4 posts tagged “QOL”

What products help people live better with Parkinson’s disease? A room-by-room round-up

Posted 7 months ago by

Over the years, PatientsLikeMe members living with Parkinson’s disease have discussed a lot of products and ideas for living better with PD. From kitchen knives and eating utensils to shoe horns and shoelaces, we’ve compiled a list of tools you’ve talked about for (almost) every room in the house and many different aspects of life. Check it out, and join the community to chime in with your own favorites.

In the kitchen

  • A “rocker knife,” also known as an “ulu” or a “mezzaluna” knife “works great for chopping/slicing veggies, fruits, cheeses, etc.” and a “large-blade pizza cutter is great for cutting pancakes/waffles very quickly,” one member says
  • With a food chopper, like those sold by The Pampered Chef, “I can chop onions, peppers, garlic in no time,” another member says
  • Others have mentioned weighted utensils and kitchen utensils specifically designed for people with PD
  • Multiple members have also discussed drinking cups with lids and straws (for both cold and hot drinks) to help prevent spills and gagging/choking

In the bathroom

  • Biotene toothpaste or mouthwash “helps with dry mouth caused by meds”
  • A raised toilet seat and a stool at the bathroom counter can be helpful, as well as a walk-in shower, if possible, some members say
  • Another member uses an electric toothbrush, a hand-held shower attachment and a bath bench “that sits w/ 2 legs inside and 2 legs outside the tub… this allows you to sit down and then raise and swing your legs up and over the tub instead of stepping over and risking a fall. [found a health aid supply store/ Lowe’s, etc.]”

In the living room/bedroom

  • A “good power-assisted recliner” (one member prefers this over his adjustable bed)
  • Silk pajamas and/or satin sheets may make it easier to get in and out of bed
  • “A fairly inexpensive bed rail that goes under the mattress and also rests on the floor… It works for turning over in bed and getting in and out of bed,” another member notes

Getting dressed

  • Members have made wardrobe adjustments, like: “Larger, easy wear clothes, a long-handle shoe horn and pre-tied or slip-on shoes, covered hairbands looped through waistband button holes, an old shoe button hook & large paper clips in zipper grips for those days the fingers refuse to work” (Hint: Here’s how the hair elastic/button-hole trick looks… pregnant women also use this hack)
  • “I use elastic shoelaces so I don’t have to tie/untie my shoes,” another member says
  • “I can no longer button my shirts. This has led to me showing up in t-shirts for events that clearly require more. Then my doc suggested MagnaReady shirts – they have magnets that are hidden behind fake buttons and buttonholes. Genius!”

For communication/entertainment

  • “I also use an adaptive pen (Ring-Pen) and Dragon Naturally Speaking,” one member says
  • Although they can be pricey, a Kindle or iPad can be “great for those of us with tremors. Holding a book sometimes seemed impossible.”
  • In terms of even newer gadgets, “Have any of you heard of Alexa or Google Assistant? They are virtual assistants, built in as a part of smart home devices, such as Google Home and Amazon Alexa —both are smart speakers that you can use voice commands to search information or make a call, or ask them to crack a joke… I’m loving it and it becomes my companion of a sort.”

Etc.

  • Many members have talked about using canes, hiking poles, walking sticks or folding canes, which fit in a small bag
  • In a discussion about physical-therapy objects, one member says, “I use a foam stress ball at my desk so my hand has something to do besides tremor,” and others say that exercise balls (for sitting with less back pain) and four-pronged massagers (for working out back/neck soreness) can be helpful
  • And in a thread about living solo with PD, one member says, “I have found invaluable aid with my Rollator [rolling walker with a seat], my extended pole gripper that we’ve seen on t.v. for grabbing stuff way down there on the floor or up in the cabinets… Life Alert alarm is essential.”
  • Overall? “Accept what you cannot do safely!!! Reprioritize what’s important, then simplify and learn patience,” a member advises.

Have any questions or comments about living better with PD? Join today and connect with 20,000+ members with PD.

Share this post on Twitter and help spread the word.


“We can and will do better” – An interview on pulmonary fibrosis with Dr. Jeff Swigris

Posted January 3rd, 2014 by

Just this past month, a few members of the PatientsLikeMe Team (Arianne, Dave and Rishi) traveled to La Jolla, CA for the Pulmonary Fibrosis Foundation Summit. It was quite the mixed crowd (with patients, clinicians and researchers), and it gave them (and everyone at PatientsLikeMe) a chance to learn more about pulmonary fibrosis (PF) from different points of view. Thank you to everyone who stopped by our exhibit booth and for sharing your experiences.

While they were there, the team had the chance to interview Dr. Jeff Swigris. He’s an Associate Professor of Medicine at National Jewish Health in Denver and has been working with PF patients for almost two decades. He’s published over 65 articles on interstitial lung disease (ILD), most on IPF, and he has a special interest in Patient Reported Outcomes (PROs) and patients’ Quality of Life (QOL). Dr. Swigris is also the Director of the Participation Program for Pulmonary Fibrosis (P3F), an online resource for patients, caregivers or anyone interested in learning more about PF. On the P3F website, patients and caregivers can also find out about studies they can currently enroll in. Right now, the P3F is currently enrolling for a study that aims to examine the effects of supplemental oxygen on patients with PF and their caregivers.

Why do PROs matter? And what questions are Dr. Swigris and his team at the P3F trying to answer? Find that and more in our interview.

Can you tell us a little about yourself and what led you to focus your research on pulmonary fibrosis?

Originally from Illinois, I went to med school and completed much of my education in Ohio before pursuing subspecialty training in Pulmonary and Critical Care Medicine in California. What led me to focus on PF? Like many pulmonologists, at the start, my interest was in the critical care medicine aspect of the profession, because it’s so immediate: there’s an urgent medical need that requires an instant intervention, and you can see the results of your decisions right away. That pace/action drew me to the field, but as a resident, in the late 1990s, I did a pulmonary pathology rotation. This was around the time we were uncovering new and exciting things about interstitial lung disease (ILD) in general and PF in particular. The community discovered that, upon careful re-inspection, certain ILD patients that had been labeled with idiopathic pulmonary fibrosis (IPF) lived longer than expected, and their longer survival was driven largely by what was seen under the microscope—in lung biopsy specimens from these patients. When I landed at Stanford, I didn’t want to focus on pathology, I wanted to focus on ILD patients. There wasn’t a structured ILD program at Stanford when I first arrived, but IPF researcher and one of my mentors, Glenn Rosen, offered me the chance to help him start one. I realized no one in the ILD community was focused on ILD patient experiences and their quality of life (QOL). I wanted to focus on ILD patients as people and really understand their experiences (probably influenced by my training in osteopathic medicine, which offered me the perspective of looking at patients through a holistic lens). It was a gap that needed to be filled. I had found my niche. That’s how I got started focusing on the patient experience, patient reported outcomes (PROs) and QOL in PF.

For those who might not know about it yet, what’s the P3F all about?

The goal of the P3F is to create a safe, trustworthy online environment and informational resource for patients and caregivers and to provide a platform for conducting research that matters to patients with PF. In the current project, we’re trying to determine whether and how supplemental oxygen affects (benefits) patients with PF. We’re funded by PCORI, which is an amazing research organization. As mandated by PCORI, we’re getting everyone involved in this research: patients, caregivers, even oxygen prescribers. Above all, this project gives me a chance to work with very engaged patients, some of who are actually members of my research team.

Knowing what questions to ask patients, the when, how and why of the thing is really important. The first thing we needed to do for this project was to figure out what question needed to be asked—what question do patients with PF want to know about? We started the investigation by going to the experts—the patient- and their caregiver-members of our PF support group. I noticed all my PF patients ask about oxygen, and oxygen is a major topic at our support group meetings. My perception is that oxygen is generally perceived as a “bad” thing because it’s a marker/milestone that the disease is severe and progressing. When supplemental oxygen comes into the home, it affects the entire home environment and everyone there, particularly the patient, but also the caregiver. There’s a lot of equipment and planning involved, as patients know, and using oxygen becomes “a daily grind.” Supplemental oxygen can be a constant reminder the disease is getting worse, but the reality is we know very little about the therapeutic effects of oxygen for PF patients (and the majority of the available data has been mostly borrowed from COPD studies). Some questions we want to know about oxygen use are:

  • Do patients who use it feel better?
  • Does using oxygen allow people to be more active? Does this change the longer patients use oxygen?
  • Are people who use supplemental oxygen more or less likely to leave the home? Does this change the longer patients use oxygen?
  • Do patients who use it live longer?
  • Does oxygen use prevent pulmonary hypertension?
  • What are the downsides to using oxygen (eg, public stigma)?

I want to include patients in the process of filling this big gap in knowledge (about supplemental oxygen), and I needed patients to help us shape the goals of the study. (Sounds pretty in line with PatientsLikeMe!)

On PatientsLikeMe, the pulmonary fibrosis community has their own patient reported outcome measure (PRO) we call the PF Severity Score. Can you tell us a little about your own interests in PROs and how you see them being used in healthcare?

I believe the patients’ perspectives are incredibly important, and they will be increasingly used as endpoints in therapeutic trials. Improving lung function is one thing, but is that all we can do? NO! We want to allow patients to feel better and do more. Improved patient QOL should be a major goal, maybe the most important goal. The challenge is the rigorous development of PROs, so the clinical and research community can be confident the PRO is sound.

How do you think online communities like PatientsLikeMe can impact someone living with a rare lung condition?

For some patients, particularly those with rare diseases, it may be difficult or impossible to find other patients with the same illness. Even for common diseases, there is such comfort in knowing you’re not alone (online or in person, someone knows what you’re going through). Knowing you’re not alone gives you confidence, a sense of control, to persevere and keep living.

As an expert in the field, what’s ahead for pulmonary fibrosis research and quality of life advancements? (Any studies you’d want people to know about?)

As mentioned above, one of the big gaps in understanding of ILD is the benefits and drawbacks of supplemental oxygen. That’s what the current study on the P3F is focused on. People can find out more information on that here. We need disease-specific PROs that have been rigorously developed in the targeted patients. Continuing to borrow data from other diseases won’t work for the PF community in the long term. I’m definitely interested in learning more about how I might partner with PatientsLikeMe and use the Open Research Exchange to develop these PROs. If we all find a way to work together, we can and will do better for patients.