Vocabulary

A few years back, I had a myocardial infarction, or a heart attack. Since then, I have learned how to advocate for myself and others, by learning what questions to ask doctors. I have found that unless you ask the right questions, doctors may not tell you much at all.

A year ago, Dennis' regular neurologist lightly hinted at the fact that he may have something more than simple Parkinson's, but never gave it a name. We started calling it Parkinson's plus, for lack of a better term, never knowing that this was a real diagnostic term.

As we were preparing to move Dennis from the hospital to the nursing facility this June, we were handed a pack of papers in a sealed manilla envelope. We were told to hand it over to the charge nurse when we arrived. Ya, sure. We were going to do a complete read through before we did any such thing. This is how we learned about Dennis' diagnosis of Shy-Drager.

I am not here to lay blame. I don't pretend to know why doctors tell or do not tell a patient certain information. I am sure that they are looking out for the best interest of the patient. I know that diseases/syndromes of this type are difficult to diagnose and can be easily mis-diagnosed. Perhaps malpractice suits have a part in this matter. Perhaps, it is merely, they do not know.

I am here, today, to share a two new terms and words that I have learned these past few weeks. As long as my vocabulary is getting bigger, yours might as well, too.

Syncope: a spontaneous loss of conscienceness caused by a lack of blood flowing to the brain. We lay people call it blacking out, passing out or fainting.

Dysauntonomias: conditions where the "automatic" (autonomic) nervous system is harmful to your health. I have found that there are many syndromes under this group, Parkinson's and Multiple System Atrophy are but two. In some people, one or more autonomic systems break down, such as a pulse rate. POTS is an example of this type of dysauntonomia. In rare situations, multiple systems shut down, which is what Dennis is experiencing.

Ah, I suppose we have learned enough for today. Prepare for a test later, though. Oh, a spelling test and a vocabulary test are both in order, I believe!

Until Tomorrow,

Ann and Dennis
Living with Parkinson's, Parkinson's Plus, Shy-Drager and/or Multiple System Atrophy
(and now, we know, Dysauntonomia)

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.

Girlfriends

Raquel showed up today and I could run a few more of those dreaded errands. Dennis and I used to have a shared-chores deal. He would do the bank, write out the checks for the bills, do the dishes and mow the lawn. He also did some of the laundry, but never, ever my clothes. I would do the cooking, the housework, the garden and my own laundry. We shared the grocery shopping. Naturally, these lines blurred more often than they were clear cut, but for the most part it worked out quite well for us.

Now I do it all. I know, many of you live alone and do it all by yourself, too. I've been single more often in my life than in a partnership, so I know how all of that works. However, it's different now. I am doing all of my own chores and errands as well as doing the chores and errands that are simply a result of his illness. Some days I get weary.

Today was not a weary day, I just wanted to whine there for a minute. Excusea bit of self-indulgence, please, just this one time. Truth be told, I will whine again, but let's just pretend that this is the only time you will hear me complain. It makes me feel better to genuinely believe that I am always positive and happy and all that.

Actually, today was quite pleasant, except for that spell where Dennis' blood pressure dropped and stayed quite low for a few hours. It scares the hell out of me when this happens, mostly because he looks so helpless. He was eating and couldn't swallow the last bite of food. He tried, but it just wasn't going down. He simply did not have the energy to swallow.

What made the day nice today was receiving a package in the mail. A friend, Charleen, who I have actually never met, sent Dennis a lapghan. A lapghan is like an afghan, only smaller so it works nicely with a wheelchair. She also sent this beautiful note telling us how it is filled with love, and that since she loves me, and I love Dennis, she loves Dennis, too. Can life get much sweeter than this?

Then he shed a tear or two, and old stoic me did the same, but behind his back, and then I hugged him and kissed him on the cheek.

Until tomorrow,

Ann and Dennis