Welcome to the February Care Partner Meetup! During this meetup, we discussed different tools and gadgets to help you and your person with Parkinson's live well. While we don’t publish a recording of these monthly meetups because of the sensitive nature of the conversation, we want to share some key takeaways so that even if you couldn't join us live, you can still benefit from the expertise of our panelists and community members.
Care Partner tools, tips and tricks
We shared a lot of gadgets, but just as with everything, be sure to check with your medical care team for anything that may involve your symptoms, safety, or well-being. And keep the following in mind:
- Not all tools, even if they're cool, are helpful for people with Parkinson's. Please ensure you are diligent in your research and that the item is the best solution for your needs.
- Circumstances change regularly. Do your best with your current information and be ready to adjust.
- You and your person with Parkinson's may not always agree on the best tools or if a solution is needed. Sometimes, a little peace of mind for you (and eventually your person with Parkinson's) must be the priority.
- While safety and ease make things easier for people with Parkinson's, having agency is just as important. If your person with Parkinson's enjoys a chore or activity, let them keep doing it. Even if you know that things would be easier if you got a tool to take away a task, that doesn't necessarily mean your person with Parkinson's needs or wants that.
A home camera you can access from your phone or computer is a good idea for some people. They are an easy way to track your person, ensure they are safe, and get into action in an emergency. The nature of these tools requires that you and your person with Parkinson's are on the same page about it. Set up ground rules and check in with each other to see how it's going. Most are easy to set up, but if you have trouble, a neighborhood kid, grandchild, or college student could get you set up in no time. Additionally, you can hire Geek Squad.
This app is perfect for recording doctors' appointments. You can record audio and get a transcript with just one touch on your phone. You can also make your notes specific with customized vocabulary, acronyms, and names. The Basic plan is free and gives you 300 monthly transcription minutes and 30 minutes per conversation. (If your appointment is longer than 30 minutes, you must hit record again.)
People with Parkinson's experience mobility issues frequently. Having a walker can give them a sense of comfort in knowing that they won't fall but will have a place to sit if needed. Additionally, particularly with the U-Step Walker, they can help with freezing, as the attached lights (that you can also add on) give people with Parkinson's something to focus on.
"ELENKER, built in 2000, is a professional brand aimed at safe mobility equipment of high performance. It has various products on Amazon, such as knee walkers, upright walkers, rollator walkers, and electric wheelchairs, and every product is 100% tested before delivery. All of their rollator walkers are 100% tested before leaving the factory. Additionally, most of the rollator walkers are FSA/HSA eligible. Don’t let your FSA dollars go to waste; by using your employer-provided HSF/FSA account, you can save on this item."- ElenkerWalker.com
"With the Rollz Motion, you always have the right mobility aid: a modern rollator walker when you feel like walking and a wheelchair when you need to rest but want to keep going. This way, you can still participate in all activities, even when you have reached your walking limit. Unfold the wheelchair package, attach the footrests, and turn the handles around. Once you are rested, transform it back and use it as a rollator walker again." - Rollz.com
"The U-Step Neuro Walking Stabilizer was designed to increase independence and eliminate falling among those with neurological conditions. The leading-edge features of the U-Step Neuro, as compared to other walking aids, make it superior by providing more stability, maneuverability, and control. The innovative braking system is easy to use and completely controls you. The U-Step Neuro will not roll until you lightly squeeze either hand brake. Once you release the hand brake, the unit will stop immediately. This feature is beneficial when standing up from a chair because the unit will not roll away from you. Unlike other rolling walkers, you can adjust the rolling speed of the new U-Step Neuro. Many people find that wheeled walkers roll too fast for them. That is why we engineered a control for setting the rolling resistance. Loosen the set screw and rotate the adjustment lever to the desired amount of resistance, then re-tighten the set screw. Additionally, there is a Laser & Sound Cueing Module. Those with Parkinson’s freezing primarily use this optional feature, but anyone with an irregular gait pattern can use it. This Cueing Module can help get you started, normalize your walking, and increase your stride. Press the red button on the module to project a bright red laser line on the floor to guide your step. You can also turn on the sound feature to set a beat pattern for walking speed." - UStep.com
"A small, discreet, easy-to-use mobility device that attaches to your cane, walker, or pole. NexStride helps to re-establish the connection between your brain and body through light and sound sensory signals to help you walk again. With NexStride, an audio metronome and visual laser are at your fingertips." - Get NexStride
Showering is one of the activities that care partners have issues with as your person with Parkinson's probably doesn't want you showering with them. Giving them the freedom and power to take showers by themselves is a great way to create agency for them and provide comfort to you. You know that your person with Parkinson's will have a place to sit if they are not feeling well, but also have something to grab onto if they begin falling. Install these tools even if you don't think you need them; eventually, you will, and getting used to them before they are required can prevent injury later on. Make sure that the handles and seat can support the weight of your person with Parkinson's. You can also use the handles in other places around your home.
Robot vacuums are tools for people with Parkinson's to be able to clean their homes without using a handheld vacuum. What's also great about them is you can add different attachments, such as a mop, to make cleaning your house even more accessible. They can be controlled manually by buttons or through applications you can download on your phone. Press "clean," and your vacuum will do the rest. You can block off rooms you'd instead of the vacuum. The primary purpose of getting a robot vacuum is to allow you and your person with Parkinson's to have peace of mind that your home is clean while also taking one thing off your plate. There are several options on Amazon for robot vacuums, which you can find here. Pictured here is the roborock S7 MaxV Robot Vacuum and Sonic Mop.
According to their website, "Zappos Adaptive is a shopping experience that brings together brands offering products that are innovative, functional and fashionable. We are on a mission to provide options for people searching for clothing, shoes, and accessories that help make getting dressed easier!" Many accessible brands that we love are available on Zappos Adaptive, such as Ugg, SOREL, and ZipGlove. If you're looking for Parkinson-specific clothing, they list Parkinson's favorites here.
One of the most frustrating parts of Parkinson's is freezing and voice issues. If your person with Parkinson's is alone and falls, both of those issues may come into play and cause them to be unable to communicate their identification and needs to first responders. Thanks to MyID, "you can manage and update your entire medical profile anytime, anywhere." According to their site, "First Responders can access your medical profile in 5 seconds or less, telling them who you are, who to contact, and how to save your life—the perfect medical ID for those with diabetes, autism, & other medical conditions. You can connect directly with other MyID users in a trusted, secure network and talk openly about medications, doctors, and insurance programs that directly affect you. MyID Profiles are free for life with the option to add Plus features."
The HandyBar is an easy attachment that will make getting out of the car much easier for your person with Parkinson's. The E-Z Out Door HandyBar Handle is an ingenious “handle” that fits into the U-shaped striker plate of your car’s door frame. It works on both driver and passenger sides, allowing you and your loved ones to hold onto something with both hands when entering and exiting your car. The HandyBar enables users to easily sit or stand safely while entering or exiting their vehicle, offering support and protection from falls. Added features like a seat belt cutter and window breaker make this the all-in-one solution for automotive safety and independence.
- Promotes Safety & Mobility: Protects against falls and makes standing or sitting easy.
- Universal: Secure fit into passenger or driver side of door latch; no vehicle modification required.
- No-Slip Ergonomic Grip: Fits perpendicular to the car for comfortable grip and optimal leverage.
- Window Breaker: Safely and efficiently breaks glass.
- Seat Belt Cutter: Cuts the seat belt in case of an emergency.
Sleep Aid Red Night Light
The Sleep Aid Red Night Light provides visibility and promotes sleep! The night light produces just the right amount of sleep-friendly long-wavelength light to provide visibility inside the room while remaining comfortable enough to fall asleep. They are lab-tested to ensure they emit only healthy and beneficial wavelengths for sleep. It's helpful so you can stay asleep while your person with Parkinson's uses the restroom at night while they can safely navigate their way to the bathroom without falling. Plug them into the wall and forget about it! This is one of our favorite tools, and we can't recommend it enough.
If you enjoyed this list of tools, check out our article on other Parkinson's tools! Thanks so much to our panelists. We'll see you next month!
Enjoy this month's care partner meetup.
Join us next month on Tuesday, March 7, at noon MST. You can register here!
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