Chocolate

Dennis has begun throwing up again at night. We are trying to decide if we should move his Nexium dose to later in the day, or keep him from eating for at least an hour before he goes to bed. The latter would be more difficult because there are days he is in bed by 4PM. Today he has a visit with his doctor, so we will have an opportunity to discuss some options. We also know that in the long run, we are the ones who really know Dennis best.

I bring this up because last night he asked me to come to bed to be with him at 6PM. I wasn't ready, and told him I would come at 7 if we could watch something we agreed upon. Then Dennis noticed that hockey was on, and I begged off and plopped myself in front of our other television. Naturally, every few minutes he was calling for me, because he had thrown up, again, and wanted me to clean up his mess.

One time, as I was cleaning up the latest smelly vomit, he asked me for chocolate. Now chocolate is not his friend on so many levels; chocolate makes him drool more, vomit more and he manages to get it all over his face, the sheets and the pillows. Eating it at night makes no sense, what-so-ever.

So what was my response? First laughter, then a solid "NO", and finally the statement, "you can have your chocolate for breakfast!"

Always, growing up, I wanted chocolate in the morning. Mother always said "no, you can have chocolate on Friday evenings only.

Is there some irony in this situation?

Until later,
Ann and Dennis

MSA, Travel, and Dining Out

Like everyone else in this world, when Dennis and I first met, we looked for what we had in common.* Travel was my number one priority, and I found that Dennis had the travel bug, too. It is still one of the most precious parts of our relationship.

Another passion we share is dining in good restaurants. We both like finding new and different places to eat and relax and have a good conversation. Add in a bottle of a good red wine and we were as happy as two clams.

Both travel and eating out have changed so drastically for us these past few years. Three summers ago, we traveled through Spain. Dennis was still able to walk (with a cane), eat anything and everything, and taste the wines in it's original state. He was still understandable, and we had many a day of great conversations over glasses of Malbec and Rioja while munching on Tapas.

Two summers ago, we visited Paris for 2 weeks. Dennis had been using a combination of wheel chair and walker for a few months, and we took his personal wheel chair along for the first time. He was still able to eat a good meal and drink that wonderful French wine. Let's not forget the desserts - he would eat at least one every day. Paris is a wonderful place to indulge, but it was becoming noticeable that accessibility was becoming an issue and travel would need to look different for the two of us.

We went to London that winter, and Dennis was in a wheel chair full time, and was having significant problems eating. He was still able to enjoy a glass of wine, but his energy level had greatly diminished. We ate fewer meals out, and spent more time at Jane and Ralph's home or in the hotel in London. Eating had become noticeably difficult - the drooling issues and swallowing problems were slowing his dining, some foods he couldn't chew and he seemed to be choking quite a bit. One evening in London we were out with Lola and we stopped for a bite. That was the night that we found out lettuce was problematic. Long story short, he couldn't swallow a piece of lettuce, choked and we all (quietly) panicked. Soon a doctor came over and a Heimlich Maneuver later, all was okay.

This summer we spent a couple of weeks in Ireland, and I knew that travel and dining would always be different for us from now on. Dennis drank all liquids threw a straw (yes, much to the Irish chagrin, even Guinness), with a chin tuck. It was necessary to chop up all of his food, and a nice, long dining experience started to become simply a long experience. By now, Dennis is using a wheel-chair full time it rained every time I needed to put Dennis into or take him out of the car. I was exhausted by the end of the trip, but willing to try another trip, once again.

Oh, there is more, but for now, let's just say that we will continue to eat out as often as we can, as long as it is before 2:00pm. We also are not ready to throw in the travel towel, but perhaps next time, we will take someone else along. Everything changes so fast, and everything gets more difficult, almost daily with this rotten disease.

Until later,
Ann and Dennis

*well, not like most everyone, but like most mature people

Eating Issues, Again

While we were in Paris, I had a great starter of goat cheese, roasted red peppers and eggplant. It inspired me to make a simple and light pasta dish for dinner last night. Dennis has not been able to eat spaghetti for some time now, but he has found the tubular pastas to be easy to chew and swallow. Inventing a pasta dish, inspired by the French, seemed a good choice for a hot and humid night.

I had roasted peppers and tomatoes as well as some sweet goat cheese, and I always have olive oil, garlic and pasta, and everything should have been super easy. But I wanted it to be special, so I made a bit of an unnecessary fuss when putting it all together. It turned out the extra touches were well worth the effort because the dish was absolutely delicious.

Dennis could not eat it. Too much saliva in his mouth. He couldn't chew the pasta. All that was happening was heavy, red drool pouring out of his mouth. I remembered the mechanical chopped meals at the nursing home, and took out the underused food processor to chop it up for him. It appears that a food processor is not able to do much with pasta either. He still couldn't eat the dinner.

He has lost weight again, and the doctor was concerned at our last visit. He assured her that it was because he had been in the hospital and nursing home for so long, and that I was a great cook and the weight would come back on soon, so she needn't worry. It's just that if he can't eat it, it's going to be hard to fatten him up.

I guess there is always ice cream.

Drooling Issues

Dennis started his pesky drooling last year sometime. The kind of symptom that gets in the way of some activities, but not all of the time and everyday. He is now at the frustration drooling stage and he drools through day and night, but it is being treated with the drug Robinul, or a generic, to be exact.

Now this drug has all those dreaded side effects, some of which are the very symptom he is fighting against. But of course they are, you know that as well as I know that. Truth be told, it already seems to be loosing effectiveness, anyway, and the doctor seems very reticent to increase his dose, so he most likely will not be taking it for much longer.


It's not always the drooling itself that becomes the biggest issue, it's the problems the drooling causes when Dennis eats, sleeps, talks, drinks, and does anything what-so-ever. When he sleeps he drools, so the pillow cases always have stains on them. Oh well, at least we aren't washing whole sets of sheets everyday like we did all winter. His catheter does have some benefits. Talking and being heard and understood is difficult enough for Dennis, add in the drooling and it is close to impossible to comprehend what he is saying. Even I have troubles most days and need to remind him to talk to me 1) only when we are in the same room, 2) to look at me when he talks and 3) and to swallow before speaking.

But it's the eating that is most exasperating for both of us, and I am sure it isn't all that pleasant for the other people present when he eats. Everything he eats ends up staining the drool which is still coming out of his mouth even though he is eating. After he collects enough colored drool on his face it begins dripping on his clothes. He is forever holding a towel up to his face to collect the drool.

Ah, drool. Sometimes he reminds me of one of those huge dogs that you just got to love through the drool. He is a sweetie and easy to love, drool and all. I wish it didn't bother him so much, but the man has his dignity, one thing this syndrome takes away from a person rather quickly.

Until tommorow,
Ann and Dennis