Blessed to work with Dan Reynolds on the This AS Life Live project. Here DAn interviews Dr. Rob Overbaugh a pain specialist, a vet and a person that lives with ankylosing spondylitis

AS and Asana

  

Getting flexible with SAA’s Associate Executive Director and certified yoga instructor Richard Howard

If you are trying yoga for health reasons, you are in good company. Many people I know embraced yoga because of health issues and at the encouragement of a loved one or medical professional. However, a great number, including myself, were also hesitant to begin with — skeptical of the benefit and intimidated by the physical challenge it might present. When I met with Dan Reynolds for This AS Life Live!  I learned that he had the same experience.

Chronic pain can rob you of the energy needed to try many new things, especially being tossed into a room of healthy-looking pretzel people talking about gratitude, blessings and improving the spirit. However, after summoning up the courage to take that first step, I learned that yoga helps me tremendously, so much so that after twenty years of practice, I have become a certified yoga instructor in addition to my role as Associate Executive Director at the Spondylitis Association of America (SAA). Helping others living with ankylosing spondylitis was my motivation to become an instructor.

Yoga does not have to be intimidating – here are my tips to start your own yoga journey:

Always remember to consult with your physician before starting any new exercise regimen.

1. Remember that yoga is a practice, not a competition. Don’t get hung up on how flexible or experienced others are. Yoga provides great benefits to people of all levels and abilities. If you’d like to prepare for your first few classes, then you can familiarize yourself with some common poses including:

2. Modify and use props when appropriate. Learn how to safely and effectively modify your poses to suit your experience and comfort level, so that you can adjust your practice based on how you’re feeling that day.

3. Experiment with different styles. Someone once told me, “I tried yoga with a great teacher, but it wasn't for me and didn’t help.” To me, that's like saying, “I couldn't find anything good to eat in New York.” Like cuisines, there are many different types of yoga, so it’s a matter of finding what you like best. Find the type of yoga and teaching style that serves you best at the time.  If you are not enjoying it, try a different class. Be experimental.

4. Try a group or one-on-one class. Call your studio and ask for the best class/teacher for beginners. It’s also helpful to mention any limitations you may have in advance. There are also on-line classes, but it is good to be face-to-face with an instructor who can give personalized adjustments and suggestions.

5. Know the etiquette. As I mentioned, it’s helpful to the instructor if they know your yoga experience or physical limitations. Ask the instructor where they would like you to place your mat, and if they don’t have a preference, I’d suggest placing it in the middle of the room so that you have examples of poses on all sides. If you arrive after class has started, try to quietly set up your mat without disturbing others, and avoid stepping on other people’s mats. If you need a break, go into child’s pose (balasana) until you feel ready to begin again. If you feel “done” before the class is finished, it’s perfectly acceptable to go to the final pose (savasana) and wait for the class to catch up.

6. Add layers. My favorite definition of yoga is to unite. I find connecting movement to breath and thought is enriching. Breathing through your nose, try timing your movement with your inhales and exhales. That alone can help set aside stress and allow you to focus on your health. I always take a moment to dedicate my practice to someone. In addition, I like to choose an attribute that I want to foster (i.e., courage, strength, happiness, patience, kindness). Adding these layers can actually make the practice easier while aligning the physical body with the breath and the thoughts. 

This article was written by Richard Howard, with help from the resident experts at ThisASLife.com. A social site helping the whole AS community to: Learn. Share. Inspire. Discuss.

#BestAuntEver: The Story of a Family-Centered Care and Empowerment

At the American College of Rheumatology Conference in San Francisco, I attended a session on “Empowerment through the family-centered care approach.”

  reprinted from http://www.thisaslife.com/lifestyle/best-aunt-ever

At the American College of Rheumatology Conference in San Francisco, I attended a session on “Empowerment through the family-centered care approach.” I listened to the various programs offered by a children’s hospital and saw a number of photos of doctors at events in the park with their patients and families. But really, the best teacher for me on this topic was the aunt of a girl named Amanda*.

Amanda’s aunt saw her niece was acting different and in pain, but her parents made excuses why she was not active. They didn’t want to believe their daughter was not well, so they often told themselves she was just lethargic or simply unmotivated.

I’m a dad. I get it... with every fiber, I want my children to be healthy. My children have less than a 20% chance of having AS. However, the odds of my having AS was much less, so that’s not comforting for long. It’s always in the back of my mind. Yet, when my child has an ache, I look for a mechanical cause. I console myself that they are in pain because of an athletic game or strenuous activity.

Amanda’s aunt is a hero. She’s a detective. She epitomizes empowerment. She listened to Amanda and began asking questions. She searched symptoms on ‘Doctor Google’ and foundwww.spondylitis.org . She even called the Spondylitis Association of America (SAA) 1-800 phone line and we spoke on the phone. She was extremely frustrated with the situation and couldn’t watch Amanda – at the prime of her life – living in such pain. She took Amanda to a rheumatologist from SAA’s directory of spondylitis specialists – and later drove 40 minutes to come to an educational/support group to meet others with spondylitis and asked us a lot of questions. After Amanda was diagnosed, the family started coming to meetings with Amanda. At one meeting, we had Amanda’s mother, father, both brothers, uncle and, of course, her aunt. They didn’t participate much other than to say, “We are here for Amanda, whatever she is going through we are here to support her and learn.” They even brought homemade refreshments and stayed after to help clean up. A couple years after that first phone call from Amanda’s aunt, Amanda still comes to meetings when she can get off of work. She drives in alone, but I’m sure when she gets home, she’s understood and supported by her family in almost every way possible. Beyond this, she has the tools to manage her AS and her life.

And to think, it all started because Amanda had a strong advocate in her family. #BestAuntEver

*True story (names have been changed)

This article was written by Richard Howard, with help from the resident experts at ThisASLife.com. A social site helping the whole AS community to: Learn. Share. Inspire. Discuss.

My Experience at the SPARTAN Conference

My Experience at the SPARTAN Conference

By Richard Howard, MBA

 


Richard Howard and our 2014 award recipient, Pamela Weiss, MD.

A few weeks ago I had the opportunity to attend the two-day long SPARTAN conference in Denver. Comprised of spondylitis clinicians and researchers, SPARTAN (the Spondyloarthritis Research and Treatment Network) meets each year to discuss new research and to hear abstract presentations from Fellows and SPARTAN members.

 
While at the conference, I heard first hand from numerous researchers how SAA’s funding is advancing spondylitis research. Just this past year, in fact, SAA awarded three $20,000 grants to early career researchers focusing on spondylitis - both to recognize their work, as well as to encourage and enable them to continue their research. The award - the SAA/Jane Bruckel Early Career Investigator Award in Axial Spondyloarthritis - started several years ago, and as of now has been awarded to seven promising early career researchers.  I’ve met them all and they are brilliant.

My favorite moment of the conference would in fact be a brief interaction in a quiet corridor with one of our past awardees. 
 

The incredible, greatly respected researcher in spondylitis was walking quickly out of the hall where she had just presented her latest genetic research on spondylitis. We exchanged greetings as we hurried onward and before we parted ways she said, “I’m very grateful for the SAA. You guys got me started in spondylitis all those years ago.” Our encouragement and nudge toward spondylitis had certainly paid off - big.



Drs. Michael Weisman and John Reveille at a past SPARTAN meeting.



 I also had lunch with a group of young researchers from around the country who were anxiously getting ready to present their work to a room of established researchers. One of them may one day be nominated to win our award. I learned that most of these gifted doctors and researchers hadn’t really decided what to focus on in their careers. I grabbed the opportunity to let them know why work in spondylitis is so critical for so many people. The reality is that spondylitis is woefully underfunded and under researched, and since it’s not well known, young researchers have to learn about the disease and its impact.

As people living with spondylitis, we have questions and need answers. The pace of progress is literally painfully slow for people with spondylitis. However, in my lifetime, I’ve seen ineffective and hazardous “treatments” routinely prescribed be disproven, seen things I know - in my gut - to be helpful, confirmed, and new treatments discovered. SPARTAN also came into existence in my lifetime, with SAA organizing its first meeting in 2002, and carrying the group under its fiscal umbrella for 11 years thereafter.

 
 

We are at a very exciting point in research. The costs to do genetic analysis - not just on human genetic codes but also on our microbiome system - is coming down. This is enabling researchers to gather and analyze greater amounts of data to better study questions like: why do so many people get spondylitis; why do some people’s disease progress so quickly and painfully; and most importantly, what can be done to prevent and interrupt the disease.

I’m grateful for the work that has already been done and hopeful for the future.

 

 

We Count Things That Are Important
Originally posted at Walk Your AS Off

We Count Things That Are Important

May 29, 2015

Did you count your steps today? Are you more mindful of your steps now that you have been counting them?

This is weird, but I count people in a room. It’s a habit I was taught. I started working with kids when I was fourteen. As a camp counselor, youth groups counselor, teacher and as a director of informal education and camps, when you’re loading the bus coming back from a beach trip, you better know that you have everyone. When you’re working with teens on a camping trip, you better not be missing two at any time. I’m also pretty good at counting large rooms quickly.

Last time I spoke in front of a room with a thousand people, I did some quick math.
Odds are that at around 80 people in the room are HLA-B27 positive. Probably eight of them have AS. Among the 960 others, two probably have AS. So, at least 10 people in the room had axial spondyloarthritis (axSpA). If the people in the room had an average of 150 friends, then the room was friends to 1,500 people with ax-SpA and loosely connected to three times that.

There are around 41 genes, in addition to HLA-B27, that are associated with spondylitis. We thought a cure for AS was around the corner when HLA-B27 was found to have such a high association with the people that have the disease. I don’t believe any rheumatic disease has such close association to a specific gene. That was an exciting time. Back when docs waited for irreversible damage to be visible on xrays, it could take nearly 10 years – or longer- for people to be diagnosed with AS.

When kids had pain, they were told it’s growing pains. As we now understand, some people with non-radiographic spondyloarthritis (nr-axSpA) have all the pain and never fuse. Those people would be misdiagnosed with a long host of diseases from Fibromyalgia to psychological disabilities; some of us had unnecessary surgeries. HLA-B27 hasn’t given us a cure (yet), but it can and has reduced the time it takes to be diagnosed.

The close association of HLA-B27 with AS often means the more HLA-B27 there is in a population, then the more people develop AS. If you could wipe HLA-B27 off the earth, would you? Should you? I understand it’s a tempting thought.

Clinicians and researchers suspect that people positive with HLA-B27 do better against viruses than those that are negative. That may include AIDS. I understand that this class of genes (HLA) are responsible for detecting foreign substances and triggering the immune system. Drug molecules, bacteria, viruses, tumor cells and immunity. It’s apparently used as the basis for organ transplant rejection. Are we here today, because an ancestor with a gene – that made us susceptible to spondylitis – survived an epidemic? The more we know about genes and diseases, the sooner we can get personalized medicine. We will stop asking doctors “What are the odds of…?” and start asking “What will happen to me?”

Not only do researchers come to SAA looking for participants to understand, treat and cure spondylitis, researchers also come to SAA looking for people that are HLA-B27 positive for other conditions.

If you want to advance research, please join SAA. Your information will be kept confidential, but we will let you know of research opportunities and of the research results at

www.spondylitis.org

 

To learn more about the benefits of becoming an SAA member, please visit 

http://store.spondylitis.org/productlist_sm.aspx?department=1

Why Walk?

Why Walk?
From WalkYourASOff

May 12, 2015

Why walk?
Walking can be really tough. There was a time when my AS felt horrible after walking, even high impact activity such as running felt better. When you have a spondylitis disease, any and all activity feels completely out of the question at times. There are days when I force myself to do exercise and I’m still a ball of pain. Flares can be very stubborn.

If it feels so bad to move, why do it?

Because it feels worse not to. Every time I’ve given myself a break from exercise, it’s made me feel worse and flares last longer.

For many of us, there will be days in May that we will not want to walk. We need to listen to our bodies. If you are anything like me, then I’d highly suggest doing some activity. On the really tough days, deep breathing and laying flat on the floor counts. On other days, do what you can. For WYASO, use a conversion table to convert the activity to steps. Btw, bowling on the Wii is 61 steps/minute.

‘Dr. Google’ will give you a thousand results of the benefits of exercise. Refine your search to spondylitis and exercise and you will see peer reviewed, evidence based studies specifically linking exercise with better outcomes for people with spondylitis. For those of you with osteoarthritis, it helps that too.

Spondylitis treatment has two major components: medication to control inflammation and exercise to maintain mobility, strength and function of the joints involved. Exercise is something to discuss regularly with your doctor.

Exercise is Essential is the title of Chapter 5 of SAA’s Straight Talk On Spondylitis book.

“Exercise is an integral part of any spondylitis program… Participating in sports and recreational activities is part of the management of spondylitis. A proper level of fitness and activity helps decrease pain and stiffness.

Activity also nourishes bones and consequently helps combat osteoporosis.” This book is designed to provide information necessary to manage spondylitis and a good chunk of it details exercises. There is a step-by-step guide and a handy poster.

If you’re a goal oriented person, set your intention by creating a physical ‘wish list’. Perhaps you want a healthy cardiovascular system, increased strength, improved daily functioning, increased resilience, reduced fatigue, reduced depression, improved posture, improved flexibility, to have fun with movement, improved confidence and self image, etc.

For me, I’m concerned with increased risk of heart issues with long term inflammation, so cardio is important. I’m also concerned about susceptibility to fractures when I age, so maintaining balance skills is important. Function and quality of life is important, so everyday strength and range of motion is important. I cycle, lift light weights and practice yoga. I also find being a part of a proactive, informed and supportive community to be beneficial. So, WYASO is important.

If you still need a reason to walk then walk because you can. Make it a physical celebration of what you can do. Spondylitis affects people differently. Some people in our community are not able to walk in May. If you can, walk and add a prayer for those that can’t.

SAA has additional resources on exercise:

• Physical Therapist and fellow spondy, Sturdy McKee provided a wonderful overview of physical therapy for spondylitis (free) http://www.spondylitis.org/press/news/630-la-seminar-video.aspx
• SAA’s exercise DVD is another excellent resource for exercises specifically for people living with spondylitis (fee) http://store.spondylitis.org/productlist.aspx?department=37
• SAA’s brochure The Role of Exercise in Spondyloarthritis (free) http://store.spondylitis.org/productlist.aspx?department=3