Middle Stage Tips

Adaptive Equipment

As IBM progresses, adaptive tools become essential for maintaining independence. The right equipment can make a significant difference in daily life.

Hand and Arm Aids

• Built-up handle grips for utensils, toothbrushes, keys, and pens
• Velcro-strap glove aids to help grip objects
• Key turners and lever-style door handles (easier than knobs)
• Electric can openers and jar openers
• Button hooks and zipper pulls for dressing
• Lightweight reacher/grabber tools for items on high or low shelves
• Touchscreen stylus for phones/tablets if finger weakness makes tapping difficult

Mobility Aids

• Walking cane or trekking poles for stability
• Rollator walker with seat for longer outings
• Stairlift for multi-level homes (plan ahead — installation takes time)
• Wheelchair or scooter for longer distances

Home Modifications

Bathroom

• Install grab bars near toilet, shower, and bathtub (screwed into studs, not just suction cups)
• Shower chair or bench for seated bathing
• Handheld showerhead
• Raised toilet seat or toilet frame with armrests
• Non-slip bath mats
• Walk-in shower or walk-in bathtub (if remodeling)

Kitchen

• Pull-out shelving in cabinets
• Lazy Susans for accessible storage
• D-shaped cabinet handles instead of knobs
• Stovetop fire extinguisher (in case of falls while cooking)
• Seat or stool for tasks that can be done sitting

Bedroom

• Adjustable bed or bed risers for easier transfer
• Bed rails or transfer pole
• Firm mattress (easier to get out of than soft)
• Bedside table within easy reach
• Good lighting with easy-access switches

General

• Remove throw rugs and tripping hazards
• Ensure clear pathways through the home
• Install motion-activated nightlights
• Consider a single-floor living arrangement if stairs become impossible
• Lever-style door handles throughout

Modified Exercise

• Transition to seated or aquatic exercise as standing becomes difficult
• Focus on maintaining range of motion and preventing contractures
• Use resistance bands instead of free weights
• Prioritize balance and transfer training
• Continue hand and finger exercises to maintain function
• Work closely with your physical therapist to adapt your program

Driving Modifications

• Hand controls for accelerator and brake (if leg weakness progresses)
• Spinner knob for steering wheel
• Extended key reachers
• Power door locks and trunk openers
• Seat swivel devices for easier entry/exit
• Contact your state's vocational rehabilitation program for driving evaluations

Swallowing Safety (Dysphagia)

Dysphagia affects approximately half of IBM patients and is one of the most serious complications. Aspiration pneumonia is the #1 cause of death in myositis patients.

Diet Modifications

• Follow the IDDSI (International Dysphagia Diet Standardisation Initiative) framework for food texture levels (iddsi.org)
• Thicken liquids if thin liquids cause coughing
• Alternate solids and sips of liquid during meals
• Choose soft, moist, easy-to-swallow foods
• Avoid dry, crumbly foods (crackers, rice, popcorn)
• Cut food into small pieces and chew thoroughly

Positioning and Technique

• Sit upright during meals and for 30 minutes afterward
• Tuck chin slightly when swallowing (the "chin tuck" maneuver)
• Take small bites and small sips
• Eat slowly and without distractions

Warning Signs

• Coughing/choking during meals
• Wet vocal quality after eating
• Frequent throat clearing
• Unexplained fevers or pneumonia