Susan Hills in England writes of experiencing good days and
bad days at present. "I have gained a little weight so I do not feel as
exhausted," she reports. "I am trying to keep my weight up to 44.5Kg but
it is hard work. I think my movements use up some of my calories."
also takes motilium which she finds helps food move faster through the
digestive tract and helps the muscles too move more smoothly. New tests may
help with arm movement and pain, she tells us, but dizziness is a constant
source of frustration. "I try to keep active because this really helps me
feel stronger; any little exercise helps," Susan says. "I have a
great neuropsychologist who helps me feel better mentally, as I can feel
depressed at times. He even got me a psychiatrist and support worker, who takes
me out about once a fortnight, so this is nice."
the Advocacy we were so sad to hear of the death of NA patient Marika Ann Critelli of Santa Barbara, California,
who appeared in the last
issue of NA News after completing a one-mile charity walk. Marika died in
November, 2009, aged 31. She had graduated with honors from the University of California Davis, spending the
academic year 1999-2000 at the Universidad Complutense in Madrid,
and she travelled extensively, visiting Mexico,
Argentina, Peru, Chile,
Tanzania, Kenya, Mauritius,
New Zealand, Australia and Europe. A tributes page is online for Marika here.
|Marika Critelli |
mother Ann Lippincot wrote to us:
was "plucky". While there were many things she no longer could do
(e.g., ride a bike, play tennis, read a novel), she did not let her disability
slow her down. In fact, she did not perceive herself as being disabled. She
charged forward each day, out into the social world she so loved. Her sense of
humor was a delight. June, a lady at the bank where she did business (also
where she visited 2-3 times a day to use their restroom and internet), cried
when we told her the news of Marika's passing. She also shared with me that she
asked Marika one day where she was going next. "Bermuda,"
my daughter responded. "And how are you going to get there?" asked
June. "I think I will walk," Marika said with a twinkle in her eye.
June confided in me that prior to that, she had made assumptions about people
with disabilities, that they didn't have a sense of humor. She said,
"Marika taught me to question my assumptions." Marika's
psycho-therapist told us that Marika had decided that if she was to end up in a
wheelchair, it would be one that was bright red.
in the NA community are deeply grateful to Marika and her family for making a
donation of brain tissue, an invaluable contribution to researchers' progress
towards finding a cure for NA group diseases.
experiences with deep brain stimulation (DBS) are being
sought by researchers involved in the EMINA project. A key aspect of the
project is the evaluation of the value of DBS in alleviating movement problems
and other symptoms; researchers also want to evaluate long-term effects or
risks in patients with neuroacanthocytosis. If you are a physician with a patient who has had DBS please contact Prof
Francois Tison of the University of Bordeaux Hospital, who is assembling
patients' clinical reports. If you know of a patient who has had DBS please contact Ginger Irvine at the Advocacy to ensure
that your case is included.