Growing older with post-polio syndrome: Social and quality-of-life implications

Beliefs (quality of life)

Quite universally, participants defined quality of life as being able to engage in the activities of daily living. This was consistent among all participants and across the three focus groups. As the participants engaged in this aspect of the discussion, they often went on to provide examples of how they are continuing to engage in meaningful activities. Volunteering, travel, and meal preparation were the most commonly cited activities that participants reported they continue to enjoy and which they feel contribute positively to their quality of life.

However, the discussion on quality of life also led some participants to share examples of activities they feel they can no longer participate in. Housework and cleaning were the most commonly cited examples of activities that participants report they can no longer complete. A few participants reported that they have made efforts to complete housework recently, and it caused a significant increase in pain and weakness:

I do have a cleaning lady. I had to give up cleaning. I tried to clean and it made me so much worse when I was cleaning. After cleaning, I’d be in bed. So I’ve had to give up a lot. (Female, Age 74)

Changing functional needs

Further to the concept of quality of life, this increasingly led participants to discuss the change in their physical selves and how this has impacted their lives. Most specifically, many shared that their physical bodies have become weaker and they have decreased activity tolerance. They feel that their physical health is declining, but also expressed a willingness to adapt to these changes.

In addition, the participants shared that their experiences with declining physical strength and mobility is more marked by PPS and the aging process. It was noted that while they had experienced weakness at a younger age, many went on to live active lives, and now the symptoms are returning. There was a sense that they had thought they had “survived” or “beat” polio:

And things are getting difficult in a lot of ways. And we need to find a way to stop that. Because we had a disease, we got over the disease, we got on with our lives for 20, 30 years, and suddenly something else happened to us. And now we’ve got to cope with that in a world that’s not prepared for us. (Female, 72 years old).

During this portion of the focus group, in all three focus groups, the participants shared more emotional feelings about the changes that they are experiencing:

I started talking about my experience as a child having had polio. And I had suppressed everything. I’d pushed all my feelings down. I didn’t deal with them. And then all of a sudden, the flood gate opened up and it was like I just … I cried. It was embarrassing. (Female, 70 years old)

Many participants felt that the change in their physical selves was impacting quality of life. In addition, a few participants shared a fear of how their physical status will change in the future:

I’m still in pretty good shape but I’m scared about the future. (Female, 72 years old)

Knowledge and understanding

In general, the participants appeared to have a strong understanding of polio and PPS. Specifically, they were well educated on symptom management and energy conservation. Many demonstrated an understanding that it is important to conserve energy and shared tips and strategies within the groups about how to maintain physical activity without causing excessive pain. Further to this, a few members shared that they have done their own research and self-diagnosed themselves with PPS. Despite presenting as a well-informed group, most participants also expressed a desire for more education. One participant stated:

… research and knowing about exercises. I know we have to be careful not to overdo it. But being aware, being informed about new developments, about new research that will help us maintain our physical abilities as much as possible. (Female, 66 years old)

Many other participants expressed a similar desire for more education and understanding. Specifically, participants expressed that they have outstanding questions about new medical information, emerging technologies, available services, funding, home modification options, and pain management strategies. A few participants expressed that as polio has left the social stage less information and public education has been available.

Attitude

Although the participants in the focus groups shared frustrations, emotions, and desire for a different health state, by no means was this the majority of the subtext of the conversations. The majority of group participants shared stories and examples of their commitment to continuing to build a life full of meaning. They expressed hope and shared stories that demonstrated significant resiliency. The participants shared that having a good quality of life is sometimes about having the right attitude:

I’d rather be happy and cheerful and appreciate what I have. In fact, when I went on that cruise, the post-polio cruise, there were post-polios […] from all over the States, and some of them are much worse off than me. And they were praising and thanking God for what they had. You know, that’s the right attitude. (Female. 70 years old)

Other participants shared that part of having hope and resiliency is about changing the expectations you have for yourself and your abilities:

Well, of course you have to change your way of thinking when it comes to quality of life. If you can’t do what you used to be able to do then you have to be I guess happy to do what you can do. And I’ve had to give up that feeling that if I couldn’t do it then I wasn’t good enough. (Female, 70 years)

Medical community

When the focus group facilitators asked questions about how the participants’ quality of life could be improved, some participants discussed factors and issues related to the medical community. More specifically, participants talked about a general misunderstanding of PPS among the medical community:

And then I found that doctors, even doctors, they looked at me with horror or surprise—“Polio? Well, we don’t learn about polio. It’s gone. We don’t learn anything about polio. So I don’t know how to treat it. That’s over.” (Female, 74 years old)

The participants shared that there is a general lack of understanding and education in the medical community about PPS and how it should be treated. Many participants reported they feel dismissed by their health professional, or that there was a sense that there was nothing available to address physical symptoms and limitations:

We need more doctors taking an interest. Because we’re aging, we had a first disability, but because we’re having problems now with other things, they sort of look at us and say, “Oh, it’s all just your polio.” They don’t think, “Well, okay, they have polio but now we’ve got this other problem that’s occurring.” (Female, 72 years old)

However, not all participants shared negative experiences with the medical community. Several participants shared the names of health professionals who both understood PPS and also offered symptom management, and other participants were eager to obtain their contact information:

Years ago when I went to physiotherapy … it happened that the physiotherapist was back from a tour in Vietnam. She knew about polio. She was training a young guy who had never heard of polio, showing him … So that was positive to me. (Female, 76 years old)

In general, when asked about how quality of life could be positively impacted, there were many participants who requested that there is increased education for health professionals about PPS. As all three focus groups were conducted in collaboration with March of Dimes Canada, there was discussion about any activities that MODC could do to support the participants’ needs. A few responses were connected to the need to develop initiatives and programs to increase education among all health professionals:

The only thing that comes to my mind is educating the medical people. And that includes the nurses and anybody who is taking care of us. And it doesn’t have to be like a big thing. (Female, 72 years old)

Service

Participants also shared aspects of community services that are both helpful to building their quality of life, or deemed absent, and thus negatively impacting their quality of life. A common theme was transportation. Participants who lived in urban geographies discussed the benefits of accessible transportation, while those in rural areas shared frustration that transportation was not available which negatively impacts their quality of life:

Our local bus service … if you’re in a wheelchair … you don’t receive door-to-door service. They can pick you up and drop you at a bus stop. In the middle of January in a snowstorm, you’re supposed to sit at a bus stop and wait for a bus to take you somewhere else, and then transfer over all the snow onto another bus because they’re not having door-to-door service. (Female, 72 years old)

Participants also shared that they use personal support services to assist with personal care, housekeeping, and outdoor maintenance. Many shared that allowing others to perform housekeeping activities provided freedom to engage in other activities that lead to an increased quality of life. This topic often lead to funding discussions. Some participants shared that they pay out of pocket for these types and services, while others shared that they would like to advocate for more funding in the future:

But I also would like things to be covered by OHIP … I mean all that comes out of my pocket. It’s not covered. (Female, 72 years old))

A few of the participants also expressed a desire for more services targeted at social programming. Specifically cited were an interest in organizations that host social outings, such as to a sporting event, or events, such as picnics or barbeques.

Assistive technology

The vast majority of participants appeared to use some form of mobility device to transport themselves. Canes and crutches, walkers, power wheelchairs, and scooters were all devices that were used by the participants. When asked about things that support their quality of life, many participants referenced their mobility devices as a factor that enhances their lives:

But I have to tell you, I love the chair. This may be weird. Like it’s my mobility. And actually once I went into the chair, I found I could do a lot more than what I could on crutches and braces because I could carry things, I could get things, bring them where I wanted to, and I didn’t have to wait for someone else to do it. And I think actually what going into a chair teaches you is … Like not so much a power chair but any kind of a wheelchair, is that it teaches you patience. (Female, 70 years old)

While this quote is reflective of many of the comments made by participants, a few participants also reflected that they were initially resistant to using mobility equipment. Stigma and fear of accepting the physical decline were reasons stated; however, all participants who shared this sentiment also shared that they no longer feel this way about their mobility device.

Many participants also shared that there are other assistive technologies that are having a positive impact on their lives. Car hand controls, bathroom and kitchen modifications, stair glides, and wheel-in showers were all cited as beneficial technologies to allowing the participants to engage in their activities of daily living with less difficulty and more independence.

In terms of accessibility in the community, a few participants shared that they “think the government has done really well in providing things like ramps and elevators and places to sit.” However, others shared frustrations with facilities and public spaces that are still not yet accessible. This barrier was reported as negatively impacting participation in social activities, thus negatively impacting quality of life.

Funding

Further to the notion of accessible community, many participants expressed views on the theme of advocacy. While some participants have experienced positive changes in their community to make the environment accessible, others have felt that they have had to advocate for accessibility to be addressed in their community:

And I also have gotten involved in the accessibility issues in Ontario and municipalities and all that kind of stuff … But it’s also very disturbing when you know that there’s a problem, and you say something, and they go, “Yeah, but you’re the only one. We don’t have to fix it. No one else needs it.” And you know the people are having problems, you know that your municipality is not following the statutes … This is 2017, and the Act started in 2001. (Female, 72 years old)

Participants expressed a desire for more funding and called upon agencies such as March of Dimes Canada to provide more funding and to advocate for more funding. Specifically, funding for home modifications and mobility equipment were referenced during the discussion.