Tuesday, June 16, 2015

Mitch Simmons and Family - Fundraising Campaign Day 16 (Monday, June 15)

http://www.gofundme.com/mitchsimmons

With $9,894.00 raised thus far, we are knocking on the door of $10,000 raised in a little over two weeks!

Only $106 to go to hit $10,000 (and me sharing another high school photo).


Raising Awareness for Atypical Trigeminal Neuralgia (ATN) - Black Hills 100 Race Training (Sunday, June 14)

Raising Awareness for Atypical Trigeminal Neuralgia (ATN) - Black Hills 100 Race Training (Sunday, June 14)

http://www.gofundme.com/mitchsimmons


Atypical Trigeminal Neuralgia (ATN) - What research is being done?

The National Institute of Neurological Disorders and Stroke (NINDS), a part of the National Institutes of Health, is the federal government’s leading supporter of biomedical research on disorders of the brain and nervous system. NINDS-funded projects are exploring the mechanisms involved with chronic pain and trigeminal neuralgia, as well as novel diagnostic methods and treatments. Other research addresses TN through studies associated with pain research. Additional NIH research on TN is being funded by the National Institute of Dental and Craniofacial Research.

One NINDS-funded study for people with post-herpetic neuralgia of the trigeminal nerve uses a nasal spray applicator to deliver a drug to the tissue that lines the nasal cavity (nasal mucosa). Current drug therapy is absorbed through the body, which may lead to adverse effects such as drug interactions.  The local drug delivery affects nerve endings and suppresses the activity of neurotransmitters (which help cells communicate with each other), which makes the trigeminal nerve less able to transmit pain. The study will monitor people’s daily assessment of overall pain and note any adverse effects.

Little is known about how the nervous system becomes closely aligned with the vascular system during development. Scientists are using a mouse model to understand this interaction, which may lead to better diagnosis, therapy, and prevention of several neurological diseases, including diabetic neuropathy and TN.

Women are at a greater risk for pain in many acute and chronic pain conditions (including TN), but the reasons behind this aren’t well understood. Researchers are looking at the role estrogens may play in affecting nerve pain activity.  Understanding estrogen activity on pain nerves may increase the knowledge of why women are at risk for pain and possibly lead to the development of compounds that dampen the activity of estrogen on nerves that send pain signals to the brain and spinal cord.

source:  http://www.ninds.nih.gov/disorders/trigeminal_neuralgia/detail_trigeminal_neuralgia.htm

Black Hills 100 Race Training (13 days to race day)
http://blackhills100.com

Day off from training today.

Mitch Simmons and Family - Fundraising Campaign Day 15 (Sunday, June 14)

Mitch Simmons and Family - Fundraising Campaign Day 15 (Sunday, June 14)

http://www.gofundme.com/mitchsimmons

(Kenny Wheeler taking over fundraising for the week)... 

First, a sentence or two about my great friend Mr. Patrick Tschetter. One of the greatest human beings on earth and someone I am honored to call my friend. 

Mitch Simmons, the man, the myth, the legend. I remember the first time I met Mitch. I was standing in the lobby of Dakota Junior High (yes Junior High) waiting for the activities bus. Down the stairs came this curly haired kid and asked me where the pay phone was. Simple enough, right? I forgot to mention Mitch had just moved from Memphis. So his straightforward question sounded like this to a young South Dakotan, "Y'all know were a fern is?" Alright, so maybe his accent wasn't THAT thick, but I definitely remember a "Y'all" thrown in there.

Little did I know, that kid with the funny accent would become one of my best friends for life. Liking Mitch was easy. He was, and is, the best athlete I've ever met. We liked the same movies (anything with Bill Murray or Chevy Chase). It's safe to say we just clicked. Throw in a couple of other locals (Pat & Garrett) and a hyper little skinny kid from Iowa (Kelly) and you have a recipe for endless amusement. There were many other friends that we ran around with and I by no means want to exclude anyone. But over the years, our band of brothers has been these guys and Roboto. Friends ebb and flow in and out of your life. They don't leave for good, they wash back in when nature see's fit. It's just how life works. But in everyone's life, they have that coral reef that remains no matter what the tide does. 

That was our poetry corner for the day. 

NOW LETS GET TO IT! 

We are here to raise funds for Mitch and his family to offset obscenely high medical bills. I will be posting this week on the site. 

My first official act as commissioner of the pledge drive is this: 
I will match the next $200 donated. As I am typing this, we are sitting at $9,469. When we get to $9,669 I will donate $200. 
My challenge for someone, ANYONE is this: 
after I have honored my matching pledge of $200 pick up the baton and KEEP RUNNING. 
You don't have to match $200, it can be more or less. If 20 people match $20 donations, that's like a million bucks right there (if you know me, you know I suck at math). I do know this much about math, many small donations equals one or two big donations. There are ALOT of us out here on the internets so lets all get involved, give a little and make a huge difference. 

Sunday, June 14, 2015

Raising Awareness for Atypical Trigeminal Neuralgia (ATN) - Black Hills 100 Race Training (Saturday, June 13)

Raising Awareness for Atypical Trigeminal Neuralgia (ATN) - Black Hills 100 Race Training (Saturday, June 13)

http://www.gofundme.com/mitchsimmons

What are Trigeminal Neuralgia and Atypical Trigeminal Neuralgia? (1)
Trigeminal neuralgia results in sudden, severe, painful, stabbing, or electric-like shock in the face.

The trigeminal nerve has three sections, which affect:
The forehead and eye region
The cheek
The jaw

Blood-vessel compression of the trigeminal nerve causes trigeminal neuralgia.  Pain can be caused by:
Laughing
Chewing
Brushing teeth
Talking
Wind
Facial touching

It can occur in one or all areas, though symptoms usually begin on one side of the face, and affect both sides in about 5 percent of people.

Atypical trigeminal neuralgia shares several symptoms of trigeminal neuralgia. Microvascular decompression surgery may be indicated in certain cases, but the effectiveness of this treatment for atypical trigeminal neuralgia is less favorable.

Trigeminal neuralgia is first treated medically before surgery is considered as a treatment option. If medication is not effective, UPMC neurosurgeons usually recommend Microvascular Decompression. This minimally invasive surgery treats the cause of the problem, offers the most long-lasting relief, and minimizes risk of postoperative side effects like numbness.

UPMC’s high volume of trigeminal neuralgia patients has allowed our surgeons to research treatment effectiveness, making UPMC a world leader in the management and treatment of both trigeminal neuralgia and atypical trigeminal neuralgia.

Dr. Raymond Sekula discusses treatment options for trigeminal neuralgia.
http://www.upmc.com/Video/Pages/default.aspx?vcat=512%3b%237cddfd1b-9f9a-41f2-b92c-3e3c67b7280a|Neurosurgery&vid=301&pagename=trigeminal-neuralgia

(1) Source: University of Pittsburgh Medical Center

Black Hills 100 Race Training (14 days to race day)
http://blackhills100.com

5.50 mile Fartlek training run this morning which (as previously posted), put me over 500 miles for the year in preparation for my first 50 mile ultra-marathon.

- Fartlek Training: http://running.about.com/od/trainingessentials/f/fartleks.htm


There's No Unselfish Good Deeds - Mitch Simmons and Family GoFundMe Campaign Day 14

In a little less than 2 weeks, 91 people have contributed to help Mitch Simmons and his family raise over $9,300 to help with the expenses from his of his brain surgery (along with the medical expense balances that have accumulated from trips to the ER, hospital stays, seeing specialists, prescriptions, tests, etc.)...or over a 1/3 of the way to our goal!

http://www.gofundme.com/mitchsimmons

Per the video posted on Mitch's GoFundMe page, there is a "Group of 6" who have been friends since Junior High. After heading up this campaign for two weeks (and instead of you only getting my perspective/stories on Mitch during this fundraising), beginning today another member of our group, Kenny Wheeler, will be leading this charge...and after his 25+ years of military service...you'd better be ready!

But, before I hand the reins to Kenny, I just wanted to share a thought on what I have seen and learned over this last two weeks.

"There's no unselfish good deeds" -  Joey Tribbiani, Friends (TV Episode)

https://www.youtube.com/watch?v=DowJfUmlzeI

What I realized over the last couple weeks is that everyone has their own story

In the donors to Mitch and his family are people who have:
- Suffered a stroke
- Lost a spouse
- Changed careers
- Lost a child
- Gotten divorced
- Lost a parent
- Declared bankruptcy
- Gotten Cancer
- Lost a brother or sister
and like Mitch...
- Had a major surgery and health issues

So what Mitch is going through, Mitch's story, this story, is about all of us.  Because out of these hardships all of us have learned how to:
- Survive a stroke
- Survive the loss of a spouse
- Survive changing careers
- Survive the loss of a child
- Survive a divorce
- Survive losing a parent
- Survive bankruptcy
- Survive Cancer
- Survive the loss of a brother or sister
and like Mitch...
- Survive a major surgery and health issues

For me, one of those came in 2011:
On June 10, 4 years ago, I got a call to "get into the hospital right away" from Dr. Paul Gotlieb - Internal Medicine at Fairview (Edina, MN), as he found I had Bacterial Endocarditis (a bacterial infection in my heart...that had been there for months!)

Thankfully, there was no damage done to the valves in my heart and with the help of the great Doctors and Nurses at Fairview, the support of family and friends, and 6 weeks of daily I.V. antibiotic treatments via a PICC line, I made a full recovery!


Fast forward 4 years to today (June 13) and on a beautiful day in Seattle I will cross over 500 miles run for the year...and am now two weeks away from running my first 50 mile ultra-marathon.



When I talked/texted with Mitch at the end of last year and started figuring out how to help him and raise awareness for Atypical Trigeminal Neuralgia (ATN), it motivated me. That motivation pushed me to begin running (I had run a TOTAL of 26.7 miles the year before), that running motivated me to begin training for a race, that training pushed me to register for the 50 Miler of the Black Hills 100 and use that outlet to raise money for Mitch and his family and raise awareness for Atypical Trigeminal Neuralgia (ATN).

So I urge you, be selfish. I promise you if you donate to Mitch Simmons and his family today, you'll feel better. Donate today and you'll feel better. Today, be selfish.

And with that thought, I turn fundraising over to my friend of 30+ years, Kenny Wheeler


Raising Awareness for Atypical Trigeminal Neuralgia (ATN) - Black Hills 100 Race Training (Friday, June 12)

Raising Awareness for Atypical Trigeminal Neuralgia (ATN) - Black Hills 100 Race Training (Friday, June 12)

http://www.gofundme.com/mitchsimmons

Resource
While reading up on Atypical Trigeminal Neuralgia I found this resource: TNA Facial Pain Association

http://fpa-support.org

Black Hills 100 Race Training (15 days to race day)
http://blackhills100.com

10 mile run today on the Alki Trail in Seattle...
oh, and this is the kind of stuff you see running around Seattle.



Mitch Simmons and Family - Fundraising Campaign Day 13 (Friday, June 12)

Mitch Simmons and Family - Fundraising Campaign Day 13 (Friday, June 12)

http://www.gofundme.com/mitchsimmons

Well, it looks like that mid-week motivation post worked!


"If we hit $8,500 today ($136 away), I will post a classic Rapid City video including Rob Tschetter, Garrett Meier, Mitch Simmons, Jeff Sears and myself (to name a few) tomorrow for ‪#‎TBT‬
Also, from now going forward, I will post a "classic" (i.e. embarrassing) photo from high school or college for every $1,000 raised (no worries, these will only be embarrassing to me)

We hit that $8,500 by Thursday morning (video was posted) and have now reached 87 donors with $9,114 contributed as of this morning...36% of the way to our goal...all raised in less than 2 weeks!

Great work everyone!

In our Stevens High Class of '88, '89 and '90 contest we are seeing some momentum, with '89 in striking distance of the $5,000 goal I set for the class!

The '88 and '90 classes really stepped up this week bringing in 4 and 5 donors respectively this week!  (note: as of this post I am counting donations from '86/'87/'88 for the '88 class and donations from '90/'91/'92 for the '90 class)

As stated in Mitch's video, our "Group of 6" has been friends since Dakota Jr. High. Instead of you only getting my perspective/stories on Mitch during this fundraising, beginning tomorrow another member of our group, Kenny Wheeler, will be leading this charge (and after 25+ years of military service...you'd better be ready!)




Raising Awareness for Atypical Trigeminal Neuralgia (ATN) - Black Hills 100 Race Training (Thursday, June 11)

Raising Awareness for Atypical Trigeminal Neuralgia (ATN) - Black Hills 100 Race Training (Thursday, June 11)

http://www.gofundme.com/mitchsimmons

Risks
Both forms of facial neuralgia are relatively rare, with an incidence recently estimated between 12 and 24 new cases per hundred thousand population per year.

ATN often goes undiagnosed or misdiagnosed for extended periods, leading to a great deal of unexplained pain and anxiety. A National Patient Survey conducted by the US Trigeminal Neuralgia Association in the late 1990s indicated that the average facial neuralgia patient may see six different physicians before receiving a first definitive diagnosis. The first practitioner to see facial neuralgia patients is often a dentist who may lack deep training in facial neurology. Thus ATN may be misdiagnosed as Tempormandibular Joint Disorder.

This disorder is regarded by many medical professionals to comprise the most severe form of chronic pain known in medical practice. In some patients, pain may be unresponsive even to opioid drugs at any dose level that leaves the patient conscious. The disorder has thus acquired the unfortunate and possibly inflammatory nickname, "the suicide disease".

Symptoms of ATN may overlap with a similarly unexplained pain occurring in teeth called atypical odontalgia (literal meaning "unusual tooth pain"), with aching, burning, or stabs of pain localized to one or more teeth and adjacent jaw. The pain may seem to shift from one tooth to the next, after root canals or extractions. In desperate efforts to alleviate pain, some patients undergo multiple (but unneeded) root canals or extractions, even in the absence of suggestive X-ray evidence of dental abscess.

ATN symptoms may also be similar to those of post-herpetic neuralgia, which causes nerve inflammation when the latent herpes zoster virus of a previous case of chicken pox re-emerges in shingles. Fortunately, post-herpetic neuralgia is generally treated with medications which are also effective against ATN.

The subject of atypical trigeminal neuralgia is considered problematic even among experts. Some forms of orofacial pain are relatively well defined and easy to recognize while others seem to represent a diverse group of pain syndromes with considerable overlap, several classification schemes, vague characterization and controversial entities. The term atypical TN is broad and due to the complexity of the condition, there are considerable issues with defining the condition further. Some medical practitioners no longer make a distinction between facial neuralgia (a nominal condition of inflammation) versus facial neuropathy (direct physical damage to a nerve).

Due to the variability and imprecision of their pain symptoms, ATN or atypical odontalgia patients may be misdiagnosed with atypical facial pain (AFP) or "hypochondriasis", both of which are considered problematic by many practitioners.  The term "atypical facial pain" is sometimes assigned to pain which crosses the mid-line of the face or otherwise does not conform to expected boundaries of nerve distributions or characteristics of validated medical entities. As such, the term is seen to comprise a diagnosis by reduction.

As noted in material published by the [US] National Pain Foundation: "atypical facial pain is a confusing term and should never be used to describe patients with trigeminal neuralgia or trigeminal neuropathic pain. Strictly speaking, AFP is classified as a "somatiform pain disorder"; this is a psychological diagnosis that should be confirmed by a skilled pain psychologist. Patients with the diagnosis of AFP have no identifiable underlying physical cause for the pain. The pain is usually constant, described as aching or burning, and often affects both sides of the face (this is almost never the case in patients with trigeminal neuralgia). The pain frequently involves areas of the head, face, and neck that are outside the sensory territories that are supplied by the trigeminal nerve. It is important to correctly identify patients with AFP since the treatment for this is strictly medical. Surgical procedures are not indicated for atypical facial pain."

The term "hypochondriasis" is closely related to "somatiform pain disorder" and "conversion disorder" in the Diagnostic and Statistical Manual (DSM-IV) of the American Psychiatric Association. As of July 2011, this axis of the DSM-IV is undergoing major revision for the DSM-V, with introduction of a new designation "Complex Somatic Symptom Disorder". However, it remains to be demonstrated that any of these "disorders" can reliably be diagnosed as a medical entity with a discrete and reliable course of therapy.

It is possible that there are triggers or aggravating factors that patients need to learn to recognize to help manage their health. Bright lights, sounds, stress, and poor diet are examples of additional stimuli that can contribute to the condition. The pain can cause nausea, so beyond the obvious need to treat the pain, it is important to be sure to try to get adequate rest and nutrition.

Depression is frequently co-morbid with neuralgia and neuropathic pain of all sorts, as a result of the negative effects that pain has on one's life. Depression and chronic pain may interact, with chronic pain often predisposing patients to depression, and depression operating to sap energy, disrupt sleep and heighten sensitivity and the sense of suffering. Dealing with depression should thus be considered equally important as finding direct relief from the pain.

Black Hills 100 Race Training (16 days to race day)
http://blackhills100.com

Day off from training today.
Mitch Simmons and Family - Fundraising Campaign Day 12 (Thursday, June 11)
http://www.gofundme.com/mitchsimmons


(from a Facebook post targeted to Stevens High School alum and University of South Dakota alum)

Well, per my challenge posted yesterday that if we hit $8,500 in donations that I'd post a classic Rapid City video, here it is!!!

Rob's Bungee Jump, Rapid City, SD - Summer of 1992
This video features several members of our "Group of 6" including Rob Tschetter, Garrett Meier and Mitch Simmons - and also includes Jeff Sears, Chara Schryvers and Dalena Schryvers (on camera). I was there, prepping for my jump, but that video and jump hasn't been transferred from VHS yet.

This was part of a "men's day" where me, Rob and Mitch went bungee jumping (Garrett was working there)...then we all went that night and saw the (now classic, Oscar winning) film 'Unforgiven'
music from Devo - "Whip It"

(note: explicit language - we were in college and bungee jumping for the first time...enough said)

We have Vic Toscana, Stevens Raiders golf team alum and '89 grad, to thank for his generous donation and for getting us to this goal...and on the doorstep of $9,000 in donations! ‪#‎TBT‬

Wednesday, June 10, 2015

Raising Awareness for Atypical Trigeminal Neuralgia (ATN) - Black Hills 100 Race Training (Wednesday, June 10)

http://www.gofundme.com/mitchsimmons

The Trigeminal Nerve (1)
The trigeminal nerve is the fifth of 12 pairs of cranial nerves in the head. It is the nerve responsible for providing sensation to the face. One trigeminal nerve runs to the right side of the head, while the other runs to the left. Each of these nerves has three distinct branches. ("Trigeminal" derives from the Latin word "tria," which means three, and "geminus," which means twin.) After the trigeminal nerve leaves the brain and travels inside the skull, it divides into three smaller branches, controlling sensations throughout the face:

  • The first branch controls sensation in a person's eye, upper eyelid and forehead.
  • The second branch controls sensation in the lower eyelid, cheek, nostril, upper lip and upper gum.
  • The third branch controls sensations in the jaw, lower lip, lower gum and some of the muscles used for chewing.
(1) Source:  American Association of Neurological Surgeons


Black Hills 100 Race Training (17 days to race day)
http://blackhills100.com

4 years ago today I got a call to "get into the hospital right away" from Dr. Paul Gotlieb - Internal Medicine at Fairview (Edina, MN), as he found I had Bacterial Endocarditis (a bacterial infection in my heart...that had been there for months!)

Thankfully, there was no damage done to the valves in my heart and with the help of the great Doctors and Nurses at Fairview, the support of family and friends, and 6 weeks of daily I.V. antibiotic treatments via a PICC line, I made a full recovery!

Fast forward 4 years...and on a beautiful 8 mile run along Alki Beach in Seattle, I just crossed 450 miles run for the year...and am 17 days away from running my first 50 mile ultra-marathon. ‪#‎blessed‬


Mitch Simmons and Family - Fundraising Campaign Day 11 (Wednesday, June 10)

http://www.gofundme.com/mitchsimmons

(from a Facebook post targeted to Stevens High School alum and University of South Dakota alum)

Thank you to ALL who have donated thus far, putting us at $8,364 as of this morning!
I thought some mid-week motivation was in order for those that have not had the opportunity yet.

If we hit $8,500 today ($136 away), I will post a classic Rapid City video including Rob Tschetter, Garrett Meier, Mitch Simmons, Jeff Sears and myself (to name a few) tomorrow for ‪#‎TBT‬

Also, from now going forward, I will post a "classic" (i.e. embarrassing) photo from high school or college for every $1,000 raised (no worries, these will only be embarrassing to me)

Thank you all again for your thoughts, prayers and donations for Mitch and his family!


Tuesday, June 9, 2015

Mitch Simmons and Family - Fundraising Campaign Day 10 (Tuesday, June 9)

http://www.gofundme.com/mitchsimmons

With Mike Leberknight and Jeni Mitzel Leberknight's $89 donation this morning (love it...go '89!), we just crossed over the $8,000 point and are almost a 1/3 of the way to our goal!

Thank you all again for sharing Mitch's story with your family and friends and for your contributions, thoughts and prayers...great work!

For my Rapid City Stevens Raiders alum, let's follow their lead and help push Mitch and his family's donations past the $10,000 mark this week!  For The University of South Dakota, Black Hills State University and Arizona State University alum...please help support a former student in Dr. Mitch Simmons!




With us almost 1/3 of the way to our goal, it's no surprise that today is #NationalBestFriendDay



Raising Awareness for Atypical Trigeminal Neuralgia (ATN) - Black Hills 100 Race Training (Monday, June 8)

Raising Awareness for Atypical Trigeminal Neuralgia (ATN) - Black Hills 100 Race Training (Monday, June 8)

http://www.gofundme.com/mitchsimmons

Your Complete Guide to Atypical Trigeminal Neuralgia (ATN)


...Atypical Trigeminal Neuralgia


Atypical TN has a constant and severe aching, boring or burning pain that is superimposed upon otherwise typical TN symptoms.  Atypical TN is characterized by a unilateral, prominent constant and severe aching, boring or burning pain superimposed upon otherwise typical TN symptoms. This should be differentiated from cases of typical TN that develop a minor aching or burning pain within the affected distribution of the trigeminal nerve.

Vascular compression, as described above in typical TN, is thought to be the cause of many cases of atypical TN. Some believe atypical TN is due to vascular compression upon a specific part of the trigeminal nerve (the portio minor), while others theorize that atypical TN represents a more severe form or progression of typical TN.

Atypical TN pain can be at least partially relieved with medications used for typical TN, such as carbamazepine (Tegretol®). MVD surgery is curative for many patients with atypical TN, but not as reliably as for those with typical TN. It is also important to note that rhizotomy procedures may be effective in treating atypical TN, but are more likely to be complicated by annoying or even painful numbness (i.e. deafferentation pain).



Black Hills 100 - 50 Miler Race Training (19 days to race day):
http://blackhills100.com

After some days off for recovery, had a nice 10 mile run today...and my first around Greenlake!
It really reminded me of running the lakes in Minneapolis (Lake Harriet, Lake Calhoun, Lake of the Isles) except with views of Mt. Rainier and the Space Needle on every lap.



Mitch Simmons and Family - Fundraising Campaign Day 9 (Monday, June 8)

http://www.gofundme.com/mitchsimmons

Received a nice influx of contributions yesterday following the weekend.  Very happy with another $375 in donations for Mitch and his family, putting us on the doorstep of $8,000 raised!


Raising Awareness for Atypical Trigeminal Neuralgia (ATN) - Black Hills 100 Race Training (Sunday, June 7)

Raising Awareness for Atypical Trigeminal Neuralgia (ATN) - Black Hills 100 Race Training (Sunday, June 7)

http://www.gofundme.com/mitchsimmons

Atypical Trigeminal Neuralgia (ATN) - CNNiReport - The shocking, stabbing pain disorder you've never heard of

http://www.cnn.com/2013/10/07/health/trigeminal-neuralgia-awareness-irpt/


Imagine shocks radiating across your cheek, a knife cutting into your skin or the feeling of hot coal burning your face, but not being able to find relief from the pain for months, or even years.


That's what some trigeminal neuralgia patients say they endure on a regular basis.


Trigeminal neuralgia is a facial pain disorder associated with the trigeminal nerve, which carries sensation from your brain to your face. Slight touches to the face, whether it's a breeze, hair falling onto your temple or simply brushing your teeth, may trigger flashes of pain. The pain is most commonly caused by a blood vessel pushing on the trigeminal nerve. There is no cure.

It affects approximately 12 out of every 100,000 people per year, according to the National Institute of Health, and is more common in women and people over 50.

"Trigeminal neuralgia is an uncommon disease and as a result, most physicians have very little experience with it. That is one of the reasons it's difficult to diagnose," said Ronald Brisman, a New York neurosurgeon who specializes in the disorder.

The unbearable pain and search for a cure, as well as the medical field's unfamiliarity with the disorder, has led a group of about 30 trigeminal neuralgia patients to fight for awareness. Several of them, in addition to others with the disorder, started by sharing their personal stories with CNN iReport.

'I want to imagine a world where nobody has ... this pain'

Nikki Samuel is one of those people. Her goal is to educate others about the disease, as well as let people know about the first International Trigeminal Neuralgia Awareness Day on October 7. Dozens of buildings and structures across the world are lighting up teal for the day.

"If we know that somebody, somewhere is looking for a cure and not just another medication or an even more invasive, risky procedure, it gives us hope," she wrote in her iReport. "I want to imagine a world where nobody has to survive with this pain."

Samuel started experiencing the facial pain in 2005 and was diagnosed with Atypical Facial Pain. A variety of medications were ineffective and in 2008, the registered nurse from Leicester, England, admitted defeat and resigned from her job.

"I had achieved my dream and there it was, being taken away from me by this relentless, debilitating pain," she said.

It was seven years from her first pangs of pain before she was diagnosed with trigeminal neuralgia. As a way to cope, the 41-year-old has turned to online support groups.

"My online friends have been my lifeline," she said. "Trigeminal neuralgia has taken away many things, but it has given me the chance to 'meet' some amazing people and to make lifelong friendships."

'I have forgotten what a pain-free day feels like'

One of the people Samuel met online was Fred Gerwig, a former high school history teacher from rural West Virginia. Samuel's bravery inspired him to write about his experience, Gerwig said.

Leaving his classroom on September 7, 2011, the sunlight seared his eyes, bringing on what he thought was his first migraine. The searing pain never left.

After getting lidocaine injections to treat the migraine a month later, he said he started experiencing strange facial pains.

"There were shocks and pangs in my right cheek," he wrote on CNN iReport. "It felt as if a hot coal was lying on my right eye socket."

Since then, wind, noise and even a random touch have all intensified his never-ending pain.

Gerwig was later diagnosed with two disorders: "atypical" trigeminal neuralgia and a persistent unilateral headache on the same side. The "atypical" form of the disorder is marked by constant aching, burning and pain, according to the National Institute of Neurological Disorders and Stroke.

Numerous migraine and anti-seizure drugs haven't worked for him, and he's not a prime candidate for surgery to relieve pressure on his nerve. There aren't any blood vessels pushing on the trigeminal nerve, so the cause of his case is unknown.

"I have now forgotten what a pain free day feels like, and that changes you," said the stay-at-home dad. "You lose parts of yourself. You lose friends and family that can't deal with the fact that they cannot give you a hug, say a prayer and make you better."

Watch video from another trigeminal neuralgia patient

'Watching him suffer has broken me'

Leslie Martella has crossed the country trying to find relief for her 16-year-old son, Garrett Buckelew. He was diagnosed with trigeminal neuralgia when he was 11, she said.

"Watching him suffer has broken me," the mother said. "Garrett used to be an all-star baseball player, gifted student with high academic scores and awards, with tons of friends, and now he barely leaves our home."

Buckelew has had four surgeries to alleviate his pain, and four more surgeries after a complication occurred during one of the procedures.

"Trigeminal neuralgia has taken over our lives and is relentless," she said. "It has robbed my child of his life."

The Huntsville, Alabama, mom wishes people knew about the real pain that patients with this invisible illness experience.

"If Garrett walked around with a hatchet sticking out of his face, then people would get it, but trigeminal neuralgia is invisible, and I hate it."

'I am a trigeminal neuralgia warrior'

When a flash of pain shot from her eye to her jaw one day in 1998, Patti SanFilippo hurried to the mirror looking for a mark on her face. There was nothing there.

The Bloomsburg, Pennsylvania, resident tried to describe the pain to her doctor, but she felt like a lunatic. She spent five years struggling to find answers before she was diagnosed.

Even after multiple medications and surgeries to treat the disorder, none have helped ease her facial pain.

"A typical day in my life knows no real time and follows no structure. Pain wins over all else and many days are spent in bed," she said. "I have missed many family functions, important birthdays and reunions with friends because the pain won on those days."

To stay positive, SanFilippo calls herself a "trigeminal neuralgia warrior." Surviving the "horrendous pain, the harsh medications and lack of awareness" has inspired her to fight for help and understanding of this outwardly invisible disorder.

"If my story has been read and shared then I know I did my part to start people learning, talking about and becoming more aware that such an evil condition exists and needs attention so desperately," she said. "It's hopefully just the beginning, there is still so much that needs to be done."

Black Hills 100 - 50 Miler Race Training (20 days to race day):
http://blackhills100.com

Had to take the last few days off for RICE (Rest, Ice, Compression, Elevation) to get rid of a nagging hamstring injury.

Mitch Simmons and Family - Fundraising Campaign Day 8 (Sunday, June 7)

Mitch Simmons and Family - Fundraising Campaign Day 8 (Sunday, June 7)

http://www.gofundme.com/mitchsimmons

An update on the Rapid City Stevens High School Class of 1988, 1989 and 1990 Fundraising Contest:


Great work Stevens High School Alumni on raising money for Mitch Simmons and his family!

We are currently at $7,550 raised - 30% of the way to our goal!

As some of you know, we have a contest going between the Class of 1988, 1989 and 1990 for total number of donors and dollars raised. So far the Class of 1989 is leading the pack with 36 donors, and the classes of 1988 and 1990 are now neck-and-neck with 8 donors each.

There's still plenty of time to donate or share Mitch's campaign with family or friends before the target date of July 13 (Mitch's 44th birthday...which coincidentally is double his number from football).

Would love to see a big push from Mitch's teammates this week from the 1988 State Championship Team (Clint Tomlinson, Troy Ward, Steve Nolan, Mike Coleman, Michael Jones, Mike Cooley, Mike Wheeler, Jeff Rick, Brett C. Erickson, Jeff Fierro, to name a few)


(fyi...we've also received contributions from the 1987, 1991 and 1992 classes)





Saturday, June 6, 2015

Mitch Simmons and Family - Fundraising Campaign Day 7 (Saturday, June 6)

http://www.gofundme.com/mitchsimmons

I promised an update from Mitch this morning and he did not disappoint. If you already gave, reading this e-mail will confirm that you gave to a great cause. If you haven't given already, reading this e-mail will confirm that you are giving to a great cause.

e-mail...

Patrick

With the money raised thus far I will pay down the balances on expenses from the microvascular decompression craniotomy (brain surgery) along with the medical expense balances that have accumulated from trips to the ER, hospital stays, seeing specialists, prescriptions, tests, etc. After my last payment, the total of these bills is just over $24,000.00. Having my friends, family, and loved ones donate funds to help pay these bills is incredible. I have been having to provide my family with the bare minimum and use as much money as possible to pay down these bills. With the help of everyone that has donated, I will be able to start trying to save money to get my home ready for sale. We want to move to Northern Michigan so we can be close to Jennifer's parents so that they can help us with raising our children. Jennifer became disabled after having our first son. She has had problems that stem from surgeries she had done as a premature infant. Though she has always had to deal with health problems she was able to graduate from Michigan State University and was working selling insurance prior to having our first son. Once Hayden was born her health problems became to difficult for her to work. We were lucky in that I had been promoted around this time and were able to live with just my income. When I became disabled two years ago and started having large medical expenses, financially we started to have problems. Having friends help us is miraculous.

Even with Jennifer and I both at home, our health problems do not allow us to do the many things parents want to do for their children. Just getting out of the house is difficult for us so the boys are stuck at home and that is not fair to them. If we are able to move to Michigan, Jennifer's parents will be able to take the kids out to do things and participate in activities. It will be great for the kids to be near their grandparents along with other family. With the kids being able to spend time with their grandparents, this will allow Jennifer and I the opportunity to try to do things that may be able to help us to better deal with chronic pain. Just typing this email is starting to exhaust me and my boys all want my attention. I am amazed my youngest son is letting me type on the computer. He usually will climb on me if I try to get on the computer to do anything.

I want to send every person a message on Facebook that has shown their support. I am looking forward to going to everyone's Facebook page and get caught up on what they have been up to. I better finish up this email and get a little rest along with giving my boys some attention. I probably will have to try to make getting on Facebook my goal for tomorrow or tonight if I get any energy. Through dealing with ATN I realize now more than every how blessed I am to have so many great people in my life. I am a very lucky man.

Thank you for setting this up. This is not only helping my family and I financially our spirits have improved.

Mitch






Friday, June 5, 2015

Mitch Simmons and Family - Fundraising Campaign Day 6

Mitch Simmons and Family - Fundraising Campaign Day 6
http://www.gofundme.com/mitchsimmons
Two great pieces of news to report on the Mitch Simmons and family fundraising campaign:

(1) As of this morning...$7,000 raised from 65 great people in 5 days!!!
- Great start everyone, now just need another weekend push to hit our goal of $10,000 and 100 donors by EOD Sunday
- We started with a focus on Mitch's high school connections in Rapid City and as a Rapid City Stevens Raiders alum (http://www.stevensraiders.com) , this weekend's push will be his university connections at The University of South Dakota (http://www.usd.edu), Black Hills State University (http://bhsu.edu) and Arizona State University (http://www.asu.edu)

(2) As of this morning...Mitch's campaign is now searchable on the GoFundMe site! So if you run into someone who knows Mitch and/or is not on Facebook, you can quickly tell them to go to the GoFundMe site and search for Mitch Simmons to see his story and donate.

Thank you all again for your prayers and support.


Thursday, June 4, 2015

Mitch Simmons and Family - Fundraising Campaign Day 5

Mitch Simmons and Family - Fundraising Campaign Day 5

http://www.gofundme.com/mitchsimmons

Fundraising has slowed down this week, but received a couple of very appreciated donations today that put us on the doorstep of $7,000 raised...28% of the way there!

Beginning tomorrow we'll start weekend push #2 and hopefully get some media involved (in South Dakota and Arizona), get the universities that Mitch attended involved (University of South Dakota http://www.usd.edu; Black Hills State University http://bhsu.edu and Arizona State University http://www.asu.edu) and renew the 88, 89, 90 Stevens High School challenge.

If you've donated or shared Mitch's campaign on your Facebook page or other social media...thank you!


Raising Awareness for Atypical Trigeminal Neuralgia (ATN) - Black Hills 100 Race Training

Raising Awareness for Atypical Trigeminal Neuralgia (ATN) - Black Hills 100 Race Training

http://www.gofundme.com/mitchsimmons

Atypical Trigeminal Neuralgia (ATN) - Signs and symptoms (1)
ATN pain can be described as heavy, aching, stabbing, and burning. Some sufferers have a constant migraine-like headache. Others may experience intense pain in one or in all three trigeminal nerve branches, affecting teeth, ears, sinuses, cheeks, forehead, upper and lower jaws, "behind" the eyes, and scalp. In addition, those with ATN may also experience the shocks or stabs found in type 1 TN.


Many TN and ATN patients have pain that is "triggered" by light touch on shifting trigger zones. ATN pain tends to worsen with talking, smiling, chewing, or in response to sensations such as a cool breeze. The pain from ATN is often continuous, and periods of remission are rare. Both TN and ATN can be bilateral, though the character of pain is usually different on the two sides at any one time.



(1) Source: Wikipedia

Black Hills 100 - 50 Miler Race Training (23 days to race day):
http://blackhills100.com


Ran 5.5 miles this morning (before work) in preparation for a long run tomorrow. That 5.5 miles put me over 450 miles for the year!

Wednesday, June 3, 2015

Raising Awareness for Atypical Trigeminal Neuralgia (ATN) - Black Hills 100 Race Training

Raising Awareness for Atypical Trigeminal Neuralgia (ATN) - Black Hills 100 Race Training

http://www.gofundme.com/mitchsimmons

Atypical Trigeminal Neuralgia (ATN) - Symptoms (1)
Most patients report that their pain begins spontaneously and seemingly out of nowhere. Other patients say their pain follows a car accident, a blow to the face or dental surgery. Most physicians and dentists do not believe that dental work can cause trigeminal neuralgia. In these cases, it is more likely that the disorder was already developing, and the dental work caused the initial symptoms to be triggered coincidentally.
Pain often is first experienced along the upper or lower jaw, so many patients assume they have a dental abscess. Some patients see their dentists and actually have a root canal performed, which inevitably brings no relief. When the pain persists, patients realize the problem is not dental-related.

The pain of trigeminal neuralgia is defined as either classic or atypical. With classic pain, there are definite periods of remission. The pain is intensely sharp, throbbing and shock-like, and usually triggered by touching an area of the skin or by specific activities. Atypical pain often is present as a constant, burning sensation affecting a more widespread area of the face. With atypical trigeminal neuralgia, there may not be a remission period, and symptoms are usually more difficult to treat.

Trigeminal neuralgia tends to run in cycles. Patients often suffer long stretches of frequent attacks followed by weeks, months or even years of little or no pain. The usual pattern, however, is for the attacks to intensify over time with shorter pain-free periods. Some patients suffer less than one attack a day, while others experience a dozen or more every hour. The pain typically begins with a sensation of electrical shocks that culminates in an excruciating stabbing pain within less than 20 seconds. The pain often leaves patients with uncontrollable facial twitching, which is why the disorder is also known as tic douloureux.
Attacks of trigeminal neuralgia may be triggered by the following:

  • Touching the skin lightly
  • Washing
  • Shaving
  • Brushing teeth
  • Blowing the nose
  • Drinking hot or cold beverages
  • Encountering a light breeze
  • Applying makeup
  • Smiling
  • Talking

The symptoms of several pain disorders are similar to those of trigeminal neuralgia. Temporal tendinitis involves cheek pain and tooth sensitivity, as well as headaches and neck and shoulder pain. This condition is called a "migraine mimic" because its symptoms are similar to those of a migraine. Ernest syndrome is an injury of the styomandubular ligament, which connects the base of the skull with the lower jaw, producing pain in areas of the face, head and neck. Occipital neuralgia involves pain in the front and back of the head that sometimes extends into the facial region.




(1) Source: The American Association of Neurological Surgeons (AANS)

Black Hills 100 - 50 Miler Race Training (24 days to race day):
http://blackhills100.com

Scheduled to run 57 miles this week in preparation for the 50 Miler on June 27th. Have covered 14 miles so far...43 miles to go before Sunday morning!