Tuesday, April 29, 2014

Dutch Bros. Coffee // Annual MDA/ALS day!


Image Credit

Hello Friends!! I am breaking my radio silence to remind you that this Friday, May, 2, 2014 is Dutch Bros. Coffee annual MDA fundraiser! This is such an awesome event to raise money and show support for the ALS community. Go enjoy a great cup of coffee and drink for Dane, Linda and all of those living with ALS right now. 

If you participate we would love to see your photos! Take a picture of you and your drink and use the hashtag: #drinkoneforLinda so that we can stay connected throughout the day. I know that it would mean a great deal to my mom to see all of your support- and a picture is the perfect way to capture the moment! 

Monday, March 3, 2014

An Ode to Beauty

     

  When I look at you I see grace. 

          I see your beautiful face pre-ALS diagnosis. 
          I see passion and a fierce desire to fight. 
          I see a beauty that exudes compassion. 
          I see a lady destined for greatness 
          I see a Mom who has spent years empowering her children. 
          I see a Nana that puts love into action. 

When I look at you I see a radiance of beauty despite the paralysis and physical changes that ALS has brought. I see a Queen with a crown full of jewels. 

I look at you and think there is no greater beauty than you right now in this moment. 

          You are more than ALS.
          You are more than a timetable.
          You are more than a paralyzed face. 
          You are beautiful. 

Your physical beauty is and always has been just one piece of the incredible masterpiece that your life is.

I don't think I will ever understand humanity and the way that our society calculates beauty. To categorize and quantify beauty based solely on physical appearance greatly limits the art of the creator. 

As I have watched people question the physical changes that ALS has brought upon my mom I can't help but pity their naivety. To limit themselves to the outer appearance of my mom's beauty is childish. Those who have come to put a label on her are missing out on the depths and layers of beauty that she so effortlessly exudes. 

For all of you in the midst of this horrible disease of ALS- I pray that you will always know that you are beautiful. ALS may steal a great deal from you but it can never steal the beauty that is so intricately woven within your soul. 

 

Wednesday, February 5, 2014

American Recall Center


If there is one thing I am passionate about it's finding a community to stand with- a group of like-minded individuals to support you. It is so easy after a tragic diagnosis or life trial to become isolated and slowly lose control. I am so thankful that as a family we have found an amazing support team lifting us up on this journey with ALS.

I know that as a caregiver the amount of information thrown at us can be overwhelming. It's important to stay organized and in constant communication with others so that no part of our loved ones care goes unattended. That is why when I was contacted by Dr. Mario Trucillo with The American Recall Center, I knew his passion to empower caregivers and patients alike, is something I wanted to share with you. Although the American Recall Center is not exclusive to ALS patients it is a great resource for all healthcare  information and support.

Here is an excerpt of what Dr. Mario Trucillo has to say about The American Recall Center:

        " Today, the amount of people taking prescription drugs is increasing, and the number has reached well into the millions. With recent breakthroughs there is an increase of medications available for conditions like ALS. While this creates optimism, it is also important to understand the possible side-effects of newly developed treatments. 

          Although medical professionals strive to provide one-on-one support to their patients, they have begun to be increasingly stressed by the amount of patients that they have added to their rotations and may not always have the time available to respond to every question in a timely manner. For this reason, it is essential for patients to become self-advocates and stay aware of current medical device and prescription medication safety alerts. This way, you will always know the steps to take in light of new information regarding the safety of your medicines and medical devices. 

         Fortunately, The American Recall Center is available to serve as a resource that can make identifying dangerous medicines and medical devices easier for patients. On this website, you can begin researching potential recalls before your appointment, and then you can continue to monitor your health services throughout your treatment plan and well-past your recovery. 

         Whether you are concerned about the possibility of a recall, or need to know what are the best types of food to eat or want to know about a prescribed drug you can be certain to find the information you need at your fingertips. Here, complicated medical terminology is broken down into plain language that makes sense to the average reader. This can help you to stay on top of the latest research findings regarding the medicine and medical devices you use every day so you can stay healthy. 

         One of the best features of this site is one that you can use without having to even lift a finger- the Patient Safety Alerts. This is a personal notification system that you can customize with your medical information so that alerts regarding medicine and medical device recalls are sent directly to your inbox. To use this feature, all you need to do is choose the medical device or medications you use and include an email address. Once your account is set up, you can be certain that an FDA update will never be missed so that you can always stay in charge of making your health the utmost priority."

Is there a resource you currently use in your healthcare management that you find to be helpful?. I would love to hear about it. Please share in the comments below!