MY LONG AND SOMEWHAT DETAILED STORY
I was diagnosed in April 2018, just as we were moving back to Northern CA from NY, at age 64. My husband and (adult) kids realized something was wrong with me, but kept it among themselves because you don’t tell me ANYTHING. I’m kinda bossy, and always right.
In Feb 2018, I traveled to Uruguay with some friends to take a woodworking class, and then on to Argentina. I had done woodworking before, and was nominally skilled. But once class started, I couldn’t do anything! It was awful. I slept a lot, and finally my best friend sent me an email saying “you bow out of things when we travel, but this is ridiculous!” She was right. I slept and slept and slept, I had little interest in anything. I loved Buenos Aires, I think. I can’t really remember.
Back in NY, my family noticed I was slowing down, sleeping a lot, losing my memory (which had always been a source of pride to me), had developed a minor facial palsy (crooked smile), and was slurring my speech. No one told me though, they just worried amongst themselves.
One of our kids lives here about 45 mins away from our new home in Sonoma. My husband was still in NY. My arrival in CA on April 18 was a nightmare. I flew in to SFO, and couldn’t keep my mind together. I managed to picked up our car from a lot, and drove to Target to pick up a comforter. While at Target, I somehow managed to lose (1) my passport, (2) a credit card, (3) my mind. I didn’t know any of this at the time. I drove to West County Sonoma, and could not find the key to our house, which our realtor had left for us. My calls went unanswered because it was midnight in CA, 3AM in NY. I couldn’t get in. I decided to look for a hotel, and drove to our local airport, Santa Rosa, and found a hotel. That’s where I realized I only had one form of official ID, and the guy wouldn’t give me a room without 2 forms. I finally cried enough that he let me have a room. Where I lost (1) my iWatch, and (2) a bracelet.
I got a call from my son who told me he was at the house, and said we should go to breakfast. I drove home, put my stuff inside, and we went to my favorite restaurant in Guerneville. After we ate, he told me (per my husband) I had two options: [A] he could take me to the hospital, or [B] we could call an ambulance. He took me to the Hospital.
Once there, I was put through two protocols, one for stroke and one for MS. The MS protocol included an MRI which showed a LOT of lesions on my brain. My husband arrived the night of the 19th. So began the ADEM process. I was in the hospital, Sutter Santa Rosa, for five days.I had more tests than I ever thought possible, though I got over my lifelong fear of needles. Their Lumbar Puncture people were completely incompetent, making it the scariest and most painful experience of my life.
I was very fortunate to have two of the world’s best neurologists: Dr. Nancy Nealon at Weill Cornell in NYC, and Dr. Riley Bove at UCSF. Both specialize in treating ADEM and MS. I am so grateful for both. MRIs and Lumbar Punctures and Bloodwork are now all clear. WHEW!
I learned that my balance was off. No kidding, right? Also, my memory. I had to rely on my husband and daughter to fill in the blanks of things I couldn’t remember almost immediately after being told. It was an incredibly frightening time. My biggest anxiety came from the “not knowing.” I knew that I had ADEM, but I didn’t know what that meant for my life. Would it happen again? Would it get worse? Would I get worse? How completely would my life change? I was terrified of the unknown. In many ways I still am.
BTW, I also was given a battery of neurological tests - Yup, the same cognitive tests that Trump took (among others). It was the only time I’ve ever been able to relate to him. I wasn’t given a pass/fail grade though, I was given results. I had lost a part of my executive function abilities, which had been strong. I also lost some straight up recall ability. I knew this, though. Sometimes you just know what’s missing.
I also lost a bit of physical balance. Even today, when standing, if I turn sharply to my left, I nearly fall over or get a sense of dizziness that I need to take hold of. I haven’t fallen YET, so at least that’s good. In all fairness, some of this could be age-related, but I think most of it is ADEM leftovers.
The worst thing for me was and is the loss of my handwriting, which was my pride and joy. Yeah, I know, I’m too full of pride. I had a small journal book (Journal of No F*&^cks) in which I wrote some notes. Not only were they illegible, but evidently I’d also written some notes in French … which I don’t speak (except for some HS French in the 70’s). It was quite strange, to say the least. I still can’t decipher what I’d written.
Fortunately, or un-, I can’t remember a great many of the details of the time from Feb-June of 2018. What stayed with me was and is the fear of the great unknown, but here I stand as a testament to surviving it.
Sorry, not sorry, for the length of this. I hope someone will see something in here that they can relate to, and won’t feel so frightened or alone. I know that Ben’s Friends ADEM site has been a gift to me.
Stay well, wash your hands, and WEAR YOUR MASK.