Lori-Ann here, freshly arrived home from the annual American College of Rheumatology (ACR) in Washington, D.C. and what an incredible experience it was!! As you may have seen, I attended the conference on behalf of PsA and Me - check out the social channels for a glimpse of what I got up to.
Although the conference was created for practicing Rheumatologists and healthcare professionals, there were lots of really interesting take outs for the PsA community. Decoding scientific lingo can often feel overwhelming for us patients, but it’s amazing the value that can be had from being aware of new research and thinking.
As a final wrap-up of my ACR experience, I wanted to share my thoughts from the conference, so here are the top three things I learnt at ACR:
1. Our sleep hygiene is as important as our attention to medications and physical therapy.
It wasn’t news to me to learn that, as chronic pain patients, painsomia and insomnia are quite common, but while attending a session on sleep hygiene at ACR16, I learned just how detrimental poor sleep can be. Did you know that lack of quality sleep can contribute to the following?
- Heart disease;
- Mood disorders;
- Additional fatigue;
- Alcohol abuse; and
- Decreased life expectancy.
Personally, I am a good sleeper, getting 8 to 10 hours per night. Painsomnia and insomnia due to other factors are rare for me, but I learned that we can’t know how much quality sleep we are getting just by measuring the number of hours in bed. Because of pain, I tend to move more while I am sleeping. Perhaps you do, too. These interruptions can disrupt our meaningful sleep. Meaning that even after 10 hours, I may only have gotten superficial sleep and am still at risk for the conditions listed above! This was the most alarming information I learned at ACR16. Living with PsA is hard enough. Learning that the side effects of this disease on my sleep may be damaging me even more was a bitter pill to swallow! Thus, there may be a sleep study in my near future. I’d love to know more about the quality of my sleep in light of this information and how I can maximize my sleep benefits.
2. Learn which forms of Mind Body Practices work for you.
I was excited to attend an interactive session called Yoga for Your Practice: Mind Body Practices in Rheumatic Disease. The session was run by a trained Qigong practitioner and Rheumatologist, who gave a history of a number of disciplines and guided us through exercises, encouraging the delegates present to better guide their patients in choosing a mind body practice for themselves.
What struck me the most was that not all forms of gentle exercise are good for people who have increased flexibility, like myself; Feldenkrais and Yoga are poor choices for me. I also learned it is very important for doctors and physical therapists to know if people are hypermobile, so they may properly treat them without causing injury. Bear this in mind when you are choosing the best exercise class for you!
3. Physicians have a long way to go in keeping up with patients and patient influencers.
This is disappointing. While attending a session on how the future of health care is in our smart phones, Jonathan Hausmann, MD discussed many ways in which smart watches and smart phones can be used to track health data (for example, transmitting this information to our Rheumatologist and health care providers.) There was great information and Dr. Hausmann is excited about this prospect. Unfortunately, some of the questions the audience asked Dr. Hausmann after his presentation were about the inconvenience of learning new technology. Dr. Hausmann’s take was that an informed and actively participating patient is the best patient, and I agree. I know many people living with PsA that track all their own health data to present to their physicians in office visits. Some have even been able to solve mysterious gaps in their diagnoses by doing this. It seems like there is some work to do before physicians are able to fully embrace this technology, but I hope that it will enable physicians and patients to be real partners in health care in the future.
I hope that you have found my #ACR16 journey as interesting as I have. Thanks for tuning in.