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, nor should it be implied CurePSP endorses and recommends these devices and equipment, they are merely a sample of what is available.
To add device suggestions to this list, please email firstname.lastname@example.org.
Vision issues may occur at any time, especially in PSP. Abnormalities with eye moements is something that neurologists will asses, which is why they often have you follow ther finger and move your eyes in different directions without moving your head. In addition to an impaired ability to move eyes up and down, other symptoms may include double vision, abnormal eyelid movement, difficulty blinking, and dry eyes. If you experience changes to your vision, especially if they interfere with your daily functioning and quality of life, you can be assessed by a neuro-ophthalmologist.
- Books on tape: ease straining of eyes
- Botox injections: help to keep eyelids open, done by neurologist
- GenTeal Tears Lubricant Eye Gel, Refresh Plus, Restasis, Systane Drops Moisturizing Eyes: relieve dry eyes
- Hat with bill/rim: help with light sensitivity
- Punctal plug placed in the tear duct of each eye by an Ophthalmologist: reduces tear drainage and keeps the eyes moist
- Prism Glasses: ease looking down (early in diagnosis, consult with neuro-ophthalmologist)
- Dark Glasses: decreases glare and assists with light sensitivity
- Warm washcloth: comfort sore eyes
- Surgical tape: keep eyelids open
PSP, CBD and MSA can cause weakness and incoordination of throat muscles, making it more difficult to swallow. This issue increases the risk of food or liquids going into the lungs, which is called aspiration, and can lead to pneumonia. Your doctor may recommend regular examinations of your swallowing function to make sure food and liquid are going down the right way. Additionally, speech-language pathologists can help assess swallowing function as well as provide recommendations for diet and lifestyle modifications and exercises for the throat in order to make swallowing easier and safer.
- Blender: puree food
- Insulated dish: keep food warm
- Large handle and weight utensils: designed for easy grip
- Liquid thickener: ease swallowing
- Nosey cups: opening for the nose allows drinking without lifting the head
- Pill splitter/crusher: ease swallowing pills
- Pizza cutter instead of knife: ease of cutting food with one hand
- Plastic bibs with pockets and/or disposable bibs: catch food if it falls
- Plastic cup with handles, cup with screw on top, sippy cup: ease of picking up cup, small amount of liquid to help avoid spiling or swallowing too much at once
- Rubber shelf liner or silicone placemat: can be used to prevent plate from sliding
- Scoop plates or plates with deep rims: keeps food on plate
Due to the common issues with swallowing in PSP, CBD and MSA, buildup of phlegm and mucus can occur in PSP, CBD, or MSA. Speaking with a speech-language pathologists to evaluate swallowing can help alleviate this issue as well as these recommendations below.
- Flonase: dry up post-nasal drip
- Flutter mucus clearance device: thin mucus
- Orajel: mouth sores
- Diflucan: mouth ulcers
- Oral suction devices: person is unable to clear secretions (phlegm) when they cannot produce enough force on coughing
- Mouth moisturizing spray: help ease dry mouth
- MucoMist: thin and loosen mucus
- Nebulizer: thin mucus, speak with pulmonologist
- Portable suction machine: removing obstruvtions – like mucus, saliva or secretions – from a person’s airway
Maintaining good oral hygiene will help prevent future problems with infection and pain. It will also promote the care receiver’s integrity and comfort. There is another important reason for the person to maintain good oral hygiene. As the disease progresses, swallowing problems develop because of throat muscle weakness and coordination. Good oral hygiene may not prevent aspirating during eating and drinking, but it will minimize additional bacterial growth in the mouth that could be aspirated during coughing or choking spells.
- Electric Toothbrush: thorough cleaning of the teeth, uses less hand motion
- Non-fluoride toothpaste: eliminate swallowing fluoride
- Open Wide mouth rest: helps mouth to stay open when brushig
- Oral swab with long handle: clear mouth of food and cleanse interior of mouth
- Surround toothbrush: clean all surfaces of the teeth at once
- Ultraclean dental flosser with handle: provides easier access to teeth
As these conditions progress, overall hygiene becomes more difficult due to balance and vision problems; stiffness and slowness of movement. All contribute to difficulty for the person diagnosed in maintaining their general hygiene.
- Electric face wash device: ease of washing face
- Electric razor: ease of shaving
- Gillette trio: safer and easier for care partner to use on patient
- Grab rails and bars, especially for shower, tub, bathroom: safely move around
- Hand-held shower head: ease of washing
- Non-skid rubber bathmat: safely manouver while bathing and showering
- Roll in shower: flat or curbless threshold to easily access shower
- Tub transfer bench: enter tub with ease
- Shower chair: avoid falls in shower
- Swivel shower bench: ease of showering safely
- Waterproof shower accessible transport commode medical rolling chair: ease of showering safely
- Wheelchair accessible portable shower stall: separate shower stall to ease showering while in wheelchair
- Mild soap: for sensitive skin
- Benzoin: pressure ulcers
- Sheepskin under pressure areas: to prevent pressure sores
Incontinence and constipation are fairly common as PSP, CBD and MSA progress. Often the person diagnosed has balance issues and is at risk for falling, especially overnight.
- Abena Abri-Form Premium M4 catheter
- Reusable Male Comfort Fit AdvantageMale (external catheter/condom catheter): alternative to indwelling catheters and easier to use and less invasive
- Men’s Liberty, Coloplast, Bard 32mm: catheters
- Depends: incontinence
- Bedside commode, urinal, bedpan: helpful to prevent trips to the bathroom and preventing nighttime falls
- Bidet: self-cleaning toilet
- Laxatives and/or stool softeners: help with incontinence
- Pads: for inside incontinence briefs
- Squatty Potty
- Toilet riser: ease for sitting on toilet
- Washable pads or disposable, plastic-lined pads: use under bed sheets
As PSP/CBD/MSA progresses, individuals with these diseases and their care partners must cope with the changes in their mobility, especially to prevent dangerous falls. A Physical Therapist plays an important role in the management of one’s mobility changes that occur as the disease progresses. They also make recommendations and provide training for equipment and devices that can make mobility easier and safer.
- 4-wheeled walker:basic walker
- Drive NitroRollator: folds up for ease of transport
- U-step walker:weighted walker with braking system
- BraunAbility Turny Evo: car seat swivel that makes it easier to get in and out of a car.
- Broda Tilt Chair: positioning wheelchair, back tilts
- Electric lift chair: stationary reclining and lift living room chair
- GOLDEN Literider Envy Power Chair:motorized wheelchair
- Grab rails and bars, especially for shower, tub, bathroom: safely move around
- Karma Ergo Lite 2: wheelchair
- Medline Ultralight Transport Chair: Lightweight (15 lbs.) wheelchair
- Motion Composites: Light- weight wheelchair/disassembles to put in car
- Peramobil m3: motorized chair
- Portable exercise bike pedals: used to strengthen legs while sitting in a chair
- RohoAirLite chair cushion: for comfort and to prevent bed sores
- Transport chair: general description for a wheelchair that can be folded up for ease of transport
- Wheelchair Footrest Leg Restraint Strap: to keep legs on footrest and prevent legs from dragging on floor
- Wheelchair seatbelt restraint: to prevent falling out of wheelchair
- Wheelchair tray: keep items close and wheelchair surface clean
The proper lift or assistive device makes a significant difference in the care partner’s ability to lift and transfer their loved one. For example, transferring their loved one from a wheelchair to a toilet, or lifting them to help get out of bed.
- Gait belt: assists with transfers and provides stability for loved one when used walking with care partner
- Patient Lift Stair Slide Board Transfer Emergency: transfer person from wheelchair to bed, car, or another chair; two people required
- SARA lift (Stand and Raise Assist): general term for the following 4 lifts: Invacare lift, Lumex Stand Assistive Device, Sabina lift, Bestcare Bestmove Stand Assist
- Hoyer lift: uses sling seat, and is safest when two persons help with this type of lift
These fall into 2 general categories: 1) devices and techniques to strengthen and amplify one’s voice and 2) devices when speech abilities no longer meet communication needs. Speech Therapists are familiar with both categories, and they should be consulted before purchasing a device because there are many ones from which to choose, and new devices are being developed regularly. Be mindful that some devices require good dexterity and often loss of dexterity occurs at the same time as does loss of voice.
- EMST Expiratory Muscle Strength Trainer: voice (and swallowing) muscle strengthener
- LSVT Global (LOUD program): speech therapy to increase voice loudness
- Chattervox: voice amplifier
- Spokeman: voice amplifier
- Telephone amplifier
- Control Bionics: eye controlled computer mouse
- Eyegaze Edge: eye-tracking and operated speech generating device
- Grid for iPad: designed for people with conditions similar to PSP, CBD and MSA. All-in-one Augmentative and Alternative Communication tool with content for everyone and innovated for all ages and levels of literacy
- Head Mouse (Smylemouse): hands free, facial recognition computer controller
- Letmetalk: place finger on images and this device takes them and talks in a sentence
- Picture cards, i.e. robe, bathroom, food, water: communicate needs
- SGD Lingraphica: place finger on images and this device takes them and talks in a sentence
- Talk to me technology: Device to use eyes to communicate on computer screen. Option to record one’s voice and then playback
- Tobii Dynavox: eye-controlled speech generating device
- Word Tray: alternative communication device with pictures one can point to
People with PSP, CBD or MSA develop a symptom known as impulsivity. To prevent unnecessary falls, care partners have found using one or more of the devices listed below has provided an alert for the care partner and has protected the patient from unnecessary falls.
- Apple watch: moniters fall and alerts to emergencies
- Bed monitor: starts to chime if patient moves off surface
- Baby monitor: view/hear activity in another room
- Chair alarm (in addition to the bed alarm): starts to chime if patient moves off surface
- Cordless doorbell to ring care partner (potentially connect to phone)
- Emergency alert systems and devices: extra safety precautions
- Hand bells: ring for care partner
- Video monitors in home connected to phone: safety for moving around the house
For the purpose of comfort and ease of dressing or undressing, our care partners and patients have found the following list of clothing, shoes, etc. very helpful. As an example, sometimes when it’s necessary for the care partner to assist the patient with toileting, easily removable pants makes the job much easier for both involved.
- Adaptive clothing showroom: website to purchase clothing
- Adult ‘onesie’: snaps that attach in the crotch area which keeps the shirt down and secured
- Clothing with Velcro closures, shirts have buttons and look like regular shirts: ease of putting on clothing
- Elastic waist pants: easily put on pants
- Helmet: protect head during potential falls
- Lightweight, supportive shoes with Velcro closures or elastic shoelaces
- Oversize outdoor jackets: ease of putting on jacket
- Padded pants, i.e. football pants/ski/snowboarding pants: keep saf in case of falls
- Slip on shoes: ease of sliding on shoes
- Sock assist: eas of putting on socks
The following list are recommendations from many of our care partners and are used for various purposes. You can google many of these devices.
- AMAneo (Assistive Mouse Adapter): helps to control computer mouse
- Alternating pressure mattress or “egg-carton” pad: comfort in bed
- Bed rail: safety precaution tostay in bed
- Doughnut cushions: round cusion to releve pressure while sitting
- Button connected to lamp to turn on/off: ease of using lamp
- Car assist handle/car cane: helps people to get in and out of a car
- Cpap: continuous positive airway pressure machine is the most commonly prescribed device for treating sleep apnea disorders which many of our patients have been diagnosed with.
- Drive Medical Adjustable Height Home Bed Assist Handle: ease getting in and out of bed
- Emesis basin: a basin used by bedridden patients for vomiting
- Foam corners for tables: used to prevent serious injury when falls occur
- Hospital bed that elevates (to 40%) or flexible frame: patients sleep better when they are elevated
- Magnifying glass (clamp to table) with light: assists with reading
- Non-slip skid pads for chair/tables: helps to prevent a patient from sliding out of a chair
- Ramps: It helps to have a ADA specialized company install or recommend one to ensure the angle is ADA compliant.
- Seatbelt extender: ease for partner to strap on seatbelt
- Transfer disc, pivot disc, swivel seat cushion: helps with transfers
- Wider doorways: doorways, especially to the bathroom, should be wide enough for a walker/wheelchair to clear. Best to consult with a OT or PT to discuss.
- Wrist strength recovery massage ball palm grip: Also can be used to keep the hand from closing shut which is common to some patients with PSP or CBD
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
- 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
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 https://www.psp.org/wp-admin/post.php?post=11171&action=edit#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