2 posts tagged “patient quality of life”

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

Posted February 21st, 2018 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.”


  • 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.

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PatientsLikeMe – Out & About and OnCall

Posted April 2nd, 2010 by

The PatientsLikeMe team has been traveling around the globe recently talking about the power of real-world patient data in changing healthcare.  You may have heard about our executives at industry conferences, government hearings, or even on TV.  Highlights below.

Last month, PatientsLikeMe Co-founder and President Ben Heywood was on Fox Business News talking about how industry is engaging directly with patients and tuning into the “unvarnished truth” patients are sharing about their real-world disease experiences.

Earlier in March, we launched our PatientsLikeMeOnCallTM podcast series to bring to you our leaders’ perspectives on topics that impact you, the patient, and the healthcare industry as a whole.  We kicked off the series with Ben’s interview regarding Fast Company recognition.  You can check out that one and the rest of our podcasts on iTunes or click on the links below to start listening to a specific interview.  As podcast host Aaron Fleishman says, “thanks for stopping by and listening and we’ll talk to you next time.”

  • headphones_icon Listen | Ben Heywood (Co-founder, President) answers questions about the launch of our new organ transplants community and our collaboration with Novartis
  • headphones_icon Listen | David S. Williams III (Chief Marketing Officer) shares industry best practices in using social media for clinical trial recruitment (recently presented at the CHI SCOPE conference)
  • headphones_icon Listen | Paul Wicks Ph.D. (R&D Director) discusses nexus of personalized medicine and information technology (highlights from his presentation given at a Personalized Conference event by ASU, Mayo Clinic, AAAS, FDLI)
  • headphones_icon Listen | Jamie Heywood (Co-founder, Chairman) visits “on call” to talk about the impact of real-world experience on drug safety
  • headphones_icon Listen | Sally Okun RN (Health Data Integrity Manager) gives her perspective on improving patient engagement and fostering patient-provider partnerships through tools like the Doctor Visit Sheet (highlights from her presentation at the Patient E-Centered Health event by The Stevens Institute of Technology)
  • Watch | Maureen Oakes (Product Manager) shows you cool new website functionalities making their debut with the new transplants community
  • Watch | Paul Wicks Ph.D. (R&D Director) talks about the value of patients measuring quality of life through online patient-reported outcome