Thank you for visiting!

Thank you for visiting!

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.