PatientsLikeMe was a proud sponsor of the 14th Annual Parkinson’s Unity Walk in New York City this past Saturday (April 26, 2008). Jeff Cole, Kate Brigham, Maureen Oakes and I (Lori Scanlon) were all onsite working at our sponsored booth. The event, which raised more than $1.3 million in donations this year, brought together thousands of people with Parkinson’s, their families and friends, support groups, non-profits and sponsoring organizations — all dedicated to advancing research and helping find a cure.
I said this onsite and I’ll say it again: The energy at the event was absolutely intoxicating! In addition to meeting hundreds of people who stopped by our booth to learn more about PatientsLikeMe, we were thrilled to finally meet some of our very own Parkinson’s Community members (and their families) face-to-face for the first time.
“Unity” is the perfect word to describe this event. We got to literally see thousands of people in the same place with the same goal, and it was nothing less than inspiring. We got to meet our members, who not only share their health information and experiences so openly on our site, but also opened their arms to welcome us “in”…it touched us all truly and deeply. We got to “feel the love,” as our members wore badges to represent those members who couldn’t be there. We then came home and read forum posts from the many more members who were at home watching us on the webcast and cheering on the walkers.
Here are a couple of many photos from the Unity Walk. Please take it all in. There was sunshine. There was energy. The smiles. The laughs. The love. The purpose. Can you feel it? Can you feel the (comm)unity? Good. Now, please pass it on…
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
- 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!”
- “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.
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