Brain Support Network (BSN) and Stanford’s Parkinson’s Community Outreach co-hosted a virtual meeting in late August 2023. Attendees were invited to share “gadgets” (equipment, tools) or “tricks” (techniques with every-day items) they find useful in caregiving for family members with Lewy body dementia, progressive supranuclear palsy, multiple system atrophy, corticobasal degeneration, and Parkinson’s Disease.
Items shared fell into various categories, including:
– Smartphone apps and Apple devices
– Pressure sore prevention
– Incontinence and Hygiene
– Medication Management
– Writing Tools
– Low Vision/Dementia Tools
Here’s a spreadsheet (posted to Google Drive) we prepared with info on all the items shared:
Here’s the recording of the meeting, where the items are shown or described (in a show-and-tell fashion):
Notes from the meeting are below. Thanks to BSN Board Secretary Mindy Lumm for taking notes during the rapid-fire sharing!
Finally, see also our notes from our 2021 “gadget” meeting:
Gadget and Tricks Meeting (virtual)
August 27, 2023
Co-hosted by Brain Support Network and Stanford Parkinson’s Community Outreach
Notes by Mindy Lumm, Brain Support Network Board Secretary
Liftware Steady – Spoon that stabilizes itself against tremors; costs $200 or so dollars.
These are apps that allow someone to record and know how loud their voice is. Can share with clinicians while working on hypophonia. Voice Analyst focuses on pitch and volume. Decibel X has the most user-friendly interface. Both are free.
SmartPhone/Watch Fall Detection – Preference on Apple watches and smartphones to alert emergency contacts or authorities of a detected fall. Must set up and watch for false alarms. Meeting attendees said they have used this and felt it was helpful.
Image Sharing on TV – Doug showed how to share photos from iPad to TV for vision impaired; from setting, select screen mirroring, select device, use AirPlay. Can also wire in directly with an adapter/cable between smart device and TV using HDMI. IO Gear wireless mobile router allows to cast images to TV as well. These are all ways to avoid frustration of looking at a small screen for low vision impairment.
Snug App (free) allows loved ones to check-in daily and know that a contact is alerted
if they miss a check-in.
TD Pilot is an eye-controlled communication device for your iPad (will update with possible cost, likely very expensive)
SafeWander bed alarm system – connects to iPhone, requires WiFi, uses a sensor on clothing for an alert – $79 for sensor, $199 for sensor and wall gateway.
Grab bars – need to be installed correctly. Sometimes senior centers will help with installation.
AUVON night lights – turns on if there is motion in the room, can adjust the intensity of the light – really works well (plug in device, 4 in pack for $20). Rose uses as a nightlight. Gail recommends anti-blue light ones.
Swivel Tub Transfer Seat – almost $300, works great for tub transfer and safety. TIP: measure if the chair rails will fit properly, some sell extender bars.
PRESSURE SORE PREVENTION
Alternating air pressure mattresses – care facility claims the mattress catapulted Robin’s father out of the bed. Be sure to have handrails as the mattress moves user.
Heel protector boot – helps when bed bound
Ultra soft pillows – recommended for under elbows and other spots. Can be helpful in preventing pressure sores.
Wheelchair seat cushion – lots of votes for these, said they were really helpful; about $200?; cushion has individual cells that will move pressure point easily. Have to maintain seats, check pressure – one bad cell can result in sores. Should come with pump and a gauge.
Altering bed for safety/ease – Depends on the height of the person, where they are with mobility. Remove box springs, frame, whatever it takes to allow easier in/out. Risers at the head of the bed allows for head to be slightly elevated.
Sturdy chair with arms – an oak or similarly heavy chair with arms can allow those who still have some ability to help themselves up from a fall, better navigate getting back up.
Portable chair lift – that helps with standing from chair; for use before electric lift chair is needed. One brand – Carex Upeasy Seat Assist Plus
Rollator walker that is highly collapsible and travel friendly.
Let’s Fly Rollator – Another rollator walker option, very light weight, Swedish design, costs about $590.
LT-980 ultra lightweight wheelchair – Recommended for a fold-able, lightweight wheelchair for travel, etc.
OOCOME urinals are portable and spill-proof. Nicole attaches to her toilet to allow male to stand and use, with the hose customized to the toilet.
Puppy Pads – same product as ones marketed for humans, but much cheaper. Available at a good price at Costco. Use over and under the sheets, in layers for easier clean up (especially in the middle of the night).
Waterproof/resusable underwear can be washed – can use washcloths instead of the inserts for small amounts of urine. Careful that they can leak if user turns often and they are soaked.
Recommended bidet toilet seat.
Easy step-in shoes – Sketchers has a variety of designs, provide arch support, memory foam inserts. KIZIKs is another brand of easy shoes (covered in 2021 meeting).
Amazon service that packages medications for you for each dose, no extra cost just
the medication. Some pharmacies will do this for you as well. Easy to track medications and open. Should repack existing meds for you when they change.
Christine Hirabayashi, PhD recommends creating a weighted pencil by putting lug nuts around the pencil and securing with electrical tape or rubber bands.
LOW VISION/DEMENTIA TOOLS
Large format digital clock (7”or 10”) that says “Morning” or “Evening” – they are easy to set up and read with a very soft light. One brand shows a sun and moon should words become confusing.