes
• The Effects of TGF-b3 Modulation on Scar Tissue Formation in the Pig; Medscape login required.
• Studies Indicate that Losartan may be an effective treatment option for Marfan syndrome

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Wednesday, September, 3rd 2014

Today is Karen's birthday. I had hopped The Derrick would have run their story today. I did not find it. Guess they changed their mind for sure.

Monday, September, 8th 2014

I find myself as the centerpiece on the Front Page of The Derrick! I expected some small thing in the corner!

“Karen's first-hand account of her illness gave an honest, heart-wrenching depiction of what it is like to live with debilitating pain day-to-day.” - The Derrick Front Page Story Sept. 8th 2014.

Mid September, 2014

I spent several days at Duke University School of Medicine recently, after this story was published in The Derrick on September 8th, to find out exactly what was happening. The highlights were meeting Professor Daniel Schmitt, Ph.D. from the Department of Evolutionary Anthropology and Associate Professor Leonard E. White, PhD from Duke Institute for Brain Sciences (DIBS).

Dr. Schmitt is the one that oversees the students doing dissections. He has already started to teach Karen's story as part of his course. He is now putting special emphasis on the Dura and how it can lead to headaches. In the past the Dura was just something to be removed to get to the Interesting Stuff. They would like me to return to speak to the students, and take part in a dissection myself (not sure I'm up to that?).

We then meet Professor White. They will make Karen's Journal required reading for the Neuralbiology class (Future Neurologists), starting in January 2015.

This course is also available as an Massive Open Online Course (MOOC) THERE ARE CURRENTLY 100,000 PEOPLE IN 180 COUNTRIES TAKING THE CLASS.

“Feel free to pass the word to others you may know who might benefit from more formal study of medical neuroscience and the structure/function of the human central nervous system.” - Dr White

I COULD NOT HAVE IMAGINED HOW TO REACH THAT NUMBER OF PEOPLE FOR THEM TO LEARN ABOUT THE CAUSE OF POSITIONAL RELATED HEADACHES AND CHRONIC PAIN, THAT KAREN SUFFERED FROM FOR NEARLY TWO DECADES.

https://www.coursera.org/course/medicalneuro

In the paper end there are two errors at the end. It is my gut that aches not my heart, like you get butterfly's in your stomach not your heart.

The other error is the very last paragraph should be two paragraphs up, in that people should not hid their pain as people with Chronic Pain do.

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Sunday, September 28 2014

On one of the Facebook groups a comment was made about wanting to donate their body to be studied to find their CSF Leaks. This is my reply:

For years Karen said she wanted to donate her body. At some point she actually looked into it and decided it was not possible for what she wanted done.

She died at 3:30 PM on a Wednesday. Thursday morning my brother-in-law and my Mother went to the local funeral home to make arrangements. At this point I was still in shock and not thinking clearly and said nothing about donations, tests or anything else. I simply did not think of it.

By Friday morning I was thinking a bit more clearly and remembered what Karen had said about donating her body.

To that end I contacted Dr. Gray to figure out what we could learn from Karen's body, there were to many logistical issues with even considering being studied in LA, such as timezones to just get the phone calls made.

What doctor Gray discovered on her end, and me working from this end, is that if you send a body to Duke it ends up in the cadaver program, and there is no way to override this. Dr. Gray could not figure out how to fight “the system”. I even spoke to the head of the program, wish I remembered her name at this point so I could write her a letter (Was still not thinking all that clearly then to take notes), while she understood what I wanted there was no way “in the system” to do what I wanted. If a body shows up, it goes to the medical students dissection program. End of discussion.

Lee, we discussed this with Dr. White when we were there and he said he would look into fixing this problem, perhaps it would be better to get Dr. Schmitt to fix this problem, being more directly involved with bodies?

With the help of the local funeral director and discussions with Dr. Gray. Karen's spine was removed during an autopsy in Eire on Monday, the day of her funeral, and sent to Duke to be studied by the pathologists there. I actually did see images of Karen's spin when I visited Dr. Gray in the fall of 2013. For reasons that she did not explain she thought it would be a bad idea to allow me to post these images so I never got copies.

As I wanted to remember Karen as I last saw her alive, I never did see her after her death (Her family wanted to and did) so it was always planed to be closed casket funeral.

Karen was always late to everything. Anytime we were to go someplace she always had to go to the bathroom six+ times before we left the house.

Her autopsy to remove her spine was done Monday morning in Eire, the day of her funeral.

Karen really was late to her own funeral!

She arrived back at the funeral home about the time the minister was wrapping up the eulogy.

Now my long winded point here is it would be good to donate your body to be studied (No early checkouts please!), I learned the hard way that all of these arrangements must be made in advance, and everyone along the chain must know what you want. Your family, your funeral director, and the place that is going to get your body.

Also I can not stress enough that each adult member of your family *MUST* have a will! Karen and I often talked of getting ours. We'll do it tomorrow… Well we ran out of Tomorrows! Even a year later I'm still running in to complications with things because we did not have wills.

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Saturday, October, 11th 2014

Garth goes to the dentists. He really wants to find Karen. Heart Breaking.

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{Jump to year: 1969 to 2010, 2011 2012 2013 2014 2015}}

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~~DISCUSSION~~