June 2013

Caryn Wise, Anne Eichmeyer (NaDean Watkins, Lisa Schoonover and former Care Coordinator Mary Rebar presented their topics via conference call)

Awhile back, the Evergreen Chapter development and administrative staff were fortunate to attend an eye-opening In Service training presented by the Chapter's Care Service Coordinators. They designed this training as an extension of their trip to the Chicago conference and the new information gleaned there.

The Care Coordinators covered a wide range of topics starting off with the team approach at ALS Clinics and then getting into specific life-extending support methods such as the relatively new Diaphragm Pacer and quality-of-life software and technologies like Skype, iPads with speech applications. Also touched on were the differences between familial and sporadic ALS and other medical and science-related issues.

After hearing presentations ranging from the positive impact of the The ALS Association's Certified (multidisciplinary) Clinics of Excellence to the pro-active use of PEGs (feeding tubes), BiPaps to help with breathing, Cough Assists and the like, all of us came away with a hopeful message. We're not just providing  providing equipment and practical advice and education during home visits. We gained a new perspective that many of the practices and devices being implemented nowadays help to extend life.

For instance, we learned that Riluteck, the only medicine prescribed for ALS patients extends life 3 months. Attending a multidisciplinary clinic such as Virginal Mason's can add 6 months to 2 years to a patient's life expectancy. The use of a BiPap (or Bi-Level) can add 16 months. Research for the cure is coming someday, but hope is in the air today.

~ Editor

A summary of the In Service Training will be available on the Local Care Services Homepage.

Pat and Jim Nabors were one of the first ALS

Here I am at the Chapter office with one of Nana's scarfs

families I met as a new Care Services Coordinator.  I was immediately struck by their kindness and patience with each other and with me.  At a support group meeting, Pat gifted me with a beautiful scarf knitted by hand.  She told me it was her therapy at night.  She had decided to make the gorgeous scarves available at cost to others and that she wanted all proceeds to be given directly to the ALS Association.

Pat's granddaughter modeling a pink scarf

The Nabors' attended the Visualize a world without ALS Luncheon last month, where Pat's scarves were displayed in a variegated rainbow.  I loved seeing the mob of women trying on all the different colors. You can see all the lovely colors on Facebook at Nana's Scarfs or contact Pat directly dpn07@aol.com… I have since bought two more, one each for my mother and sister.  Perfect gifts! 
~Caryn Wise, South Sound Care Coordinator

(It would be fun to see and post other forms of therapy. Contact the editor at dedes@alsa-ec.org)

With summer almost here, wouldn't it be lovely to go sailing? Maybe you used to sail, but now the logistics of such an adventure seems daunting. Or perhaps you've never sailed and you want to experience at least once the wind in your face and the feel of the boat skimming through the waves, but you just can't see how you'd go about doing it now. Footloose Sailing Association might be just the thing.

Launched in 1991, Footloose Sailing Association is the Northwest's premier sailing program for people of all disabilities, their friends, family and caregivers. They are dedicated to bringing independence on the water and competence in the sport of sailing to disabled individuals.
Footloose is a 100% volunteer summer sailing program for the disabled that features events including day sailing and a weekend cruise across Puget Sound to spend the night camping on Blake Island. In the winter, the organization holds several social activities including a potluck, fundraising and training sessions. Footloose Sailing Association is comprised of over 200 participants, volunteers, and board members. Funds for the 501C3 non-profit come from memberships, fundraising activities and donations.
FSA is one of only a handful of organizations on the west coast that provide access to sailing for people with disabilities. As an American Sailing Association (ASA) affiliate, Footloose offers basic sailing training with adaptive modifications. Footloose is also a chapter of Disabled Sports USA (DS/USA).

As a matter of policy and safety, Footloose is not equipped to deal with disabilities with a violent nature. Medications and toilet issues need to be handled by a caregiver.
For more information see:
Footloose Disabled Sailing

Leave a message:
Phone: 206-382-2680

Mailing Address:
Footloose Disabled Sailing
7683 SE 27th St PMB #239
Mercer Island, WA 98040
Note - This is a post mail box (PMB), not a post office box (PO Box).

Daysail Address:
North Leschi Marina
300 Lake Washington Blvd
Seattle, WA 98122

Visit them on facebook for more great photos.