7 posts tagged “american”

When children are the caregivers

Posted July 13th, 2015 by

In 1998, the American Association of Caregiving Youth (AACY) was founded to help support a silent, vulnerable and hidden population in the United States – the thousands of children who provide care for family members, but are unable to manage their own lives independently. And to show these strong children that they are not alone, the AACY created the Caregiving Youth Project (CYP) that integrates healthcare, education and a community of support.

PatientsLikeMe is partnering with these two organizations to help shine a light on the lives of these caregiving youths. But who are some of these hidden heroes? Meet Katrina. She’s the oldest of three siblings, and growing up, she cared for her bedridden uncle, her sister (living with down syndrome and heart problems) and her brother (living with apraxia). But as she says, “this situation is a privilege because it is a challenge.” Read about her experiences in her own words below:

Katrina’s story
“Not many children grow up having a completely bed-ridden uncle living with them. Or a little sister with Down syndrome and severe heart complications. Or a little brother who could hardly hear as a young boy and who has Apraxia; but, those who do have a unique privilege. Why, you might ask, do I use the word privilege? Doesn’t the word “problem” or “difficulty” or “burden” describe the situation better? No. This situation is a privilege because it is a challenge. And it is in and through challenges that one may grow. Because my family has had these challenges, we have increased in love for one another and have been unified into a solid family. My parents have made enormous self-denying concessions to do what is best for their extended and immediate family in caring for those with physical and mental needs. 

As a child, my parents encouraged me and my siblings to help our uncle with simple needs, and we loved it when we were able to help. When my little sister was born, I was so proud and excited to be able to help care for her; it made no difference to me that she had Down syndrome–she was my sister. My mom was and is very disciplined with her time and responsibilities and taught me do the same. The importance of diligence and staying focused on the task at hand was important in general, but also because we never knew what might come up. My uncle, at that time, needed help almost every two minutes, and understanding my little brother was sometimes very difficult because he couldn’t communicate well with words.

I am thankful for my parents’ example of self-denial, discipline, and hard work, and I was able to carry those qualities, though probably not quite as well, into high school and apply them when doing homework, training for basketball, and leading the honor society. I am also thankful for their example of and passing on of a positive attitude; devoting time and energy to our family members and others is not a bothersome burden but a joy when looked at with proper perspective. Yet with the demands of household responsibilities, it was often hard to stay balanced getting my homework done while finding time to help my uncle and still be patient with my little sister too. But I made it through and finished on top and now feel somewhat prepared for the challenges ahead. And not only have these situations made me stronger and more mature as a person, but they enable me to help and sincerely empathize with those in similar situations.”

You can learn more about the AACY and the CYP by visiting their websites.

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You can make a difference in April

Posted April 3rd, 2015 by

Eight years ago this April, the PatientsLikeMe Parkinson’s disease (PD) community launched, and now, more than 12,500 people are sharing about what it’s like to live with PD. What better way to recognize this awesome community than to participate in Parkinson’s Disease Awareness Month?

Listen to Leslie Chambers, the president and CEO of the American Parkinson’s Disease Association (APDA), explain the facts about PD in the video below:

As she says, 60,000 people worldwide will be diagnosed with PD in 2015 – that averages out to 164 people every day, or one person every nine minutes.

This April, it’s not just about the 12,5,000+ PatientsLikeMe members living with PD, or the 60,000 people who will be diagnosed in 2015 – it’s about everyone who is living and has ever lived with PD, and all their family, friends and colleagues who have been affected.

You can make a difference. The APDA is running a “30 days, 30 ways” campaign all month long, so be sure to check their website daily to learn how to get involved. The Parkinson’s Disease Foundation is also participating in raising awareness, and they’ve created a great toolkit to get you started. And don’t forget to share through the #PDawareness or #Parkinsons hashtags.

If you’ve been diagnosed with PD, join 12,500 others in sharing to live better, together.

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