Assistive devices and adaptative equipment to help with vision and eye symptoms:

• Audiobooks: Ease straining of eyes
• Large print books or tablets
• Botox injections: help to keep eyelids open (done by neurologist)
• Eye drops: GenTeal Tears Lubricant Eye Gel, Refresh Plus, Restasis and Systane Drops Moisturizing Eyes
• Hat with a bill or rim: help with light sensitivity
• Punctal plug: placed in the tear duct of each eye by an ophthalmologist to reduce tear drainage and keeps the eyes moist
• Prism glasses: Can help when a person is having difficulty looking down
• Dark glasses: Decreases glare to help with light sensitivity
• Warm washcloth: Comfort sore eyes
• Surgical tape: Keep eyelids open
• Smart speakers: For timers, weather reports or to call or text others
• Low vision apps on the phone to help make use easier
• Adding brighter light bulbs or more fixtures to help the person see
• Night lights to make it easier to see in the dark

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.

Assistive devices and adaptative equipment to help with eating and drinking:

• Blender: To puree food
• Insulated dish: To keep food warm
• Large handle and weight utensils: Designed for easy grip
• Angled utensils: Helps with stiff wrists
• Liquid thickeners: Helps make swallowing easier
• Nosey cups: Have an opening for the nose allows drinking without lifting the head
• Pill splitter or crusher: Helps to swallow pills
• Pizza cutter or rocker knife: Use instead of a regular knife to help cut food with one hand
• Plastic bibs with pockets and/or disposable bibs: To catch food if it falls
• Plastic cup with handles, cup with screw on top or sippy cup: Prevents spills
• Rubber shelf liner or silicone placemat: Prevents plate from sliding at the table
• Scoop plates or plates with deep rims: Helps keep food on the 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.  

Assistive devices and adaptative equipment to help with symptoms in the mouth, throat and nose:

• Flonase: Dries up post-nasal drip
• Flutter mucus clearance device: Helps move thin mucus from throat and nose
• Orajel: Ease pain of mouth sores
• Diflucan: Treats mouth ulcers
• Oral suction devices: Helps clear phlegm when they cannot produce enough force on coughing
• Mouth moisturizing spray: Helps with dry mouth
• MucoMyst: Thins and loosens mucus to make it easier to remove
• Nebulizer: Can turn certain medications into a mist that can be inhaled (speak with a pulmonologist)
• Portable suction machine: Helps remove mucus, saliva and other secretions from the airways
• 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 can prevent infection and pain. Assistive devices to help maintain good oral hygiene:

• Electric toothbrush: Reduces need for hand motion
• Non-fluoride toothpaste: Less risk when toothpaste is swallowed
• Open Wide mouth rest: Helps mouth stay open with brushing
• Toothpaste dispenser (pump or hands free)
• Suction toothbrush: A toothbrush attached to a suction device to remove fluids during brushing
• Oral swabs: Clear mouth of food Toothettes, Sage Foam Oral Swab, McKessin Oral Swabs with Dentifrice, or Monkcare Disposables Oral Swab Sticks Suction bulb or a portable oral suction device
• Water irrigating device or water flosser: Waterpik Cordless Profloss, Panasonic Dental Flosser, Sonicare Air Flosser or WaterPik Water Flosser
• Tongue scraper: Gum Dual Action Tongue Cleaner and Scraper or Brosite Tongue Cleaner Scrapers
• Dental Wipes: EZGO Deep Cleaning Teeth Wipes, Hisight Fresh Breath Deep Cleaning Teeth Finger Brush or Lurrose Disposable Finger Toothbrush
  

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. Seeing an occupational therapist can be helpful for maintaining independence or reducing  caregiver burden for basic self care.

• 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 while seated
• 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 while seated 
• 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. Falls in the bathroom can be especially dangerous due to hard sharp surfaces in a bathroom.  Occupational therapy can hep with equipment recommendation and training to prevent bathroom falls.

• 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
• Toilet tongs: extend arm to hold toilet paper
• Laxatives and/or stool softeners: help with incontinence
• Pads: for inside incontinence briefs
• Squatty Potty
• Toilet riser: ease for sitting on toilet
• Over toilet safety bars: easily attached to a toilet to prevent falls 
• 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.

Category 1:

• 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

Category 2:

• 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
• Floor mat alarms: alert after fall 
• Cordless doorbell to ring care partner (potentially connect to phone)
• Emergency alert systems and devices: extra safety precautions and will provide video alerts of movement and auditory alarms with opening doors or windows
• 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. Seeing an occupational therapist can be helpful for maintaining independence or reducing  caregiver burden for basic self care.

• 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
• Dressing Hook: long length eliminates the need to bend or overextend while getting dressed
• Reacher or Grabber: extending your reach and grip on items that are too far or high away
• Sock aides: ease 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

Taking prescribed medications is vital to managing the symptoms related to your neurological diagnosis as well as other diseases you may need to manage. At times, it can be a challenge to remember to take your medications. Or you may want to proactively set up good habits and routines. If managing medications is a challenge for you, try these suggestions and talk to your healthcare team (including neurologist, occupational therapist and pharmacist).

Ask a family member, friend or professional caregiver to check the medications you are taking in order to increase the likelihood of taking medications correctly and on time

• Take your medications on time, as prescribed by your physician(s)
  • Some medications only work for a specific amount of time (e.g., carbidopa-levodopa) and must be taken at a certain time and at certain intervals in order to optimize their effect
  • Never increase or stop medications abruptly or without the guidance of your prescribing provider
  • If you have questions about your medications, like the timing, potential side effects, dosing, whether or not to take with food, or interactions, ask your healthcare team
• Take 1 pill at a time (rather than putting multiple pills in your mouth at once) and swallow with liquid (rather than dry swallowing)
  • Using the chin tuck technique and taking pills with thicker liquids can make swallowing them easier
• Create habits and routines around taking your medications and keep your medications in a visible spot that you link taking with your routine
  • Like brushing your teeth or making coffee
• Pill box – to organize and track your medication schedule (including helping you double check you are taking the correct medications at the correct time)
  • There are a variety, such as those that are1x daily up to 4 times daily to plan for a week, some that dispense pills, and some that have built-in alarms
• Have a plan for when you are not at home to take medications – something to carry them in and a way to remind yourself to take them
• Use pen and paper to check off when medications are taken
• Use the health app or a medication app on a smart phone to track
• Use smart speaker like Alexa or Google Home, and/or your phone, to set alarms for when to take medications
  • Take the medication(s) as soon as the alarm goes off in order to reduce the chance of forgetting if you get distracted by a task
• Ask your pharmacist to fill your medication in bottles with “arthritis-friendly” bottle caps for easier opening
• Some in-store and online pharmacies can offer individual packaging or in bubble packs
  • These can help with tracking what medications to take when but can be tricky if you have a complicated medication schedule or you think your medication regime will change every few months