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

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

Dr Carl Laskin was kind enough to fill in for a speaker who had to cancel because of family emergency.  He is a reproductive endocrinologist, a wombatologist as he so colourfully described himself, and the head of the Lifequest Centre for Reproductive Medicine. He told us that autoimmune disease is not often a big problem in pregnancy.

The goal is to identify the effect of the underlying disease on pregnancy and pre-plan the pregnancy based on medications and the current disease activity as well as social situation (how you would be able to manage).  Autoimmune is the gift that keeps on taking as we know.

He felt that  you could conceive and carry a child while taking anti-TNF drugs but definitely not on methotrexate. We learned that ObGyns are on the alert for Ro and La. Sick Children's Hospital has a program where an ultrasound of the electrical systems of a baby's heart can be done at between 20 and 32 weeks. Pregnancy is seen less often with Sjogren's Syndrome because the majority of patients are post menopausal.

Next we heard from Dr Izchak Barzilay who is the Head of the Division of Prosthodontics and Restorative Dentistry at the University of Toronto.  He told us that with Sjogren's Syndrome we could face problems with dental adhesives and dentures in general because you need saliva to be comfortable with dentures. With denture adhesive you often lose tissue when you remove the denture.

An example only

He gave us background on shapes and sizes of implants and told us that there is a 95% success rate in 10 years.  This was seconded by Dr Papas who has a 97% success rate in 200 patients. The implant must be "kind" to soft tissue. Titanium is reliable, and you can count on it to work. The key to successful implants is healthy bone to support them and even grafted bone can be used.

                                   implants    dentistry.utoronto.ca

Other Sjogren's posts:
Part 3 of Sjogren's Conference. Dr Carl Laskin and Dr Itzchak Barzilay 

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

Part1 Immune System Gone Wild Sjogren's National Conference 2013,Dr. Arthur Bookman 

2012 National Patient Conference

Sjogren's makes Life More Complicated

Sjogren's Products

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

Dr Bruce Jackson is an ophthalmologist at the University of Ottawa Eye Institute whose topic was  "Dry Eye-Tear Dysfunction: Are We Making Any Progress in Diagnosis and Treatment?"  He feels that ophthalmologists should take a greater role in treatment and diagnosis in patients suspected of having Sjogren's Syndrome.

We learned that the meibomian glands are a major cause of tear abnormalities and that blepharitis and rosacea are often seen in dry eye patients.

                             meibomian glands. elsevier.pt

Dr Jackson showed us the treatment protocols for dry eye as the severity increases.
To treat mild dry eye:

1. Lid hygiene, warm compress (15 minutes)
2. Lifestyle coaching (systemic medication management, stop smoking, alter computer use)
3. Environmental modification(e.g.humidifiers)
4. Allergy Control
5. Artificial tear lubricants

All of the above daily management tools continue to help even if the severity increases. 

The next steps to take in addition, if the above are not helping enough:   

1. Nutritional support (essential fatty acids e.g.Omega 3)
2. Use preservative-free lubricants (drops,gels and  ointments)
3. Topical antibiotic (short term only)
4. Cyclosporine A drops (Restasis)
5. Topical steroids (short term only)
6. Systemic tetracycline
7. Punctal plugs
8. Moisture retaining eye wear

Most of the steps above require treatment by an eye care professional yet it's good to know the possibilities you may be presented with. Dr Jackson suggested a combination of fish oils and flaxseed oil for the Omega 3 supplementation.

                                          Moisture retaining glasses dryeyeshop.com

And finally for severe dry eye, further steps

1. Punctal plugs /cautery
2. Secretagogues
3. Autologous Serum Tears
4. Surgery (tarsorrhaphy)
5. Scleral contact lenses

*It's not always the preservative in artificial tears that can irritate the eyes. Sometimes it's the buffer (borate vs lactate)

Inflammation influences the quality and quantity of the tears we produce.

                        dry as a desert freevintagedigistamp.blogspot

Loss of barrier function causes the tears' meniscus to decrease and dessicate.
It is possible to develop neuropathy of the eye even with normal tear function.
Fast food may be influencing an increase in dry eye disease.

DEWS (International Dry Eye Workshop) definition of Dry Eye Disease: Dry eye is a multifactorial disease of the tears and ocular surface that results in symptoms of discomfort, visual disturbance, and tear film instability with potential damage to the ocular surface. It is accompanied by increased osmolarity of the tear film and inflammation of the ocular surface.¹
It is accompanied by increased osmolarity (concentration) of the tear film and inflammation of the ocular surface.
1."Definition and Classification of Dry Eye. Report of the Diagnosis and Classification Subcommittee of the Dry Eye Workshop (DEWS)." The Ocular Surface 5(2): 75-92, 2007.

Dr Jackson also discussed new treatments in the pipeline such as Rejena, Cyclokat, CF101 Oral, SAR 1118, Rebamipide  and the value of autologous serum tears (terrific treatment)

Not connected to Conference but Sjogren's Related:
Here's a lesson that I found while checking the terminology for this post: 11th Annual Dry Eye Report. Recalibrate Dry Eye Management.  It is clear and well illustrated. I liked seeing the way staining of the eye looks to our eye care professionals.

                                 clspectrum.com

Other Sjogren's posts:

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

Part1 Immune System Gone Wild Sjogren's National Conference 2013,Dr. Arthur Bookman 

2012 National Patient Conference

Sjogren's makes Life More Complicated

Sjogren's Products

Information. Shared and Not Shared

There's a reason I see that darn Phil Mickelson ad for Enbrel everywhere I go when I'm browsing.  That one and Lumosity are dogging my virtual footsteps at website after website.  I know where they come from of course.  Over the years I have dropped many fragments of information about myself on electronic media. Some were freely given and some were not. 

                                         freakingnews.com
And all of those bits of information have made me a target for those who advertise and profile.  It's obvious from my browsing habits that I have an interest in diseases where high priced biologics are used so that accounts for Phil and the Enbrel. And advertisers are also assuming I may be starting to worry about my cognitive abilities as well. 

In the middle of a tweetchat recently I suddenly became more conscious of this situation and interpreted the feeling by thinking of Hansel and Gretel dropping breadcrumbs going through the woods. When I said this others in the chat agreed, with J. Shore saying he feels like that "Only on days that end in y".

We're all out there leaving information where it can easily be found by others and making our individual trails. Dr. Ann Becker-Schutte, a psychologist from Kansas City, gave me a different perspective in the #EOL chat when she said "But you are helping more people than yourselves find the way home."

That is a motivating factor for many people posting in online blogs and commenting about their experiences.  They are trying to use their experiences to inform and help others who have an interest in similar topics. People faced with a new health experience in particular are likely to find the experiences of others to be helpful.

For years I have been reading health related blogs written by both patients and a variety of health care professionals. They have been touching, informative, educational and all have contributed to making me healthier. I think people interested in health form one of the strongest social media communities.  When you look at the #rheum, #hcsm and #hcsmca on Twitter you find links to more resources than you will have time to digest.

So pick your favourites and dive in.

This used to be a free game that made me question my cognitive ability. I never Beat the Chimp but it's good for your brain to try some of these games. 

New Knuckles and Straight Fingers: Metacarpal Phalangeal Joint Replacement Surgery.

My friend gave me before and shortly after photos of her friend Debbie Morris who just had her knuckles replaced in an operation called a metacarpal phalangeal joint replacement.  Debbie agreed to let me use them here so that others could see the successful results she has had. 

                                                            Before surgery
Here is her story:

"I decided to go ahead with the surgery, as my hand had become quite deformed and the pain was constant. The surgery took two and a half hours. My knuckles were replaced with little silicone joints, that are slotted into the finger joints. 

                                      After surgery

The outrigger (below) although it looks like a hindrance, is amazing. Within the week of using it, the movement in my fingers has improved. I am already doing finger exercises! The best thing of all is hardly any pain, other than normal post op, bruises etc. I am having my stitches out next Tuesday and then exercises will begin to reduce the scar as much as possible, as scarring can restrict movement.

                                After surgery. No splint

Here is a picture of outrigger, it's a splint in a sense with metal bits on connected to elastic. It helps prevent them drifting until the muscles are built up in your hands again, as it's the muscles that keep the implants in place. It also allows you to exercise the hand. After 3 months of physio and exercising regularly, I expect to see a massive improvement.

                                                        Hand With Outrigger

I have been told movement won't be as good as in a normal hand and it's questionable if I will be able to make a full fist, but I’m keeping an open mind, anything’s possible!  Recovery is all about listening and doing everything the physios say, they are the experts. For me I think it's the best decision I could have made."

Debbie said she is glad that we think photos are useful. She feels very proud of herself right now.

Gillian says "It gives us some hope for the future when you see results like that."  (I agree with that completely.)

Debbie said she will send another picture when she gets the stitches out so we will be able to see the whole story.
Congratulations Debbie!!