Thank you for visiting!

Thank you for visiting!

Friday, June 12, 2015

The little old man in the cream colored suit

Matt and I went grocery shopping last Saturday. We are getting pretty good at getting in and out of the store quickly, even with coupons! Saturday last was no exception, up until we began to push the loaded cart out of the store.

It was then that I noticed him -- a little old man, maybe 70-something, 80-something perhaps. He had just finished checking out and was standing at the door, holding a single gallon of milk and looking a bit disoriented or confused.

I glanced his way, looked toward the door, and then back at the gentleman, drawn to his apparent frailty and appearance. This was one of those unusually hot days for the Portland area, and he was wearing a cream colored suit. Jacket, vest, slacks, tie -- the sort of outfit one might wear to court, a special date, maybe even church for those of a certain generation.

But this was not a typical business suit: it was tattered and thoroughly splattered with dark stains. The cuffs of the pants, the cuffs and bottom of the jacket. They reminded me of the type of mess that arises when you jump around in a mud puddle.

So here was this little old guy, purchasing a single gallon of milk, doing his shopping in a business suit that looks like it's been worn 24/7 for the last several years.

Somehow this just broke my heart. I couldn't take my eyes off of him as he wandered out to the parking lot and got into a rather nice late-model car.

I wonder what his story is? Do you ever look at some stranger and wonder about his or her life? Is he happy? Does she have enough to eat? Does he have family or friends looking out for him? Is he living in that car?

Did he wake up today, decide to dress up for his trip to the store, and put on his only suit?

I said some prayers for him, and he has remained on my mind since.

Thursday, April 16, 2015

The flower

We had a wonderful visit last month with our son, his wife, and our adorable little Cecelia! It was, as expected, very hard for Matt, but he did manage to join us for a couple of meals and spent a little bit of time getting to know Cece a bit.

Cece decided Grandpa Matt was pretty terrific and kept lifting her arms and asking him to hold her. He managed to pick her up a couple of times although he couldn't hold her for long. At one point, he was holding her in the kitchen and he had to put her down and lay down on the floor as the cataplexy took over. She looked at him on the floor and decided it would be more fun to play with Grandma for a while. ;o)

The time was tough for Matt, it took him a good week to recover and he missed an important work deadline. But he still declared it was well worth it to get to spend some time with family.

I was very excited to get a couple of pictures of him holding the baby -- I don't think he has held any of our grandkids in the last 7 years or so.

Here he is with our little love:

And her she is again, giving kisses to Brooklyn:

This ends my update to the last blog post I wrote here.

 Except for the story about the flower:

I know it is hard for people who don't live with this disease to understand the constant disruptive impact of narcolepsy with cataplexy. I share these stories to try to help you see how much Matt and others with this disorder have to fight to participate in things that the rest of us take for granted.

Yesterday Matt ran an errand in the afternoon after one of his naps. When he returned, he stumbled in the door, fighting off an attack of cataplexy. This was pretty unusual because his triggers are usually related to spending time with loved ones or experiencing strong emotions.

I asked him if he was okay, and he answered that he had to go lay down immediately. As he tried to make his way to the bed he explained:

the kids across the street had given him a flower.

That was all it took to cause him to go into complete paralysis for about half an hour.

Saturday, February 21, 2015

They're (almost) here!

We are expecting Joe, Denae and Cece to arrive tomorrow afternoon. I am so excited that they are going to stay with us for nearly a week!!

I do feel bad, however, that this is going to be very hard on Matt. The last time we had family stay here, Matt had such a tough time that he only managed to be present with us for part of one meal. The rest of the time he was either sleeping or cataplectic or trying to avoid falling asleep or having an attack of cataplexy.

Feelings of love, tenderness or happiness trigger Matt's worse attacks. The stronger or more frequent the emotion, the more debilitating the attacks are. Think of the feeling you have when you get to spend time with someone whom you love very much, who you have not seen for ages. That feeling (which I am anticipating having in spades tomorrow!) quite literally paralyzes Matt. He starts to feel weak and then he completely unable to move -- he can not move, speak, ore even open his eyes!

This visit is going to be very difficult for him. I am hopeful he will be able to spend a little time with Joe and Denae. And it would be so wonderful if he could enjoy time with adorable little Cecelia.

I can't wait to see her sweet face!

Monday, February 9, 2015

small challenges

Just a quick note today.

We are anticipating a visit with our son, his wife, and their adorable little one, Cecelia. I'm very excited that we will have them here for several days, and looking forward to it very much! I'm sure we will have fun times and great meals together (Joseph is a chef and his wife Denae is quite a good cook also!).

However, there is always some tension leading up to a visit from the kids and grandkids. I stress a bit because I know that having additional people he loves in the house is really hard for Matt. And having the little ones around tends to cause him to go into status cataplecticus -- really long attacks of cataplexy.

He will, due to these horrible health consequences spend almost all of the time that the kids are here hiding out in our bedroom. Working when he can, resting when he can't.

I hate that Matt can't relax and enjoy watching our adorable little Cece toddle around and chase the dog. I hate that he will probably not be able to share a meal with all of us while Joe and Denae are visiting. I hate that he will very likely miss getting to join us for a day trip.

I hate narcolepsy.

Wednesday, February 4, 2015

We're baaaaa-ack! Or something.

I have sorely neglected this blog. Not for days, weeks or months, but for the past several YEARS!

As these past few years have gone played out, Matt's symptoms have gotten worse. And worse. And worse. He's missed weddings, birthdays, and pretty much all of our family gatherings. He has to completely avoid interacting with our grandkids, spending any time he is in the same house with them off by himself in a quiet room, either working on his lap top or napping. Usually both.

Other than weddings, I believe the last family activity that he attended was my Dad's 85th birthday party. He spent the entire time in Dad's spare bedroom, holding court. I would check in with him periodically to see if he was awake and to ask if he was up to saying "hi" to a friend or family member who had shown an interest in trying to interact with him.

As for the weddings, he managed to make it into the room where the ceremony was happening fMor our son Joseph's wedding. But when my sister got married a few months later -- he spent the entire ceremony unable to move from the bed that he had collapsed on as soon as we arrived for the ceremony.

More later, if you are interested.

For now, I'll leave you with this: life has been pretty hard and I just wasn't up to admitting what was happening or sharing our struggle. I was hoping we would win, and I would have good news to share. But we aren't winning. And the struggle has nothing to do with relationships.