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Spondylitis Awareness Matters

2015 April 10

logoBy Guest Blogger Richard A. Howard, associate executive director, Spondylitis Association of America (SAA)

Spreading awareness for a disease helps in all sorts of ways. Ask the “ice bucket” people.

For spondylitis, awareness improves lives. April is Spondylitis Awareness Month.

Saturday, May 2, is World Ankylosing Spondylitis (AS) Day. To raise awareness and have a chance to win an iPad Mini click here.

When People Are Unaware

What happens when people are unaware?

  1. People “self-medicate” with alcohol and drug abuse.
  2. People break their neck with a roller coaster ride (or a “simple” fall).
  3. People have permanent vision damage including loss of eyesight.
  4. People are considered whiners, lazy and antisocial.
  5. People think it’s normal “growing pains” when a child lays on the floor crying from hip pain.
  6. People have spine or hip surgery, merely to have the pain return.
  7. Providers mistakenly diagnose patients with mental illness instead of referring to a rheumatologist.
  8. Providers are confused when their patients do not get better.
  9. Radiologists don’t notice ankylosing spondylitis on the X-ray and MRI.
  10. People forget to donate to this common, painful and often permanently disabling disease.
  11. People go undiagnosed until it’s too late to stop permanent damage to the spine.
  12. People don’t know why they are angry and short tempered.
  13. People may never fully trust doctors again.
  14. People lose out on having close, long-term relationships with their parents, spouse and children.
  15. People don’t know that their digestion, vision, small joint pain, back pain, fatigue and limited range of motion, osteoporosis, sciatic pain, heart and lung issues are all related.
  16. People feel isolated, alone and depressed.
  17. People don’t know what can be done to feel better.

Help And Answers For Your Questions

Seronegative spondyloarthritides, more commonly called spondyloarthritis or simply “spondylitis,” refers to a group of auto inflammatory diseases that primarily affect the spine and other joints. The Centers for Disease Control and Prevention estimates at least 2.7 million adults in the U.S. have axial spondyloarthritis.

Men and women get this disease. Rheumatologists diagnose and treat this disease. There is a genetic component, so there is a tendency for it to occur in more than one family member. There is no definitive blood test, and diagnosis is not simple.

Incredibly, people can be relieved to hear that they have this painful, incurable disease—because they have been living in pain without any medical answers for years and years.

A lot of progress has been made in the 30 years the Spondylitis Association of America (SAA) has been around. There is a network of support. There are researchers improving lives and seeking a cure.

There is reliable, evidence-based information in a magazine, website, email newsletters, at seminars and just a phone call away through our SAA Member Hotline at (800) 777-8189.

Visit for more information.

Could It Be PD? April Is Parkinson’s Disease Awareness Month

2015 April 6

Parkinsons-blogBy Tai of Allsup

Bruce’s hands were swollen. Ruth’s foot felt like it was dragging. David could move his left hand, but not his right at the same time.

They didn’t know what was happening*—and at first, neither did their doctors. Eventually, they would be diagnosed with Parkinson’s disease (PD), a progressive neurological disorder that affects nearly 1 million people in the U.S.

April is Parkinson’s Disease Awareness Month—a time to raise awareness among healthcare providers and the public. There is no diagnostic test for PD, so patients often go undiagnosed for years.

Could it be PD?

According to the National Parkinson Foundation, two of four symptoms must be present over a period of time to consider a PD diagnosis. They include:

  • Shaking or tremor.
  • Slowness of movement (bradykinesia).
  • Stiffness or rigidity of the arms, legs or trunk.
  • Trouble with balance and possible falls, also called postural instability.

In addition to motor symptoms, people with Parkinson’s disease can experience depression, anxiety, psychosis and problems with impulse control. This combination of symptoms often makes it impossible for people with PD to continue working.

PD progresses differently in each individual. One study found that 82 percent of patients felt they were too disabled to work full time three years after PD diagnosis.

For those who need it, Social Security Disability Insurance (SSDI) is a valuable resource. The same study found that those who applied for SSDI did so about five years after diagnosis, and those who were awarded had extensive medical evidence and/or the help of an SSDI representative. Click here for more information about Parkinson’s disease and SSDI.

The American Parkinson Disease Association (APDA) offers daily ideas throughout April, on how you can take action to make a lasting impact in the lives of those who battle this disease.

According to APDA:

  • There is currently no treatment, therapy, or drug to slow or halt PD progression.
  • Onset usually occurs in the fifth or sixth decade of life, however up to 10 percent of individuals will receive a diagnosis before the age of 50. The APDA National Young Onset Center focuses on developing education and support services that address the unique needs of young people with PD, their family members, friends and their healthcare team.
  • The APDA Veteran and Information Referral Center is a centralized resource dedicated to supporting and improving the lives of military veterans with PD.

Veterans who have experienced traumatic brain injury as well as PD may be eligible for additional VA disability pay.

For a free SSDI eligibility screening, visit or call (888) 841-2126.

*Read more about Bruce, Ruth and David at


Common Mistakes From A Social Security Disability Expert: Not Applying

2015 April 2

ss-cardBy Ed of Allsup

In my four decades in the disability business, I’ve seen individuals with disabilities make some mistakes with the Social Security Disability Insurance (SSDI) program.

One of the common mistakes (but many people don’t think about) is made by people who are qualified but don’t apply for Social Security disability benefits.

Here are some of the reasons people we hear:

  • “I’m OK because I have family support.” – such as a spouse or relatives.
  • “It’s just like giving up on life.”
  • “I’ll never get them anyway, so why waste my time.”
  • “I am not going onto a welfare program.”
  • “I don’t think my disability is permanent.”

Years later, when you come back to Social Security for your retirement benefits, you could be in for a shock.

You’re getting a lot less money than you should for all your years of work.

That’s because you have several years of no earnings, and the Social Security Administration counted all of those years when it determined your retirement benefit.

Retirement Freeze from SSDI Program

Many people don’t realize that when they qualify for SSDI benefits, the SSA freezes their earnings. The years when you have a disability don’t count against you in retirement. This is a protection for you and anybody who works for decades and must stop following a severe disability.

The retirement freeze is just one important reason to apply for SSDI, and it points to the risks if you are only going to count on family support until retirement.

  • If you truly have a disability that prevents you from working for a year or more, then you are qualified to receive SSDI. Contacting an expert disability representative like Allsup will help you figure out if you should apply. You don’t have to guess if you aren’t sure.
  • SSDI is not welfare—more than 150 million workers in the U.S. pay for this insurance with their FICA taxes. You’ve already paid for this coverage.
  • SSDI should be filed for as soon as possible because the SSA only pays retroactive benefits 12 months prior to filing. If you wait more than a year after you become disabled, you will lose retroactive benefits—money you were entitled to receive.
  • Don’t worry about whether your disability is permanent. If you see improvement in your medical condition and return to work down the road—that would make everyone happy, including Social Security.

Allsup experts have helped many people to obtain SSDI benefits, then watched as they went back to work a few years later. That’s what we call a success story.

If you’re written off applying for Social Security disability benefits, please think again. Give us a call at (800) 678-3276 or click here for a free SSDI evaluation.

If you don’t have time now, come back later to the easy online form at It only takes one simple step to ease your mind.


It’s Time To Thank Your Doctor For Helping Your Social Security Disability Claim

2015 March 24

Swierczek-colorBy Ed of Allsup

Often we don’t think of our physicians—until we need them. But the opportunity is coming on Monday, March 30, during National Doctors’ Day.

I’ve been in the Social Security Disability Insurance (SSDI) business for more than 40 years and I’ve helped many thousands of people receive their SSDI benefits. That’s why you can believe me when I say that no one is more critical for you to be granted disability benefits than the doctor treating you.

Let me be very clear. If your doctor doesn’t agree that your disability keeps you from working, you will have a difficult time securing SSDI benefits. It is critical to have his support.

Keep Your Doctor Informed

That’s why it’s so important that you keep your doctors informed of all your ailments. If you’re feeling more tired than normal; tell him. Be sure and tell him if you’re having muscle discomfort, chest pains or shortness of breath.

Your doctor may not only be able to help you feel better, he’ll also document your ailments in your medical records. This is critical because without fully documented medical records, your disability claim probably won’t get through Social Security’s proverbial front door.

Let’s face it. Most physicians do not focus on disability claims as a part of their day-to-day work. They’re usually more concerned about treating you and helping you get healthy.

For example, they may not want to limit your potential for improvement or say that you can’t work. On the other hand, if your medical records are complete and accurate in detailing your disability, especially the severity and impact on your daily activities, then those records speak for themselves.

One more tip: Let your doctor know when you are considering filing for SSDI. Ask him what he thinks. If you’re under age 50 and he says he thinks you’re physically and mentally able to work, then it is less likely that you qualify for benefits with the Social Security Administration (SSA). The SSA’s disability regulations state if one is under age 50 and able to perform any work, not just one’s past work, a finding of disabled is not warranted. If you’re over 50, different rules may apply. Either way, when it comes to medical records—document, document, document.

Tell your doctors that you’re thinking about them on National Doctors’ Day. Better yet, send them a greeting card and they’ll really know how much you value their support.

If you have questions about when to apply for Social Security disability benefits, call us at (800) 279-4357 or click here for a free disability screening.


Taking Off My Clothes In Public Is Embarrassing!

2015 March 17

By Guest Blogger Deanna Ross, peer support specialist and National Alliance on Mental Illness (NAMI) international trainer

I’m not an adult entertainer, but what I did could be considered entertainment! I have psychotic symptoms of Bipolar 1 disorder. In psychosis, I’ve spent thousands of dollars in a matter of days, I thought the TV was sending me special messages, and I was able to go three days without eating or sleeping. At the height of one psychotic episode, I took off my clothes in front of the emergency responders who were trying to talk me off the highway and into an ambulance.

How embarrassing to even mention! But I’m recovering from mental illness, and part of that recovery is talking about what many folks want to shame or hide. It’s called stigma, and it’s not pretty and feels far less than good to those of us who live with these sometimes debilitating illnesses.

I’m an international trainer, featured in The New York Times (click here to see Times online: “Patient Voices, Bipolar Disorder”), recognized by politicians and even a U.S. Senator, and won prestigious awards—all around issues of mental True-Help-webinar-Flyerhealth.

But you know what? I’m a mom completely enamored with my kids and grandkids. I’m deeply spiritual. Chipotle is my favorite fast food spot. If I die, death by chocolate is an OK way to go. I love movies, especially cartoons. Disney’s Sleeping Beauty is my favorite. Don’t judge me. Love conquers all.

Seriously, if someone like me doesn’t talk about those embarrassing and odd things, how will stigma ever be eradicated? How will folks seek the help they desperately need? How will our leaders be educated and willing to fund important programs and research? I’ve been given the gift of spreading knowledge, hope and well-being. Yeah. I’ll take a little embarrassment.

Editor’s note: Do you have a story to share? Join Deanna for the True Help® Web event, “Telling Your Story,” Thursday, March 26. Get more information and register at


March is National Essential Tremor Month

2015 March 12

TAN-logoBy Guest Blogger Kathleen Welker, Tremor Action Network board member

On Dec. 7, 2010, the U.S. House of Representatives passed a simple resolution, H.Res. 1264, whereby the House resolved that March would be the month to designate as National Essential Tremor Month “for the purpose of raising awareness about the Nation’s number one neurological condition, affecting approximately 10 million Americans.”

At the time, the House recognized that “essential tremor interferes with a person’s ability to perform activities of daily living such as grooming and writing, and in approximately 5 percent of cases, is totally disabling. “

For 2015 Essential Tremor (ET) Month, Tremor Action Network (TAN) has created the hashtag #MARCH2015_4ET, asked the ET community to tell their story, and challenged Facebook, Twitter and Yahoo followers to participate in the ET Challenge:

  • Each day of March, share with TAN, and/or on your Facebook page and Twitter feed: “One thing that your tremor makes more difficult.”

Essential Tremor Challenge: Share One Thing

The ET Challenge has not only sparked many diagnosed with ET to share their challenges, but also to post their suggestions and real solutions in handling their daily activities of living with a physical challenge.

Individuals with ET have shared insights about their inheritance of a familial tremor, how they paint with oils, and specific products they use for drinking from a cup, such as custom made straws.

Other helpful items they have shared include a specialized chair, keyboard tray and mouse pad with wrist rest for using a computer; software to steady a computer mouse; a custom-made spoon; flatware utensils with thicker handles; a stabilizing device that includes a regular-size spoon, a large soup spoon and a fork that have interchangeable attachments; a password manager that makes it easier for shaky hands to create online accounts;  electric tooth brushes that have fatter, easier-to-grip handles; electric razors that make it easier to shave with unsteady hands; can openers for hard to open canned goods;  plastic wrap that’s easier to seal food; and magnetic shirts that make buttoning a snap, just to name a few.

While H.Res. 1264 stated that “research shows that people with essential tremor have a higher incidence of depression,” the TAN ET Challenge has positively enticed ET patients to share their creativity.

TAN is pleased that those with ET are proactively participating in #MARCH2015_4ET.

Tremor Action Network is a 501(c)(3) patient advocacy organization dedicated to providing boutique services that include one-on-one support and guidance.

TAN can help you with or without a diagnosis.  The public benefit organization is “Shaking the World to Find a Cure.”

Editor’s note: Read TAN’s “tell your story” featuring Nannette Halliwell, at Then learn how to share your own personal story by registering for “True Help Telling Your Story,” at 

What Is The Greatest Story Ever Told?

2015 March 10

flyer-useBy Tai of Allsup

I know my answer. What’s yours?

At last year’s Aspen Ideas Festival, a group of storytellers weighed in with answers ranging from the Bible to “Anna Karenina” and “Charlotte’s Web.”

We relate to great stories. A story that echoes our own memories and evokes emotions we’ve felt before has a great impact, even if it is set in a foreign land with exotic characters.

I’ve never been to Africa or had a warthog as a friend, but “The Lion King” made me cry because I had just had my first son, and it helped me re-experience the joy of becoming a parent.

“Romeo and Juliet” is often called the greatest love story ever told—because the throes of adolescent love are universal.

I recently saw the movie “American Sniper.” At the end of the movie, everyone in the theater was still and quiet—connected by a communal acknowledgement of the story of sacrifice we had just watch unfold.

Great stories inspire, move and connect people.

True Help – Telling Your Story

I believe everyone has a great story inside of them. For individuals living with disabilities, those stories are too often left untold.

Tell your story.

Join me for the interactive Web event, “Telling Your Story,” Thursday, March 26, at 11 a.m. CST.

“Telling Your Story” will provide the knowledge and tools to help you develop your own narrative. It will help you share your story with friends and family, healthcare providers, social service agencies, peers, policymakers and other audiences.

“If you can imagine that there is truly something central and universal and beautiful in the story you’re working on that may rise up, it kind of keeps you going,” said Aspen Ideas Festival panelist Jay Allison, who was featured in the post-festival video.

He liked “The Lion King,” too.

Register for the free event at

A World Free Of MS

2015 March 3

NMSS_GatewayAreaChapterBy Guest Blogger Mitch Scheperle, online marketing coordinator, Gateway Area Chapter of the National MS Society

The National MS Society mobilizes people and resources to drive research for a cure and to address the challenges of everyone affected by multiple sclerosis.

We help each person affected by MS in our area address the challenges of living with MS by raising funds for cutting-edge research, driving change through advocacy, facilitating professional education, and providing programs and services that empower people with MS and their families to move their lives forward.

  • What is MS? In multiple sclerosis, damage to the myelin in the central nervous system (CNS)—and to the nerve fibers themselves—interferes with the transmission of nerve signals between the brain and spinal cord and other parts of the body.
  • Who gets MS? Anyone may develop MS, but there are some patterns. More than two to three times as many women as men develop MS and this gender difference has been increasing over the past 50 years. MS also occurs in most ethnic groups.
  • How many people have MS? More than 2.3 million people are affected by MS worldwide.
  • What are the typical symptoms of MS? Because MS causes damage in the CNS, nearly any function can be adversely affected. However, the most common symptoms are overwhelming fatigue, visual disturbances, altered sensation and difficulties with mobility.
  • Can MS be cured? Not yet. There are now FDA-approved medications that have been shown to “modify” the course of MS by reducing the number of relapses and delaying progression of disability to some degree. Advances in treating and understanding MS are made every year, and progress in research to find a cure is very encouraging.

Fuel Progress During MS Awareness Week: March 2-8, 2015

Each year, people across the country who want to do something about multiple sclerosis—people just like you—unite during MS Awareness Week to share their stories, create awareness about the disease and change the world for everyone affected by MS.

MS Awareness Week is a special opportunity to inspire others to join you in taking action.

Taking action can be as simple as telling your own story in person or through social media, volunteering at an MS Society event or program to help others, or inviting friends and family to join you for the fundraising event you do each year. Big or small, every action matters and every connection counts.

It’s up to us to do something about MS. And MS Awareness Week is the perfect time to take the next step by sharing your story and inspiring others. What will you do for MS Awareness Week?

Share why you connect at

Learn more about the Gateway Area Chapter of the National MS Society at

Attention Vets: You May Qualify For VA Disability Benefits Even If You Weren’t In Combat

2015 March 2

military-uniformBy The Old Sarge

You didn’t have to have dodged bullets and bombs in a combat zone to qualify for veterans disability benefits.

The U.S. Department of Veterans Affairs (VA) reminds military veterans that they may qualify for disability benefits if they were exposed to a wide range of environmental hazards during military service if this exposure resulted in a disease or injury. I recently wrote about how Agent Orange is back in the news, but the definition of an environmental hazard extends far beyond the defoliant used in Vietnam. Also included are:

  • Asbestos: Members of certain occupation military specialties may have come in contact with asbestos during mining, milling or shipyard work. Some veterans were exposed to asbestos when entering older, damaged buildings in Iraq and other countries.
  • Contaminated drinking water: Water systems at Camp Lejeune, North Carolina, were contaminated with chemicals from at least 1957 through 1985. There is some evidence that the water may be linked certain diseases.
  • Specific environmental hazards: The VA also warns veterans that environmental exposure may include contact with burn pits, particulate matter, chemical fires and waste disposal systems.
  • Ionizing radiation: Some military members may have been exposed to radiation if they participated in nuclear weapons testing. Certain diseases may develop after radiation exposure.

Find more information about applying for veterans disability benefits on the VA website.

Veterans Disability Appeal

On the other hand, Allsup may be able to help if you already went through the VA process and were denied disability compensation, or if you received a lower rating than you believe you deserved.

Our VA-accredited Claims Agents work with veterans to successfully file appeals and receive the highest possible rating level of VA disability compensation. Brett Buchanan, an Operation Iraqi Freedom veteran, heads our disability appeals service.

Click here for a free VA disability evaluation or call (888) 372-1190.

Tell them the Old Sarge sent you.

Rare Disease Day Unites Patient Advocates In The Fight For Research And Treatment

2015 February 19

PHA_logo-useBy Guest blogger Angelia DiGuiseppe, Grassroots Campaign Associate, Pulmonary Hypertension Association

Living with a rare disease can feel isolating, but in fact, 1 out of every 10 people has a rare disease.

That’s one in every crowded elevator. Four on every full bus. Thirty million people in the U.S. alone.

With so many people impacted by rare diseases, and so much recent progress in medical science, you might think that most rare diseases would be treatable. In fact, only about 250 of the 7,000 identified rare diseases have available treatments. That’s less than 5 percent. In addition, many of these diseases are unknown to the general public.

On Feb. 28, 2015, Rare Disease Day, individuals whose lives have been touched by a rare disease will join together to tell their neighbors, communities and the world what life with a rare disease is like.

The Pulmonary Hypertension Association is proud to partner with the National Organization for Rare Disorders in support of Rare Disease Day.

Pulmonary hypertension (PH) is a complex, potentially fatal lung disease that causes high blood pressure in the lungs, making it difficult to receive enough oxygen and forcing the heart to work harder. This can lead to right heart failure or death. Symptoms of PH include shortness of breath, fatigue, and in later stages, fainting. Because the symptoms are similar to those of more common conditions, PH patients often visit multiple doctors and wait two years or more for an accurate diagnosis. Though there are a dozen treatments for PH, there is no cure.

Individuals living with PH are forced to chart a new normal for their lives. For some that means restricting activity and taking complex cocktails of medications. For others it means not being able to walk up stairs or lift their children without the risk of passing out.

‘PHight’-in For A Better Life

Despite these obstacles, the PH community is full of people who choose to “PHight” for a better life for themselves and others living with rare disease.

  • “It’s so rewarding to work on the Stanford Race Against PH every year. It’s inspiring to see the effort and enthusiasm from the PH community,” said Kristi Kerivan.
  • “I’m making purple cupcakes with PH on top and wrapping the awareness bracelets around them! I’ve been fundraising…Let’s buy a cure!” said Jennie Scott Heineman.
  • “As a patient, being active in advocacy gives me another way to fight PH besides the physical fight. We all have the right to be heard,” said Perry Mamigoninan.

On Feb. 28, please join those living with pulmonary hypertension and the approximately 7,000 other rare diseases to spread the word about the urgent need for rare disease research and treatment.

To learn more about Rare Disease Day visit

To learn more about pulmonary hypertension visit