Exercise and Patient Engagement

Of course I plan to start exercising soon.  Here's my exercise bike almost ready to go. I'll use the pylons to keep people out of my way.

                                                                A McKinnon
Given the frequency that exercise and physical activity is recommended it should be heralded as the new wonder drug. In fact it may actually be running ahead of patient engagement in the wonder drug category.

So imagine what an engaged patient who exercises can do!

                           a longer than usual walk today             A.McKinnon

Prescription For Exercise

Last week in the #hcldr tweetchat participants received this prescription for health from Dr Tony Leachon. This is all you need to do to be healthy and live longer.

Thanks to Dr Leachon

From Dr Leachon's tweets I can see he is truly committed to changing viewpoints on disease prevention from the top down. Do you think that when it's a prescription we pay more attention?

Just kidding about the bike but I do exercise. There is nothing wrong with my core so I try to strengthen it to gain muscle and improve my balance. I do a modified form of Pilates while taking care not to stress my back because of worry about osteoporosis. This article by Sherri Betz about Modifying Pilates For People With Osteoporosis works as a guideline for me.  I worry about it because of my family history of back problems.

                                My back mascot - Bone Buddy  A.McKinnon

Kevin Leonard: Patient Activist Pioneer

I heard last week that Kevin Leonard died on July 15. He will be missed, even by people he never met.

In March 2006 I heard about Kevin Leonard and his website patientdestiny.com. I was very excited by his viewpoint as written about in the media and also as laid out in detail in his book called "A Prescription For Patience, A Guide To Improving Our Health Care System" published in 2005. 

He was the first patient I heard who took the role of a "change agent." I bought his book and was inspired enough to keep it in my closest book shelf for the past 7 years.

The post it notes I put in to mark significant ideas are still there. One is on the page where he discusses the influence of the consumer/patient when they do not agree with their doctor, or when they wish to use a different hospital and how it could be improved.

The next passage I marked was about individual patient and health system benefits of electronic patient/health system records and the effect of these accessible records on decision support.  With all of your own records it is much easier to interact with the health system.

The final passage I marked was titled "Prescription Four - Begin the public debate about the specific issues relating to healthcare services." He laid out the issues to encourage this debate under four headings: strategic, tactical, operational and ongoing.

I also found a Toronto Star clipping in the book from 2007 headlined "Doctors out of the techno loop" which shows Canada in a 4 way tie for 11th place (Conference Board of Canada) mainly due to technological backwardness.

Shirley Williams from Social Media Pearls wrote a post called "Rise of the Patient Tribute: Kevin Leonard on Patient Involvement and Destiny". She wrote a tribute, as did Mike Martineau on his eHealth Musings blog.

Chronic Pain Can Lead To Depression/Anxiety.

There was an article in my inbox today with this title "Patients with chronic foot and ankle pain found more depressed, anxious than healthy patients"

Are you kidding me? That is so unsurprising. Chronic pain in any part of the body makes people more depressed and anxious.

In the article they mention rating scales that I am not familiar with: The Dysfunctional Attitude Scale (DAS) and the Hospital Anxiety and Depression scale (HAD). Years of pain may help to strengthen your dysfunctional attitude. Too bad it doesn't help you to get anywhere.

It makes me think of the pain scales often seen in hospitals and on surveys. 

This plain vanilla pain scale seems to cover most people's pain.

This one that I saw from @carvicab has a lot more of the flavour of pain 

                                                       HyperboleandaHalf.blogspot.ca

Catastrophizing anyone? 

Having a dysfunctional attitude and catastrophic pain scale ratings is not a good way to get better treatment.  In seeking treatment for pain it seems that some doctors withhold it on principal, and others offer it so that you will go away. Pain pills are so often not the answer but it's a complex area.

For an innovative point of view about a scale for patient-identified outcomes see Nick Dawson's blog. It has a very constructive viewpoint.

Part 6. Immune System Gone Wild. Dr Miriam Grushka and Dr Lisa Prokopich

Dr Miriam Grushka, who is an Oral Medicine and Orofacial pain specialist, has been a long time supporter of the Sjogren's Society of Canada. Her topic was Taste and Smell In Sjogren's Syndrome.

I learned that the loss of taste that some experience with Sjogren's affects your retronasal sense of smell also. There is not much research in this area.  Yeast infections cause changes to the tongue as well as the mouth. When this infection is treated successfully, even if your tastebuds are gone they are likely to return.

Dr Grushka is also the go-to expert for burning mouth syndrome which sometimes occurs in Sjogren's.


Dr Lisa Prokopich,OD, M.Sc. spoke about "Artificial Tear Products – How To Choose?" She is Head of the Ocular Health Clinic at the University of Waterloo.

Dry eye can be episodic or chronic, and the tear supplement composition makes a difference in effectiveness. It is not really accurate to call them tears; they are really lubricants. They can help to heal the ocular surface. All are approved as over the counter (OTC) products. This is not based on clinical efficacy.

If you use artificial tears more the four times a day preservatives can be a problem. The most common one is BAK (benzalkinium chloride) and sensitivities to it are common. Some newer preservatives are less toxic.

I learned a  lot about tears, but am still not positive which is the best for me. I hear it's best not to mix brands. Here are some other comments that may be helpful.

Cellulose polymers as in Refresh and Theratears are beneficial.
Systane Ultra does help to heal your cornea. 
Systane Balance is good for meibomian gland dysfunction.

                                                                  Barbie's eye
Ointment gives more comfort than it does healing. The brands available contain mineral oil and petrolatum and are helpful to use at night.

Tears are hypertonic, a hypotonic tear is preferred. Hypotonic solutions have low osmolarity -Theratears is lowest, Hyptears, Refresh Optiva and Optive Advanced are also low. Hypertonic solutions are not for dry eyes, they can make it worse. With dry eyes we are better off with a hypotonic solution like Theratears.

She also gave us some web resources to use.

Sjogren's Society

The Ocular Surface (now owned by Elsevier- only abstracts  free)

Eye Tube OD

Dry Eye Zone  Interesting site

Links to past Sjogren’s posts:

Part 6. Immune System Gone Wild. Dr MiriamGrushka and Dr Lisa Prokopich

Part 5 Immune System Gone Wild Dr Susan Abbey 

Part 4. Immune System Gone Wild. Dr Carl Laskin and Dr Izchak Barzilay 

Part 3 Immune System Gone Wild: SjogrensNational Conference 2013 Dr Bruce Jackson 

Part 2 Immune System Gone Wild. Sjogren's National Conference Dr.Papas

Part 1 Immune System Gone Wild Sjogren's National Conference 2013, Dr. Arthur Bookman 

Sjogren's makes Life More Complicated

2012 National Patient Conference

Sjogren's Products

Part 5 Immune System Gone Wild: Sjogrens National Conference Dr Susan Abbey

Dr Susan Abbey is a psychiatrist at the University of Toronto who has a particular interest in the emotional aspects of physical illness, hi-technology medical interventions, and the physical and emotional impact of stress. She suggested we decide what affects us most and start from there when we try to make changes.

                         Dr Abbey during the round table discussion

She began her talk mentioning the positive effects and benefits of mindfulness or being "in the moment." That lesson was so significant to me because I had just broken a tooth five minutes before she began to speak and was so upset that I was debating going home. Instead I gave more thought to the present and remembered how much I had been looking forward to the conference.  The moment I was in was good and the problem could wait.

                             This fish has a broken tooth too.

Here is a link to a good resource about mindfulness and below is a quote from the page. 

"The term mindfullness refers to a quality of awareness that includes the ability to pay attention in a particular way on purpose, in the present moment, and non-judgementally. Mindfullness includes the capacity for lowering one's own reactivity to challenging experiences; the ability to notice, observe and experience bodily sensations, thoughts and feelings even though they may be unpleasant; acting with awareness and attention (not being on autopilot); focusing on experience, not on the labels or judgments applied to them". -- M. Krasner et al. ,2009"

Dr. Abbey pointed out to us that there is a difference between Health Status and Quality of Life (QoL). We measure QoL to determine functional capacity and well-being and monitor the changes in them. That helps us to choose and evaluate treatment options. Health status is based more on physical signs and symptoms. There are no studies on the quality of care in Sjogren's to this point and it is a very intrusive illness, as we also heard from Dr. Bookman. You may have to substitute other experiences or passions to replace what you lose to the illness.

She also pointed out that chronic illness takes a toll on the brain. Some effects of immune system disorders are depression, anxiety and brain fog. These are caused by chemicals and modulators.  A sub group of patients do worse because of genetics and immune molecules. 

Mood and pain drugs for Sjogren's cause a lot of trouble. It takes trial and error to get them right.  Much of this is biologically related, some is genetic.  In depression, treatment works for 50% to 60% of people, but doctors can't yet judge which medication will be best for specific people.

She also stressed the importance of Omega 3's (at least 1000 mg)  because we need the EPA, and also Vitamin D (she suggested 2000iu).

Omega 3's ready to go

The way the brain processes events and illness is affected by brain development and experiences in early life. Support in daily life is important. 


Better treatment often equals better function. It's a question of quantity vs quality.  When you find something fulfilling within the constraints of illness turn up the volume on the good stuff. 

Resources from Dr Abbey:

UCLA Mindful Awareness Research Center

Free meditation podcasts  

Canadian Mental Health Organization :

The Relationship between Mental Health, Mental Illness and Chronic Physical Conditions

Past Sjogren's Posts

Part 4. Immune System Gone Wild. Dr Carl Laskin and Dr Izchak Barzilay

Part 3 of Sjogren's Conference. Dr Bruce Jackson

Part 2 Immune System Gone Wild. Sjogren's National Conference Dr. Athena Papas

Part 1 Immune System Gone Wild Sjogren's National Conference. Dr Arthur Bookman

2012 National Patient Conference

Sjogren's makes Life More Complicated

Sjogren's Products