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Multidisciplinary Care Prolongs Survival, Improves Quality of Life for People Living with ALS

May 21st, 2016 by hillaryu

By Lynne P. Taylor, MD, FAAN, FANA

Imagine being seemingly healthy one day and the next being diagnosed with a progressive, degenerative neurological disorder that will slowly interfere with your ability to move, speak, eat and even breathe. This disease, a tragic reality for thousands of Americans, is called amyotrophic lateral sclerosis or ALS.

ALS is incurable. For reasons not well understood, nerve cells in the brain and spinal cord that control voluntary muscle movement gradually deteriorate. As a result, muscles atrophy, leading to paralysis and death, often in three to five years.

Messages from motor neurons in the brain and spinal cord are scrambled in ALS. These control functions like limb movement, swallowing and aspects of breathing. Senses and thinking processes remain normal in people living with ALS and, thankfully, pain is rare at any stage.

Background

French neurologist Jean-Martin Charcot discovered the disease in 1869. In the United States, ALS is often called Lou Gehrig’s disease after the beloved professional baseball player whose struggle with the disease and death in 1941 brought it to national attention.

A-myo-trophic comes from the Greek language. “A” means no. “Myo” refers to muscle and “Trophic” means nourishment – thus, “No muscle nourishment.” When a muscle has no nourishment, it “atrophies” or wastes away. “Lateral” identifies areas in a person’s spinal cord where portions of nerve cells that signal and control muscles are located. As this area degenerates, it causes scarring (“sclerosis”) in the region.

The motor nerves affected by ALS provide voluntary movement and muscle control in the arms and legs, which allow people to perform most daily activities.

Types of ALS

There are two kinds of Lou Gehrig’s disease, one is called “sporadic” and the other, “familial.” Sporadic, which makes up 90 to 95 percent of all cases in this country, may affect anyone, anywhere. Familial means the disease is inherited. It accounts for 5 to 10 percent of all cases in the United States. In those cases, there is a 50 percent chance each offspring will inherit the gene mutation and develop the disease.

A relatively rare disease

According to the ALS Association, more than 5,600 Americans are diagnosed with the disease each year, which amounts to 15 new cases every day. It is estimated that as many as 30,000 Americans have the disease at any time. Although most people who develop ALS are between 40 and 70, with an average age of 55 when diagnosed, cases do occur among people in their 20s and 30s. However, ALS generally occurs in higher percentages among older men and women. Despite it being 20 percent more common among men, the incidence of ALS is more equal between men and women with increasing age. For unknown reasons, military veterans are about twice as likely to develop ALS. Half of all people affected with ALS live at least three or more years after diagnosis. Twenty percent live five years or more, and up to 10 percent live more than 10 years.

ALS symptoms

Symptoms usually develop after age 50. In its early stages, ALS symptoms include:

  • Increasing weakness in one limb, especially in a hand
  • Clumsiness of the hands
  • Difficulty walking
  • Subtle, light twitches under the skin
  • Impaired speech
  • Difficulty swallowing

Modern treatments have allowed people living with Lou Gehrig’s disease to continue communicating and moving. An important aspect of the disease is that involuntary muscles, such as those that control heartbeat, digestion, bladder and sexual function are not directly affected by ALS.

Fortunately, intellect, hearing, vision and touch generally function normally in people living with ALS. One behavioral effect, called involuntary emotional expression disorder, causes some people living with ALS to lose control over expressions, like laughing and crying. Some experts believe this is caused by lost neurons that control muscles involved in physical expressions of emotion.

Diagnosing ALS

ALS can be challenging to diagnose since symptoms can resemble other neurological disorders. A definitive diagnosis is based on a careful medical history, physical exam of the nervous system along with muscle- and nerve-function tests.

Medications

Currently, there is only one FDA-approved drug, riluzole, which can slow the progression of ALS in some people. Although there is not yet a cure or treatment that halts or reverses the disease, scientists have made significant progress in learning more about it over time.

Research

There are numerous research studies – past and present – investigating possible risk factors that may be associated with ALS. However, more work is needed to determine what role genetic and environmental factors contribute to its development.

Improving quality of life

Research has shown that people living with ALS benefit from a better quality of life by participating in support groups and receiving care at an ALS Association-Certified Treatment Center.

These centers, like the ALS Clinic at Virginia Mason, provide a national standard of best-practice, multidisciplinary care. People living with ALS and their families work with a team of providers who specialize in neurology, physical medicine and rehabilitation, speech therapy, physical and occupational therapy, neuropsychology, respiratory therapy, nutrition and patient advocacy. The care team helps manage disease symptoms and assists people living with ALS to maintain as much independence as possible for as long as possible.

ALS Association-Certified Treatment Centers often provide services that are not readily available in some areas.

A local example is voice banking, which is offered through the ALS Clinic at Virginia Mason. It is a way to preserve the sound of a patient’s own voice to use after real speech is lost. The technique involves a patient recording a variety of phrases and sentences in their own voice. The recordings are then uploaded to a speech-generating device so they can be played back in the voice familiar to family and friends.

Services like voice banking support study results published in the Journal of Neurology Neurosurgery and Psychiatry that showed participation in a multidisciplinary ALS clinic prolongs survival and improves quality of life.

To find an ALS Association-Certified Treatment Center near you, visit ALSA.org/community/centers-clinics.

Perspective, inspiration from a Wedgwood-area resident living with ALS

Although 61-year-old Wedgwood-area resident Brian Pendleton has been living with ALS for more than two years, it hasn’t slowed him down much and for that he feels very lucky. Besides his family and his career as a computer programmer, one of Pendleton’s long-time focuses has been running. In fact, since his diagnosis in November 2013, Pendleton has run about 40 marathons and achieved his goal of running 200 marathons or ultras (30+ mile runs). Despite the fact that ALS causes muscles to atrophy, running has become a form of physical therapy for Pendleton and something he is very grateful to be able to still enjoy. He is also grateful for the support he has received through the ALS Clinic at Virginia Mason. “Despite the fact that I’ve been lucky enough to date not to need many of the comprehensive services that the clinic provides, knowing I will at some point, and knowing that the multidisciplinary team will be available to me as my ALS progresses, provides a level of assurance that is invaluable,” said Pendleton.

Lynne P. Taylor, MD, FAAN, FANA, is board certified in Neurology and Neuro-Oncology with subspecialties in Hospice Care and Palliative Medicine. She practices at Virginia Mason Hospital and Seattle Medical Center and is medical director of the health system’s ALS Clinic.

For more information, visit:

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Wedgwood and View Ridge in Seattle on the Rise

May 17th, 2016 by hillaryu

By Jennifer Riner, Trulia

Relocating to the Pacific Northwest isn’t the most troublesome decision. With vast mountains, vibrant city life, serene waters, organic eateries and a mild climate, you can’t go wrong with the upper left USA. But, choosing Seattle as your new locale isn’t the final step.

Picking the right neighborhood for you and your family takes more than a drive around the neighborhood. To start, consider both Wedgwood and View Ridge, two welcoming, yet budding neighborhoods located in the northeast part of Seattle.

Wedgwood

Just seven miles northeast of Downtown, Wedgwood offers a dynamic vibe to a mix of residents, ranging from retired to young professionals. The median age in Wedgwood is 42 and 83 percent of the area’s residents are homeowners. For families, Dahl Playfield is a great place to take the kids during the summer, with playgrounds, an open field and even a skate park for kids to practice their tricks.

Although Wedgwood has a small-town vibe, the neighborhood isn’t lacking in grocery stores, a public library, buzzing cafes and an in-demand real estate market. Currently, the median sales price on homes for sale in Wedgwood sits at $682,000 based on 19 home sales between Jan 7 to April 6. While Wedgwood falls on the pricier side of the national scale, high home prices are fairly common for the more popular neighborhoods in ever-growing Seattle. Rents in Wedgwood are $2,350 per month (median), a slight month-over-month dip from $2,695 in March.

View Ridge

Because of its location on the coastline, many View Ridge abodes offer impressive Lake Washington sights. Outside of the sprawling water views, View Ridge playfield offers a playground, ball field, picnic tables and pathways for walking or running. As far as the resident make up, more View Ridge residents tend to be homeowners compared to Wedgwood with a 94 percent share, and the median age is slightly higher at 44 years old.

Although View Ridge is just east of Wedgwood and many Seattleites can speak to the two communities’ similarities, homes in View Ridge are currently bidding at a lower price point. The median sales price in View Ridge is $450,000 based on 13 home sales from January to April. The median rent, on the other hand, is $3,295 per month, significantly higher than in Wedgwood. Keep in mind, private listings and slow rental months can skew the median.

Both neighborhoods share similar attributes and amenities, and even the exact borders can be argued by locals, although many Seattle neighborhoods are loosely defined in terms of exact boundaries. Nonetheless, Wedgwood and View Ridge differ in terms of the current real estate market, so choosing based on your budget may the smart financial decision at first.

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New Carpool App For Seattle Parents

May 5th, 2016 by hillaryu

By Natalie B.

Wedgwood residents may have seen lately that Seattle is becoming one of the worst cities in the U.S. for congestion and time spent in traffic. As our city gets bigger and more and more cars enter the roadways, picking up your children from school or practice can be a task all its own. An estimated 17.5 million rides happen in Seattle each year to get kids to their afterschool activities, which can be a headache during rush hour traffic.

A new app launching this month aims to help parents save time, money and gas while transporting kids around the city. Pogo is a Seattle-based app that will help parents simplify existing carpools and discover new carpool connections to get children to the same place, safely.  Unlike Uber, Lyft or other ride-hailing apps, Pogo aims to take cars off the road and provide peace of mind to parents by using existing, trusted carpool groups.

After months of beta testing and winning a national startup contest from Verizon Wireless with a $1 million prize, the app will launch for iOS users in late May and Android users following within weeks.

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Recruiting Tree Ambassadors

May 2nd, 2016 by hillaryu

Are You a Tree Lover? Become a Tree Ambassador!

The City of Seattle’s reLeaf program is excited to announce its spring training dates for its Tree Ambassador project! Tree Ambassadors are volunteers who help care for Seattle’s trees and make a positive difference in Seattle’s urban forest. Tree Ambassadors are trained to lead projects that inspire residents to appreciate and care for Seattle’s urban forest.

We’re looking for Tree Ambassadors to lead two types of projects:

  • Tree Walks: Explore Seattle’s awe-inspiring trees with your friends and neighbors. Tree Walks are fun, positive community events that engage communities with the trees surrounding them. Tree Ambassadors develop tours to highlight interesting or significant trees in their neighborhoods and lead their walk as a public event.

Tree Walk volunteer training includes tree identification, map making, and organizing community events. Seattle reLeaf staff help volunteers identify good routes, map trees on that route, write text, and put together a public event.

  • Tree Stewardship: Help care for trees in public landscapes. Tree Stewardship projects engage volunteers in caring for neighborhood street trees and public landscapes. Tree Ambassadors adopt sites and organize work parties to weed, mulch, and care for the trees that make our neighborhoods greener and healthier.

Tree Stewardship volunteers are taught how to care for trees, identify and remove invasive species, properly mulch, and organize fun and safe community events. Seattle reLeaf staff help volunteers develop site plans, organize community work parties, and secure tools, mulch, and other equipment. Find a site to love!

Join Us! We only hold trainings for new volunteers once a year, so don’t miss your chance! No previous tree experience is necessary, just a love of trees. All Tree Ambassadors must attend an orientation training and at least one project training:

  • Orientation Training (Required): Thursday, May 26th from 6pm – 8pm at Seattle City Hall
  • Tree Walk Training: Saturday, June 4th 10:30 am – 2:30 pm in Rainier Beach
  • Tree Stewardship Training: Saturday, June 11th 10am - 3-pm in Wallingford

Apply today at our website: http://www.seattle.gov/trees/treeambassador.htm. Applications are due by May 18th. Contact us with questions at TreeAmbassador@Seattle.gov or (206) 615-1668.

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Nature Camp Junior Naturalist Positions Available for Teens Entering Grades 10-12

April 25th, 2016 by hillaryu

Know a high school student who enjoys kids and the outdoors, and is interested in earning service hours? Have them sign up to be a Junior Naturalist at Seattle Audubon’s summer Nature Camp!

The time commitment is a minimum of two weeks, for approximately 30 hours per week. Spaces are currently available for all ten weeks of camp (between June 27 and early September); apply soon to ensure position availability.

Applications are being accepted now.

Visit the Junior Naturalist website to learn more or email naturecamp@seattleaudubon.org.

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Save the date: Master Gardner Plant Sale & Garden Market

April 23rd, 2016 by hillaryu

2016 King County Master Gardener Plant Sale & Garden Market
Sat. May 7, and Sun. May 8
UW Center for Urban Horticulture, 3501 NE 41st St., Seattle.

Find plants from Master Gardeners and specialty growers, get free garden design consultations and quick tips, mini-seminars about growing veggies and herbs, personal shopping advice from experienced Master Gardeners, information booths about pruning, natives, rain gardens, and composting by local organizations. Find Mother’s Day gifts from plants, garden art and more from Master Gardeners and select area vendors. Lists of some of the veggies, herbs and tomato varieties can be found here.

Shop ahead of the crowds at the Preview Party fundraiser on Fri. May 6. Pick plants as you enjoy fresh creations from local chefs. Join Ciscoe Morris and Celebrity Chef Roy Breiman.

All proceeds benefit the Master Gardener Foundation of King County and the local Master Gardeners.

Rain or shine, we hope to see you and help you start the best garden ever this year.

For tickets, click here.

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Summer positions with the End Summer Hunger Campaign

April 19th, 2016 by hillaryu

The End Summer Hunger Campaign Corps is seeking 80 exceptional members to join a team of dynamic change agents working to end childhood hunger in King County!

Corps members are assigned to one or more Summer Meals sites, and their job is to make a fun, safe and engaging environment for kids. Members will plan and lead activities for kids and families and ensure that all rules for the Summer Meals program are being followed. This is the ideal opportunity to work with a cohort of 80 other End Summer Hunger Campaign Corps, engage with parents, kids, nonprofit leaders and community members on a daily basis, and do something meaningful this summer.

The requirements for this position include:

  • Must be 18 years of age
  • Must be a U.S. citizen, national, or legal permanent resident alien of the United States
  • Must be available 40 hours a week for five days a week from June 20th, 2016 to August 26th, 2016
  • Cannot miss more than two days of the entire term of service. No exceptions can be made.
  • Must go through a Washington State Patrol background check

Applications will be reviewed and interviews will be scheduled on a rolling basis. Early applications are encouraged. To apply, complete this application form. For more information, send them an email.

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Got Poem?

April 15th, 2016 by hillaryu


It’s National Poetry Month once again, and as usual, Seattle and its library are awash in poetry events.

The Seattle Public Library, Northeast Branch, is hosting its annual all-ages poetry contest, in which everyone is invited to submit a poem at any time in April, and potentially win prizes (including the Wedgie grand prize trophy) and read their poems aloud at the awards ceremony and poetry reading on May 18th. Several other library branches are also hosting poetry events in April, which you can find by searching the library’s online calendar of events for “poetry.”

Check out these online calendars of poetry open mics all over town – the PoetsWest Poetry Readings Calendar, and the Seattle Poet Calendar. And sometime this month, all you poetry lovers might also want to schedule a visit to the Open Books poetry bookstore in Wallingford, arguably the heart of the poetry community in Seattle.

Another not to miss event is the Seattle Poetry Slam’s annual Grand Slam at Town Hall, this year on May 2nd, in which the competitive performance poetry team is chosen to represent the city at the National Poetry Slam. And if you need a final poetry fix, the library will be hosting the 2016 Seattle’s Civic Poet, Claudia Castro Luna– at various branches from April 26th – May 8th.

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Mail & Package Thefts in the Neighborhood

April 10th, 2016 by hillaryu

We’ve received reports from several neighbors about stolen mail and packages. If you find yourself with missing mail or packages, always check with the carrier and, if it’s USPS, file a claim with them here.

The latest reports state:

  • “I saw opened letters scattered in our back yard”
  • “I had a package stolen from my front yard”
  • “I saw a package get taken from my porch”
  • “I have filed a report with USPS regarding missing mail for the past few days”

Here are a few tips to keep your packages and mail safe:

  1. Pick it up at your local post office: USPS, FedEx, and UPS all offer a service to hold your package at their facility, letting you decide when to pick it up. USPS’s Package Intercept program will redirect a package that hasn’t been delivered yet to your local post office or to any other domestic address. UPS can hold your package for up to five days free of charge, and FedEx will do the same. When your package is sitting safely in a facility, it’ll be impossible for anyone other than you to take it.
  2. Security cameras can work wonders for your peace of mind: not only do they deter potential thieves, you can also check if there are any packages sitting on your doorstep from anywhere, at any time. If your package is stolen, security camera footage of the thief can go a long way toward helping police catch them. You can also record and keep evidence if your package is mishandled or damaged.
  3. Deliver to your workplace: If you can’t be at home during the delivery, have the package delivered to your workplace instead. UPS, USPS, and FedEx all deliver to business addresses during their business hours, and unless your workplace strictly forbids it, you should be able to receive your packages during the day.

For the complete list, visit the SafeWise blog.

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FriendShop Pop-Up + 75th Anniversary Tote Giveaway

April 9th, 2016 by hillaryu

The FriendShop Pop-Up + 75th Anniversary Tote Giveaway is coming to the Northeast Library Branch, April 30!

Join the Friends of The Seattle Public Library for our Pop-up Shop on Saturday, April 30 from 11:30 a.m. – 3:30 p.m. at the Northeast Branch Library.

Pop in to purchase:

- Pre-owned paperbacks and children’s books for $1

- Goodies from the FriendShop, including mugs and jewelry

- Gifts for readers

They are also giving away 75 of their 75th Anniversary Tote Bags! First come; first serve!

Learn more on their website.

Your support helps the Friends advocate, educate and raise funds on behalf of The Seattle Public Library.

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