Dave Simpson —
A Flash of Color
 |
|
"Lighthouse Series — Bete Grise, Del."
|
by Kathy Wechsler
It’s a photo. No, it’s a painting. Dave Simpson of
Flint, Mich., has found his artistic niche. The former deputy for
the Genesee County Sheriff’s Department shoots digital photographs,
instead of bad guys, and paints over them using various computer
programs to create original works of art.
A Lifelong Hobby
As a child, Simpson, now 47, experimented with crayons, india ink
and charcoal. His hobby led him to study art in high school and
college, but in 1984, he traded his
 |
|
Butterfly Series — Danaus plexippus
|
paintbrush for a badge and gun
when he went into law enforcement. Busy with his new career, Simpson
wanted to devote most of his leisure time to his three children,
Grant, William and Steven.
But painting was not long forgotten. As Simpson’s work schedule
changed, making more room for his artwork, he revisited his old
pastime. Free evenings allowed him to once again study at the Flint
Institute of Arts, and he resumed painting and drawing with soft
pastels and charcoal.
His medium shifted when he was found to have ALS in 1997.
Looking Through a New Lens
For Simpson, the disease began in his hands. As he lost his ability
to hold a paintbrush or chalk stick, he turned to the world of digital
art.
With the loss of the use of his legs in 1998, he found an innovative
way to operate a camera. A neighbor helped him mount a camera tripod
on his power wheelchair with a brace made of PVC pipe. This enabled
him to use the camera without holding it and to be mobile without
having to haul it around separately.
Simpson is able to lift his arms to operate the camera using a troughlike
device with a pulley system called a balanced-forearm orthosis
(BFO).
For digital creation, he uses computer programs and a wireless mouse
to “paint” with his choice of medium, usually oil, charcoal
or watercolor. Experimenting with different paint and photo programs,
Simpson found the effect that was just right.
Thrill of the Chase
Although he considers his work to be “just a hobby”
and keeps a personal collection of over 300 pieces, Simpson’s
work can be found in several local art shows and fairs. From sunsets,
flowers and butterflies to sailboats, harbors and lighthouses, the
complete process of digital creation usually takes 30 hours.
In 1998 Simpson started Big Simpson ArtWorks, a Web site that showcases
his digital pieces of art and offers them for sale. Visit bigsimpsonartworks.homestead.com/Home.html or www.bigsimpson.com to view his remarkable collection of work.
“This is my final act of self-expression,” said Simpson.
“Each and every painting has my heart and soul in it.”
 |
|
Dave Simpson’s specially outfitted wheelchair
gives him the means to practice his art.
|
'Wings’ Still Flying
High in Search of a Cure
by Chris Medvescek
What do a bull and a mustang have in common? This September, both
will be used to raise funds to fight ALS.
The bull, a Wall Street icon, represents the support New York’s
financial community has given MDA’s Wings Over Wall Street,
a VIP cocktail reception and auction that has raised some $4 million
for ALS research over the past five years. The mustang represents
the sleek red 2006 Ford Mustang GT convertible that will be raffled
off at this year’s event.
To be held Sept. 22 at the Marriott Marquis in Times Square, Wings
is expected to draw over a thousand supporters to a “celebration
of hope for a cure that raises awareness and much needed research
dollars,” say event planners. The event is sponsored by Credit
Suisse First Boston.
Actor William (Billy) Baldwin will host the evening, which features
silent and live auctions, in addition to the car raffle (see “Going,
Going”). Funds will benefit the research teams of Hiroshi
Mitsumoto, co-director of the Eleanor and Lou Gehrig MDA/ALS Research
Center at Columbia University, in New York City, and Jeffrey Rothstein,
of the Robert Packard Center for ALS Research at Johns Hopkins.
Rothstein is director of the MDA/ALS Center at Hopkins.
Four special awards will be presented during the evening.
The Diamond Award is given to a scientific leader
in ALS research. It’s named for Wings founder Toni Diamond,
a United Airlines flight attendant who received an ALS diagnosis
in 2000. Working with friends, family and others, Diamond and her
husband, Warren Schiffer, conceived of and inaugurated Wings of
Hope in 2001 with the goal of supporting cutting-edge ALS research.
Diamond died in 2004.
This year’s Diamond Award recipient will be Robert H. Brown
Jr. of the Cecil B. Day Laboratory at Massachusetts General Hospital.
A professor of neurology at Harvard, Brown has focused on ALS research
for 25 years and is responsible for several discoveries including
genetic mutations that are linked to paralysis. Brown is director
of the MDA/ALS Center at Mass General.
The Spirit Award, given for advocacy and fund-raising
in behalf of ALS, will go this year to Jean and Christopher Angell
of New York. The Angells are lawyers specializing in estate planning
and charitable giving. Jean Angell received an ALS diagnosis in
1998. Both are active board members and fund-raisers for the Packard
Center at Johns Hopkins, where Chris served as chairman of the Board
of Governors from 2000 to 2003. They have three children, Elizabeth,
Margaret and Christopher.
 |
 |
| Christopher Angell |
Jean Angell |
The Michael P. Beier Award honors an individual
who “inspires, encourages, and motivates others with devotion
and energy to find a cure for ALS.” It’s named for former
Wings chair Michael Beier, who died of ALS in 2003.
This year’s recipient, Andrea Crikelair, has been associated
with Wings since it started. Working closely with Beier as a trader
at Credit Suisse First Boston, she bore witness to his struggles
and was inspired by his courage and dedication to eradicating ALS.
Since that time, Crikelair has served as Wings co-chair and as a
member of the Board of Governors at the Packard Center. Crikelair,
of Greenwich, Conn., now works for UBS Securities.
 |
|
|
The Humanitarian Award, given for extraordinary
personal and public support of finding an ALS cure, will go to Scott
Horak, of Point Lookout, N.Y., a partner and co-founder of R&J
Construction Company. Horak stepped in with “passion and energy”
to help his childhood friend Warren Schiffer when Schiffer’s
wife, Toni Diamond, developed ALS. He co-chaired the inaugural event
and still serves as an active committee member.
When Diamond died in November 2004, Horak renewed his resolve to
raise funds for a cure, in honor of Diamond’s memory and Schiffer’s
friendship.
Going,
Going...
Although you must be present to bid on Wings live and silent
auction items, the Wings event also features a raffle open
to anyone. Only 1,480 raffle tickets will be sold, at $100
apiece, for a chance to win a 2006 Ford Mustang GT convertible.
To take a chance, send a check made out to MDA to: Wings,
1140 Avenue of the Americas, Suite 1801, New York, NY, 10036,
or call (212) 689-9040 to use a credit card.
Among the items on the Wings auction block Sept. 22 will be:
- Dinner with Walter Cronkite at The Four Seasons restaurant
- A Betsey Johnson one-of-a-kind black pleated dress with
aqua sash
- A guest walk-on part on the TV show “Forensic Files”
- A guitar signed by President Bill Clinton
- An autographed Britney Spears Rolling Stone magazine cover
For more information on MDA’s Wings Over Wall Street,
call the MDA office in New York City at (212) 689-9040,
or e-mail specialeventwings@mdausa.org. The
official Web site is www.wingsoverwallstreet.org.
|
ALS RESEARCH ROUNDUP
Study of NIPPV and Nutrition Under
Way
A National Institutes of Health-supported study of strategies for
noninvasive (nontracheostomy) positive pressure ventilation (NIPPV)
and nutritional support via a feeding tube is under way at 11 U.S.
sites.
The study, which hopes to include 220 adults with ALS, seeks to develop
reliable indicators of early respiratory or nutritional deficits.
The investigative group, headed by Edward Kasarskis at the University
of Kentucky in Lexington, will estimate participants’ caloric
requirements at different ALS stages, identify methods to detect early
respiratory dysfunction, and see what factors influence how well people
tolerate NIPPV.
For information, contact Megan Thompson in Lexington at (859)
323-8509 or megant@uky.edu.
Are Viruses a Trigger
for ALS?
Doctors associated with the MDA/ALS Center at Massachusetts General
Hospital in Boston are following up on a recent finding of elevated
activity of an enzyme called reverse transcriptase in the blood of
people with ALS (see “Researchers Associate Enzyme,” February-March).
When the MGH researchers found that reverse transcriptase,
an enzyme used by retroviruses to replicate themselves, had higher
activity in people with ALS and their relatives than in others tested,
they surmised that supposedly dormant retroviruses might be responsible
for the difference.
However, they were unsure of the meaning of the finding and whether
the retroviruses might sometimes become active or contribute
to ALS development.
Now, the Boston-based group is asking 60 people with ALS and 120 without
the disease to provide blood samples and answer detailed questions
about their medical and family histories. The study is now closed.
Elsewhere, Roger Pamphlett and colleagues at the University of Sydney
in Australia, who published their report in Muscle & Nerve in
July, found no evidence that the mosquito-borne West Nile virus plays
a role in ALS.
West Nile virus, a flavivirus, can attack motor neurons, the cells
that die in ALS, so this virus group became a candidate for investigation.
However, the researchers say they aren’t ruling out a connection,
even though they didn’t detect any flaviviruses in spinal cord
samples from 10 people who had died of ALS.
“One reason for our negative findings may be that the virus is
cleared quickly after an acute infection,” they write. They say
that a “remote [long ago] infection with later cell death is a
possibility” and that the role of viruses in motor neuron disease
“remains uncertain.”
Arimoclomol May
Combat Misfolded Proteins
A trial of arimoclomol, an experimental compound developed
by CytRx (www.cytrx.com),
a Los Angeles biopharmaceutical company, will likely begin this summer
or fall, pending its approval by the U.S. Food and Drug Administration.
Neurologist Robert Brown, who directs the MDA/ALS Center at Massachusetts
General Hospital in Boston, is slated to be the trial’s principal
investigator.
“Arimoclomol amplifies cellular methods used to combat protein
misfolding,” said David Haen, director of business development
at CytRx, citing studies in mice with genetic ALS that showed the
drug increased their life span by 22 percent. A key factor in the
mouse studies, he said, is that arimoclomol was effective even after
the onset of ALS symptoms, which hasn’t been the case with many
compounds tested.
Dairin Kieran at University College, London (England), and colleagues
published the results of the mouse experiments in Nature Medicine
in April.
Genetic Background Delays ALS Onset in Mice
Genetic background can make an enormous difference in the timing of
ALS onset and therefore on total survival time in mice, say researchers
at The Jackson Laboratory in Bar Harbor, Maine. Their findings imply
that genetic background has such an influence in human ALS as well.
A team that included investigators from Jackson, a research facility,
and Mouse Specifics, a laboratory equipment company in Boston, established
that mice from the C57BL/6J, or “B6,” genetic background,
develop ALS significantly later and therefore live longer than do mice
from the “B6SJL” hybrid background, when the mice are bred
with mutated SOD1 genes, which cause ALS.
The investigators used a DigiGait system developed by Mouse Specifics,
which includes a transparent treadmill, video camera and computer software,
to analyze the gait changes in these two strains of mice. With the automated
gait device they were able to detect changes in the mice as early as
8 weeks of age.
The B6 mice with the SOD1 mutation don’t show visible ALS symptoms
until 142 days (20 weeks), while the B6SJL mice with SOD1-mutated genes
began showing them at about 110 days (16 weeks). This difference of
four weeks in onset timing is as great as or greater than the difference
associated with all therapeutic trials in these mice to date.
The investigators, who published their results in Muscle & Nerve
in July, caution that the background strain of the mice being tested
“could obscure or enhance treatment effects” in laboratory
experiments.
MDA grantee Denise Figlewicz, at the University of Michigan, recommends
testing a new treatment in a variety of mouse strains to see if any
treatment rises above the “background noise” of genetic
variation. (See “What Can We Learn,” July 2005.)
Watch this publication and MDA’s Web sites at www.mda.org and www.als-mda.org for further information on this research as it becomes available.
VA Changes Web Site for ALS
Registry
The U.S. Department of Veterans Affairs continues to add to
its registry of military veterans with ALS but has changed the
links to its Web site. Any veteran who has a diagnosis of ALS
from a physician is eligible for the registry. Participation
involves answering questions (by phone) about one’s military
and medical history and functional level.
Information about the registry can now be found at www.va.gov/durham/alsregistry.asp.
Or you can call the study coordinators in Durham, N.C., at (877)
342-5257, or send e-mail to als@med.va.gov.
|
Back to top
A Helpful Voice
by Alyssa Quintero
June Thyen loves the great outdoors and considers the bonding experience
with Mother Nature a “very healing process.” She loves camping.
But Thyen received a diagnosis of ALS in December 2003.
“To me, ALS is a wake-up call, a reality check,” Thyen said.
“I cried with my husband during the first 48 hours after my diagnosis.
Then, the spiritual path replaced the grieving.”
Thyen, 60, explained that with ALS comes a new life, and that her “old
life is over.”
Nevertheless, she said that one of the most positive aspects of her
new life is that her family has never been so close. In particular,
she and her husband, Geno, who have been married for 30 years, have
grown closer.
“We just have to hold on to the nitty-gritty idea that a lot of
good can come from something bad [like ALS]. That is very true for me,”
Thyen explained.
Thyen is fully ambulatory. She has, however, lost her ability to speak.
“Even though I can’t speak, I have to stay positive,”
she said. “It’s been a lot more difficult to communicate
with others, and that can be very stressful. But, people understand.”
For the Thyens “it’s like life in slow motion,” but
they love it that way.
“You could say we are a couple who never really talked a lot,
and now that’s a blessing,” she said. “We enjoy being
together, just enjoying life at home or in nature.”
Hosting Nature
Thyen refuses to allow ALS to interfere with her love of camping and
the outdoors, especially because “camping is great ALS therapy.”
 |
|
June and Geno Thyen at Mille Lacs Kathio State Park in Onamia, Minn.
|
Thyen, who is retired and spends much of her free time camping with
her husband, serves as a campground host at Mille Lacs Kathio State
Park in Onamia, Minn.
How does she serve as a camp host, where communicating with the campers
comes with the territory? Easy. Thyen uses her DynaVox, which she has
had since June 2004. The speech-output device helps Thyen stay connected
to the rest of the world, including the people she meets at the campground.
For six weeks in September and October 2004, Thyen served as a campground
host for the first time and fell even more in love with the outdoors,
if that’s possible.
“My breathing is better here in the fresh air, and I’m able
to walk for 25 minutes without tiring out. It’s so healing here,”
Thyen said.
As a camp host, Thyen answers the campers’ questions and communicates
daily with the park ranger staff. She serves as a greeter at the check-in
center, using her DynaVox to communicate with the camp’s visitors.
When the campsites are emptied, she and her husband pick up garbage
and clean the campsites so they’ll be ready for the next round
of guests.
“The campers have many questions, and they forget things like
flashlights or dog leashes,” Thyen said. “I love to be able
to help them with things like that. I even sell firewood to the campers.”
Thyen also said that several campers are “amazed by the technology”
that allows her to communicate with them even though it’s not
her actual voice doing the talking.
For example, during a recent camping trip, Thyen became acquainted with
the leaders of a Boy Scout troop. She decided that it would be a prime
opportunity to teach young people about “ALS life.” She
sat with her DynaVox, and the Scouts gathered around her while she typed
and talked to them using her speaking companion.
“It’s 10,000 acres of fresh air, and I really enjoy visiting
with the campers,” Thyen emphasized. “It was a chance to
show them that people with ALS still have a life.”
Although she had gone on several camping trips before, the hosting experience
was somehow different.
“What I love most about working at the campground is that I have
the opportunity to camp with Mother Nature while I’m working.
And, I didn’t notice the progression [of ALS] during the six weeks
while I was there,” she explained.
Thyen and her husband are scheduled to return to the camp during the
first two weeks in October for Thyen’s second stint as camp host.
“It was a great opportunity to serve the campers, putter and do
a few chores, and camp with Mother Nature for six weeks,” Thyen
added. “I can’t wait to do it again!”
Living the Simple Life
Thyen lives in St. Cloud, Minn., with her husband, and they have four
children and a 1-year-old granddaughter, Joy.
“My life has been wonderful,” she said. “God took
the stress and tension [of a hectic life], and now I enjoy every day.
I simply refuse to focus on the progression of this disease.”
Thyen, who attends the local MDA clinic’s ALS support group at
the Mayo Clinic in Rochester, Minn., explained that ALS and her experiences
in nature, especially as a campground host, have taught her a valuable,
universal lesson.
“We need to make the best of life and look for the good in everything,”
she said. “We just need to appreciate the simple things in life.”
Back to top
Equipment Corner —
An 'In-Between' Mobility Aid
by Tara Wood
People with ALS sometimes find themselves hovering between the occasional
need for assistance to get around, and the full-time need for a wheelchair.
For Houston’s Chris Rice, one unique solution for this segue has
been, well, a Segway.
The Segway Human Transporter is a revolutionary pedestrian vehicle that
boasts “dynamic stabilization” that essentially makes it
self-balancing. It operates almost silently, and runs on lithium-ion
rechargeable batteries.
Rice, who received a diagnosis of ALS in October 2001, received a Segway
as a surprise from a group of friends who chipped in to buy him one.
 |
|
Chris and Reda Rice demonstrate the utility
of the Segway.
|
He uses it “basically anywhere that entails walking a long distance,”
such as the shopping mall, long hallways at the doctor’s office,
and on a family trip to DisneyWorld.
“I love the Segway. I would recommend it to those who have the
physical ability to drive it,” said Rice. He and his wife, Reda,
serve as co-chairpersons of MDA’s ALS Division.
Driving it is “intuitive,” according to Segway press materials:
Lean forward and you move forward. Straighten up and you stop. Lean
back, and you move back.
A user needs to be able to stand, to step up and down to mount or dismount
the Segway, to lean, and to have a reasonable amount of hand strength
and dexterity to grip and twist the steering handle.
Rice said that since his lower-body strength is basically unaffected
by ALS so far, he can operate the Segway smoothly. Plus, its accessibility
is hard to beat.
“I can get on an elevator and turn in place. It fits through doorways
easily. I can go anywhere a scooter or wheelchair can go, sometimes
easier. I love it,” Rice said.
The top handle can be removed or adjusted to fit in the back of a vehicle,
and a ramp can be purchased to make it easier to get it out of a car,
Rice said.
In addition to enabling Rice to be at eye-level with others, Segway
offers another, unexpected gratification.
“I have found that when I am in a chair or scooter, people’s
reaction is different than if I am on the Segway,” he said. “On
the scooter, you get the ‘I wonder what’s wrong with him?’
look, but on the Segway, you get the ‘Cool! Where can I get one?’
look.”
If you’re considering a Segway, keep in mind that product information
on the Segway’s Web site, www.segway.com,
specifically states that it isn’t approved as a medical device.
That means it’s very unlikely that health insurance plans will
cover any of its about $5,000 cost (Rice said his friends found a new
one on eBay for $4,000).
Back to top
Couple Wrestles With Health Care
It was with much excitement and relief that I read “Are You Prepared
for an Emergency?” (June 2005). It was comforting to know that
someone else had similar circumstances.
My husband, Charles, had an emergency on vacation in Missouri. Midway
into the second week, the doctor said he didn’t know what was
wrong. He had a tube put down Charles’ throat, and the next day
had a trach put in.
I had Charles flown to the Mayo Clinic in Rochester, Minn. Within three
days they gave him the diagnosis of ALS.
The biggest shock for us was that no nursing home in our city would
take a vent patient. We lived in a retirement community (and I still
do). Their health center wouldn’t take him either. Like Susan
Pratt, quoted in your story, I had to wrestle with the cost of nursing
care at home or in a facility. The social worker at Mayo found that
a home in Charles City, Iowa, 105 miles from home, would take him.
His long-term health care insurance policy would cover about half the
cost. This insurance was for four years and runs out in August.
After we read the article, I asked my husband if he’d want a feeding
tube if he couldn’t swallow. He said, “Yes.”
My advice for other things to do in advance is:
Take out long-term health care insurance, with no expiration.
Don’t feel guilty if you have to use a nursing home. Several years
ago my husband and I agreed that if one of us needed one, the well person
should live a life and the ill person should be where they could be
taken care of.
I do wish we could convince Medicare to cover the cost of renting a
ventilator if a person is in a nursing home. As it is, we must pay all
the costs.
I finally convinced the Veterans Administration in Iowa City to furnish
medication at their prescription rate and to furnish trachs and suction
kits.
At this point, financially we can make it. But with the long-term care
policy coming to an end, it’s going to be “nip and tuck.”
We are not and don’t intend to be on Medicaid.
Betty Debban
Cedar Rapids, Iowa
Back to top
Return
to Issues Index
|
