(CurePSP has collected the following suggestions for assistive devices and adaptive equipment from patients and families experiencing neurodegenerative diseases. None of CurePSP, its employees, officers or directors, has made any investigation of the suggestions made or products mentioned below. Accordingly, none of such persons can make any representation as to their effectiveness or safety. As always, you should consult with your health care provider before changing your patient care routine or with any question as to the efficacy of any of the products mentioned below.)
Vision/Eyes
“My wife’s vision problems came early and were a key part of her diagnosis.”
- GenTeal Tears Lubricant Eye Gel
- Refresh Plus
- Restasis
- Systane Drops Moisturizing Eyes
- Punctal plug placed in the tear duct of each eye, by an Ophthalmologist, reduces tear drainage and keeps the eyes moist
- Books on tape
- Prism Glasses: ease looking down
- Dark Glasses: decreases glare – “Her eyes are super sensitive to light. She wears sunglasses anytime she goes outside, and we keep the house lights down.”
- Warm Washcloth: “We used warm washcloths for my husband. It won’t make it go away, but will offer some comfort”
-
Surgical tape: keep eyelids open
Eating/Drinking
- Blender to puree food
- Insulated dish
- Large handle and weight utensils: designed for easy grip
- Liquid thickener
- Nosey cups: opening for the nose allows drinking without lifting the head – “There are a variety of cups available that meter out small amounts of liquid to prevent it from “going down the wrong pipe”
- Pill splitter/crusher
- Pizza cutter instead of knife: ease of cutting food with one hand
- Plastic glass with screw on top: Ease of drinking- “This helped as often she would knock the glass over, but it did not spill liquid onto the table”
- Plastic bibs with pockets and/or disposable bibs
- Plastic cup with handles
- Rubber shelf liner: can be used to prevent plate from sliding
- “Scoop” plates or plates with deep rims: keeps food on plate
- Sippy Cup – “This was the only cup my mom was able to use”
- Straw: can make drinking more controllable and caregiver can pinch it closed if drinking is too fast
- Silicone placemat: prevents plate from sliding
- Straw for thick liquids: can make drinking more controllable and caregiver can pinch it closed if drinking is too fast
Mouth/Throat/Nose
“Does anyone have suggestions with what we can do to help relieve the build-up of phlegm she is experiencing?”
- Flonase: dry up post-nasal drip
- Orajel: mouth sores
- Diflucan: mouth ulcers
- Mouth moisturizing spray
- MucoMist
- Portable suction machine
- Throat lozenges, sugarless
Dental Hygiene
- Electric Toothbrush: thorough cleaning of the teeth, uses less hand motion
- Non-fluoride toothpaste: “non-fluoride toothpaste since he swallows whatever I don’t get”
- Open Wide mouth rest: helps mouth to stay open when brushing
- Oral swab with long handle
- Oral suction devices
- Plax: “it’s made to put a little in your mouth, swish and spit it out. It’s awesome for getting plaque off.”
- Surround Toothbrush: clean all surfaces of the teeth at once
- Ultraclean dental flosser with handle
General Hygiene
- Electric face wash device
- Electric razor
- Gillette trio: ease for carepartner use on patient
- Grab rails and bars: for shower, tub, bathroom
- Hand-held shower head
- Non-skid rubber bathmat
- Tub transfer bench
- Shower chair
- Swivel Shower Bench
- Waterproof Shower Accessible Transport Commode Medical Rolling Chair
- Wheelchair accessible portable shower stall
Urinary Devices
“I have been down this exact road! Sleepless nights, trying to get my husband to the bathroom – most often too late and sometimes trying to pick him up off the floor. I finally said enough is enough and purchased several different brands of condom catheters.”
“My mom was diagnosed with CBD a couple years ago and has been struggling recently with getting to and from the bathroom. She has to have help standing up, sitting down, walking, etc.”
- Abena Abri-Form Premium M4 catheter
- Bedside commode, urinal, bedpan
- Bidet: self-cleaning toilet
- Men’s Liberty, Coloplast, Bard 32mm: catheters
- Pads for inside incontinence briefs
- Reusable Male Comfort Fit Advantage
- Squatty Potty
- Toilet riser
- Washable pads or disposable, plastic-lined pads for under bed sheets
Mobility
“My husband is experiencing more frequent falls.”
“This whole type of disease means very hard decisions coming all of the time. If people quit moving, they quickly lose their ability to move. That is not good. But falling can be deadly. If a person uses a wheelchair but propels themselves, that helps keep their muscle tone & strength. My husband would go back & forth on using the walker & then on bad days, using the chair.”
- 4-wheeled walker
- Drive Nitro Walker: “it works well and transports easily
- U-step walker: weighted walker- “We have three walkers but the only one that was beneficial for my husband was the Ustep because of the braking system
- BraunAbility Turny Evo
- Broda Tilt Chair
- Electric lift chair
- GOLDEN Literider Envy Power Chair
- Karma Ergo Lite 2
- Medline Ultralight Transport Chair – Lightweight (15 lbs.) wheelchair
- Motion Composites – Light- weight wheelchair /disassembles to put in car
- Peramobile m3 – Power chair
- Portable exercise bike pedals
- Roho air pockets on wheelchair
- Seat belt installed on wheelchair to prevent falling out of it
- Transport chair
- Wheelchair accessible portable shower stall
- Wheelchair Footrest Leg Restraint Strap
- Wheelchair seatbelt restraint
- Wheelchair tray
Lifts
“My husband, who was diagnosed about 3 years ago with PSP, recently has not been able to get up from his recliner, bed, or toilet without major assistance from me”
“Consider renting instead of purchasing these lifts”
- Gait belt
- Grab bars
- Invacare lift
- Lumex Stand Assistive Device: “As his condition worsened, we got a Lumex stand assist device. That eliminated all of his falls.”
- Sabina lift
- SARA lift (Stand and Raise Assist)
- Bestcare Bestmove Stand Assist Patient Treatment: In and out of bed/chairs – “Hope it will work for you. I am a small woman, and my husband is a big man, and I can get him out of bed, in and out of wheelchair and up and down on toilet with relative ease.”
Speech/Communication Devices
“We know her mind is still lucid, but we are having a hard time communicating with her”
- Chattervox
- EMST Expiratory Muscle Strength Trainer
- Letmetalk
- LSVT Global (LOUD program)
- Picture cards, i.e. robe, bathroom, food, water etc
- SGD Lingraphica
- Spokeman
- Teach me (talk to me) technology – Device to use eyes to communicate on computer screen. Option to record his voice and then playback
- Telephone amplifier
- Tobiidynavox
-
Word Tray
Medical Alert Devices
- Bed monitor: underneath pads – starts to chime if patient moves off surface
- Baby monitor: view/hear activity in another room
- Chair alarm (in addition to the bed alarm)
- Cordless doorbell to ring caregiver (potentially connect to phone)
- Emergency alert systems and devices
- Grid for iPad
- Hand bells to ring for carepartner
- Video monitors in home connected to phone
Clothing
- Adaptive clothing showroom website
- Adult ‘onesie’ –“the shirt is long and has 5 snaps that attach in the crotch area which keeps the shirt down and secured”
- Elastic waist pants
- Helmet
- Lightweight, supportive shoes with Velcro closures or elastic shoelaces
- Non-skid socks
- Oversize outdoor jackets
- Padded pants, i.e. football pants/ski/snowboarding pants
- Silk/satin pjs OR silk/satin sheets: help to slide out of bed more easily
- Slip on shoes
- Sock assist
Miscellaneous Safety Products and Features
- Adaptivemall.com
- AMAneo (Assistive Mouse Adapter) – helps to control computer mouse
- Alternating pressure mattress or “egg-carton” pad
- Bed rail
- Button connected to lamp to turn on/off
- Car assist handle
- Car cane
- Cpap
- Drive Medical Adjustable Height Home Bed Assist Handle
- Emesis basin
- Foam corners for tables
- Gripper socks
- Hospital bed that elevates (to 40%)
- Magnifying glass (clamp to table) with light
- Non-slip skid pads for chair/tables
- Ramps
- Seatbelt extender
- Search ‘adaptive mall’
- Transfer disc or swivel seat cushion: helps with transfers
- Wider doorways
- Wrist strength recovery massage ball palm grip
Source: CurePSP 2023 - https://www.psp.org/ineedsupport/devices-equipment
1 comment
Very informative