Maybe this will help - Part 1

I had mentioned that I wanted to do a post outlining the problems my wife has experienced with Multiple System Atrophy and how we have worked to overcome them (where applicable). I am sitting here with her in a hospital room with lots of time so I thought that now would be good. I am doing this on my phone so forgive typing problems.


Realize MSA is a unique journey for each patient. The symptoms are similar (depending on the sub-type) but may occur earlier, later, or of a much greater or lesser degree of severity in almost all MSA patients. These symptoms, as well as the severity and timing are specific to my wife and her disease path. I hope there are enough similarities here to be of use to someone. This is NOT meant to be a medical dissertation. It will not be scientifically correct in all minutiae. As far as I know, it is all correct and based in fact, but I am not a medical professional, except in as much as a caregiver for any MSA patient has to be. (OK, back on a computer with a real keyboard now)



My wife's disease manifested itself first as syncope (fainting). The things we learned about syncope and some of the "tricks" we have learned to deal with it are as follows:

Syncope or fainting is caused by a lack of oxygen to the brain. In MSA patients (as in most) this is usually caused by a drop in blood pressure. The brain cannot get enough blood to properly oxygenate, so to "save" itself it shuts down. This means the person containing the brain shuts down, thus fainting. When you faint you end up not standing any more, right? When you sit or lie down, your heart can get more blood to the brain because it is not fighting gravity any longer (or as much). Therefore, this is a defense mechanism the brain has for protection against lack of oxygen. Sensible, but dangerous and annoying to the person.

Going from cool (or even "normal" room temps) to hot (or even a bit warmer) causes the blood vessels near the skin to dilate (open up) to help cool the body. This means more blood goes to the skin (ever seen anyone flush when hot?). If more blood is in the skin area it cannot be in the brain. Hence, syncope. My wife's most annoying and sometimes dangerous episodes were when she would get out of her air conditioned car upon arriving at work. When she was walking across the blacktop of the parking lot, (or just turning off the car and opening the door) she would pass out. This happened a few times, to the point the hospital where she worked thought she had a drug or alcohol problem. We started being very careful about temperature changes, especially from cool to hot. We would turn off the A/C in the car prior to arriving at our destination. We would allow some time with the door open, just sitting, waiting for the body to adjust to the temperature.

Syncope also occurs, especially among MSA patients upon positional changes. From a prone position to a sitting position can cause dizziness and fainting. The big one is from a prone or sitting to a standing. This is called orthostatic hypotension and is one of the defining features of MSA. To help this, try to avoid sudden changes in position (going up). Clenching the muscles of the legs and buttocks can help in forcing blood out of the lower part of the body (or to prevent it from entering as fast) and staying available for the brain. When standing, it is harder for the heart to pump blood to the brain. A certain "extra" amount of blood goes to the lower part of the body. In a person with a fully functioning sympathetic nervous system, this is not a problem. The heart rate is increased pumping the blood at an increased rate (raising blood pressure) briefly to counteract this. In a MSA patient, this is not possible. The damage to the connections from the sympathetic nervous system does not allow this to happen. The heart may race, the blood vessels may dilate, and other things that are supposed to happen do, but not correctly or all together, so the blood pressure cannot be stabilized. So, going from sitting to more upright, to standing slowly can help. Always have something or someone to hold on to or to hold on to the patient. Sitting down or lying down again will raise the pressure quickly if necessary. Going slowly, with assistance is the key.

I can see now this is going to be an extensive and long process. I cannot give the information I want to give quickly. So, this is now part 1 of what will be a multi-post process. Let me know if there are subjects or symptoms you would like me to address. I will try to do so. Your own tips and thoughts are welcomed as well.