MSA: win the battle; lose the war

For those that are not up to speed on my mother, she is in the end stages of a disease called MSA (Multiple System Atrophy) see www.acnr.co.uk/pdfs/volume3issue6/v3i6reviewart1.pdf if you want the technical details, one of the best articles I've seen on the topic. In short, you lose control of muscles, generally by muscles tightening up so you can't use them. With mom it started with difficulty in going up stairs; her hand would lock on the handrail when climbing stairs - she would have to pry the fingers open with her "good" hand to break the grip. Eventually she couldn't write - no small motor control, couldn't climb over steep objects - like the threshold. Other functions are affected: blood pressure drops when you stand, which causes falls - as if limited muscle mobility wasn't bad enough to induce "clumsiness".

Loss of vocal skills, inability to chew, inability to swallow effectively followed. We now have to insert most of the consonants (and some of the vowels) in her speech, although the occasional "Yes" or "No" are clear. When agitated, the speech becomes somewhat clearer: like "leave me alone" after a gastric tube was placed in her nose. (She was not happy with the surgeon or the nurse).

Other systems are likewise affected (hence the name MULTIPLE system). Swallowing difficulties affect the lungs with the most likely result being aspiration pneumonia. (which brings us to the hospital a week ago).

I asked the attending physician about gastrointestinal complications of MSA as mom was having difficulty keeping food down. He responded that this was not an area of expertise that he could comment on. I've done some research and found some articles:
1. Those with MSA, who were capable of participating in the study, took nearly twice as long to pass food from the stomach to the intestines as the control group.
2. Peristalsis (movement of the intestines) is slower.
3. Tightening of the muscles, makes it harder for MSA patients to defaecate. (BOTOX treatment was suggested in the literature to loosen rectal muscles).

Mom was having trouble keeping ANYTHING down (water, which had to be thickened with corn starch to make it easier to swallow without aspiration, ice cubes, not to mention "solid" foods like yoghurt and pudding). Initial thoughts were that it was pneumonia or stomach bug related. A CT scan showed a hernia with an intestine poking through and being blocked. The surgeon was able to push the intestine back into place during his initial exam and insert a gastric tube to relieve the stomach pressure (a gallon total was drained from her stomach). He also performed surgery to repair the hernia - a minimally invasive hole (about 1" long) was created to insert the patch and check out the colon, which appeared to be good. (THAT'S THE BATTLE THAT WE WON).

As to losing the war, it appears that, so far at any rate, that nothing is passing from the stomach to the intestines, and though uncrimped, nothing is making its way through the intestines and out the back door. The initial estimate was that after uncrimping in a normal patient activity should commence within about 4-6 hours. We're well past 24 hours now. With nothing coming out, nothing else is being allowed to stay in. (Water and ice cubes for comfort in the mouth are removed by the G-tube).

I was watching mom tonight before I left the hospital. She was having trouble swallowing saliva in her sleep. The choking woke her up. The aspiration can't be good for the pneumonia.

Long term, we're losing the war. For that matter, short term, we're losing the war.