• Advocate or suffocate

    by Cathy Speck

    Cathy Speck and the "Specktaculars" at last year's ALS Walkathon in Sacramento 2009

    In early January, we lost dear Claire Findley, a member of our ALS community. We embrace her husband Luther and his family with hugs of undying empathy and compassion. They will always be part of our family — the circle never ends in ALSSAC (ALS Association Greater Sacramento Area Chapter.)

    Does it not seem like the world should just stop when one of us dies? But what good would that truly do? We keep going, even if we go with the help of a cane, walker, or power chair. Forward, ever forward we steadfastly stay on our path, guided by a light we might not yet be ready to understand.

    So, what are we to do with our energy when we awake each morning? Maybe we slept divinely like a chubby infant smelling of sweet baby powder. Or perhaps each breath seemed like a struggle, and at times we just let the chest walls rest — but not for too long.

    In 2009, ALSSAC asked me two to be the honorary red ribbon-cutter to start the ALSSAC Walk to Defeat ALS. I told them I felt honored, but I thought someone who had been involved with ALS longer should get the honor. So, I shared the action with Marty Welsh, who is now known nationwide for his ALS Advocacy. Sadly, Dr Martin Welsh (Marty) died of ALS on Oct. 28, 2010.

    I can only speak (and typo) for myself. My actual sleep quality varies from night to night because of my Bi PAP that I use with added oxygen. Sometimes the mask slips a bit no matter what I do. When I wake up to greet a new day, if I had a difficult night, I don’t want to greet the day — I want energy served to me on a polished silver platter. A bowl of steaming, creamy oatmeal would also sit delightfully next to my plate of energy.

    Once I decide to sit up, I turn off my oxygen equipment, my electric blanket, and my Sony CD Walkman that plays meditative music into my ears all night long. And then for a minute or so, I decide what I want to do with the rest of my day.

    Jan 2011 in Newport Beach. We were at a National ALS Association Summit, where I was honored for being one of four National ALS Heroes. Celebrating with me is ALSSAC Executive Director Amy Sugimoto.

    No, not, rest yet — that’ll come later. I like to help, I want to help, I will help, and usually my first goal is ALS related. Yes, I do grieve the losses around and in me, but I decide to live, and love, and to spread joy in often the least likely places.

    Congresswoman Doris Matsui, Cathy Speck, Linda Duval and Amy Sugimoto in Washington DC advocating for more funding for ALS research

    As many of you know, near the end of December, The Sacramento Bee ran a front page feature story about Claire and Luther Findley. It was fine reporting, but the writer’s angle was mostly revolving around the economy (in my always quiet opinion) along with human interest. I was quite disappointed that our fantastic regional chapter ALSSAC was not named, credited, mentioned — anywhere — not even in a sidebar.

    Claire and Luther were steadfast members of our ALS community and thrived in part because of the support they received through ALSSAC. I was hoping that our executive director Amy Sugimoto, and patient care coordinator Nancy Wakefield could have spoken with The Bee about what ALSSAC can do, and how they do help us. I truly can’t find enough grandiose adjectives to describe how wonderful our group is. I’d like to say “life-saving” but that’s just a teeny tiny bit of an exaggeration. They did, however, lengthen my life — that’s for another story.

    Back to getting out of bed in the morning and deciding how to use my energy in the most useful and delightful ways…

    Amy Sugimoto, Executive Director of ALSSAC, and Cathy Speck in front of Congress in May advocating for more ALS research funding May 2010

    Until the day I exhale forever, I hope to be making progress for families impacted by ALS. The Findley story is sad, tangible and true — so powerfully true. I took the chance to try to make a difference, and I sent the reporter an email. Here is part of it:

    Greetings,

    Your piece in The Bee has already become legendary in the world of ALS — thank you so much. And once again we have an opportunity to spread the news about ALSSAC and the myriad ways our chapter can help improve quality of life.

    Thank you so much for writing about Claire and Luther Findley and their many struggles. I know them both through our participation in support groups and other events sponsored by the ALS Greater Sacramento Area Chapter ALSSAC.

    Thanks to your excellent writing, Renee’s photography, and The Bee’s placement of the story and photos, the Findleys were able to stay in their house until Claire died, and allowed more time for Luther to grieve before looking at the next mountain on his path. I just knew you could help make that happen. I just wish that the article included some information about ALSSAC.

    Your story could have included a huge boost to help people with ALS find out about ALSSAC. When folks are diagnosed with ALS, they are usually just informed of the devastating news, and sent away without any resources, or suggestions of where they might find help. Perhaps the website could have been placed in a sidebar, along with a brief explanation about how ALSSAC can help patients and their families — at no cost! That’s right! Free assistance for ALS patients and their families and caregivers to aid them in finding proper treatment, and help maintain quality of life.

    It is because of ALSSAC that I’m still alive and thriving. ALS is a unique disease and hospitals don’t know how to deal with it. We all need to be advocates for ourselves, and our caregivers must be able to speak for us if we aren’t able. But how do we educate emergency room personnel about ALS? How can we ensure that they know most ALS deaths are due to respiratory failure. Many ALS patients cannot lie flat on our backs — we will suffocate. And a normal oxygen mask or nasal cannula will not help. But please don’t “vent us,” unless our advanced directives allow that. Or, if one of us comes in for any type of surgery, do not assume that using normal respiratory procedures is appropriate. It could be a successful surgery, but in recovery, a suffocated patient.

    Aaarghh! It feels like so much, too much. How can anybody know and do all of this, especially under the stress of an emergency? Well, I did it — along with my wife Linda, and two close friends, April and Jennifer. And we received excellent services in the emergency room from the tech support, nurses, and doctor at Sutter Davis. If we can do it, others can too. ALSSAC taught me how to advocate for myself and others.

    So, you see, ALSSAC is much more than a “local support group.” We do many fundraisers to serve the needs of our people, but our awareness spreads nationally and internationally. Our funds also go to ALS -backed research, and that research will eventually find a cure or treatment. With my family, each person who has ALS passes on to their children that same 50% chance of getting the ALS mutation. Only 2% of ALS cases are genetic with the SOD 1+ mutation, but those families are very useful for research. Mine is being studied at Northwestern University in Chicago.

    The chances don’t decrease, and all it takes is the one parent — it’s an autosomnal dominant mutation which was passed down from my mom’s lineage. ALS already took my mom, my aunt and two of my older brothers. Yes, it does have its ruthless hands around my neck, but I think I’m going to keep looking ALS in the eye and say, “Oh yeah? You and whose army?”

    Thank you for your excellent reporting, and compassionate writing style. I will remain a faithful follower and reader of whatever you write.

    Cheers!
    Cathy Speck

    ———————————————————-

    The ALS Association
    Greater Sacramento Chapter
    Contact: Amy Sugimoto
    Executive Director
    (916) 979-9265 asugimoto@alssac.org

    NEWS RELEASE
    For Immediate Release

    Californians Can “Get the 414 on ALS” and
    Help Find a Cure for Lou Gehrig’s Disease with State Income Tax Returns

    February 7, 2012 Sacramento, California – This tax season, Californians have the opportunity to make a difference in the fight to defeat Amyotrophic Lateral Sclerosis (ALS, also known as Lou Gehrig’s disease), by donating $10 or more on line 414 – ALS /Lou Gehrig’s Disease Research Fund of their California Tax Return. “Get the 414 on ALS” public awareness campaign informs taxpayers that by making a donation they can support cutting edge research funded by The Association to discover new treatments and a cure for ALS. For more information about the campaign or to join in the grassroots effort to spread the word, visit the Web site at www.getthe414onALS.org.

    ALS is a progressive, neurodegenerative disease. Once diagnosed with ALS, on average, people survive two to five years. Nearly 30,000 Americans annually live with ALS. Tremendous progress has been made in ALS research, including the recent discovery of ALS6, the gene responsible for about 5% of all inherited cases of ALS.

    “With the progress that’s been made through research in the last few years, we have every reason to believe that a treatment or cure is around the corner,” said Amy Sugimoto, Executive Director of The ALS Association, Greater Sacramento Chapter. “We need California’s tax payers to help get us there.”

    Through the dedicated work of passionate California ALS advocates, the sponsorship of Senator Vargas, the support of other legislators such as President pro-temp Steinberg, and the approval of Governor Jerry Brown, Californians can support ALS research through their state tax returns.

    “We want Californians to understand ALS affects people from all walks of life, and above all, know that their donation will help in our quest for a cure,” said Sugimoto. “Americans are the most generous people in the world, and we know that they will respond to our call for support. This fund is means everything to the people with ALS and their loved ones.”

    The ALS Association’s four chapters in California, (listed from North to South) Greater Sacramento, Golden West, Orange County and Greater San Diego, spearheaded efforts to add the fund to the state income tax form.

    The ALS Association is the only non-profit organization fighting Lou Gehrig’s disease on every front. By leading the way in global research, providing assistance for people with ALS through a nationwide network of chapters, coordinating multidisciplinary care through certified clinical care centers, and fostering government partnerships, The Association builds hope and enhances quality of life while aggressively searching for new treatments and a cure.



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