Review – Gohl Program | Part 2

Review – Gohl Program | Part 2

By Twinkle VanFleet

Monica Depriest and Arik Gohl picked me up from my son’s home on October 23rd, 2016. My husband and I had spent the weekend there to take care of our grandson De’Mantai so his mom could enjoy some time away. I had just had a cervical steroid injection. This was my second in 8 weeks. I had only ever had Lumbar Sympathetic Nerve blocks prior and over a dozen of them. I had began with a series of 3 scheduled one week apart in 2006. It had taken 6 years for any treatment other than medication management due to Worker’s Compensation. So that I’m precise rather than confusing, these weren’t denied. Had they been denied I could appeal, instead just stalled and delayed. Since the first 2 series of 3, I’ve had one injection a year since, generally during winter and often times delayed beyond my physician’s control.

We arrived in Loomis California an area outside of Sacramento that evening.

Photos above taken 3 hours apart and the same day as the video below. November 4, 2016.

Admittedly, my body was weak and pain was high, but I hadn’t shared that yet. I tend to go off on my own, and attempt to distract myself when among others. As we arrived, Susie and her son Tommy who has RSD/CRPS, along with her son David had also arrived. Jamie and Spencer arrived later. Jamie Pearson is active in the RSD/CRPS communities, too. Arik’s wife Veronica was amazing and helped us all feel at home. Vero’s hospitality and playful spirit afforded us the ease of being less anxious and at ease among those we didn’t know. Sam Ballentyne licensed therapist and energy healer was also present during the week. Dr. Edward Glaser arrived the next morning. Dr. Glaser is the owner of Sole Supports and an engineer and DPM specializing in Podiatry and Orthotics. Another Podiatrist joined us to observe and all our therapies would begin the morning of October 24th.

16 years. 10 with a permanent Spinal Cord Stimulator (SCS) that hasn’t been turned back on since the morning of the 24th. My only blessing that has been on day in and day out since 2006. The only time it’s ever been off is to either charge a drained battery or to push past 2-3 days to allow my brain to scramble and disguise the pain signals it provided. Our brains realize it’s being tricked. Turning it off let it work better again when turning it back on.



It’s been over a week since returning.  I wasn’t suppose to ever be able to do this, at least without added pain or causing a flare-up. Lets see if I can get to the point of running one day. 2 days ago, I was still told I never will.

So what is Manual Ligament Therapy?

Are you still curious?  ANATOMY PHYSIOLOGY, PATHOPHYSIOLOGY REVIEW Ligaments: A source of musculoskeletal disorders

Review – Gohl Program | Part 1

By Twinkle VanFleet

https://rsdadvisory.com/2016/10/31/review-gohl-program-part-1/


https://gohlprogram.com/

https://gohlprogram.wordpress.com/


I know you can’t wait to learn more and I can’t wait to share it with you. Stay tuned for Review – Gohl Program | Part 3

In the meantime, here’s Jamie’s story on

Dragonflyy’s Journey

To be Continued…

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#painPOP – Do You Have The NERVE To Be Heard?

I have the nerve to be heard, do you have the nerve to be heard? POP for PAIN with hashtag #painPOP by the Power of Pain Foundation. We invite you to take the challenge or donate to either spread continued awareness and advocacy efforts or assist in educational funding for nerve pain diseases, syndromes and conditions.

Our balloons are safe for both you and the environment. Instead of a balloon release, our #painPOP offers you the opportunity to be involved even with physical limitations. We considered the noise in the pop, we considered those whose hands are not well and we considered the air.

We have taken into account those with PTSD from wartime. We would not wish you harm in any way, nor would we have you pop to startle you. No one is forced to do either. This is meant for fun, a distraction from our own pain; enlighten pain in others, and to promote understanding, compassion and hope. I participated in the ice bucket challenge last year and my body had a fit, but for ALS sufferers, I did it. I don’t have ALS, I have CRPS, CSA, OSA, other sleep disorders, Cheyne Stokes, Hypertension, Anxiety disorder, DDD, Arthritis (Juvenile Arthritis), PTSD and various extras.  Pain is hard, not being able to breathe evenly is hard, having a brain that doesn’t send the proper signals to the muscles that control breathing is hard, not being able to stay awake is hard and not being able to sleep is hard,  being on my legs is hard, but we don’t always have to be hard on ourselves.

I was challenged in the #painPOP by Power of Pain’s Executive Director Ken Taylor. Of course, I accepted, even though I’ve been quite unwell for weeks now.

If we tell ourselves we can’t participate in anything due to the setbacks in pain then we never will.

Here’s how it works:

Instructions
If your balloon has a POP (Power of Pain) logo, be sure to have it facing the camera.
To the camera say: I have the NERVE to be HEARD! (pop the balloon) do YOU have the NERVE to be HEARD! hashtag #painPOP participate or donate to powerofpain.org
Or if you want to challenge someone:
I have the NERVE to be HEARD! (pop the balloon) I challenge (state their name’s) to Have the NERVE to be HEARD! hashtag #painPOP participate or donate to www.powerofpain.org

You can have fun with it. Be creative. We also want you to be safe and content.

We look forward to sharing your submissions and celebrating with you.

 

NERVEmber Just Ahead Power of Pain Foundation

 

Our mission

Power of Pain Foundation recognizes the value of every person who makes up the chronic pain community. We are guided by our commitment to excellence, leadership and patient empowerment. We demonstrate this by:

 

* Providing educational resources for physical and emotional care * Advancing excellence in pain awareness of the over 150 conditions involving chronic pain and what patients are faced with on a daily basis * Strengthening our relationships with hospitals, pain clinics, pharmaceuticals, support groups and our chronic pain community * Demonstrating social responsibility through the use of our pain resources. The commitment of volunteers, physicians, community partners and friends to the Power of Pain mission, permits us to maintain a quality presence and tradition of caring, which are the hallmarks of the Power of Pain Foundation.

 

We hope that you participate in our #NERVEmber projects and if you are unable due to any restrictions that instead you share someone who has so that together we can fulfill the mission of the Power of Pain Foundation to give a voice to the communities that need it most.

 

#NERVEmber is International Nerve Pain Awareness Month (including RSD, CRPS, Diabetes, and more). Each day during the month of NERVEmber the @PowerofPain Foundation will present an awareness task that we can all perform!

This year we are also giving away over $1000 in prizes available for everyone who registers to participate and use the hashtags, complete tasks, host or attend an event. The more you participate in OFFICIAL #NERVEmber events, the more chances you have to win! Check out all events going on in our NERVEmber Event Calendar.

Find out more at: NERVEmber.org

 

A list of diseases, syndromes and conditions that involve nerve pain as a symptom.

AUTONOMIC*

The autonomic nervous system is a control system that acts largely unconsciously and regulates the heart rate, digestion, respiratory rate, pupillary response, urination, and sexual arousal. This system is the primary mechanism in control of the fight-or-flight response and its role is mediated by two different components.

AUTOIMMUNE**

Autoimmune diseases arise from an abnormal immune response of the body against substances and tissues normally present in the body (autoimmunity). This may be restricted to certain organs (e.g. in autoimmune thyroiditis) or involve a particular tissue in different places (e.g. Goodpasture’s disease which may affect the basement membrane in both the lung and the kidney).

OTHER

Other types of neuropathy conditions include; toxic, metabolic, trauma, compression entrapment, infectious, and congenital hereditary. These conditions are typically treated by multiple types of medical professionals.  The goal of treatments should be to understand the physiological system of the condition and then working to prevent permanent painful neurological transformations.

4 Q Deletion Syndrome
Alcoholism*
Alexander Disease
ALS Lou Gehrig’s Disease
Arachnoiditis**
Behcet’s Disease**
Bell’s Palsy
Blepharospasm
Bloch-Sulzberger Syndrome
Burning Mouth Syndrome**

Cancer Neuropathy*
Carpal Tunnel Syndrome
Causalgia**
Charcot-Marie-Tooth Disease
Chemical Injury Neuropathy*
Chiari Malformation
Cranial Neuritis*
Diabetic Neuropathy*
Dysautonomia*
Endometriosis
Fabry’s Disease

 

 

Fibromyalgia**
Friedreich’s Ataxia
Guillain Barre Syndrome**
Herpes Simplex 
HIV/AIDS**
Interstitial Cystitis
Leprosy**
Lupus**
Lyme disease**
MonoNeuropathy*
Multiple Sclerosis*
Neuro Muscular Dystrophy**

Optic Neuritis**
Peripheral Neuropathy*
Polyneuropathy**
Post-Surgical Pain
Pressure Palsy
RSD / CRPS**
Shingles*
Shoulder Hand Syndrome
Sjogren’s (“SHOW-grins”)**
Tarlov Cyst Disease
TMJ
Trigeminal Neuralgia**
Vestibular Neuritis*

Check back for more information on these conditions soon

Central Cervical Cord Syndrome

Central Pain Syndrome

Cerebral Palsy

Chemical Injury Neuropathy

Choreoacanthocytosis

Chronic Inflammatory Demyelinating Polyneuropathy (CIDP)

Craniosynostosis

Cushing’s Syndrome

Brachial Neuritis

Ehlers Danlos

Electric Discharge

Failed Back Syndrome

Neuralgia Post-Infectious

Neuro Inflammatory Disease

Toxic Homeopathy

Vasculitic Neuropathy

See http://powerofpain.org/conditions/

 

Help us share and make aware

Hashtags (Please be sure to use the hashtags in their entirety)

#painPOP

#NERVEmber

#PaintTheWorldOrange

#IHaveTheNerveToBeHeard

#DoYouHaveTheNerveToBeHeard

Check out the video’s of those who’ve been challenged already, and those who’ve accepted at: https://www.facebook.com/powerofpain

Twitter- @powerofpain

https://twitter.com/powerofpain

 

Faces of Pain Video 6 Presented by the Power of Pain Foundation (English and Spanish)

POPFNewNationalThe Power of Pain Foundation presents Faces of Pain 2014. The video features neuropathic information in both English and Spanish.

Faces of Pain 6th edition for Power of Pain Foundation

Thank you to everyone who participated in this video. Without you it would not have been possible. Thank you Jane Gonzales for writing the beautiful song, My Only Consolation.

Thank you Vanessa Lara-VanFleet, California Representative POPF for the translations. You did amazing as I knew you would.

Thank you Kurtis VanFleet National Youth Ambassador POPF for the unique Photo’s. One taken in West Sacramento, the other in Sacramento CA.

Thank you Barby Ingle, Ken Taylor.

Together we can! And we do!

Power of Pain Foundation is a National 501(C)(3) Nonprofit charity serving the pain citizens of America through education, awareness, social events, and access to care services.

 

 

3 Girls with RSD/CRPS

Megan 15, Tori 15, and Gracie 11.

Help These Girls Get the RSD/CRPS Treatment they need!

Megan Manuel (15)

http://www.gofundme.com/2f7l8g
Megan needs a Spinal Cord Stimulator

Tori Quinton (15)

http://www.gofundme.com/Help-Tori-get-better
Tori needs Calmare Therapy

Gracie (11)

http://www.gofundme.com/8wjinw
Gracie need to get to Dallas for CRPS Treatment

2 of the girls are 15 years old with RSD, one is only 11 with RSD.
Please consider helping them reach their fundraising goals or by sharing their pages so that they might have an extra opportunity for better exposure. The girls will be featured by the Power of Pain Foundation’s Patient Fundraiser Program August 2014.

As a CRPS/RSD patient myself, I would like to help their pages get noticed too, get  the care they need, even if in this small way, so that they might have a better quality of  life moving into their adult and teen years. They are each at a precious ages with school functions to look forward to, dances, activities to enjoy. Without pain relief  this will not be as possible as most take for granted. As adults it is hard enough, most of us have gone through life lessons to teach us strategies for survival. Adults can barely manage. I believe young ones have it much harder. They need life experiences, good memories to build on.

Their adult world comes soon enough.

Each parent will choose their child’s options, they may even decide on something else along the way…

Any recognition for Megan, Tori and Gracie is much appreciated.

Thank you!

Power of Pain Foundation 2014 Top-Rated Great Nonprofit

POPF2014TopRatedGreatNonProfits

Great Nonprofits is a place to find trustworthy nonprofits. Their mission is to inspire and inform donors and volunteers, enable nonprofits to show their impact, and promote greater feedback and transparency.

They have chosen the @powerofpain foundation #POPF as a 2014 Top Rated Nonprofit again for the 5th year in a row!

 

Congratulations to POPF on another great accomplishment!

Power of Pain Foundation on GreatNONPROFITS

~Twinkle V.

 

Power of Pain Patient Fundraiser Program for Youth

POPFDONTATE-

Power of Pain Foundation is excited to announce our fundraisers program. Each month POPF will donate $200 that will be spread evenly to 4 fundraisers. Each fundraiser selected will receive a $50 dollar donation and will be hosted on the home page www.powerofpain.org With a focus on youth, each fundraiser selected must be under the age of 21.

We understand the difficulties of raising funds. We want to spread awareness about your fundraiser. We want your story to be heard and have the chance to say thank you to those that do donate. Read someones story, make a donation and feel good about yourself at the same time. No donation is too small. A whole lot of little adds up to a gob!

If you would like to donate to this program and raise the amount that gets spread evenly please click here.

Fundraisers Program

All donations are tax deductible. See your donations directly help others. When you donate to this program your donation will add to the amount that gets spread evenly amongst our fundraisers for the month. It’s a fun and exciting way to see your donation help others. When you choose to donate to this program, your name will be listed as a program sponsor. Have fun helping others and feel good about yourself at the same time.

Please make your donations to this program dividable by 4.

If you know of a youth from infant to 20 years of age, please contact:

Power of Pain’s National Youth Ambassador

Kurtis VanFleet Kurtis.CA@powerofpain.org

or Twinkle.CA@powerofpain.org

We thank you!

Seeking Participants for Faces of Pain Video 6 By the Power of Pain Foundation

POPFLogoSeeking participants for Faces of Pain Video 6 by the Power of Pain Foundation. 

Please send your photo  (head shot or body shot, family photos, photos with your pets, etc are most welcome also, just let me know who you are in the photo)
Name
Age
Location (City and State)
Reason for diagnosis IE: Nerve damage, Carpal Tunnel, Surgery, Break, Bite, Disease, Heart, etc.
The year of diagnosis or the years with diagnosis.
Includes All Nerve Diseases and Disorders. Autoimmune, Neuropathic and Other.
A favorite quote!
All info will be placed on your photo.

If you need some anonymity to participate, first name and city or state is okay. Please let us know!

This video will feature “My Only Consolation” written by Jane
Gonzales” and sung by Lequita Hoffpauir.

Please send the above information with your photo to twinkle.ca@powerofpain.org
In the Subject Line add, Faces of Pain Video 6.

Faces of Pain Video 5 can be viewed here:
http://youtu.be/y8-ngc–Bpw

Participants from Faces of Pain Video 5 are more than welcome to participate again. We would love to have you!

We look forward to showcasing you in our upcoming video!
Thank you!

~Twinkle VanFleet, California Ambassador Power of Pain Foundation