Much Support; Lack of Awareness

MUCH SUPPORT

I always looked at support groups as a joke until I attended one for ALS with my mom and her boyfriend. This was my moms first time as well, so I am very happy I got to go with her.

All this time the media has altered my perception of a support group. What I expected to see were emotional patients that are put on the spot to talk about how awful they feel and how sad they are. What I experienced were happy, vibrant people who look at being diagnosed with ALS as  LIVING with ALS. Just because someone has a terminal illness doesn't stop that from living everyday. Sure there are obstacles that are thrown at them but they still get through everyday they have.

I won't go into the inspiring people I met because privacy is a concern but WOW comes to mind. It was great to meet people who are facing the same difficulties as my mom and to meet their caregivers, friends, and family. One person in the group has bulbar like my mom so it is easy to relate to their progression. The group is like a family. They crack jokes with one another like a bunch of comedians. More importantly, they made my mom, her boyfriend, and I feel welcomed into the group.


LACK OF AWARENESS

I can't get over the amount of health professionals and people in the world that have NO idea what ALS is. It is almost like people avoid it because of how ugly of a disease it is and that is why awareness is not spread like breast cancer awareness is. For example, did you know May is ALS awareness month? Most likely you didn't but EVERYONE sponsors and knows about October being breast cancer awareness month. It is unexplainable to me.

When I mention how many health professionals are unaware, let me show you how unaware. My mom is supplied with letters such as this.

 

 

 

This is a letter that is made to give to medical personnel and medical professionals working in an emergency room setting. This is how UNAWARE people really are. 

 

My ultimate goal is to spread awareness and hope those people who are made aware share their knowledge with others. Spreading awareness opens doors for more treatments, more studies, more knowledge about ALS, and hopefully all of that will one day lead to a cure.

 

I hope that you find time to raise awareness. You can do so easily by visiting your local ALS association page. They will have walks, bike races, and other awareness events to help support ALS. Purchase an awareness bracelet at one of the events or through your local ALS association and watch the questions come through. Every little thing helps raise awareness.

 

 

My good friend Mandi wearing her awareness bracelet.