I'm new and glad to be here. Advice welcome.

[tryinghard]

Hi. I'm new here. My name is Karen and I live in the southeast of the US. I am 57 years old and began the journey to save my brain just over a year ago.

Everything began with a mild stroke in the prefrontal cortex on the right side of my brain last year. It came out of the blue. One day I was what I considered a normal, relatively healthy woman. At the time I was significantly overweight with a BMI of 32. My cholesterol was normal/high, I was pre-diabetic. I had lots of allergies, including environmental and medication allergies. The environmental allergies had just dropped off when the stroke happened. There had been a severe amount of stress in the few weeks preceding the stroke. Otherwise there was nothing significant. The doctors tested virtually everything and have never found a smoking gun.

The stroke resulted in mild deficits on my left side as well as some small cognitive shifts - mostly in language. For the most part those are completely gone. I worked hard using music (I play an instrument) and other means as physical therapy. I also tried EEG biofeedback for about 5 months. Don't know whether that contributed to my recovery - it' hard to tell. During that first six months my doctors tried me on three different statins. It was a disaster. The first one - the one I took the longest - was the worst. I started on it immediately after the stroke. Much of the problems that I had immediately following the stroke were probably only side effects of the statin - It caused chronic joint pain along with massive confusion. They pulled me off it and tried two others consecutively - again - joint pain was a basic thing but the confusion got so bad that at times I couldn't read either music or script. They gave up and I got better.

Sometime in that first six months I learned about my APOE4 status from 23&me. I am APOE3/4. Honestly, I had so much going on in my head that I read what they had to say and decided to worry about it later.

As I said, the stroke was mild and six moths out I looked and felt much better except for a nagging feeling that my memory was worsening. I continued having some very small events diagnosed as TIAs or possibly abnormal migraines. I could attribute some of the memory gaps to these but they have since stopped occurring and the memory problem still progressed.

After my body was clear of the meds and my head cleared I slowly realized that cognitively I was not the same. Although the problems seemed different than the aftermath of the stroke I initially blamed the stroke. It was concerning enough that I requested and received cognitive testing. I had it done on a good day when I was well rested and alert. It went well. I have always tested towards the high end of things - I'm no genius but fairly intelligent. The only real problems noted were with speech and it was noted that although my stroke wasn't really in a place to cause this but the neurologist noted that being ambidextrous is sometimes associated with a slightly different structuring in the brain. I went home happy and determined to work on the words and move on with my life.

But the memory problems kept creeping up on me. I wasn't just forgetting what I climbed the stairs to fetch occasionally anymore - I was having to repeat what I was after every step of every trip to keep from losing it. I began writing everything down. I would be working on a problem on a computer screen - realize that I needed to look something up and by the time I switched tabs to google had forgotten what I needed. Constantly. Sometimes I would get disoriented in familiar places. I would check my schedule in the morning then forget an important appointment a few hours later. I was easily distracted as though I was under a lot of stress even when I wasn't. I began to suspect there is more at work here than simply the stroke.

One day I was working on a claim that my insurance company had denied an it involved going through medical records and I discovered that many of the MRI/CT scans from the stroke and the moths following showed mild white matter disease - advanced for age. Looked it up - found its relationship to dementia. It led quickly to a more intensive look at the APOE4 finding from 23&me. About then my world began to implode.

Here I was, 57 years old - living my life based on my brain and intelligence. I felt like the rug was being pulled out from under me.

It got way worse fast - I'm certain much of that had more to do with serious stress created by my discovery. I was messing everything up - making daily mistakes, sometimes even critical ones. But after a few very bad weeks where all my research was learning abut dementia (ugh)I began to calm down and make plans. I went to my neurologists office and saw someone there who didn't seem to know anything about the gene and told me it was all stress and depression.

I made an appointment with my GP - wonderful person - who DID know what the gene was - and she scheduled me at a research hospital with a great reputation. I continued my own research, reading study after study on medications, lifestyles and diet related to dementia and/or APOE4. I kept having to repeat pages to get things clear but I tried hard to understand what I could. I implemented a low carb diet and began dropping weight as my first step. Soon afterwords I ran into Dr. Breedson's theories and checking more research and references. Ultimetly I began slowly but steadily adding dietary and lifestyle changes into my routine. I went to see the new neurologist. I told her what was happening and described what I was doing. She seemed happy with my efforts. She scheduled me for new neurological testing and got me an upcoming appointment with the memory care office.

I am doing somewhat better now. . The things I am doing seem to be helping. I have lost 27 obs - which has brought my BMI down from obese to simply overweight (28). I eat approximately 70% fat/25% protein/15% carb with a lot of healthy, organic meats and vegetables (I am just now learning to like veges so that's quite an improvement). I'm still working on getting most of the vitamins and elements from the food I eat but for now I am taking a number of supplements including a B complex (my homocystine is high), D3, Acetyl L Carnitine, DHA, Tumeric, a multi with zinc, Reveratrol, and MCT oil. Things are going better - I am able to concentrate for the first time in recent history and feel more "normal". Things still take way longer than they previously did but I feel more able to dig deep in my thought process and figure things out again.

None the less, this has been a serious wake up call. I'm certain that there already is a problem and fully comprehend the progressive nature of the beast. But I am determined to hold things off and live my life fully for a long as it is humanly possible. I am taking on new projects and moving forward. But I will never again be able to afford the complacency and bad lifestyle choices I have indulged in for so long. I suspect this website will be a godsend for me - just the fact that people here are living immersed in the hopes, dreams, experimentation and advances that I have suddenly found myself now confronting. Where I wish no one had to go through this it is seriously comforting to think that I am not alone. A community where I can actually discuss this is almost beyond imagining.

Thank you.

[Lucy5]

Karen, I am so glad you found your way to our community.

You have been through so much this past year; thank you for sharing your inspirational story with us! You clearly have a fighting spirit. I have so much admiration for how you've assessed your situation in such a clear-eyed manner with grit and grace as you navigated your way back towards health and optimism for the future. You are amazing - I do hope you know that!

Having found your way to Dr Bredesen's wonderful work, I can see you've been layering on and benefiting from many of his recommended strategies already. As you've just joined the group, I'd like to recommend our site Primer as an additional excellent source of information about our ApoE4 gene. The Primer's easy-to-access prioritized lifestyle strategies targeted at countering this gene may complement and perhaps reinforce what you've learned to date. We also have a Wiki with additional information on a variety of topics of interest to the group. To make navigating our site easier for newcomers and old timers alike, we have a How-To-Guide that you may find helpful.

Karen, please feel free to ask questions as they come up! There is so much hard won knowledge in this community. We continue to learn from one another's experiences, discussions about research, clinical trials and whatever other topics catch our interest. I'm looking forward to seeing you on the forums and hearing more about your journey. Whenever you feel like sharing, we're here for you.
warmly, your E4 sister, Lucy

[MarcR]

Welcome, Karen. Thanks for sharing your story in detail. I look forward to hearing more over time.

I'm awfully fond of this first post from 2016 and think you also may be inspired by it.

[JML]

Hi Karen,
You have certainly had an eventful year! What determination and perseverance you have shown in researching and learning so much about your brain and body health and making some very positive lifestyle changes. It sounds like you are on a very good path.

As Lucy5 mentioned, there are lots of great resources on this site, and a great community who are here for you if you have questions or would like to share. Keep in touch and let us know how you are doing.