Ana Maria Palomo Argenta
and husband Ezequiel in Madrid
are pictured here celebrating their 9 year old daughter Lucia's First Communion
with their son Jesus, 5 years old.
|Ana Maria Palomo Argenta, husband Ezequiel, daughter Lucia and son Jesus
Pamela Korb from Eurfurt, Germany
writes about the importance of a schedule that keeps her active, but is not so
demanding that it sets her back. Every
week she has a session with a speech therapist who helps her relax the mouth
muscles in ways that will stop her from biting her tongue and expelling food
from her mouth. At her weekly physiotherapist appointment Pamela works to gain
more security in walking. With the help
of a walking frame, Pamela is very mobile and can get out on her own to
swimming, shopping, visiting friends -- even mowing the lawn in the family
As with many patients a poor night’s sleep or worries create
stress and setbacks. She is grateful for
her parents’ support and concern for her happiness and well being and for her
friends who come to visit. Pamela’s exuberant personality and enthusiasm for
life is such a contrast to the chorea-acanthocytosis, but with courage and
humour she says, “I have the disease, it does not have me.”
|Marika, a ChAc patient in California
Marika, a ChAc patient in California,
has completed a one mile charity walk in Golden Gate Park.
Her mother Ann writes that given Marika's difficulties with ambulation, that
represents at least a 10K walk! When she was a fourth year university student
in Madrid, she completed the
Camino-Santiago walk across Northern Spain from near the French border to Portugal.
Her inclination to keep walking is still very high.
|Susan Hills enjoying a family holiday in Murcia, Spain
Susan Hills, who lives in northern England, was able to enjoy a family holiday in Murcia, Spain
in July. "I have been to Spain
for 12 days it was really nice, a change from home,” she writes. “We stayed in
my sister's new villa and had a lovely time."
Recently Alex Irvine and Pete Clark, both ChAc patients in Southeast England, met at the National Hospital
in London for a
chat. Pete was accompanied by his mother Sheila to the botox clinic, where he
finds the three-monthly injections helpful in controlling his jaw, especially
in not biting the inside of his mouth. He was pleased to try out Alex's
Lightwriter machine: typing in a sentence or phrase and then pushing a button
causes a voice to speak her words.
|Alex Irvine and Pete Clark met at the National Hospital in London for a chat
Pete has a wise outlook about his condition: "I am
slowly beginning to learn to think in terms of what I have achieved in a day,
rather than the long list of things I could have done in the past,” he said
recently. “Reducing my expectations also reduces my levels of stress."
Alex was happy to share her experience with the Lightwriter
and her latest solution to drooling: scopoderm patches usually used to prevent
nausea has made her mouth drier and therefore less prone to drooling.
Both Pete and Alex agreed to meet again when future
appointments make it possible.