Patient Partners In Arthritis

There's an ongoing discussion among patients about the education of doctors.  Considering how many people see doctors for musculoskeletal (MSK) problems, and how frequently these visits occur, I think it gets relatively little time in medical school.  Certainly when it comes to awareness of Inflammatory Arthritis there's a long way to go to raise the knowledge level of everyone out there.

To help improve awareness of various types of arthritis among medical professionals there has been a  nonprofit program called Patient Partners in Arthritis used in Canada for the last 17 years.

The patients who volunteer must have a confirmed diagnosis of arthritis and feel comfortable talking about their disease and interacting with all levels of health care providers. They complete an in-depth training program that prepares them to demonstrate joint examinations and provide a real life medical history that illustrates the problems and issues that arise with both osteoarthritis and inflammatory arthritis.  That covers a lot of ground.

                         Patient Partner member ready to participate

Everyone knows the value of a good story. You see stories everywhere from commercials to mystery novels. They add interest to dry facts (and bones). 

                                            Bones of the hand (Toronto Western Hospital)

I joined Patient Partners and I think that right now I am the newest member.  I have learned a huge amount from the training and from the rheumatologists who are present and contribute to some of the Patient Partner sessions.

Currently the program is used in 10 Canadian universities as part of the MSK education of medical students, residents & other health care providers like nurses, occupational therapists and physiotherapists.

"The program is based on the principle that arthritis is a chronic condition and people living with it are often the most knowledgeable about many aspects of the disease." (from The Arthritis Society website)

It has helped me to gain confidence about my knowledge of anatomy and most days I participate I learn new facts.

The Patient Partners training is led by the same person to provide consistency and reviews are done regularly to maintain standardization. 

In a typical session Students learn joint examination techniques and are able to see and feel the joints of patients with a variety of MSK problems. The students realize the impact of arthritis better with a personal story along with the feel and look of damaged joints and restricted movement.  Feedback from students indicate that it is a better learning tool than pictures or a didactic lecture.

The last time I saw my orthopedic surgeon, the Fellow who was working with him had encountered the program in the Maritimes several years previously when he was a student . He remembered the session well.
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One way used to demonstrate the feel of an inflamed joint is through the use of chocolate covered almonds and grapes.  No surprise to my fellow patients to hear that it's the squishy grape that feels like an inflamed joint.

Grapes from ThirdAge.com                

This is a successful 'hands on' Canadian program which I wanted to spotlight.

RA and the Bone Surprise - Osteoporosis

When I was diagnosed with RA I knew that it was possible to have destruction and damage to my joints.  And I could tell by looking at my hands and my feet, and by the way that they felt, exactly where the damage was likely to be.

                                                                      BrookburnPrimary.net

But the problems are always in what you don't know and so don't ask.

This is what I did not know: While my joints were being damaged I was also losing bone mass. "This loss of bone mineral density in rheumatoid arthritis occurs early in the disease and this is the time to start treating for osteoporosis risk by preventing bone loss".


So the RA treatment I was getting was aimed at putting out the house fire (inflammation) while there were termites in the beams (loss of bone mass).

That's my rheumatologist there in the front seat of the fire truck concentrating on putting out the house fire(inflammation).  None of my 3 rheumatologists ever mentioned osteoporosis as something to worry about.  I had 20 years of treatment with  never a word (that sunk in) about the dangers of osteoporosis,thinning bones and fragility fractures.

Once I found out that my inactivity and inflammation had actually made my bones hit the red line for osteoporosis my first reaction was anger.  Then I kicked myself for not using common sense and figuring this out.  Next I got a referral to the Osteoporosis Clinic at Women's College Hospital in Toronto.  They have an excellent multidisciplinary program where patients meet with a doctor, physiotherapist, dietician, pharmacist and an occupational therapist.  Armed with all of that information I was ready to be a late starter and work on my bones.

I started with simple muscle tightening which I describe in my blog post here.

Now I do a modified form of Pilates. It is customized to accommodate damage to my hands and feet and a fragile spine.  With osteoporosis you should avoid flexion (bending forward) as much as possible and do a lot of extension exercises.

I do it at home because I am afraid that I will be the Tin Man in the gym.  Exercising in a group may be more fun and if any readers in Toronto want to get together for Pilates they could join me, but the big plus to exercising at home is that all of the time you have available is used for exercise, not in getting from one place to another, including parking and changing.

Here is a link to my favorite osteoporosis site by Dr Susan Ott. You can calculate your own fracture risk using the calculator on the site. http://courses.washington.edu/bonephys/  She does a great job in keeping it updated and ad-free.

The next post will deal with what to do to improve your risks and why exercise is helpful. 

Ideas to Spare Your Hand Joints - You'll Need Them For a Long Time

Here are a few things I use to save the joints of my hands and fingers.    I also have a collection of things that might help some day and others items that are useless and rather silly.

I collect water bottles that are easy to hold and easy to pick up without looking while I am driving. This was one of my best finds though ecologically bad. Here I am in Canada and we are shipping this water in from Ireland. It amazes me that any company would find that economically feasible. But it's good for me - all of those indentations give me a good grip. And also I am far less likely to drop it. Now if only the lids didn't keep rolling under the car seats...

I have actually worn one of these out since I first got diagnosed. I almost feel that I can open anything with it. For pop bottles, pickles (lie -I never open pickles) fruit juice and everything else I use this as an opener. This jar opener even works to pry up the vacuum sealed lids on mason jars of soup.

This is just a plastic sleeve that I have heard called a nobby.  It makes setting the dryer a lot easier.
Sometimes you don't realize how much strain you are putting on your joints until you make it easier.  These can be used on any knob or dial.  They are a little stretchy but you might need help to put them on the knob the first time.

Turning keys in a regular lock can be tough when your hands are sore and weak. Opening my front door has always been a problem for me.  I used to use the metal split ring on my keyring but it is MUCH easier using this keyturner.  I even bought another to use for the washroom door at my office.

If you would like to see more tips Auntie Stress has been posting 1 per day for the last 355 days.  What a lot of work that has been Marianna!  http://rheumfuloftips.wordpress.com/