Tuesday, August 30, 2016

Guestpost: Pregnancy & Parenting with Arthritis Survey Results

In the fall of last year, Laurie Proulx from the Canadian Arthritis Patient Alliance (CAPA) wrote a guest post for The Seated View about their new project on pregnancy and parenting with arthritis, of which she is the lead. She introduced the survey and asked my readers to help provide information on these topics. Today, Laurie is back with the result of the survey. Take it away, Laurie!

 Laurie with her children

I have lived with Rheumatoid Arthritis since I was 14 years old so I’m a veteran of this disease at the age of 39. It greatly affected my life in so many ways – from participating in school/university, socializing and even deterred me from a career in piano/music since the RA affected my hands so significantly. I soon learned to advocate for myself as a patient to ensure I received the best care. I quickly learned that if I didn’t manage the disease, it would manage me. Through this personal advocacy, I came across the Arthritis Patient Charter. It sparked something in me - I felt empowered yet wasn’t sure where to direct these energies. Years later, I joined CAPA and became a member of the Steering Committee. CAPA is a grass-roots movement made up and for patients living with arthritis. We’re involved in a wide range of forums to ensure the voice of the patient is heard such as research, drug policy, increasing awareness and helping out individual patients. The voice of the patient – as provided through CAPA – is very much needed to help guide policy makers in making the right decisions.

Why was it important to CAPA to undertake a survey about pregnancy and parenting with arthritis?
As people with arthritis know all too well, arthritis affects people in their prime of their lives. It only follows that pregnancy and parenting are issues as well. Since becoming a parent, I’ve had to overcome so many different obstacles and challenges. The survey was really designed to get a better sense of the concerns and issues from people with arthritis and to give them a voice in bringing forward the important issues.

The issues begin before pregnancy when a person needs to consider the effect of medications we take on the baby. Unfortunately we don’t know as much as we should. The pregnancy and parenting with arthritis survey indicated this same concern from the broader community of people with arthritis - 88% of respondents indicated a high need for information about medication safety during pregnancy. This prompted me to write an article for The Mighty where I highlighted the Stress of women with Rheumatoid Arthritis during pregnancy and showcased the survey results.

Can you tell us about the people who responded to the survey?
We received a great response – 150 people responded to the survey! This is a lot considering we are talking about a very specific set of issues that affect people with arthritis. Most people who responded to the survey are living with inflammatory arthritis (like Rheumatoid Arthritis, Ankylosing Spondylitis, Psoriatic Arthritis). They represented a variety of ages and reflect the diversity of the Canadian population by province including rural and urban residents. There were a significant number (81%) of survey respondents who had considered or planned a pregnancy while living with arthritis and 58% had actually experienced a pregnancy. 65% of respondents who are currently parenting while living with arthritis.

What were some of the major findings?
The survey highlights many of the issues I expected for people living with arthritis when considering or planning pregnancy or raising children. There was a general decrease in importance of the topics from planning/considering pregnancy to the latter stage of parenting older/adolescent children. This could represent greater confidence in undertaking the parenting role while living with the challenges of arthritis, as well as the fact that the needs of the children are higher when they are younger.  The top issues, regardless of parenting stage include:

  • medication safety during pregnancy and breastfeeding;
  • dealing with fatigue and flares; and
  • the physical care of children.

The issues ranked as important for respondents varied slightly by stage. For example: the physical care of children was rated to be of higher importance when parenting young children (age 0-5) likely because of the physical challenges of arthritis combined with the physical demands of parenting. In contrast, the issues identified shifted when parenting school age children (age 5-12) when it became more important to have information on managing the demands of work, parenting and arthritis.
People who responded to the survey also indicated that they preferred accessing the information on the Internet. When accessing the information on the Internet, 40% prefer to access the information on their phone followed by their desktop/laptop computer (31%).

In general, the results of the survey indicate that patients have a high need for information when considering pregnancy and in carrying out their role as parents. Unfortunately, access to and reliability of this information is lacking. For example, access to certain information was low in some situations (such as Motherisk) while the quality of the information was identified as high. These results highlight that we need to be doing more to promote the resources and high quality information that does exist.

Was there anything that surprised you?
One thing that did surprise me is that people were not as concerned with getting information on the risk of passing arthritis on to their children. The people who responded to the survey still seemed concerned about the issue - 78% who were considering pregnancy or pregnant identified it as an important issue – but the concerns reduced over time where only 44% rated is as an important issue when parenting older/adolescent children.

What is CAPA doing with the results of the survey?
The survey results will be used to create an educational resource to assist people living with arthritis when considering pregnancy and in carrying out their role as a parent. Based on the survey results, we will initially focus on building the content for pregnancy and earlier stages of parenting. The resource will be web-based since most people who responded to the survey indicated this as their preference.

Thank you so much Laurie for sharing these results with us. If you want more information, contact Laurie at laurie DOT proulx AT arthritispatient DOT ca.

Thursday, August 25, 2016

Demystifying Rheumatoid Arthritis Treatment Options

With spending so little time with our rheumatologists, we often don't get an opportunity to ask questions and that can create a lot of fear around treatment. My new post for HealthCentral clarifies the options so you can get more specific in the questions you ask. And that will help you make better decisions about treatment:

"Your rheumatologist has just rattled off at the names of a number of medications. All these multisyllabic words sound like a foreign language -- how will you know what is the best treatment option for you? Let’s demystify RA meds, so you can make better decisions."

You can read the rest of the post on RA treatment options on the HealthCentral RA page.

Wednesday, August 24, 2016

My Smoking Wheelchair & Praise for Soul

Starting today off with a small poem:

The smell of burning insulation
Smoke rising from my wheelchair
(I’m okay)

But I should start at the beginning.

Day 1: In which my wheelchair develops a whistle
Sunday afternoon as I was about to nap, I noticed a high pitched whine coming from somewhere. At first, I thought a child in one of the surrounding apartments have gotten some sort of irritating little flute thing, but then it continued longer than anyone but a pearl diver could have breath for. Weird. It eventually stopped and when I got up, it was gone.

Later in the evening, I noticed the whine was coming from my joystick when I turned off the power. This has never happened before, so I promptly emailed Dave the Wonder Repair Tech.

(Expositional aside: Dave very recently started his own business in partnership with Paul the Equally Wonder Repair Tech. Both of them wanted to work in a way that focused on excellence in customer service and recognizing that timely repairs are essential to the lives of people with disabilities. So they started soul: The Wheelchair Studio.

Dave got back to me within minutes. He thought it was likely my capacitor venting and that whenever I wasn’t driving, I should make sure to turn off the chair. Because if I didn’t, it could fry the circuit board. And naturally, the circuit boards for this model wheelchair are discontinued.

Day 2: Smokin’!
Early Monday morning the chair starts stalling out. I leave a worried message for Dave and he moves up our appointment.

The good news is that it’s not the capacitor and Dave does mysterious things to the innards of my joystick. (dammit Jim, I’m a writer, not a repair tech). 

And then we make jokes about how Regan – because this is the chair that has been named after the girl in The Exorcist — has a pattern of doing well for a while, but once the repairs start, there’s a domino effect and they keep going. 

“Isn’t it the rule of three?” Dave laughs. I laugh, too, but I also knock wood.

Everything works fine and I’m very much relieved. That is, until that evening when the speed indicators on the chair start changing as I moved the joystick. Oh, and also on their own when I’m sitting still. I email Dave again and again, he gets right back to me. Tells me it should be okay, that is likely a loose wire, and that he’ll be back Tuesday.

I’m sitting at my computer a bit before 11 PM when the joystick display starts beeping, a red light comes on and then…

Then smoke begins to rise from the joystick box.

I’ve used a power wheelchair for almost 40 years and this has never happened before.

While the smoke dissipates, I might have had a small attack of hysterics. You see, fire is my thing. Or rather the thing I fear the most. And to be in the wheelchair, unable to get out of it on my own and right next to a smoking joystick box is one of the most frightening things I’ve ever experienced.

I send a freaked-out email to Dave, then call The Boy and fall apart. He comes down right away. I move into my new chair, which still needs adjustments and has been standing in the corner of my apartment like a purple sculpture. Sitting in it increases my pain levels, but at least I can move independently.

Day 3: Fried circuits and the best repair techs in Toronto
Yesterday, Dave comes down again and take the joystick box apart. 

Yup. That`s fried alright.

He installs a loaner joystick that fits my joystick program (which is two generations behind the current one) and tells me he’s miraculously located a replacement circuit board in the States and is in the process of getting it.

And we all draw a deep sigh of relief. Well, that is until the loaner joystick starts stalling out later in the day and at this point, I have a mild case of hysterics. Again, Dave responds immediately and is going to do some research. Clearly something more is going on in the innards of my wheelchair and he is determined to make it work.

I know that he will. Dave is the MacGyver of wheelchair repair techs, having a profound depth of knowledge, as well as a bit of a mystical connection to the things. He just gets them. He and Paul also truly understand that this equipment serves as the legs of someone who has a disability. They treat repairs with the seriousness and speed they deserve.

But, you might say, he didn’t fix the chair yet. The thing is, it can take a while to figure out what’s going on. When you hear hoofbeats, whether in medicine or wheelchair repair, you start by thinking of horses and gradually expand to include zebras. Sometimes, especially with Regan, you have to go all the way to hippopotamuses before you find the problem, but you still start with horses. It takes skill and dedication to work your way through what’s going on and soul: The Wheelchair Studio has that in spades. They also have that true dedication to customer service, something that has been increasingly missing in the larger medical equipment companies. Who else can you email in a panic at 11 PM and get an immediate response?

If you live in the Greater Toronto Area or Durham and are looking for highly skilled technicians who are dedicated to helping you get mobile so you can get on with your life, you can find no better than Dave, Paul and Jody at soul: The Wheelchair Studio.