One of our newest members, Jessica (@JStellabotte), had gotten sick 5 years ago, and is now in her process of recovery. Specifically, she states that she has had to learn to do everything again.
This made me think about how many of our members have undergone the same thing. I thought it would be a good time to create a thread of recovery stories of people sharing their experience in rehabilitation. To all, please feel free to share your recovery process here!
Specifically, Jessica, we would love to hear about your recovery story, and even any set backs you may have had. Hearing about others’ recovery is something that can not only give some reassurance, but cheers us all up by letting us know that we are not alone. While there have been many people in our community in your shoes, everyone has their own recovery process, timeline, and setbacks.
Looking forward to hearing from you all!
My son was 5 when he was diagnosed. He is 10 now and has dyslexia and more learning disabilities. He also has sudden anger issues and more frequent headaches but dr’s say just to monitor him. He did have to learn to do everything once he woke up from the coma.
I’ve just “celebrated” 9 years since my attack, and yes, I had to relearn everything: how to walk, read, type, do math. It was a quick return (as I am stubborn and determined), but it felt like a long time to get things back to “normal.”
About 5 years ago, I felt I had plateaued, and that I was not back to my previous brain abilities. My neurologist sent me for neuro-psychological testing (4 hours of brain puzzles basically), and then we did it again 2.5 years later. I had a significant improvement, and that’s because I keep challenging my brain with new activities. I took up crocheting first (to help hand/brain coordination), then quilting (with a machine - and the patterns were great for my brain). I’ve joined DUOLINGO, a free language-learning website to stimulate that portion of my brain, and now I’m back doing LUMOSITY again, which has different kinds of puzzles.
Jill Bolte Taylor has a two great books to check out: MY STROKE OF INSIGHT and WHOLE BRAIN LIVING. Although her issue was a MASSIVE stroke, she had re-learn everything too, so her success still gives me hope.
I still struggle with extreme fatigue and some cognitive fog (cog fog), but I’ve recently changed my diet to an anti-inflammatory one (giving up wheat and processed foods, fried things and sugars, sigh), and it seems to be helping. Wheat was a big one - I gave it up a year ago, and cog fog went down significantly! I’m not saying it’s the cure for everyone, but for me, it helped.
Keep us posted!
I have mood swings and headaches, and I’ve been monitoring my sleep and foods I eat with moods. There are certain foods that I eat one day, and the next day I’m depressed or weepy or angry. Best of luck to you.
I’ll keep you in my prayers. Thank you for the advice. I try to put him to sleep earlier so he can get more sleep but not sure it’s working. Is there a website for the different foods I can try? Thank you again. Best of luck
Here’s the Auto Immune Protocol (AIP) basically: AIP (Autoimmune Protocol) Diet: Overview, Food List, and Guide
There’s also some research that says “tummy issues” can affect other areas, so some folks say to use the FODMAP list: https://www.gastroconsa.com/wp-content/uploads/2019/09/Low-FODMAP-Diet.pdf
Personally, the AIP worked for me. It identified mood-altering foods and others that cause my brain to be foggy and slow.
My neurologist was all for me doing the AIP, and was very supportive, so there must be some science behind it. I heard about it from a woman with a traumatic brain injury (hers from Roller Derby - far cooler than ADEM in my opinion). She told me that giving up processed, fried and many grain-based/gluten-filled foods helped her heal completely. So it was worth a try.
Still working on it!