Page 18 - 2020 Spring CMTA Report

Community Members Offer

HELPING HANDS

CMTers all have tips. They are gained through hard-won experience and passed
along like family treasures. They are shared at branch meetings, patient/family
conferences and fundraising events. Some are merely helpful; others are life-changing.
These nuggets of wisdom help those of us with CMT get through our lives and
accomplish our goals with as little unnecessary friction as possible.

In 2016, the CMTA published Work with a physical therapist,
101 Tips for Living with CMT. occupational therapist or athletic
Community members kept trainer for proper form when
sending the CMTA tips, even exercising/working out. This
after publication. Here we share can include how you hold/grip
a few hand-related tips: hand weights and proper
hand/finger/thumb placement
TIP: Take Care of when using sports/strength train-
Your Hands ing equipment like Therabands,
Pilates straps or lateral pull down
By Lisa Weiner
bars. Participate in yoga classes by TIP: Try Liftware
and pain, weakness and fine a certified yoga instructor who can
motor deficiencies progres- teach proper hand placement dur- By Brian Bourgault
Hsively worsen with CMT. ing various yoga poses. Common survived the first 33 years of life
After experiencing sharp thumb yoga postures, like downward fac- without ever knowing that I had
pain while doing my regular Thera- ing dog, place intense pressure on I CMT. In 2003, I began losing
band exercises, I consulted with a hand flexion. strength in my hands and when I
Stanford orthopedic hand surgeon. Yes, most of us struggle with finally went to see a neurologist in
She diagnosed a ruptured ligament fine motor tasks, including pick- 2005, I was diagnosed with CMT.
type structure, called ing up/holding credit cards or The progression from 2005 to
the volar plate, at loose change, buttoning or zipping present has been rapid and severe.
the base of my left clothes, handwriting, and hold- I have lost use of my left hand
thumb joint. ing/using eating utensils. And yes, completely, and can move only the
I encourage we experience hand weakness, ring and middle fingers on my
everyone with often utilizing adaptive aids for right hand. I also have extreme
CMT to care tasks like opening jars and bottles. weakness in both arms and shoul-
for their Occupational hand thera- ders. Preparing and eating meals
hands. pists not only possess has become the most difficult task
expertise in recommending in my daily life. Unable to grip
specific adaptive equipment, utensils and barely strong enough
they teach hand strengthening to move food from the plate to my
exercises and alternate methods mouth, I developed a technique of
of accomplishing daily living standing up to eat so I can bend
tasks. Employ hand and wrist over the plate, moving my mouth
braces or custom splints, if to the food.
needed, when doing chores or As you can imagine, this
other excessive hand use activities. made eating out rather impossible
Get hand massages and paraffin until I discovered Liftware
wraps, and keep hands hydrated (www.liftware.com) in November
with lotion or oil. Your hands will 2016 and quickly ordered the
thank you for it. Level starter kit. My Liftware

18 THE CMTA REPORT SPRING 2020