Brain Support Network and Stanford co-hosted a virtual meeting on Sunday, June 27. Attendees were invited to share “gadgets” (equipment, tools) they find useful in caregiving for family members with Lewy body dementia, progressive supranuclear palsy, multiple system atrophy, corticobasal degeneration, and Parkinson’s Disease.
Gadgets fell into various categories, including:
– Mobility and Safety
– Voice and Mouth
– Medication management
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 many of the items are shown (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 exchange of gadgets!
Gadget Meeting (virtual)
June 27, 2021
Co-hosted by Brain Support Network and Stanford Parkinson’s Community Outreach
Notes by Mindy Lumm, Brain Support Network Board Secretary
MOBILITY AND SAFETY
(Marnie) Ustep Walker – watch videos on their website, helpful. Weighted on the bottom and wide base. Default position is brakes on – helpful when walker tends to run away or unsteady. Can turn up resistance if it’s too loose. Not as easy to cart around, but very stable.
(Marnie) Pivot Disc – when person can still bear weight but has trouble with a transfer. Helps to turn into wheelchair or other. Caregiver needs to use their foot to stabilize and do the pivot. Not recommended for them alone or unstable (toilet). They make one with a handle – Marnie has 4 so one is available where needed. Easy to kick away as needed.
Gait Belt – Strapped around upper chest – one hand in the back of the belt to move body and stabilize. Doesn’t always prevent a fall but allows to bring them down more slowly and safely. Can also be used on the waist.
What SUV cars are best for getting folks in and out of? Nissan Murano – still difficult, had to use a stool. Nissan Sentra is much easier. Handle for the car door can be useful – careful of the fit for stability.
(Keith) Bed cane: Piece of plywood that slips under the mattress and belts to the mattress with a handle. Feels secure (psychologically) – little tricky to install but helps feel more secure about getting in and out of bed.
(Pat H) Under cushion sofa grab bars. Very similar to the bed cane, bed rail supports person.
Chair or Bed Alarms – good if your loved one doesn’t want to wake you, lets you know they are trying to get up. Bed alarms come in various sizes. One person’s (Robin’s) is wireless and interfaces with monitor, knows if patient gets up. Pads do have a lifespan of 1 or 2 year, so watch for battery or pad needing replacement.
(Joyce) Elderly bed rail with attached bear bell, can hear that bar was grabbed.
Video Baby Monitor – used with a camera and audio, can aim it (Infant Optics) or use a wide angle. Recommended by support group member.
(Chuck) Cloud Baby Monitor (app on phone or ipad) – allows to hear and see for free. If you must step out of the house, can connect to internet for small fee – can talk back if that doesn’t scare them. Cloudbabymonitor.com
(Dianne) Soft inflatable u-shaped for wheelchair – reminder to stay in chair versus an active restraint.
Remote controlled lift – expensive, $2K, from Norway. Margo showed at a previous meeting, used to get her husband off the floor after a fall.
(Candy) Calling non-emergency fire for help with falls. Recommend putting that number by the phone.
(Tiffany) EMS recommended a flat gurney for falls, also one with a seat only takes 2 people.
(Denise) Liberty Lift Standing Aid: Handle on each side, allows person to pull against and lift up off a chair.
Power Toilet Lift Seat – liftseat.com
(Robin) SuperPole with a trapeze
Garbage bag trick – easy to turn and position! Beaded car seat covers are also recommended for ease in turning.
HYGIENE AND INCONTINENCE
Bidet – brondell.com
Urinal for men – plastic, cheap, spill-proof
Purewick for female?? One person (Tiffany) investigating from TV ad
Unisex disposable urine bag – traveljohn.com – good for traffic, hiking, etc. too!
Depends for Men – husband says they leak, uses 5 or 6 without saturating them. Make sure to use the proper size, can add an extra pad inside that may help with feeling of leaking. Poise – “booster” or flow-through. Makes a difference how you are sleeping as to where the booster pad is placed.
Condom catheter – Hollister brand mentioned by one person (Robin): come in sizes, bag and tube connect on the condom so urine drains into the bag (either a leg bag or a hanging bag on the bed). Retracted penis pouch if condom catheter doesn’t work well is another option. Medicare paid for 30 per month – very inexpensive.
Disposable pads for around the toilet: https://www.webstaurantstore.com/23-x-22-gray-disposable-toilet-floor-mat-imp-1550/9991550G.html (look on Amazon if your toilet has a round front) – works wonderfully and lasts a while. One person (Joyce) recommends too, helps husband know where to position feet as well. Has a fragrance to help with odor. Better than washable rugs where the backing deteriorates.
Quilted, washable pads for the bed – many sizes, can go under the fitted sheet or over – clean up well with bleach. Can double as a method to help move or reposition.
(Dianne) Spoon/utensils with a large handle so it’s easier to grip. Plates with an edge where food doesn’t fall off the plate – quiche dish or tart pan. Clothing protector was very helpful (don’t call it a bib!!), or an apron for eating.
Waterproof adult bib:
Women and incontinence – recommend Depends, Purewickathome.com, Poise pads. There are bedside urinals for women, or bedside commodes.
Pre-moistened, disposable washcloths – throw in the microwave for 30 seconds to warm up, good alternative when showers are dangerous/difficult. Rinse-free. Brand: Sage. Also have a shower cap with no-rinse shampoo.
(Marnie) Food thickener; it matters which one you use. Started with a cheap one from the store, made with modified food starch. Speech pathologist had better recommendations – Simply Thick, in liquid or powder. Want to look for xanthan gum. Nestle Resource Clear (not the starch) or Clear DysphagiAide. Helps when coughing a lot with thin liquids. Doesn’t quench thirst, so give water as well.
Hormel Thick and Easy Meals – pre-made, pre-thickened liquids, meals
Plastic Syringe for when opening mouth is harder, can use to give liquids/purees.
Device for getting pants/socks on – avoid balance issues: https://miracledressingaid.com/store/ols/products/miracle-dressing-aid-gen-811
Hands-free shoes: https://kizik.com/ Collapses back of the shoe so they can get foot in
Coiler laces – can transform shoes to slip on, no tying
Hero – pill organizer; 90 day supply, company coordinates ordering; interfaces on your phone with reminders. Handles up to 10 medications. https://herohealth.com/
MedReady dispenser with alarm – lockable
MOUTH and VOICE
MouthKote – spray helps with meds that are difficult with a dry mouth
Voice Amplification Options: Chattervox or Shidu – when projection is an issue, amplifies voice through speaker
Styrofoam Roller – widely available. If one person’s (Keith’s) wife lies on it before bed, makes a big difference with mood and ability to get up in the morning.
Stationary recumbent bike – popular as you can lay back, more comfortable position, get exercise and keep limber. Look for used bikes on local websites.
Pedal exerciser – budget model, use seated (adjustable resistance) – put against wall or use a weight. Can also use on a table for arms. Look for $30 version (too cheap – not as good). DRY brand. Keeps count, can set a goal.