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      Moorhead, Minn. (AP) - Brenda Rehder recently found a note,
written in scolding capital letters, left on the dash of her car:
"You! are abusing the handicapped parking program. Shame."


      To the casual observer, Rehder is the picture of health and
vitality: trim, fit, enthusiastic.


      But anyone who watches closely can see hints that she has
difficulty walking. In fact, she has special shoes equipped with
braces to help with her handicap.


      Unseen, a rare spinal cord disorder is causing her muscles to
become progressively weaker and more spastic.


      So rare that Rehder, a 35-year-old single mother, is one of only
an estimated 24,000 people in the United States and Canada with the
condition.


      Some day the weakness in her legs will require her to use a
walker or maybe even a wheelchair. There is no way to predict the
whims of the disease.


      And there is no cure. Because the disease is so rare, only a few
researchers are working to unlock its mysteries.


      In Brenda Rehder's race against the ravages of time, the
tortoise of medical science is no match for the hare of the
disorder.


      It started as pain, a stubborn aching in her legs. Finally, when
the throbbing failed to subside, Rehder went to the doctor.


      Tests ruled out rheumatoid arthritis but gave her no answers.
The pain continued. Then it got worse, a burning sensation that
kept her awake at night and making her work as a dental assistant
almost unbearable at times.


      "It was to the point I would go home and bawl," she said.


      She went back in search of medical treatment, still expecting a
solution for her malady was readily at hand.


      "I thought they were going to tell me I needed arch supports,
and they sent me to a neurologist," she said.


      Tests eliminated multiple sclerosis, but the neurologist had a
sobering diagnosis. Something called hereditary spastic paraplegia,
or HSP.


      Despite its rarity, Rehder knew all about HSP the very disease
that had forced her father, Ron Mastrud, to retire early from his
job with the Happy Hooligans.


      The surprise in the Mastrud clan was that a female had inherited
the affliction, which previously had only struck males in the
family.


      Finally, her doctor found a drug to relieve her pain, a
combination muscle relaxant and anxiety medication. In the four
years since her diagnosis, Rehder's walking ability has gradually
declined.


      To learn more about the disease, she attended a meeting last
year of the Spastic Paraplegia Foundation in St. Louis.


      While there, she met Dr. John Fink, a University of Michigan
researcher, the leading expert on the disease. He told her the only
hope for a cure was through greater public awareness and more
research money.


      A bit of added motivation came from some good-natured ribbing
Rehder received from others at the convention, who teased her about
her North Dakota roots following a sketch by television host Conan
O'Brien poking fun at her native state.


      She returned home to Moorhead and raised $5,000 for the
foundation from relatives and friends, many of them colleagues in
dental offices in Fargo-Moorhead.


      Rehder is hoping that the broader community, if made aware of
the rare disease and the need for research support, would step
forward with contributions.


      "I was hoping that Fargo-Moorhead would help me," she said.


      Maybe even enough that someday the annual meeting of the Spastic
Paraplegia Foundation would be in Fargo-Moorhead.


      At the convention, Rehder and her fellow HSP patients agreed
that it would be helpful if some celebrity had the condition,
therefore attracting public attention and funding.


      She took her turn at the karaoke microphone, joking that she'd
become a singing contestant on the popular television talent show
"American Idol" to help raise awareness.


      The song she sang: Nancy Sinatra's hit, "These Boots Are Made
for Walking."


      Since 2002, supporters have raised $2.5 million for research
toward a cure for hereditary spastic paraplegia and primary lateral
sclerosis, a related spinal cord disorder.


      Scientists have identified gene mutations that cause the
disorders but have yet to unlock the disease mechanisms.


      In the first round of research grants, in 2003, the foundation
received only a handful of proposals. Last year, it was able to
fund five of 20 proposals, said Annette Lockwood, a board member on
the foundation from Fairfax, Va.


      "It wasn't being researched by other groups," said Lockwood,
herself a patient with HSP, which is prevalent in her family, as it
is in Rehder's.


      "It can be very different from family to family," Lockwood
said, referring to the incidence, age of onset, and virulence of
the disease.

      Any child born in a family with HSP has a 50-50 chance of
inheriting the disease, Lockwood said, which often shows up in
middle age.

      Rehder, who is determined to do what she can to boost research
funding, knows any cure might come too late to benefit her. But she
has a 6-year-old son, Coleman, who might grow up to discover he has
inherited the disease from her.


      "I just have to do something," she said. Not knowing if
Coleman has the disease, or even when it will strike, keeps her
awake at night.

Gallery

Health

Brenda Rehder recently found a note, written in scolding capital letters, left on the dash of her car: "You! are abusing the handicapped parking program. Shame." To the casual observer, Rehder is the picture of health and vitality: trim, fit, enthusiastic. But Rehder suffers from a rare spinal cord disorder causing her muscles to
become progressively weaker and more spastic.

Rare disorder changes life of Moorhead woman

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