IN THE KNOW: Families facing ALS or Alzheimer’s diagnosis can find support through free tools and communities

EverythingALS and EverythingAD founder Indu Navar shares first steps families can take after a diagnosis and ways caregivers can advocate for loved ones.

MACON, Georgia (41NBC/WMGT) – According to the Alzheimer’s Association, more than 7 million Americans have Alzheimer’s disease, a number projected to nearly double by 2050.  When a family receives a life-changing diagnosis like ALS or Alzheimer’s, the path ahead can feel overwhelming and uncertain. Indu Navar—founder of EverythingALS and EverythingAD— is breaking down the crucial first steps every family should take, how caregivers can find their voice, and the free tools available to help navigate the journey. 

Indu Navar, founder of EverythingALS and EverythingAD, has dedicated her work to empowering families affected by ALS (Amyotrophic Lateral Sclerosis) and Alzheimer’s disease after the death of her husband, who suffered from ALS. “I wish I had somewhere to go to. I wish I had some place that I could go and just listen quietly and give 30 minutes to an hour of what are other people in my situation talking about. You don’t have to talk. You can just listen,” Navar says.

First Steps After a Diagnosis

Receiving a diagnosis of ALS or Alzheimer’s can be overwhelming. Indu Navar recommends families take the following steps:

1. Take Time to Process: Allow yourself and your loved one time to absorb the news. It’s normal to experience a range of emotions.
2. Seek Information: Learn about the disease from reputable sources. Understanding what to expect can help reduce fear and uncertainty.
3. Build a Care Team: Connect with neurologists, primary care providers, and specialists. Consider joining support groups for emotional and practical support.
4. Plan Ahead: Discuss care preferences, legal matters, and financial planning early on. Advance directives and power of attorney can help ensure the person’s wishes are respected.
5. Reach Out to Organizations: Organizations like EverythingALS and EverythingAD offer guidance, support, and community.

How Caregivers Can Advocate for Their Loved Ones

• Stay Informed: Stay up to date with the latest research, treatment options, and clinical trials.
• Communicate Openly: Maintain open communication with healthcare providers. Don’t hesitate to ask questions or seek second opinions.
• Document Everything: Keep records of symptoms, medications, and treatments to share with doctors.
• Prioritize Self-Care: Caregivers should also tend to their own well-being to prevent burnout.

Free Tools and Resources for Families

• EverythingALS and EverythingAD: Both nonprofits offer free digital communities, webinars, and resource libraries for families and caregivers.  They offer clinical trial tools to help families find clinical trials tailored to their needs.