CMT News Article from Minnesota

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http://www.cloquetmn.com/journal/index.php?sect_rank=5 & story_id=151991

Our Neighbors ... Danita Saunders

WENDY JOHNSON

The Pine Journal

Danita Saunders looks like a normal, healthy, vital young woman. She has

a college degree, a successful career, three active children, a charming

home of her

own – and CMT.

Charcot-Marie-Tooth disease (CMT) is a neurological disorder named after

the three physicians who first described it in 1886 – Jean-

Charcot and Pierre Marie of France and Henry Tooth of the United

Kingdom. The progressive, muscle-wasting

disease leads to problems with walking, running and balance and

decreased sensitivity to heat, touch and pain in the feet and lower

legs.

And though most people have never heard of CMT, it affects some 115,000

Americans.

“I think because it’s not life threatening, a lot more money goes toward

research in other diseases,” said Saunders.

CMT is also the most common inherited neurological disorder and can

sometimes be passed on from one generation to another.

“My brother and sister have known for a good decade or so that they have

CMT,” said Saunders, “but I just found out a couple of years ago that I

do, too.....”

Saunders went on to explain that just as with multiple sclerosis, the

lining of the nerves falls apart in those having CMT.

“With MS, it affects the central nervous system, so it can be more

serious and impact the lungs and eyesight,” she said. “CMT, however,

affects the peripheral parts of the body, like the hands, wrists, arms,

and the lower legs in the ankles and feet.”

Since September is National CMT Awareness Month, Saunders is eager to do

her part in telling others about CMT and helping out others wherever she

can in understanding or coping with the disease that has been a silent

part of her own life for many years.

Saunders was born and raised in Duluth and graduated from St.

Scholastica as a

registered dietitian.

During the 1980s, she worked as a clinical dietitian at St. ’s

Medical Center. She later started doing consulting on her own, working

for various weight loss clinics, doing some work around Carlton County

as well as at a nursing home in Superior.

She and her husband bought a home on Chub Lake in 1985, and after they

later divorced in 1991, she stayed on in Carlton County until 1995.

She and her three young children then decided to move to the Twin

Cities.

Already struggling with fatigue and work issues, she hoped the move

would open up a new, and more positive, phase of life for her.

“I didn’t really see this coming, but the pay rate in Minneapolis was

actually less and there were a lot of dietitians down there, so there

was more competition for jobs,” said Saunders. “Big companies were

coming in and taking over the consulting work, so I found I

couldn’t work part time and make enough money to live on.”

She decided to leave her field for a time and went on to train and work

as a consultant for a technology company.

“About the same time when the bust was happening in technology,” she

said, “my mother was dying and the company I worked for was starting to

have trouble so I was working doubly hard. What I began noticing was

that although I would make sure my kids were in school

and taken care of in the summer, I’d come home from work and I was just

exhausted. I started to feel like, ‘I have to make a choice here –

either I work or I take care of my children.’ I didn’t feel like I could

do both.”

By 2000, she started to become really exhausted and unable to work.

“I kept on running into total exhaustion and had to take frequent

breaks. I felt really bad about it and even experienced some depression

because I didn’t know what was going on with me,” Saunders said. “I

remember talking about it with a really good friend, who told me her

mother-in-law had to learn to take breaks, too – but she was 90 years

old! I felt just like an old woman....”

At about that point, Saunders had been going to a chiropractor who

suggested, based on her symptoms, that she should have an

electromyograph (EMG), a diagnostic procedure that measures the

electrical signals in the muscles. When she did, the doctors also talked

with her about her family background and discovered they had a history

of CMT. In fact, so did Saunders herself – though she’d never really

acknowledged it.

“About five years ago, I broke both feet in a fall, and I didn’t know

then that I had CMT,” she said. “Now, it’s pretty obvious that it was

due to weakness in my ankles. Also, about 12 or 15 ago, I broke a foot,

and there’s been countless sprains since then. I don’t why I didn’t

figure it out, but we always figured I was the athletic one in the

family! We just figured my sister and brother had it but not me – just

that I was something of a klutz!”

Saunders now knows she has probably had CMT for quite some time, but it

was no doubt due to the stress of her job and the stress of her mother’s

death that brought it out.

She was diagnosed with CMT three years ago, and not long afterward, she

and her brother and sister underwent genetic testing and found out that

their family’s particular gene mutation is one that has never been seen

before. There are now some studies being

done on their family to try to determine specifically where the gene

came from that has caused the occurrence of CMT.

“So far, we have only been able to trace it back as far as my dad’s

generation,” Saunders said. “He died when I was 10, so we don’t really

know if he actually had CMT, but I have an uncle who’s had a couple of

foot surgeries and is having difficulty walking. The specialists that we

go to at the University of Minnesota want to test him for it.”

“Some people with CMT develop lung problems later in life,” she

continued, “and my grandfather died of an unexplained illness where he

couldn’t breathe. My brother and a cousin of mine are both on machines

that help them breathe at night because they have sleep apnea, which is

also typical of a fair number of people who also have CMT.”

After Saunders was diagnosed with CMT, she felt a certain sense of

relief at knowing what was wrong with her, but its symptoms continued to

disable her.

“From that point on, I pretty much knew I could only do part time work,

so I had a hard time affording my home in the Twin Cities because homes

there are more expensive and mortgages are higher,” she said. “It was

like I was in a fog, but I was relieved to know what was going on.”

Her plan was to get back up north again, where houses and the cost of

living were less expensive. She sold her house in the Twin Cities, which

gave her a decent down

payment to buy a house in Cloquet.

She has been working only part time ever since she and her children –

now ages 11, 13 and 15 – moved back to this area last spring, and

learning to cater her work and family obligations to her physical

limitations.

“It’s one of those things,” she reflected, “ – you only have a certain

amount of energy, and if you use all of it by noon, you’re going to be

flat out for the rest of the

day, so it’s the kind of thing where you have to learn to pace yourself.

I’m not much of a pacer, so it’s been a big adjustment for me.”

Saunders said the Muscular Dystrophy Association funds treatment for

CMT, such as assistance in specialist visits, help with expensive blood

testing, and the new, high-tech leg braces she has had for the past two

years.

“I don’t have to wear them all the time, but they’re real energy

savers,” she said. “I was tired for so long and found that it took twice

the effort to do half the work.

Now, if I have a lot to do in a day and then use the braces when I go

shopping, I’m not so tired out late in the day. Or let’s say I’m tired

out and still have things to do, if I wear them, it seems to make a

difference. It may get to the point where I have to wear them all the

time – it’s a safety issue so I don’t risk falling.”

Saunders was just at the U of M in August, where she was told she only

has 10 percent of her nerve function left in her legs.

“I couldn’t help but think, ‘You’re kidding me!’” she said. “But I’ve

lived with it for so long, I think other parts of my body have learned

to compensate. I really enjoy walking, and my thighs are pretty strong.”

Other things have been more difficult for Saunders, however.

“For me, the hardest part has been the downturn of expectations,” she

said. “Everybody sets goals for themselves as far as what they’re going

to do, but now I have to really slow things down and be more realistic

about what I can accomplish.

“One of the tough things for me is wanting to make my children proud of

me,” she continued. “When they were too little to remember, I was

working full time and they

weren’t aware that their mom really had it going on. But it’s a struggle

now, and for me, it’s a fear of failure in work because I still want to

say yes to everything. But then the limits sink in.”

While Saunders admits that CMT is little-known by most, it was brought

into the spotlight recently when NBA basketball player Todd MacCulloch

of the Philadelphia 76ers was diagnosed with it.

“MacCulloch was recently disabled by it and taken off his team,” she

said. “That was the one time it ended up in the media. Sometimes it

takes a celebrity to make people aware of something like this.”

“Todd the Bod” MacCulloch was a bright and rising star in the NBA when

he began to experience tingling in his feet that progressively worsened

and spread to his hands. After months of sleeplessness, anxiety and

weight loss, MacCulloch was diagnosed with CMT and had to step back from

his career and began to devote full time to taking care of his own

physical well-being.

Saunders said it definitely helps for people to know about what CMT is

and how it affects the people who have it.

“Out in the world, I sometimes get the sense that people don’t

understand when I say no to some things,” she said. “I look perfectly

normal and I feel really good – and I want to look normal – that’s

something I’d really like to hold on to. I don’t want to lose the

ability to blend in. But sometimes, I wish people could only understand

that I’m dealing with limited energy. But then it occurs to me, there’s

a ton of people out there

with something going on themselves....”

In her work as a dietitian, Saunders’ specialty has been obesity and

helping people deal with it.

“Obesity is a chronic illness for some people,” she said. “People judge

them as they see them. Dealing with CMT kind of gave me a new

appreciation of that whole thing – how other people feel when they are

being judged by the work ethic that tells them to push on and

never say no.”

Advanced CMT can sometimes necessitate the need for use of a motorized

scooter or walker to get around, such as with Saunders’ sister.

“Sometimes I’ve had really tired days myself,” Saunders said, “and I’ll

go to a grocery store with the kids and use one of the scooters they

provide. It’s hard for them at the ages they are, though, when that

image thing is so important to them.”

There’s no cure for CMT, but there are, however, some medications for

the nerve pain. Physical and occupational therapy are also helpful in

coping with the stiffening of muscles.

Lately, Saunders has been pursuing working at St. ’s with various

wellness opportunities, perhaps in their outlying fitness centers.

“I have this drive to work with people with chronic illnesses,” she

said. “I always enjoyed working with them, but now, there’s this extra

understanding of what people go through.”

Saunders recently obtained a certificate in Adult Weight Management from

the American Dietetic Association, and she said she is interested in

finding people interested in one-on-one support for weight loss.

Saunders is also hopeful of forming a local support group for people

with CMT in northeastern Minnesota, since currently, the closest group

is in Minneapolis. If

anyone has CMT and would be interested, they are encouraged to contact

her.

“Also, if they wonder if they might have CMT themselves, I could give

them information on how to go about getting a diagnosis and/or

treatment,” she added.

Today, Saunders is proactively coping with her CMT and living life as

fully as she can.

“A few years ago, things got really difficult for me, but now – well,

we’re not rich, we’re not rolling in the money, and the budget is tight

– but everything is OK and life is pretty stable. I feel much better now

that I know about it because I can do what I need to do.”