Opportunity to Help Research To Detect Early Alzheimer’s Disease by Participating In a Registry

Biogen Idec is running a registry for researchers to advance their knowledge of early Alzheimers Disease. If you’re having memory problems or are worried you’re at risk of early Alzheimer’s, you can play an important role in improving our understanding of the disease. You will have the opportunity to learn about and take part in local studies looking at new treatment options. You will also receive some reimbursement for your time.

More about the registry:

  • There will be 14000 participants in this registry
  • This registry will take place over two years requiring no visits or overnight stays
  • This registry is taking place nationwide and you can complete it from the comfort of you own home.

If you are interested, the full study details and eligibility criteria are listedhere.

Eligibility Criteria:

Participants must:

  • be between 50 – 85 years old
  • be willing to answer questionnaires periodically over a 2 year block of time
  • be concerned that you are at risk for developing early Alzheimers have difficulty with memory or thinking skills

Participants must not:

  • already be diagnosed with Alzheimers Disease
  • have had events of stroke, epilepsy, or Parkinson’s Disease

ADDITIONAL INFO ON THE REGISTRY

If you agree to participate in the registry, you will be asked to complete an online questionnaire to assess how you understand, remember, and communicate information. This questionnaire will be repeated every 3 – 6 months. You will also be asked to take a brief 10 – 15 telephone call, which will be repeated every 6 months. The registry team may use your answers to see if you may qualify for another clinical research study. If you are interested in participating, we will ask for your permission to send your contact details to the study center. After you speak with someone at the study center, you can decide whether or not you want to participate in the study.

Please complete the online questionnaire to check if you’re eligible for the registry.

Learn why I’m talking about Clinical Trials

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She Awaits Him

SHE AWAITS HIM

by Twinkle VanFleet

Heaven

AND HERE HER GROUND HAS COME TO OPEN,

LIKE ARMS SPREAD WIDE IN WELCOME-

PATIENTLY AWAITING HIS COMPANY ONCE SHARED,

SHE’S COME TO GUIDE HIM TO HEAVEN.

ONCE GATHERED ABOUT HER RESTING PLACE,

AND WISHING NEVERMORE-

NOW WE LAY HIM DOWN ATOP HER HEART.

WHERE NEW PAIN AND TEARDROPS POUR.

WHERE TIME HAS NAMED THEM RE-UNITED,

AND A CHILD’S HEART WILL WEEP IN SORROW-

WHERE ANOTHER DADDY IS LAID DOWN TO SLEEP,

AND HIS CHILDREN BEGIN TO FACE THEIR TOMORROW.

WHERE DAUGHTERS CRY AND SONS TOO WILL SHED HIS TEARS,

WHERE WE LAY DOWN OUR FATHERS-

AND LEARN TO COPE WITH OUR FEARS,

I STAND HERE BEFORE YOU- NOT A STRANGER TO THE LIGHT.

SEE YOU IN THE MORNING- SWEET DREAMS, GOODNIGHT.

©1998-2015 Twinkle Wood-VanFleet/Golden Rainbow Poetry

All Rights Reserved. Copyright Laws and Regulations of the United States http://www.copyright.gov/title17/

Errors and Bullying in Chronic Pain Care

Oxy10Insurance is denying payment for opioid medication unless the patient agrees to attend a drug program. A California chronic pain patient with Reflex Sympathetic Dystrophy told me of her experience. She wants others to be aware that this could happen to them. The patient was fortunate to be able to pay for her medication/  She said “Poor people are screwed! If I wouldn’t have had the money, I’d be without meds”. This seems to be a rising problem. The issue of prescription drug abuse is an important one and is being addressed. This patient has no history with abuse. It would be important to address this if she was a previous addict or if an issue developed during the course of treatment, but I find it disconcerting that she not be entitled to coverage unless she agrees. This brings me to another point. Will it be clearly noted in the record that the patient was not misusing or abusing prescription medication when referred to the program. It is important that it be made clear and precise because otherwise as the medical record follows her it could simply be said that a drug diversion or drug rehabilitation program was attended leading another doctor or pharmacist to the belief the person is an addict.

These are important questions and they cannot be ignored. There is a problem with file management that already exists. Previous medications aren’t removed from the record and for other patients that leave one State to find a Physician in another it appears they are still on narcotics they were no longer taking. With the development of the Controlled Substance Utilization Review and Evaluation System (CURES) and the California Prescription Drug Monitoring Program (PDMP) healthcare providers who are eligible to prescribe controlled substances, pharmacists authorized to dispense, law enforcement, and regulatory boards are able to access patients controlled substance history.

These are tools that assist in learning information about a patient, but if information is not entered in correctly can also do harm. A little example, my husband was at his appointment recently and was asked if his medications had changed. This appointment was with his heart specialist. We had let the assistant know that his Gabapentin which he takes for Diabetic Neuropathy had been altered. She did right by asking but it didn’t make it into the record. An oversight. What if the medication was an analgesic opioid that was no longer being taken? Human error. No one would know it was no longer being taken. The assumption if a patient needed to be treated with a narcotic might be that they were drug seeking. Especially if other medications weren’t removed as well. Fortunately it wasn’t a major error. Unfortunately for someone else it could have been. Information still has to be entered accurately and people do make mistakes. Others simply don’t care enough to make sure it’s right.

Another example, an emergency room visit for an injury to the body. When the report was available it read, Alcohol Intoxication, as the reason for the visit. While the patient was intoxicated the only reason for the visit was to control bleeding, severe soft tissue damage requiring x-rays, and soft casting. While it should have been noted that the person was intoxicated it should not have been listed as the primary reason for the visit. This leads other physicians and emergency room personal who are only viewing the first part of the record to misconceptions which can adversely affect a patient in a new situation. They don’t have enough time in triage to look further, nor are most interested.

Learn the difdifferences between Electronic Medical Records, Electronic Health Records, and Personal Health Records

Patients need to become more assertive. Most of us feel that we are doing something wrong if we ask too many questions or if we demand a change. We have to take a more active role in our own care and lack thereof. We now have access to many of our own records for review in online patient centers. We can even communicate with our physicians.

If we don’t play an active role in our own care, records management and pain management, we will continue to be the scapegoat for other peoples errors. Lets review. A patient being required to enter a drug program in order to receive medication through her insurance. Another patient whose medication wasn’t updated and another whose reason for an emergency room visit wasn’t accurate.

There are hundreds of other stories that have been shared with me that just don’t add up. It all has more to do with the businesses involved than it does with any of us. For an insurance company to tell a patient they will only cover her medication if she completes a drug program, when she isn’t an addict, leads me to believe there is something in it for them, even if it’s to fulfill and obligation. An incentive. Patients are made to feel like they are abusers and addicts. This is wrong. For the small percentage that might be, it still wouldn’t be right to treat them poorly. These are the ones that would need help and to be assessed accordingly. I do know of legislation in the works that if a patient is on an opioid for 3 months or longer a drug program would be required to continue the medication.

Stay tuned,

~Twinkle V.

High-Frequency Surpasses Traditional Spinal Cord Stimulation in First Controlled Trial Comparing Technologies

Released: 24-Mar-2015 2:05 PM EDT 

Newswise — March 24, 2015, NATIONAL HARBOR, Md. –- The first-ever randomized, controlled trial to compare spinal cord stimulation (SCS) technologies found that high-frequency SCS using 10 kHz (HF10) exceeded lower-frequency, traditional SCS in response rate and pain relief. Further, this was achieved without the paresthesia that may cause discomfort with traditional SCS, the researchers reported in a scientific poster at the 31st Annual Meeting of the American Academy of Pain Medicine.

Traditional SCS low-frequency (~50 Hz) stimulation is an attempt to mask the sensation of pain with a tingling or buzzing sensation, known as paresthesia. Therefore, the therapeutic goal with traditional SCS is to cover the areas of pain with paresthesias, explained B. Todd Sitzman, M.D., M.P.H., medical director of Advanced Pain Therapy, PLLC, in Hattiesburg, Miss.

In contrast, “high-frequency HF10 therapy utilizes a stimulation frequency that is orders of magnitude higher than traditional SCS,” Sitzman said. “HF10 therapy does not produce paresthesias and achieves superior back and leg pain relief.”

More importantly, HF10 therapy was shown to be superior to traditional SCS in all of the study-related primary and secondary endpoints, including response rate and pain relief. The magnitude of back pain relief was consistent with previous European research of HF10 therapy (Van Buyten et al, Neuromodulation 2013;16(1):59-65; Al-Kaisy et al, Pain Med 2014;15(3):347-54).

The use of SCS, introduced in 1967, has expanded as a treatment for difficult pain syndromes, encompassing peripheral neuropathies, complex regional pain syndromes, peripheral vascular disease and other disorders in addition to failed back surgery syndrome (Deer, Techniques in Regional Anesthesia and Pain Management 1998 2(3):161-7).

Traditional low-frequency SCS systems are widely used in clinical practice. However, the scientific literature indicates that achieving back pain coverage with traditional SCS is technically difficult and is often not sustained over time. (North et al, Neurosurgery 2005;57(5):990-62005; Frey et al, Pain Physician 2009;12(2):379-97). According to one report, 71 percent of patients who received an implant with traditional SCS experienced discomfort from the stimulation of paresthesia (Kuechmann et al, Abstract. Pain in Europe VI [EFIC], Lisbon, Portugal: Sept. 9-12, 2009). In the current study, 44 percent of patients receiving traditional SCS reported uncomfortable stimulation.

The study was a prospective, randomized, multicenter, comparative trial of the investigational HF10 vs. the standard SCS therapy, designed in consultation with and monitored by the FDA. Institutional review board approval was obtained for each study site.

The 12-month follow-up data indicated that the responder rate with HF10 therapy was twice that with traditional SCS for both back and leg pain. Also, the average degree of pain relief with HF10 therapy was more than 50 percent greater than with traditional SCS. The level-1 evidence with 12-month follow-up meets today’s rigorous standards for evidence-based healthcare and complies with regulatory agency and payer preference for comparative effectiveness, the investigators said.

“These results provide important comparative effectiveness data for healthcare providers and clinically relevant information for pain physicians, patients and payers,” Sitzman said.

At present, HF10 therapy is investigational in the United States. The manufacturer of the device, Nevro Corp., which funded this study, anticipates obtaining market approval from the FDA by mid-2015.

Poster 140 – Rationale for the SENZA-RCT Study Design and Comparative Outcomes

About AAPM

The American Academy of Pain Medicine is the premier medical association for pain physicians and their treatment teams with over 2,500 members. Now in its 32nd year of service, the Academy’s mission is to optimize the health of patients in pain and eliminate pain as a major public health problem by advancing the practice and specialty of pain medicine through education, training, advocacy and research. Information is available on the Academy’s website at http://www.painmed.org.

via High-Frequency Surpasses Traditional Spinal Cord Stimulation in First Controlled Trial Comparing Technologies.

Power of Pain Foundation Co Sponsor Assembly Bill 623

california-sacramento-state-capitol-1Yesterday the Power of Pain Foundation Co-Sponsored AB 623 with Assembly Member Wood at the California State Capital in Sacramento where the bill was officially introduced.  I spoke on behalf of both pain patients and opioid abuse. In attendance with me and on behalf of POPF and the bill was Erik VanFleet, Kharisma VanFleet, Debbie Ellis, and Brandy Ellis.

Speaking at the event was: Assemblymember Wood (author), Assemblymember Levine, Mendocino County Sheriff Tom Allman,  Ralph A. Cansimbe, Chapter Commander PFC Alejandro R. Ruiz Chapter, American G.I. Forum, Representatives from bill sponsors US Pain Foundation, Power of Pain and American Chronic Pain Foundations and the CA Academy of Physician Assistants.

Legislation to Curb Prescription Drug Deaths UnveiledAB623_March242015_POPFCoSponsorWithAssemblymanWood

Published on Mar 26, 2015

(Sacramento) – California legislators, public health representatives and law enforcement officials announced new legislation at a State Capitol news conference to curb prescription drug abuse and deaths. Assembly Bill 623, authored by Assemblyman Jim Wood (D-Healdsburg), aims to reduce prescription drug abuse-related deaths by reducing their access to those most prone to abusing them. More than 60 people die every day in the United States from prescription drug overdoses. Approximately 6.5 million people in the US abused prescription drugs in 2013, more than double those that abused heroin, cocaine and hallucinogens combined. “Narcotic pain medications, or opioids, have an important role in our health care system,” said Assemblymember Wood, who is a licensed dentist. “They provide effective relief for the millions of Americans who suffer from chronic pain. But too easily they are getting into the wrong hands.” Here’s more in this Assembly Access video.http://www.asmdc.org/wood

Watch the Press Conference on Assembly Live

AB623_March242015_POPFCoSponsorWithAssemblymanWood_1

My speech-

Hello, My name is T. VanFleet, I am the Advocacy Director and Executive Board Member of the Power of Pain Foundation. I am also a pain patient myself. Through painful trial and error, my physicians and I have finally found the appropriate combination of medications to provide some relief from my debilitating symptoms. The prescription medications that I take allow me to do things that most people take for granted. Now, I celebrate small triumphs such as cooking, occasionally attending a function, and watching my grandson grow. One of the medications that helped give me my life back is a prescription opioid. A type of medication which has recently come under increased scrutiny due to heavy abuse by some.

Unfortunately, people who use prescription medications as intended can become unfortunate casualties of efforts to regulate opioid abuse, as we end up getting lumped in with those who misuse treatments. It is difficult to obtain refills,, denials and delays by pharmacists and insurance, including workers compensation leave patients in withdrawal and un-manageable circumstances including suicidal ideation.

Fortunately, there are new weapons available to help combat prescription opioid abuse which do not sacrifice the many patients who legitimately use the medications to fight pain. New “abuse deterrent formulations” (ADF) for opioids have properties that make it difficult or undesirable for someone to tamper with them. These medications are made with physical and chemical barriers, such as a special kind of coating or hardness to the pill itself, that won’t allow them to be chewed, crushed, cut, grated, ground up, or melted with water or alcohol.

The Power of Pain Foundation strongly believes that California policymakers must enact policies such as AB 623 to help develop a strong, lasting solution to the health crisis of prescription opioid abuse. We must find a balance that separates patients who truly need opioid medication to live productive lives and those who are abusing them. Responsible patients should not be punished in an attempt to crack down on prescription drug mis-use and abuse. Legislators, health care professionals and pharmaceutical companies must work together to stop opioid abuse while keeping the needs of chronic pain patients front-of-mind.

<end>

—-

I was honored to support this bill with Assemblyman Wood on behalf of the Power of Pain Foundation. It’s important that we assist in the prescription opioid drug abuse problem. This will help responsible pain patients get access to the care they need. Too many are denied now because of the stigma attached to their chronic pain identity. Abuse deterrent formulation’s will assist both issues.

AB623_March242015_POPFCoSponsorWithAssemblymanWood_2

Press Release Article Tuesday, March 24, 2015

Legislation to Curb Prescription Drug Deaths Unveiled by Assemblyman Jim Wood

For more information on the Power of Pain Foundation’s Policy Efforts, please visit-

Power of Pain Foundation | Policy Efforts | PatientAwareness.org

patient-awareness1-popf

-Friday March 20, 2014 Episode of

The Burning for a Cure show

With Hosts POPF President, Barby Ingle and POPF Executive Board Member & Marketing Director and Promotions Chairman – Joeygiggles and Co-Hosts Executive Board Member and Advocacy Chairwoman Twinkle VanFleet with Power of Pain Foundation Executive Director Ken Taylor.

Discussion: Legislation- Abuse Deterrent Formulation (ADF), more  Listen Here

Out in the real world, I try not to identify as a pain patient. We will be judged. You know it, and I know it. It becomes our label. As I attempt to go forward in advocacy it can sometimes be a little awkward. Not in my physical appearance, but In my inability to speak properly, delays, memory, forgetfulness, stuttering, wake-sleep, sleep-wake. I’m heading into my 15th year with CRPS type 2. My Neurocognitive deficit seemed a rapid decline. It’s part of the story that helps me fight to go on, for my family, for you.

You have to hang on to you! It’s okay to not be perfect. It’s okay to not be your “yesterday”.

The struggle is real. We are who we’ve become.  And it really is okay in all that it is. We might not like it, but we have to learn to accept it.

POPF-CoSponsor-AB623_BrandyEllis_DebbieEllis_TwinkleVanFleet_March242015PostPressConferenceCaliforniaStateCapital

Perfection is all that you can achieve in the here and the now. Getting that shower, getting dressed, combing our hair. Those are the triumphs.

There’s so much worth in the smallest things.

I believe in you! Believe in you, too.

Thank you Barby Ingle for always believing in me and my ability even when I didn’t.

POPF_AB623_KharismaVanFleet_BrandyEllis_DebbieEllis_TwinkleVanFleet_March242015
Lets try to remember to not pre-judge a chronic pain patient on appearance or preconceived notions, but instead, assess on diagnosis, and credibility. ~Twinkle V.

In Your State | Compassion & Choices

Recent Developments

California

Compassion & Choices (C&C) California is campaigning for the End of Life Options Act, which was introduced in the state legislature by Senators Bill Monning and Lois Wolk on January 21, 2015, dramatically accelerating C&C’s 5-year plan to make aid in dying an open, accessible and legitimate medical practice in California. C&C California continues to build bottom-up support at the city and county levels and is driving the grassroots to press for statewide aid-in-dying legislation. At an emotional press conference with lawmakers announcing the bill, powerful C&C advocates spoke out for end-of-life options, including Jennifer Glass, Anita Freeman, and Brittany Maynard’s family – mother Debbie Ziegler, widower Dan Diaz and his brother, Adrian – who returned home to California after Brittany’s death in Oregon.

Read more Recent Developments-

via In Your State | Compassion & Choices.

Answered Prayer

IMG_0263ANSWERED PRAYER

Dedicated to my son Kurtis Ozra VanFleet

by Twinkle VanFleet

March 31st

I LONGED FOR HIS PRESENCE- I DREAMED HE WAS HERE,

I COULD FEEL HIS SPIRIT- FOR I KNEW HE WAS NEAR.

I CRIED IN THE NIGHT- MY BODY ACHING AND OVERWHELMED,

THE MOST BEAUTIFUL FEELING- FOR HIS HOPE THAT I HELD.

I NEEDED HIS COMFORT AND ALL THE LOVE HE WOULD GIVE-

HE WOULD BE THE DIFFERENCE- IN THIS WORLD THAT WE LIVE.

RUMOR WAS I DIDNT DESERVE HIM, I NEEDED TO TAKE CARE OF WHAT I HAD-

NEVER WAS MY HEART SO HURT- BROKEN AND SO SAD.

I CLOSED MY EYES AND HEARD HIM- MY MOMMY, PLEASE DONT CRY-

I AM THE ONE YOU LONGED FOR, MY WINGS HAVE LEARNED TO FLY.

A VOICE SAID, HE’S ALWAYS LOVED YOU, SO YOU WILL BE THE ONE-

I GAVE YOU WHAT YOU ASK FOR, I BLESSED YOU WITH A SON!

©2001-2015 Twinkle Wood-VanFleet/Golden Rainbow Poetry/All rights reserved.

For viewing purposes only. May not be copied, reproduced or altered in any way. Has been published at

several poetry sites through out the years. Originally written 1997.

Copyright Laws and Regulations of the United States http://www.copyright.gov/title17/

(Kurtis was born during “The Cold Hard Run” refer to “Look At Us Now”)

Imagery

Happy Birthday my Son, I love you! And I know….

Mama Knows…  She always knows.

Don’t ever forget.