Behind the Mirror of Self Management

I was reading a study on PubMed: Sorting Through The Evidence for the Arthritis Self Management Program and the Chronic Disease Self Management Program.

It was written in 2011 and is an analysis of previously published trials and articles about the two different self-management courses. Teresa J Brady, PhD is the contact person on the study which was done by a team of researchers.  She is presenting at the American College of Rheumatology (ACR) this year in a session that includes Kelly Young, aka RAWarrior, Dr Jeffrey Curtis and Elizabeth Riggs, RN. They'll be discussing the ways doctors can enhance their practice of medicine using patient engagement and self-management support strategies.

Through reading on the Rheumatoid Patient Foundation website I learned about the talk at the ACR and so looked to see what Teresa Brady had published. She sounds as if she is immersed in the field of self-management.

Taking a self management course is an eye opener for a chronic disease patient. Whether your coping skills are excellent or you are not so confident, you can learn more.  I took the course twice - once online and once in person. They were both effective in similar yet different ways. 

                                                 This is the book used with the online Stanford course

The online course is more convenient and is accessible no matter where you live. The other members were really supportive and helpful at all hours of the day and nigh when it was convenient. However there is no substitute for real people. The real-life course I attended is offered by The Arthritis Society in Toronto and other centers in Canada.

Social engagement is said to be a factor in living a long life. Do you think that online social engagement is as powerful as being involved with real life people? Also I have heard it said that the best way to live many years is to have a chronic condition and take very good care of it.

When I mentioned Behind the Mirror of Self Management I was thinking of the scene in The Wizard of Oz where Dorothy and the Tin Man,Cowardly Lion and the Scarecrow find that the Great and Powerful Oz is just an ordinary man.

In the case of self management the person behind the mirror is also an ordinary person. It's us.  We're the great and powerful people in self management.  No matter how good a program is we are the ones who make it work for ourselves and the others in it.

There is proof of benefits based on the results in Teresa Brady's paper. The idea that changing some of your behaviour can change your heath is not a new one. It's tried and true but when you suddenly find that you are sick it's hard to get past the psychological impact that can cause depression and anxiety. "Health distress" was a phrase that applied to me for years after diagnosis. 

Sometimes I felt that doctors were my main social contacts outside of work and home. Obviously that was a situation that needed work.

I would say that if you have never tried a self management course that it's a good idea to give one a try. Then if your doctor comes back from the ACR ready to adopt this strategy you can give him the benefit of your own insight. That would be empowering.












This year in addition to our exhibit booth, RPF Founder Kelly Young, RPF Advisory Board Member Dr. Jeffrey Curtis, and RPF Member and Registered Nurse Elizabeth Riggs, PhD will be speaking together at one of the sessions. They will present along with Theresa Brady of the Centers for Disease Control & Prevention, for a combined session titled: Enhancing Clinical Practice With Patient Engagement and Self-management Support Strategies.

Arthritis Walk 2013

For 30 years I stubbornly resisted the Arthritis Walk. With the sore feet that commonly accompany Rheumatoid Arthritis it seemed to be counter intuitive.

This year, since I'm a member of  Patient Partners In Arthritis I joined their team and embarked on fundraising. Even with a very slow start I got some contributions that were encouraging and raised over $1400, for which I thank all of my friends and relatives.

The day was beautiful - sunny and warm.  We gathered at the Evergreen Brick Works in the Don Valley on Sunday morning. It was a place in Toronto I had not seen before but always meant to.

Here's our team, ready to go. We made it to the Top Five in team fundraising in Toronto.

Before we started to walk there was a warm up led by enthusiastic dancers.

The walk went very smoothly. I did the one kilometer walk instead of 5K as most of my team mates did. Near the end there was a live brass band to give us a fun break and to cheer us on!

These are some of the walkers near the beginning of the route. At the tent on the right there was a Keep Moving dance contest.

All in all it was a very nice way to spend a morning - with friends and for a good cause. Here are some more of the sights along the way.

And a well-deserved reward at the end of the walk.

Thanks to Donald for many of the pictures.

The Most Exciting Time in the History of RA

The treatment of inflammatory arthritis has changed dramatically over the past 15 years and the talk I am blogging about is a great introduction to anyone with a new diagnosis.  

I was there at this presentation and have recommended it to many people since.  It's a good way to get a basic understanding of inflammatory disease and the treatments.  The mechanisms of action of the various treatments are well described. 

Dr Edward Keystone is a dynamic speaker and also Director of The Rebecca MacDonald Centre for Arthritis and Autoimmune Disease  - a center devoted to research into genomics, therapeutics, and outcomes in autoimmune inflammatory joint disease and osteoarthritis. It is part of  Mount Sinai Hospital in Toronto.

Dr. Keystone gave a talk in 2010 that is still relevant, even though many more drugs have been introduced in the years since then. The title of the talk was The Most Exciting Time Ever in the History of Rheumatoid Arthritis and used to be found on the site of The Arthritis Society. 

                                   And it's even better now

It's a long talk and he starts speaking 10 minutes in after the intros.  He describes what RA is and makes the scientific information about biologic drugs very understandable. It would really help someone faced with a treatment decision or a new diagnosis of inflammatory arthritis.

Here are some of the points that he made:

If the joints are swollen they will sustain damage

Aggressive early treatment is important

RA feels like a fire in the joints.   (In this post you can see I described the rheumatologist as a fireman)

RA is a medical emergency.

Tight control is the best strategy. Adjust therapy frequently to reach the target, which is now remission.

You start with methotrexate ...

                                Fun Wow Methotrexate injection time

This talk is one of my favourite resources.  Dr Keystone's enthusiasm is infectious.

I had hand surgery just before I wrote this blog post.  I needed the surgery because of early damage that happened before I was diasgnosed and had good treatment.

There were no fun pictures to see under hand surgery. (they were informative but not for everyone) This is not too bad though.

I was going to blog about wrist fusion but I am not sure how many people are interested in something that is done less often now.  At the moment I am taking the ostrich stance on it.  It's easier to stay calm that way.

I did not know ostriches really did this.


** Here is another excellent resource for a patient facing a treatment decision.  It's a blog post by Dr. 
Shashank Akerkar called Time, tide & inflammation waits for nobody...
He followed that up with another that is very informative History of Rheumatoid Arthritis that shows the pace of progress in treatment.

So, the doctors weigh in, and seem to agree on the best course of action. It worked for me - with good treatment I worked until I retired. Honestly, it was no picnic but it was a goal that meant a lot to me.