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

I’m as mad as hell and I’m not going to take it anymore!

Author: Richard Howard/Friday, April 10, 2015/Categories: Weekly News

 

Frankly, this isn't something that I get "mad as hell" about. Perhaps I should.

 

Decisions are being made about which medicine you have access to. It's not based on science. It's not based on evidence. It's not your doctor's decision. You do have a choice. Your choice is 'take it or leave it.'

If you can afford to pay nearly $20,000USD a year for medicine, then you have more choices. 'Advocacy' and 'public policy' doesn't usually stir much anger or emotion from me. Perhaps they should. In states across America, elected officials are voting how to handle biosimilars (think generic for TNFis). We know that some TNFis work well for some people, some do not. Some only work well for a while. My point is that each TNFi is different and each biosimilar will also be different. Biosimilars, along with other types of medicines in the pipeline, is a chance for us to have lots of choices.

Choices are 'chances' for feeling better. Chances to have a better life.

Don't let your elected officials or some health insurance back room deal limit your choices. This is very real. In January, thousands of people received letters from their insurance company stating that their insurance only covered 1 of the 5 TNFi available. The patient was welcome to stay on their current TNFi and pay out of pocket for the entire amount.

Some States are deciding that after you and your doctor decide on a medicine, it's then okay for it to be switched at the pharmacy without telling you. It can be switched to a medicine that was tested for Crohns disease, but not for Spondylitis. It can be switched without telling your doctor.

A good number of people in the pharmacy retail industry think the name of a biosimilar should be the same as the original because it's easier for them that way. It's nearly impossible for researchers to know what works and what has side effects.

And don't even get me started on why 'specialty tier' copay prices were invented. How is it fair that some meds are cheaper to use than others? Patients didn't choose which disease to get or what type of medication is effective. Isn't that the point of health insurance, to spread the risks and costs? Perhaps I do have the potential to be 'madder than hell'. Are we going to sit back and take whatever is more profitable for the insurance company?

A few years ago, Spondylitis on a medical record meant that the person was excluded from being able to purchase private medical insurance. That changed because of people advocating for change.
I suspect the vast majority of politicians have never heard of Spondylitis. They certainly won't know there could be a difference between one TNFi and another.

It's time to step up! So, even if you're not mad as hell, let your representative know how you feel. Even if this doesn't affect you personally, do it for your community of spondies who need to be in charge of their choices. Join SAA in being an advocate for people living with spondylitis.

*Originally written for the Walk Your AS Off blog.

 

Spondylitis Awareness Matters – Instagram/Twitter Campaign

Spondylitis Awareness Matters – Instagram/Twitter Campaign
From WalkYourASOff

April 8, 2015

Spreading awareness for a disease helps in all sorts of ways. Ask the ‘ice bucket’ people. For Spondylitis, awareness improves lives. Everyone ‘walking their AS off’ already understands this and has their own story to share.

April is Spondylitis Awareness Month

Saturday, May 2, 2015 is World AS Day

Please join the Spondylitis awareness campaign this month 

and have a chance to win an ipad mini! 

 

In my position at SAA and as a support group leader, I’m exposed to a lot of reasons why awareness matters.

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 & antisocial.
5. People think it’s normal ‘growing pains’ when a child on the floor crying from hip pain.
                                    
6. People have spine or hip surgery, merely to have the pain return.
7. People (docs) mistakenly diagnose patients with mental illness instead of referring to a rheumatologist.
8. People (docs including chiropractors) are confused why their patients are not getting better.
9. People (radiologists) don’t notice ankylosing spondylitis on the x-ray and MRI.
10. People forget to donate to this pretty common, painful and often permanently disabling disease.
11. People are undiagnosed to the point that it’s too late for treatments to be effective in stopping 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, spouses 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, depressed.                    
17. People don’t know what can be done to feel better.

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 CDC estimates at least 2.7 million adults in the USA have axial spondyloarthritis. That’s not rare. Men and women get this. Rheumatologists diagnose and treat this disease. There is a genetic component and so there is a tendency 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.

 

Common factors used to diagnose spondylitis include:

• Onset usually under 45 years
• Pain persists for more than 3 months
• Back pain and stiffness worsen with immobility, and eases with exercise
• NSAIDS usually help

A lot of progress has been made in the 30 years the 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.

There is advocacy work being done. Visit www.spondylitis.org for more information.

 

Spondylitis Plus Fall 2014 - Featured Article

Spondylitis Plus - Featured Article Yoga & AS: A Love-Hate Relationship

Yoga & AS: A Love-Hate Relationship
 

by Richard Howard, Los Angeles Support Group Leader

Fall 2014 Issue of Spondylitis Plus magazine

 

20 years ago, I was out of medical options for my ankylosing spondylitis. It was before the biologics came out and I had life threatening consequences to the existing medicines. I needed a new plan.

 

At my bride’s prompting, I reluctantly went into Lee Lones’ 7:30pm yoga class at my gym. I went to the back corner of the already dark studio. I hated it. I loved hard, fast paced sports. I was still grieving over being told not to run or play rugby ever again.

 

Lying on the mat, I was reminded how inflexible I was with every stretch. Instead of spending 24 hours a day trying to make the disease invisible to me as well as the rest of the world, I was being forced to examine every detail of limitation. What a nightmare...But what a blessing.

 

Over the years, I’ve learned to modify any pose so that no matter how bad I feel before yoga, I’m always improved walking out. I still have reduced range of motion, but that’s not the point. Exploring the edges is the point and “spondys” have the advantage because the boundaries are easy to find.

I’m more flexible on so many levels. My practice positively influences my stress level, sleep, breath, diet, strength, attitude and relationships. Yoga has been my “weekly injection” ever since that first class and I never skip a dose.

 

I went through teacher training so that I could help modify a yoga practice for my “spondy-friends” with different physical challenges. Now, when someone with spondyloarthritis asks me a yoga question, I can offer them a free private yoga class. “Come to the support group meeting next month and I’ll give you private yoga instruction before or after the meeting. I won’t charge, just make a donation –of any amount– to the SAA.”

 

Like yoga, the SAA makes spondylitis visible. Once a month, for two hours, I’m in the room with people that “get it”. There is so much experience in the room. When someone asks a question, chances are at least four people in the room have experience with that same issue. “Who here has had severe fatigue?” Every hand went up. For a couple of hours you feel normal. You feel empowered by the tips people offer. Walking back to my car after a meeting, one person said, “I got more information about spondylitis in an hour of that meeting than in all my doctor appointments put together, and I have had a lot of doctor appointments!”

 

Our group likes to have speakers, we have had 11 speakers in the past 22 meetings, everything from rheumatologists, psychologists, eastern medicine practitioners, insurance professionals, workers comp experts, researchers, yoga instructors, etc. After a meeting, one renowned rheumatologist told me that these meetings are more valuable than a doctor’s appointment. Like yoga, knowledge and modification has been the cornerstone to my managing spondylitis.

 

In yoga terminology, the support group is a ‘Kula’ (coollah), which means, “a community you participate in with likeminded individuals.” Some people attend regularly, some sporadically when there is an interesting speaker or when they are going through a particularly tough time. Some people come once, and I think they just need to see and hear what it’s like to live with spondylitis for 5 years, 10, 20… decades. We have all ages, ethnicities, severity and duration of spondylitis. No two people are experiencing spondylitis exactly alike. But, by the heads nodding during the meetings, it’s clear we all speak the same language. This is something you can’t get anywhere else.
 

Editor's Note: Richard Howard is also the Associate Executive Director of SAA.

Shmini-Asana

A passage from my yoga journal

4/6/13: Tiffany @ BlackDog

Heard interview w/scientist studying the mind. He said "You are what you think." Recurring thoughts create pathways and become natural, unintentional way of thought. So if always have negative thoughts, then you become a negative thinker about everything, even novel situations. On the mat we move to realign so that over time our bodies are naturally aligned the way we want them. In meditation, we observe thoughts without reacting; Like watching clouds passing by. Don't try to fix the clouds into different shapes. Just notice the shape and let it pass by. By noticing the shapes and recurring patterns of the clouds, you will mull over it in a healthy way until you see possibilities to create new shapes. (Caution not to obsess & be unhealthy). Bringing thoughts to consciousness is a great motivator for change even though it’s seemingly such a subtle action. On the mat I notice physicality of my body. I become aware of how my body is physically at the moment without trying to change it. The poses are an exploration for me. The consciousness motivates change. I become aware of new possibilities off the mat.

Examples:

I observe on the mat that my head does not reach the ground in savasana, neck is not aligned in triangle, & crescent. Then I become motivated throughout the day to press my neck into alignment. I find that the pillow behind my head is not always serving me.

If I become conscious on the mat that I don't have inversion balances, then I become motivated to explore and dissect why that is. I begin to adjust my balance and posture off the mat. Standing against a wall in my office, playing with head/hand stands in the tv room and bedroom. Holding military press in the weight room. Floating legs up from down dog. Pressing ribs to thighs, etc .

Tiffany brought several twists throughout today's practice. Twists take an incredible amount of effort. They invite the creation of new mental and physical pathways because they exercise the mind as well as the body.

Today is 26th Torah portion of the year. Shmini in Leviticus involves kashruth. I'm reflecting on being midway of the spiritual year. Like a fulcrum, the perspective illuminates balance. Observe the past 1/2 of the

year. To become newly conscious of where I am now, at the 1/2 way point, and to look the other direction toward the future 1/2 of the year. Does becoming conscious of the past 1/2 year motivate any change for the next 1/2 of spiritual year? On a teeter totter, the fulcrum is consciousness at the present. The board is time, with 1/2 on each side if the fulcrum. What is on top of the board? How about the mitzvah of kashruth. Food, what better subject to weigh the spiritual with the physical? The religious with the secular. The ethical with the pragmatic. Food is so rich in its multiplicity. Sustainability, nutrition, indulgence, body image, comfort, labor, treatment of animals, treatment if earth, treatment of labor producing the food, wine, economy, cheap/subsidized/expensive, drugs, medications, starvation, gluttony, waste, and taste. Ethical decisions are difficult and often conflicting. What is the path to holiness? When is what we digest sacred, when is it profane? Consciousness subtly motivates change.

Interestingly, Bek wants the least to do with religion these days, but she’s also the holiest person I know regarding the mitzvah of kashruth.

I think twists are like balance poses - exercising the mind and body. The entire class was huffing and puffing. The experienced, the strong and even the 'bendy' people were challenged. I think twists are the great equalizer in our society.

How to explain ankylosing spondylitis (AS) to friends?

How to explain ankylosing spondylitis (AS) to friends?

As a starting place, my gut says 'don't talk about it.' Most of the time I work pretty hard at looking pretty darn normal, so it's not like others are going to bring it up. I grew up in a

house where everyone was fine at all times, even when they are not. The theory is 'If they can't do anything to help, why tell them?' it's pretty stoic. That can be pretty isolating. If I wouldn't tell my brother how I am feeling, then how do I tell my friends or even my doctor? That's literally "how" since the language tools aren't developed. Our children are great teachers. As a parent and husband I learned that I want to know what my wife and children are going through at all times, even if I can't do anything about it. So, openings up is a challenge for me that I force myself to do with my immediate family and sometimes close friends. Regarding the language, I think the spoon theory by Christine Miserandino is brilliant (it reminds me of Rick Lavoi's self esteem poker chips). 

There some people I need to tell. These are my 'team members'. It could take years before I add someone to my team. I may not even have told them yet that they are on my team. I like to keep a rheumatologist, nutritionist, clergy, psychologist, friend and yoga instructor on my team. I've let a couple of spots go empty... I'll have to work on that before my next flare. If I trust a yoga teacher, then I let them know why after 18 years of practicing yoga, I'm still the 'un-bendy Tin Man’ and there is a reason why my range of motion is so limited.

I end up saying something along the lines of "I have ankylosing spondylitis and have been in constant pain since I was 28. (I've had about 8 pain free days in the past 22 years). Some days & nights are better than others. I'm doing pretty good right now. My best times are usually between 10:30am-4:30pm. It’s an odd medical term that's means inflammation & fusing of the spine. For me, my hips, spine, shoulder, neck, intestines and eyes get inflamed. I have regular intervals of sharp nerve pain in my left leg. Over time the inflammation can fuse joints; so for me, my SI joint fused long ago and my neck is fusing. I have reduced range of motion and get fatigued. It's an old disease, mummies were found with it. It’s cause is unknown, but there are genetic markers and an environmental &/or mechanical trigger. We are looking for a cure. What I don't say out loud "a cure is probably too late for me. Life expectancy is probably reduced a bit from cardio issues or fragile bones or side effects from medications, but I fully expect to live a long and productive life"
 
Most people don't ask a lot of questions. I'm rarely looking for sympathy. My son is on my team. He usually says “sorry you’re hurting right now”, and that's golden. AS is part of my journey, it's my path. One I would rather not take or wish on anyone. But why curse the ground when you can find meaning in the steps. That reminds me of two waitresses in Working by Studs Terkel, one can't stand serving people, the other waitress makes an art of it. Same path, different interpretation. That's not the same as giving up and accepting your lot because at the same time I'm doing everything in my power to improve. I might as well enjoy the journey. It's possible to struggle miserably in yoga and yet smile throughout practice. I do want others to have an easier time; so if that means I need to talk about SpA, then I will learn to do that. 

In the end, non-spondys don't get it. I assume that when I am in the room with 150 people then someone else there probably has AS. But, if spondys have to work so hard on being healthy (posture, diet, exercise, sleep, stress) they're bound to look normal. Since no one voluntarily talks about AS, how do you possibly meet them? Who do you tell your story to? Who can you talk about it with? That's where the SAA Forums, Faces of AS and especially the education/support group comes in. People drive hours every month just to meet and talk to others with spondyloarthritis (SpA). I've had people take a three hour bus to come to a meeting. That’s a person enduring a lot of pain just sitting on a bus for a few minutes. I've had a guy from England join us while he was on a business trip. A women from Wyoming is coming next month. She can’t find a good AS doc in Wyoming, so she’s coming out here. We talk about meds, reactions to meds, fatigue, work, exercise, genetics, symptoms, insurance, diet, etc. We also talked about bed mattresses.

#spondylitis

Hope for Ankylosing Spondylitis

I splurged for 1 private yoga session. It's something I've done a couple of times before, particularly when I'm feeling physically stuck with my practice. My goals were specific: in-depth analysis of my range of motion (ROM) and an in-depth analysis of some poses to see what's causing blocks in my poses and ROM. So that I can better understand if the problems were the result of already being fused and therefore fixed/unchangeable and what to do to defer (as long as possible) my bones fusing in a misaligned manner.

Tiffany had such a different and refreshing attitude. She was giving me adjustments to make "that WILL lead to increased opening, increased range of motion, increased poses." People come to yoga with real problems, diseases, injuries, issues. But for her, the solution is always the same: fine tune the alignment for your body and in perfect confidence know that the practice will work, gradually, eventually.

18 years ago I came to yoga kicking and screaming. I didn't like it. I couldn't do it. I'd rather do 100 different things. But what brings me back onto the mat -even on really, really bad days- is the fact that no matter how bad I feel before my practice, I ALWAYS feel improved after practice. So, for the first time since my Dx 24 years ago, I actually think that I will be more flexible in the future than I am now. That's crazy talk for an AS person, right?

Anusara Problems & Founder Syndrome

The leader of Anusara has been accused of some terrible stuff.  Scoundrel behavior involving sex, pension improprieties, occult participation and drugs.  The alleged behavior was conducted as an individual, teacher and as an employer.  He has made general apologies.  Key people are leaving the community.  Teachers are doing soul searching for what they should personally do.  Reading the open letters of insiders has been very touching and surprisingly, inspirational.  Personally, yoga and Anusara in particular, has been extremely important to my health and happiness. Not a day goes by that I am not grateful for my Anusara teachers. What they taught me on the mat has physically improved my life and positively influence my growth as a person.

My vocation of non-profit management has something to say about my avocation for Anusara yoga.

Sometimes it is the founder that is the greatest threat to organizational survival.  Yes, it's ironic that the very person responsible for bringing the organization to it's height and prosperity will cause it's unwelcome and untimely demise.  

Whether or not Anusara Yoga continues as a practice depends on the leadership of Anusara.  If the leadership means John Friend, then shame on Anusara leaders and to John Friend for allowing the teachings to be so founder dependent.  

Generally speaking, an organization that has not realize it's mission and still offers a unique and valuable service that can't be performed more effectively than another, has a responsibility to ensure it's continuation.  Navigating not only survival, but excellence takes management reflection and action.  

We all know that most new organizations fail.  It's not easy to build an organization.  It's also a challenge to keep them going.  I have been in the trenches and at the helm of some very big organizational changes. 

Changes are exciting and tough.  It's taxing enough to implement changes, let alone strategize a successful outcome. 

Recommendations: 

• Keep your mission in the forefront and crystal clear for every decision in the times of great organizational stress.   
• Ask a lot of questions and do a lot of listening.  
• When taking action, stick to sound management action principles of: 1. Assess situation 2. Set measurable goals 3. Implement and measure results 4. Assess and then reset goals as necessary.
• Encourage people involved to take at least 1/2 day each week away.  My favorites: attend a religious service, play with a pet, read fiction, spend time with a loved one, get on the yoga mat, garden, cardiovascular exercise, explore music, journal writing, walking without a destination. 
• Founders and long standing top leaders that leave the organization should leave town and be silent.  This I learned from a beloved retiring Rabbi.  
• Identify all your stakeholders.  Prioritize them in concentric circles. Communicate quickly, clearly and appropriately to each separate stakeholder circle. 

There are some very good resources to understand Founder's Syndrome.
from Foundation Group
from Creating the Future
from Blue Avocado