Clinical Trial

Dennis signed up for a clinical trial for a drug being tested right at this moment. It seems this new drug has been used successfully in Japan for 18 years to control orthostatic hypotension. It is anticipated it will be available sometime next year, here in the US.

For those of you who did not practice your new vocabulary words, orthostatic hypotension is the extreme drop of blood pressure upon standing. This causes syncope, fainting, and is one of the more life-threatening symptoms that comes along with the diagnosis of Multiple System Atrophy.

Dennis is currently taking the drug midodrine to control his blood pressure difficulties. While this drug has managed most of the fainting issues, it also keeps his blood pressure fairly high all of the time. This causes a new set of problems such as the possibility of a stroke or heart attack. Sorry, if you are a constant reader, you have heard all of this before. As a great teacher, however, I know that repetition is important.

This new drug, droxidopa, appears to be safer and more effective than midodrine. Maybe it will control the ups and downs of his blood pressure without adding any new symptoms. Maybe it will stabilize his blood pressure for just a little while.

We are still counting our blessings. Changes have slowed and we are happy. At the same time, we will continue to look for new drugs and treatments that will make his/our life as full as imaginable.

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)