This information is for families. I share it because we had no idea what was going on in the months before his seizure and diagnosis. Please feel free to share your experiences here or to ask questions or email me.

First in a series;

BEFORE THE SEIZURE:

For us the nightmare started a few months before Michael’s seizure. He was acting strange and confused sometimes. I tried talking to him a few times about what in the world was wrong and he looked right through me…. We thought he was in early Alzheimers.

For the first time in our relationship he seemed distant and I honestly considered if he was falling out of love with me. It made me crazy a few times that last summer when he would just look right through me and not answer. It was the first time I’d ever seen him not respond to me. I would ask him why and he had no answer and it tore me apart. The doctors told me later that it was a mini-seizure type response.

He had odd occurrences. He walked slow. He forgot his belt and his pants would fall down. He had no hips and wore a belt every single day and there he was, just forgetting to put it on and his pants would fall down to his ankles (honestly…I had to give Gina money last year at this time for school shopping and take him to Legal Seafoods for lunch after we got to a mall and his pants kept falling down and she was embarrassed (which she never was before)).

And then he would be perfectly normal…himself…and I would forget about the weirdness.

A few weeks before his seizure he stopped wearing his waders when he fished in streams. He wore these old horrible sneakers and no socks. He would come home and take off his shoes and his feet would be caked with mud. He showered every day but his feet were always dirty in these weeks. It drove me crazy. I told him several times to get rid of those shoes and wear his waders.
He kept wearing them. And forgetting his waders.

He stopped shaving. Over the years, he occasionally would grow out his beard but he would keep it trimmed. In the months before his seizure he let it go a lot of times and didn’t shave it.

About a month before his seizure, he started to get a bit surly in ways he hadn’t been before. We had reservations for Gina’s birthday and I asked him to change out a tee shirt and he got combative in a way totally unlike him. When the entire evening was canceled because he wouldn’t change, he seemed unfazed that he was the reason (completely out of character to upset me or Gina especially on an important occasion). I was so angry and confused in a way I never had been before. Later that same week he forgot to pick me up at the bus station for the first time ever.

I had been writing the book at this time and he was antsy a lot and wanted to out to dinner or for a ride or something. Even though I said that we would do EVERYTHING once I finished the book (I was on a tight deadline), he wandered upstairs and would ask me the same question about going out several times a day.

These changes were hurtling so fast at me I didn’t know what to do first. My kids counseled me to be patient, try to get him checked out and we all looked up the symptoms of Alzheimers and he seemed to fit the criteria. I alternated between frustrated, worried and confused. I talked to the kids about it. They had all seen it. They had all been frustrated and worried and confused.

The last weekend he was well started out fine. I had finished my book and we decided to take the little boys to Bear Mountain. It was somewhere I had been to as a kid and I wanted to show it to Michael. I thought he would really like it.

I took CJ (age 4) and he took Derek (age 2) in the stroller. I have the photos on this page of that last weekend. Michael was slow but I thought that he was just placating Derek who is mellow whereas I was chasing after CJ who is a maniac. Michael seemed to really like carrying Derek around. But when we went from on top of the mountain down to the lake, he had slowed considerably.

Everytime I looked back he was slower and slower. At one point CJ and I circled back to him.

I had made a picnic lunch by the lake but the boys were more interested in running down to the lake to see the ducks. I was afraid they’d fall in or something so I ran over to them. Michael sat at the picnic table munching for a while. When we went back I said to him, “We can go to Cold Spring pizza instead. They’re not interested in eating.” He said “Oh pizza sounds good.”

On the way out the boys spied the playground and wanted to play. Michael helped Derek up the ladder. Then they wanted ice cream so I went down to the machine with them. When I came back Michael was eating all the sandwiches. I said, “What are you doing? We’re going to get pizza.” He looked at me absent-mindedly and said, “oh.”

We went back to the car and he did something he’s never done. He handed me the keys. We made our way to the pizza place and he said “I don’t really want pizza. Can we just go home?” I said well can you get me a slice since I haven’t eaten? I’ll drive around the block (there was nowhere to park) and you run in.

I circled a few times and he was there and got in and we started home.

Halfway home he was sitting there eating the pizza. I said, “That’s my pizza.” He said, “Oh.” I said you didn’t want any pizza. He said that’s good pizza.

That night I got the boys baths and settled them down for the night. Derek seemed stuffy/nasaly. Michael complained of a headache. I thought he and Derek had both gotten sick. I gave him Tylenol which he never takes and later Excedrin PM to help him sleep. So odd that he would take either of those things. I figured he really didn’t feel good.

On Sunday he would normally drive with me to take the boys home but he lay on the couch not feeling well. I didn’t put up a fuss because if I had he would have gone and it was not like him to beg off like that. I thought about stopping for Italian food on the way home but I was exhausted. I just came home.

The next day he went to pick up my dry cleaning and get some Italian food out. He seemed to be feeling better. When he came in with the food he had bought himself steamed mussels and a CATERING SIZE tin of spaghetti and meatballs. We had our own dinners so that was for him. I said, “What are you doing?” He said, “I wanted a meatball.” I said that’s a $33.00 tin of spaghetti and meatballs. He said “I like meatballs.” Normally I would have said more but something in me thought this is crazy. We all ate our food. He went on the couch to lie down. He didn’t feel well again.

My son Michael called and I told him about the nice, but odd, day at Bear Mountain. He talked about some things that had happened the last time he was in Mass with the boys. He had been acting very strange. We were all aware we had to do something. But to get Michael to a doctor if he wasn’t in pain or even if he was, was impossible. I thought I would use this flu or whatever he had to try to talk him into going to the doctor. We’d talk the next day. I had to do something.

Later that night, about 10 pm, I was upstairs on the laptop in the guest room. He came up and kind of pirouhetted onto the bed. He never did that. He always stood up and talked to me. He was laying on his back. I said “Hon, what are you doing?” He said “I took some Excedrin PM and I don’t feel well. Could it have an adverse reaction with shell fish?” I said no I took it all the time and ate shellfish.

I heard him in the office knocking around on his computer. I said, “What are you doing?” He said “looking up possible problems with eating shellfish with Excedrin PM.”

I said, “Oh honey…let me take you downstairs and cover you up. You have Derek’s cold. That’s all.”

He got up and when we got to the stop of the stairs, he grabbed my hand. I walked him down as you would a child. He must really be sick, I thought. He seems so lost. He said he thought he was running a fever. He seemed a little warm but nothing concerning.

I put him on the couch. I covered him up. He said his head was killing him. I said, “You can take another Excedrin PM if you want.” and he said okay. I gave him one with a glass of water, covered him up, kissed him on the head and turned the TV to a favorite show of his. He was drifting off already when I went upstairs. It was about midnight.

At 6 am I heard my daughter screaming at the top of her lungs.

And my entire life changed at that moment.

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