Assistive Devices and Adaptive Equipment

CurePSP has collected the following suggestions for assistive devices and adaptive equipment from patients and families experiencing neurodegenerative diseases. While we hope you find these suggestions useful in your journey, 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.

To add device suggestions to this list, please email woods@curepsp.org.

“My wife eyes are currently causing her extreme discomfort.”

  • GenTeal Tears Lubricant Eye Gel
  • Referesh 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

“My wife’s vision problems came early and were a key part of her diagnosis.”

  • 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”
  • Blender to puree food
  • Insulated dish
  • Large handle and weight utensils: designed for easy grip
  • Liquid thickener
  • 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 cup with handles
  • Pizza cutter instead of knife: ease of cutting food with one hand
  • “Scoop” plates or plates with deep rims: keeps food on plate
  • Straw: can make drinking more controllable and caregiver can pinch it closed if drinking is too fast
  • 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””
  • 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
  • Rubber shelf liner: can be used to prevent plate from sliding

“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
  • 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
  • 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

“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

“My husband is experiencing more frequent falls.”

  • 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

“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.”

  • 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
  • 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

“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.”

“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)
  • 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
  • Bed monitor: underneath pads – starts to chime if patient moves off surface
  • Baby monitor: view/hear activity in another room
  • 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
  • Adaptive clothing showroom website
  • Adult ‘onsie’ –“the shirt is long and has 5 snaps that attach in the crotch area which keeps the shirt down and secured”
  • Elastic waist pants
  • Lightweight, supportive shoes with Velcro closures or elastic shoelaces
  • Non-skid socks
  • Oversize outdoor jackets
  • Silk/satin pjs OR silk/satin sheets: help to slide out of bed more easily
  • Slip on shoes
  • Sock assist
  • 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
  • Hospital bed that elevates (to 40%)
  • Magnifying glass (clamp to table) with light
  • Ramps
  • Seatbelt extender
  • Search ‘adaptive mall’
  • Transfer disc or swivel seat cushion: helps with transfers
  • Wider doorways
  • Wrist strength recovery massage ball palm grip

Smart Patients Forum

CurePSP is proud to partner with Smart Patients to bring you this forum. We hope to create an online community where patients and families can learn and connect over symptoms and effects, learn practical tips from similar experiences, and share your hard-earned knowledge with those who need it most. Many of the suggestions above were shared on Smart Patients and we encourage you to join the community. Visit our Smart Patient forum here.

Smart Patient Participant Testimonials

  •  “The Smart Patient forum provides me with practical information on how to deal with my condition that I’d never heard of before my diagnosis and knowledge that I’m not alone. The stories and support from others are very soothing and helpful.”       – CBD Patient & Smart Patient Participant
  • “I was not aware of the Forum until after my wife died, however it has helped me in two ways – first, I regularly learn something new from the Forum responses, which in turn helps me answer questions that come up in my volunteer role as a Peer Supporter and Support Group facilitator. Second, I find if I can give a suggestion to one who has posted a question on the Forum, it not only gives me satisfaction that I have helped someone, it also has helped me with my grief as I am being of service others, who’s loved one is on this difficult brain disease journey.”                       – CurePSP volunteer, Former PSP caregiver, & Smart Patient Participant

Lending Closets

Medical Lending Closets are donation sites that give or lend medical products, equipment, and devices. Lending Closets provide a much-needed alternative to purchasing such supplies outright. Many people who use a Lending Closet do not have insurance, or have already maxed out on their insurance coverage for these types of items. In addition, certain medical supplies are not covered by insurance at all. In addition to loaning out products, Medical Lending Closets also readily accept contributions of used equipment. 

At Lending Closets, the items are clean and in good working condition. In some cases, they can be returned after use. Supplies are distributed on a first-come, first-servedbasis. Because of the frequent change in availability of goods, we suggest that you call ahead to ask if particular articles are in stock. Please note that Lending Closet sites and their respective auspices vary from locality to locality, city to city, state to state. Therefore, we are providing you a broad list of suggestions, with the understanding that resources will differ from place to place. Among the first places we recommend contacting are: your local Area Agency on Aging and senior center. Also, for those people who have an occupational therapist, you might ask if they have information on local lending closets.

Finally, we suggest that you consult with your medical team – physician, physical therapist, or occupational therapist – before selecting a specific kind of adaptive or mobility equipment. There are a wide variety of products on the market, and you want to find out which one is right for you and your individual symptoms or needs.

The types of organizations that may lend medical supplies and assistive devices:

 

  • Adult Day Centers

  • Area Agencies on Aging
  • Churches, Synagogues, and other faith/worship congregations
  • Departments/Councils on Aging
  • Disability Services
  • Fire Departments
  • Human Services Departments
  • Lions’ Clubs
  • Parishes
  • Parkinson’s Disease Chapters
  • Parkinson’s disease Exercise Classes
  • Parkinson’s disease and PSP/MSA/CBD Support Groups
  • Senior Centers
  • Senior Services Departments of local townships
  • Senior Volunteer Networks
  • Township Offices
  • Village Halls

Using an online search engine, patients and families may locate a local lending closet to access or borrow equipment listed above. Helpful keywords to include when doing a general computer search for lending closets are:

  • Durable Medical Equipment
  • Federal agencies, e.g. Disability Services: usa.gov; Social Security: ssa.gov; National Association of Area Agencies on Aging: www.n4a.org; Administration on Aging: acl.gov
  • Health Equipment Loan Programs
  • Medical Equipment Loan Closets/Town/State
  • Medical Lending Organizations
  • National, Not-for-Profit, Disease-specific Organizations, such as Muscular Dystrophy Association: mda.org; ALS