Tag Archives: advocacy

ALS Awareness Month

ALS Awareness Month

It’s ALS Awareness Month, and we’ll be helping you learn more about it and make a difference all week long.

What is ALS?

 

Sonal Shah worked hard as an ALS advocate as she battled the disease.

Sonal Shah's ALS Story

 

Joyce McNeal’s determination to overcome and raise awareness have marked her fight against ALS.

Joyce McNeal's ALS Story

 

Learn more about what researchers are focused on to fight ALS.

Researching ALS

 

Where is the research on ALS headed?

 

How can you join the fight against ALS?

 

How does your help go back to ALS patients? Learn more about care services.

Your Home Accessibility as You Age

Long View: Making Your Home More Accessible

A beloved family member is aging rather rapidly, not that we’d mention it of course. He already has arthritis in both knees and his left hand. His vision is not as good as it used to be, and we notice his agility just isn’t there anymore.

The problem is that his home has incredibly steep stairs, and the bedrooms and bathrooms are on the second floor. The furnace is in the cellar, which is only accessible through heavy metal doors and down another steep flight of stairs. And of course, the front door has stairs, too. The bathroom needs a lot of work. There’s no shower, just a huge slippery clawfoot tub. Home modification would be great, but a hundred-year-old house will always have its challenges.

These days, some builders are making structures with Universal Design, which focuses on providing maximum accessibility, regardless of a person’s ability to maneuver. Wider doorways, flat thresholds, and grab bars are a few of the tools that can make a home or commercial building more convenient for all of us.

My friend Therese Cardosi is the executive director of the Options Center for Independent Living in Bourbonnais. The mission of these centers (there’s also a location in Watseka) is to provide services, support, and advocacy to enhance the rights and abilities of people with disabilities in order to help them more actively participate in their communities and live self-determined independent lives.

“We are all in the process of creating the future for ourselves and our children, “ Therese said. “We don’t know what that future will bring, but we can predict that many of us will eventually need accessible places to live. The statistical projections are staggering.”

The National Association of Area Agencies on Aging’s mission is to “build the capacity of our members so they can help older adults and people with disabilities live with dignity and choices in their homes and communities for as long as possible.”

Sadly, their many services can’t make up for a home that doesn’t accommodate someone with limited mobility or sensory loss. For those of you who haven’t figured it out, I am the “beloved family member” mentioned at the beginning.

There seems to be some movement in the right direction, but will it be enough or fast enough to support the statistical crush of the Baby Boomers? Probably not, but at least some folks are starting the conversation, and I want to be a part of it.

Patrick Harness is a community liaison with a long history of experience in health insurance. If you ask him to pick a color, he always chooses orange, and he is known for his inability to parallel park.

Blind Prespective

Vantage Point: Local Organization Puts Struggles of Blind in Plain Sight

During my outreach travels for Health Alliance Medicare, I’ve been blown away by the beauty of the sun rising over the cornfields of the Columbia Basin and eagles nesting along the Wenatchee River. Recently meeting Jodi Duncan of Samara’s Foundation for the Blind and Visually Impaired, however, inspires me to never take my sight for granted.

Jodi founded Samara’s, named after her daughter who developed juvenile diabetes at age 9 and began losing her vision in her early 20s. Before passing from the disease in 1995, Samara asked her mom, “How come they can’t help people like me?”

In Jodi’s grief, she took that question to heart.

The foundation’s mission is to give people with sight impairments the opportunity to improve their quality of life and further learning through advocacy and technological support. Samara’s work includes providing audio crosswalks, Braille printers, magnifying equipment, teacher training programs, and camp opportunities for all ages. Samara’s outreach within Chelan, Douglas, Grant, and Okanogan counties relies on funding from events that Jodi’s small army of volunteers organize and facilitate.

One of the biggest myths about Samara’s foundation is that a person in need has to rent the equipment. All equipment is loaned free of charge, and 100 percent of the money Samara’s raises stays local. Some fundraisers include a quilt raffle or a “Dinner in the Dark,” where participants eat blindfolded.

For information or for ways to support Samara’s, please call 509-470-8080 or visit Samaras.org.

Through my work at Health Alliance Medicare, I regularly get the opportunity to help connect people to valuable community resources. But in meeting Jodi, I could not help but be especially touched as tears still well in her eyes while talking about her daughter. This showed me the foundation named in Samara’s honor is more than just a non-profit—it is the work of a mother’s eternal love.

Remembering with Alzheimer’s

Vantage Point: Sometimes Behavior is not a Problem, it is a Message

My grandmother died of Alzheimer’s over 15 years ago. I still remember my family’s denial. We couldn’t agree on her course of care, and it cut like a knife when she no longer recognized us.

Alzheimer’s is the third-leading cause of death in Washington. Yet current resources are treating less than five percent of those suffering. Recently, I attended an excellent presentation by Bob LeRoy of the Inland Northwest Chapter of the Alzheimer’s Association. Bob provided some staggering data which showed in comparison to diseases like diabetes, cancer, and HIV, Alzheimer’s receives the least funding for research. Yet it has grown the most drastically.

Nationally, more than five million people live with Alzheimer’s. With 10,000 people turning 65 every day, that number will grow quickly. Alzheimer’s has become the most expensive disease to treat in America and yet still lacks resources for support. Most caregivers of those diagnosed are unpaid family members.

Sadly, since my grandma’s time there have not been major strides in awareness, education or advocacy. But there are those trailblazing a path of hope. The Inland Northwest Alzheimer’s Association has a vision of a world without Alzheimer’s, where through research they can provide and enhance care to support all affected and reduce the risk of dementia through promoting brain health. Current resources include:

• Online workshops – Know the Ten Warning Signs
• Alzheimer’s Navigator – Help creating custom plans
• Community Resource Finder
• ALZ Connect – Networking with others who care for people with dementia
• Care Team Calendar – For coordination of responsibilities among family and friends
• Safety Center – Information and resources for safety in and out of the home

Find these resources at ALZ.org, or you may call 800-272-3900 for a 24/7 helpline.

Want to get involved? ALZ.org can help you find information on a 2014 Walk to End Alzheimer’s event in your area. In Douglas County, it’s a good idea to register your loved one on the Vulnerable Persons Register to help emergency responders assist and better meet their special needs. Find more.

Health Alliance Medicare encourages its members to take advantage of their comprehensive wellness benefits and in doing so hopes any signs of dementia can be identified early.  Until there is a cure taking action can help ease the pain of Alzheimer’s, both those for those who cope with the disease and those who care for them.