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

More documents

Recommendations

Info

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 12
Our Donors. Making a Difference. Carlina Abiles Ace Hardware, Davis Rebecca Adams Inge Adolph Diana Aedrich Janet Aiko Keintz Patsy Alexander Adam Alexander Terri Allegrini Allison Allen Carolann Allen Janine Allen Jana Allen Mary Jo Allred Janice Amant Vincent Anaclerio Cheryl Anderson Jeanne Anderson Mary Anderson Jessie Andrade Frank Aochi Quintell Apacanis Daniel Arbios Tina Archer Lucero Arellano Linda Arias Elizabeth Arizanga Charles Arnold Ron Arrants Janee Artero Rhonda Ashoff Andrew Atkinson Tiffany Atkinson Evelyn Atwater Ashley Atwood Euleda Auernig Marvin & Helen Augustine Lynne Austin Ivania Avilez Rich & Elanor Avilla Joan Axelson Susan Aydelotte Alan B. Katrina B. Angela Bailey Linda & Burton Baker Kevin Balinski Theresa Balk Steph Ballejo Louis Ballesteros Joyce Baral Vicki Barber Anna Bardy Wanda & Erica Bardy Don & Suzanne Barella Mary Beth Barker Steve Barker Jennifer Bartley Kathleen Barzegar Stephanie Basile Sheila Baumbach Frances Baxter-Guigli Julie Beal Jeff And Sherry Beasley Bruce Bell Erik Bell Jennifer Bell Joe Belli Sue Belli George Beltrametti Ingrid Beltz Stephen Bender American River Benefit Administration Kari Benton Gloria & Harold Benzel Tom Bergmann Julio Bermejo Cynthia Berndt Michael And Johanna Berrigan Bonnie Berry Brigitte Berry Ryan Bertrand Clarice Beynon Jeanie Bigley Robert Bishofberger Vivian Blair Donald "Monte" Blair Cynthia Blanchard Terry Bochaton Craig & Lillian Bock Caroline Bolduc Collin And Kelly Boles Pedro Bonilla Paul Boroski Victoria Botelho Amanda Bourgeois Casey Bowden Jake Bowden Mckenna Bower Brent Bowers Teresa Bowman Vance Boyles Lily Bradley Deborah Bradshaw Justin Bradshaw Florence Brazill Kathleen Breining-Klug David Brierly Barbara Brink Janet Brizendine Cindy Brock Erin Brooks Mellor Brothers Amber Brown Gregory And Judith Brown Mary Sythel Brown P. Loretta Brown Chris Brunner Donna Burke Karen And Brad Burmeister Business Credit Card Systems, Inc Kathy Butler Marguerite Butler Christina Byrnes John Caito David Calderon Gricel Calderon Mario Callegari Jane Callegari Kurt Callies Kathy Campbell Matt Campbell Christina Candelaria Novelyn Candland Karen Cannata 13
Page 1 and 2: NOVEMBER 2012 Dear Friend, The ALS
Page 3 and 4: A Letter From Our PALS - Lauren Spe
Page 5 and 6: 2012 Veterans Day 2012 Veterans Day
Page 7 and 8: Information & Resources for Patient
Page 9 and 10: Ask the Doc: Q & A with Edward Kasa
Page 14 and 15: October Donations. Making a Differe
Page 16: Thank you to our October Donors. Ka

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

Create successful ePaper yourself

Delete template?

Save as template?