The ALS Association, Greater Sacramento Chapter November 2012 ...

Patient Interview: Cathy Speck on Karina Dreyer
Here we are again, in the month traditionally known for showing
our thanks—November. Since the name of my column is "Attitude of
Gratitude," you might think I'm filled with gratitude. Well, you are right
on! Yes indeedy! I am so thankful for all the wonderful people of our
ALSSAC community. I often wonder how our incredible staff can stay so
positive and energetic.
Cathy Speck
Cathy and Karina at the 2012 Walk
to Defeat ALS
We PALS have a unique understanding of each other, especially
during the "break-out sessions." The power of Truth in our support
groups is something I am thankful for. And I'm also giddy about making
new friends there. Karina Dreyer, who comes off and on to our Saturday
groups in Sacramento actual has PLS, not ALS. The first time I saw her at
a meeting, I don't think she spoke other than to say her name. The following
month during a break-out session she did speak and I was intrigued
by her accent. I asked her where she was from—which country. She kindly answered "South Africa." I
boldly told her that I thought her accent had some German in it, and she still kindly explained that her grandmother
was German. As a youngster, Karina grew up speaking German as well as Afrikaans, the first language
of South Africa.
My last name, Speck, is a German word that means "bacon," and even though I'm a vegetarian, I studied
German for nine years, starting in 7th grade. Karina and I quickly (no time to waste) became Germanspeaking
friends, and we talked about our cognitive struggles. Cognitive effects of ALS/PLS are not well -
defined, and the changes can be side-effects of medication, lack of restorative sleep, hormones and age, etc...
Here is part one of Karina’s story.
I grew up in Pretoria South Africa. I studied computer science at the University of Pretoria. In 1989 I
married Dirk Dreyer, and we had two sons—Wiekus was born in 1993, and Christo in 1994.
Dirk studied computer science at the University of Johannesburg and in 1996 we were given the opportunity
to come to America to work as programmers. We were consultants in Richmond, Virginia, and after
that in Denver, Colorado. And then we got green cards, so we could stay and work. And this is how we came to
California. We bought a house in Roseville, Ca. We became US citizens in 2004.
In 2011 I started having problems with spasticity and walking, after a seeing a lot of doctors, I was diagnosed
with PLS Primary Lateral Sclerosis by the doctors at UCSF.
PLS is caused primarily by degeneration of the upper motor neurons in the brain and spinal cord, which
results in increasing spasticity and weakness of voluntary muscles. It is often referred to as a benign variant of
Amyotrophic Lateral Sclerosis (ALS, Lou Gehrig’s disease). The primary difference between the two is that in
PLS the spinal motor neurons or lower motor neurons stay intact. Thus, there is no muscle wasting
(amyotrophy), which is the symptom that ultimately causes fatal complications in ALS.
However, there are some slowly progressing forms of ALS that are difficult to distinguish from PLS. In
fact, up to 10% of ALS patients survive more than ten years. In addition, improved medical care is resulting in
longer and more productive lives for all ALS patients. For additional information on ALS, see the ALS Fact Sheet
by the National Institute of Neurological Disorders and Stroke.
No treatments are currently available to prevent, stop, or reverse PLS. Treatment is focused on symptom
relief, such as medication to reduce spasticity; physical therapy and exercise to help maintain flexibility,
strength, and range of motion; assistive devices and communications aids; and supportive therapy and other
modalities.
For more information on Spastic Paraplegia visit: http://sp-foundation.org/understanding-hsp-pls/pls/
#Different
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