In 2019, I was diagnosed with ALS and started a nonprofit to support others with ALS called Paint For A Cure. I have made it my goal in life to aid others who have had an ALS diagnosis.
ALS is a fatal neurodegenerative disease that causes disconnection of the brain with the muscles. Over time, many lose the ability to walk and talk. There is no cure for ALS currently, and the diagnosis of ALS can make life difficult, because it is heartbreaking and overwhelming. Four tips I have for coping with an ALS diagnosis include:
1. Talking with your doctor and conduct research on ground-breaking treatments for ALS
While there is still no cure for ALS, there are medications to slow the progression of ALS symptoms, prevent health complications, and provide comfort and independence. One drug that I am advocating for getting a BLA (Biologics License Application) filed is NurOwn. Additional methods of staying healthy with ALS include breathing care, physical therapy, and speech therapy, among others.
2. Connect with other in the ALS community for support
Managing ALS daily can be challenging, mentally and physically. Connecting with others in the ALS community is one way to seek out support for any questions or concerns you may have. Even though people living with ALS may not be alike and will not experience the disease in the same manner, there is an important amount of collective wisdom and knowledge from health care providers, family members and caregivers. Other forms of support include financial support and accessibility support. Above all, being involved in a support group is an infinite resource to help maintain control of your life after being diagnosed with ALS.
3. Find something you are passionate about and dedicate your time to it
A great way to cope with the onset symptoms of ALS is to try out or discover a new passion to dedicate time to! Perhaps it is a fun hobby such as artistic endeavors, or other forms of leisure activities. Anything from discovering a passion for novels, to a passion for fishing. As the effects of ALS make movement difficult, there is assistive equipment to help with physical aspects of activities. For example, I started painting to cope with my diagnosis. Now, I use my wheelchair to create beauty on my canvases. Discovering a passion you have is a healthy way to keep your mind and body active while managing ALS.
4. Lean on your support system to help you navigate your diagnosis
Living with ALS can be overwhelming and stressful but having an entire support system is crucial to navigating your diagnosis. Support systems can include your close family members, doctors, therapists, psychiatrists and anyone else who supports your diagnosis.
Know that you are not alone and that this can be difficult to navigate! Also, if you are looking to preserve your story, a great company that I have aligned with is StoryFile. They work with AI, AR and VR to allow for real time video interactions with pre-recorded interviews. If you are interested in learning more about the company, please visit: life.storyfile.com.
Eric Weinbrenner is the founder of Paint For A Cure. Paint For A Cure was founded by Phoenix resident Eric Weinbrenner. On November 27th, 2019, the day before Thanksgiving, Eric was diagnosed with Lou Gehrig’s disease (also known as ALS). After receiving this overwhelming news, he turned to painting as a way to cope. This became a creative outlet to calm his nerves and mind, allowing him to shift his focus from his diagnosis to his art. Eric realized the healing power of creativity and was inspired to start Paint For A Cure. Paint For A Cure lends support to those affected by ALS. Their main goal is to provide medically accessible housing and monetary assistance to ALS patients and their families who cannot afford these necessities.