Who helped you the most during your first months of ALS?

[Dagmar]

I found inspiration from reading about people who suffered catastrophic illness/accidents and were still trying to survive. One that come to mind is Gabby Giffords, who was shot in the head and lost her ability to speak or move. This was in 2010, the same year I was diagnosed. I’ve tracked her rehab and slow recovery ever since.
https://alsnewstoday.com/columns/creating-inspiration-folder-alex-smith-gabby-giffords/

[Sherry Campbell]

Earnest Hill, PVA, was instrumental in helping us navigate the ALS landscape during the first, and subsequent months, of my husband’s diagnosis. From helping with disability paperwork to getting our first ALS clinic appointment scheduled, we leaned on Mr. Hill and he never led us astray.

[Dagmar]

How wonderful and good that he helped you. A treasure of a resource for sure.

[Amanda]

Sherry,

That is great that you had such a great resource. I’m so happy for you. The first couple of months, Heck, everything in our ALS journeys, can be so difficult! I hope that our general caregivers are becoming more knowledgeable. Then maybe every pALS and their families will have similar experiences.

Amanda

[ICNU]

My family helped me the most. Also, my church friends/ family. Encouragement

And hundreds of people Praying for ME ! Plus myself being a devoted Christian

For many decades was involved in my Prayers! Simply I new were I was going

To Heaven that help the most. I told GOD Please don’t take me for awhile

Because I LOVE MY FAMILY SO MUCH I”M JUST NOT READY YET ! BUT HE IS IN CONTROL SO I UNDERSTAND ITS UP TO “HIM”. !

[Dagmar]

It’s so wonderful you had your faith to give you the emotional support.

[Amanda]

Being officially diagnosed was scary. I had symptoms on and off for years, and the SOD1 mutation so I always knew ALS was in my future. The doctor had been on the fence about making an official diagnosis because the progression was so slow, and then I would improve. This went on for several years. However, when it became official it hit me like a ton of rocks. I had several people that I had worked with for over a decade from the research team there who were very supportive. I cried for a few minutes and then started to laugh. I had prepared myself so many times before when I had appointments. So, I laughed and cried, wiped my eyes, hugged my support team and said, “I’m not going to let this ALS get me!” I knew that I couldn’t control the ALS, but I could control my reaction and how I moved forward. I learned that from Dagmar. She helped me in more ways than she will ever know.

Then I made the two and half hour drive home. Called my family and close friends. My mom was wonderful, and came to visit me a few weeks later. (She lives in Maryland and I live in SW Florida) This was in December 2022 – she is still “visiting.” 🙂 About two days after I got home I think the reality hit me. My anxiety shot through the roof, I couldn’t sleep, eat or focus. I called a close friend who lives a few blocks away. We were friends when we were younger living in Maryland. She has MS and I knew she would understand. She said, “Come over!” I went to her place and we talked for several hours. Cindy was the one person I didn’t have to be strong for. She understood some of what I was going through because of her experiences with MS. She has a calm personality and she really helped by just listening.

When I was ready and after I had called all my close friends and family (that took me about 2 weeks) I posted the information on social media. My friends were used to seeing ALS Awareness posts and they knew of my family history of ALS. I’ve moved around alot, both as a child and an adult. I’ve had friends reach out to me from all parts of my life. I have friends from elementary school who reach out routinely. I have to say that I leaned on Cindy heavily those first few weeks.

Amanda