The “Women on Wellness” Zoom group is for women with FSHD to discuss female-focused health and other topics. These notes are from the November 3, 2021, meeting, which began with discussion about finding clothing that is easier to manage. The group meets on the first Wednesday of every month at 5:00 pm ET. To join future meetings, please register.
Clothing “Hacks”
Shirts with Magnetic buttons –
Elastic waist band pants, extra large.
Skirts
Tights under leg braces with tunics worn over them
Fastening bras from the front
Hook bra in front and twist it around afterwards. Walmart and Target have front closer hook bras.
Looking for a racer back, front close bra. Maidenform has slide in and snap shut front open bra. You can snip the end of the underwire area and slide it out.
Wheelchair Dressing
lean back to be able to use arms for hair and others
pull out my dresser drawer to prop my arm to put shirt on.
When considering a wheelchair, models that can raise legs for leaning is helpful. Be sure your PT and OT knows how to order to conform to demands of insurance/Medicare
Dressing
Use grab bars to lean on
If you can stand/turn/sit, you can use sleeve garters to keep pants legs from slipping to thefloor when toileting
Pick up items with a back scratcher
Have closet area in bathroom with hooks fornecklaces
Button helper, a long closed loop that you put throughbutton hole to grab button (see image at right)
Oversize crochet hook to pull up boot zipper
Sleeping
Satin pjs and satin sheets to be able to turn in bed
Outerwear
Light, “slippery” fabric down or downlikeoversize jackets are easy on and off and warm
Can wear lighter jackets on cold days by using ‘hot shots’ in packets that you shake up and they heat up. Skiers use them to warm their hands
Sneakers
Leave them tied to put on. Have a standing shoe horn
Clips to the back of the shoe so it stands and can be slipped on
Use stretchy shoe laces that after you put the show on, stay in place
Bathing
Pre-dry with a washcloth and use a travel hairdryer to dry after
Toilets
Comfortable height – very helpful
Motorized lift toilet seats are great
Stand Aid of Iowa lifts straight up
Liftseat can lift straight up or can arc at the end
Bidet
Bought a platform to raise toilet, has bidet on top
Bidet very helpful as add on to toilet. Especially with water warmer and blow drying
For occasional incontinence – use extra long pads.
Very Informative and helpful.