The Mane Game: Looking Beautiful When Hair Care Is 'a Reach’

We all want to look our best, even when grooming is a ‘monumental chore’

Article Highlights:
  • Kristal Hardin, who has limb-girdle muscular dystrophy, offers tips from occupational therapists and hair stylists about ways to maximize strengths and minimize weaknesses for successful hair grooming.
  • Hardin cites several adaptive grooming products and tests out a few on her own tresses.
by Kristal Hardin on October 1, 2012 - 9:20am

QUEST Vol. 19, No. 4

Lather. Rinse. Repeat. Sounds easy enough. Unless there’s a neuromuscular disease involved. Then it can become one more monumental chore, along with all the other daily required grooming tasks.

Kristal Hardin
Author Kristal Hardin

Hair matters. We want our best physical appearance to be the first thing people see, including the mane, mop or strands of hair on our head. Most of us should, would or do spend the big bucks to make it look its best. So when we can’t make our arms work to make this pile of fluff and stuff make nice, it’s as if the world is ending. It used to be mainly a woman’s woe, but according to the advertising world, today even men succumb to despair on a bad hair day.

All the dystrophies have something in common — the degeneration of muscle tissue, resulting in a lack of strength to properly care for one’s own needs.

I have limb-girdle muscular dystrophy. The disease progression is so gradual that I don’t notice the “quirky” things I do to adjust in my daily routine. Since my arms refuse to lift my hands above shoulder height, I’ve discovered that my elbow is my best support to take care of my hair needs. These wrinkled, crinkled, bendable joints prop me here, anchor me there. I’ve become a skilled contortionist worthy of joining a professional circus act.

Elbow up, I wash my hair in the shower. Elbow down, I blow dry my hair leaning on the bathroom counter. Elbow up against bathroom wall, I finish the hair grooming process.

This maneuver is not foolproof. Due to my lack of back muscle control, one slip can lead to a catastrophic event. I’m either a “floundering fish” face forward in the sink or a “wailing whale” beached and hollering for help in the shower.

So what does the commercial world have to offer that could minimize the risks of something as simple as “hair grooming,” which is often a major chore and time-consumer for the neuromuscularly challenged?

Let’s take charge of our grooming and see!

Step 1: Find useful strategies and adaptations

Note: Click on photos to enlarge.
Homecraft long-handled combs and brush
Homecraft long-handled combs and brush — $15-$19, Patterson Medical (keywords: long-handle comb); (800) 323-5547
Norco Universal Quad Cuff
Norco Universal Quad Cuff — $12.50, NC Medical (keywords: quad cuff); (800) 821-9319
Pro-Stand hair dryer stand
Pro-Stand hair dryer stand — $12, Amazon (keywords: hair dryer stand)
Zonco Valet mobile arm support
Zonco Valet mobile arm support — $480 base price, ZoncoArm; (507) 581-6638
Sage Comfort rinse-free shampoo cap
Sage Comfort rinse-free shampoo cap — $4.75, Allegro Medical (keywords: rinse-free shampoo); (800) 861-3211
Conair hot air curling brush
Conair hot air curling brush —
$14.50, Amazon (keywords: hot air brush)
Rust-Oleum spray grip
Rust-Oleum spray grip — $6; Amazon (keywords: spray grip)
Etac Beauty hair washer
Etac Beauty hair washer — $11,
Amazon (keywords: hair washer)
Faucet-to-shower converter
Faucet-to-shower converter —
$4.20, Amazon (keywords: faucet to shower)

Occupational therapists are very familiar with the plight of bodies running on less-than-optimum strength. Listed below are suggestions on how to maximize strengths and minimize weaknesses.

“There are countless options for grooming assistive devices,” says Tara Haas, an occupational therapist (OT), certified hand therapist and supervisor of outpatient occupational therapy for the University of Colorado Hospital (UCH).

First, define your specific limitations, says Haas. For example, do you primarily have generalized gross motor/large muscle upper-extremity weakness (in the shoulder, elbow, etc.), or is your problem more fine motor weakness, such as decreased grip and pinch strength?

Whenever possible, modify your environment, advises Vicki Pollyea, an OT from Tampa, Fla. (Pollyea has Charcot-Marie-Tooth disease and currently leads the Tampa Bay Area CMT Support Group.)

For those with upper extremity weakness, elevating the height of your bathroom counter can help because “resting your elbows on an elevated surface allows your shoulders to rest,” Pollyea says.

Loop scissors, a long-handle comb and brush, and a hands-free hair dryer also can assist those with shoulder weakness, says Sung Yu, an OT in the Cedars-Sinai Amyotrophic Lateral Sclerosis Program in Los Angeles.

For those with grasp weakness, Pollyea recommends grooming tools with enlarged handles. Make handles larger using soft foam from curlers, or pipe insulation that already has a slit in it. Wrap the new handle with duct tape to secure it to your brush or grooming tool. A rolling tray keeps these items at hand or moves them where necessary.

For those with no grasping ability in their hands, Pollyea suggests a C-Cuff which fits around the palm and has a slot for inserting the grooming tool.

Lighter and long-handled tools usually are easier to use, says Victoria Channell, an OT who works at UCH occupational therapy department and Mountain States Hand Physical Therapy in Boulder, Colo.

The ultimate in assistance, says Channell, is an infinitely adjustable arm-support device that attaches to your wheelchair arm rests. The purpose is to give support at the arm/forearm level so that you don’t have to hold up your arm “and can groom with better ability.”

Step 2: Find the right tools

“Almost every item sold is found useful by someone or it would be discontinued,” says Susan Salzberg, a recently retired OT from the Veteran’s Hospital in Durham, N.C. The trick is to find the right tool for you.

Fawnda Steelman, an OT for the University of Arkansas for Medical Sciences (UAMS) notes, “The desire to use grooming aids depends on how independent a person is and how highly motivated and active a person wants to be.” For example, a person may want grooming aids because they find that their caregiver does things too fast or too slow for their liking, she says.

“Most of us aren’t made of money, so start asking around [about assistive products],” Steelman advises, adding the warning, “Anything new requires patience and motivation.”

OT departments at medical centers and rehab hospitals often have samples of suggested tools.

Trying out a piece of equipment prior to purchase can save money and effort, Pollyea says. She recommends searching the online video site for ideas. “You can find amazing modifications from the ‘simple to complex’ for grooming and other ideas for people with disabilities.”

Yu uses the MDA equipment loan program when possible. “If the patient doesn’t have insurance, I look into the loan closet for any equipment. Or if I am working on getting equipment through insurance, I may tap into the loan pool as an interim until my patient receives his or her equipment.”

(Contact your local MDA health care service coordinator to find out more about the equipment loan program.)

Walgreens, Target, Wal-Mart and local drugstores often will carry lightweight, long-handled and hands-free products online, but not always in their stores, notes Channell. Amazon is another good place to search.

Step 3: Talk to your hair stylist

Shave it off! This option works for the adventuresome and those with perfectly shaped heads. But in reality, bald doesn’t work for most people.

Due to her own distal and proximal weakness because of type 1A CMT, Salzberg recommends focusing on energy conservation, advising, “Don’t do anything that doesn’t need to be done.” She offers a simple suggestion for playing the mane game: a pixie cut.

Tiffany Hardin of Tampa, Fla., a hair stylist for 15 years (and also my daughter), has observed my personal struggle with proximal weakness for years. Ever sensitive to my plight with my “tresses,” she has five helpful hints for those with upper-extremity weakness.

Color or perm your hair. Chemically treated hair can go longer between washings so people can style their hair less often and refresh their style with less energy.

Use dry shampoo. This spray powder is not washing your hair, but the powder absorbs the oil from the hair and scalp. Suave is one brand that is good and affordable.

Try a hot air brush. Allow hair to dry naturally until it is about 75 to 85 percent dry, then use the brush to lift or bend the hair. (Do not use on hair that is soaking wet.)

Be open with your stylist about the progression of your disease. When deciding on a hair style, tell your stylist what you can and can’t do physically. “Short” hair does not necessarily mean less work.

Quality shampoo, conditioner and tools do matter. This is one place you don’t want to skimp or save. Quality products are more concentrated, meaning less of the product is needed.

Step 4: Test and try

In the spirit of investigation, I set out to find out what works for me — and what doesn’t.

In addition to several of the products suggested above, I purchased a shampoo cap and a spray gun handle to use on my can of hair spray instead of a can of spray paint. And for the times when I need help, I purchased a hair washer tray and faucet-to-shower converter.

Products in hand, I sat cross-legged in my lift chair. With bated breath, I opened the foil wrapper and pulled out the soft, vinyl shampoo cap. After 15 seconds in the microwave, the warmed cap was ready to clean my hair with absolutely no muss and fuss. While under the cap, I used the long-handled hair washer to massage my scalp. Two to three minutes later, cap off, I towel dried my hair.

The hot air brush was next. I used the long-handled hair brush and a couple squeezes on the hair spray gun handle for the final touches.

I found the shampoo cap a pleasant surprise. My hair felt clean enough to go another day or two before I washed it again. The long-handled hair washer was great for reaching and scrubbing the scalp without straining. On the other hand, the long-handled hair brush was a little challenging when attempting to brush the top and back of my head.

The hot air brush difficulty level was high. I had to lean on the arm of my lift chair to curl dry the top and back of my head. My arms tired trying to curl and hold the hot air brush up at the same time. Truth be told, my daughter had to put the final touches on my “do.”

My disclaimer: Patience may be needed, necessary or required to get the most benefit from these products.

Lather. Rinse. Repeat. It’s still a challenge. But isn’t independence worth the effort?

Kristal Hardin of De Queen, Ark., is a former freelance writer and columnist for the De Queen Bee. She has limb-girdle muscular dystrophy. Her last article for Quest was the From Where I Sit opinion column in the Summer 2012 issue, titled Going Out: Sometimes I Wonder ‘Is It Really Worth It?’

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