The extreme abdominal pain that sent Michael to hospital in early August, that had been working up to that climactic moment for months with daily anxiety-causing discomfort, has completely disappeared.
The alarming breathing issues that also climaxed in late August, resulting in another more prolonged hospital stay, also gone.
The kidney/urinary tract infection that for two weeks caused all kinds of pain, restlessness and delirium - gone. The bad cold that followed close on the heels of that infection and threatened to descend mercilessly into his lungs, that kept him and me awake for two weeks of horrible coughing - gone. Mind you there has been a temporary recurrence of bladder issues in the past week, but it was milder than the first a month ago. That, I fear, will be an ongoing issue now.
Michael lurched from crisis to crisis for two months and things looked very bad. His mental state had deteriorated to the point that he was even unaware of his own identity many mornings and on several occasions he was unable to identify me or his son. He was eating very little, losing weight rapidly. We were all once again braced for the worst. I was reviewing my finances, generally making sure, as well as I could with a serious sleep deficit, that all our affairs were still in order.
Gradually over the past month, as I emerged from under the heavy cloud of insomnia, I realized that Michael is more lucid and generally healthier than I have seen in quite a while. This does not mean that the severity of his Parkinson's symptoms has improved; in fact, if anything, he is far less mobile, he is still falling and he is sleeping much more during the day. But the summer complications of the disease, that at times made me think Michael was on the brink of death, have all but gone. And a most life-affirming development, his appetite is once again very hearty.
I have given this return to health much thought and I think there are several factors at play here. One may be (and I'll get this one out of the way quickly for those who are uncomfortable with any mention of spiritual matters) that just about everyone I know, and probably even more, has been praying for him. I am a firm believer in the power of prayer and positive thinking even if it is simply an awareness that others are thinking of you. It is empowering. I won't cite here any of the scientific research done on this mysterious force but it does exist.
Another factor is that Michael often takes weeks to recuperate from a hospital stay. If you have been reading my entries you will be aware how devastating a hospital stay is for Michael, and the longer the stay, the longer the recovery time. In August he had two visits within a couple of weeks of each other, the first one lasting two nights, the second, eight nights. We are now more than eight weeks away from that last visit.
An adjustment in medications is also a possible reason for the improvement. The neuroleptic drug Clozaril, that was prescribed last November when Michael was so mentally ill, was increased slightly during the most recent stay in hospital for the breathing issues. It takes at least three weeks for any change in medications of this kind to take full effect. Since the cause of those breathing issues still remains a mystery - lots of conjecture but nothing certain - maybe this adjustment is finally having its full effect in controlling the frightening breathing irregularities. I'm not sure how but I'm willing to keep an open mind. The drug itself is a very dangerous one and makes me very nervous but to return to that frightening pre-drug state I believe is not an option.
A couple of weeks ago, I expressed concern to the visiting doctor that Michael's blood pressure and heart rate had both been alarmingly low. I asked if there was any way we could reduce his diuretic. The doctor agreed that of all the heart drugs Michael is on, this one made the most sense to adjust, so the next morning I reduced his Apo-Hydro by fifty percent as instructed. Since then his blood pressure has still been low but slightly improved. That could explain some of his general improvement; low blood pressure makes him feel extremely tired and lethargic and causes more falls.
In consultation with the neurologist, I have reduced his Parkinson's medication by twenty per cent. The reason for this change was survival, my survival. While he was in hospital for the longer stay in August, he was so delusional and anxious that he became aggressive, constantly trying to flee. The staff resorted to hiring guards and restraining him physically whenever I or anyone else he trusted wasn't there to keep him grounded. I suggested to the staff that they reduce his Parkinson's medication, thereby disabling him throughout the day more effectively and safely. On his return home from hospital I resumed his normal levels of the drugs but, when he fell ill with the urinary tract infection in September and became very agitated and manic, I once again reduced the drugs by the same amount. What I have discovered is, that with carefully timed doses, he is actually no more disabled throughout the day; in fact he now enjoys more mobility during his more wakeful times and sleeps better at night. He always sleeps most of the morning so I can stretch the time between doses during those sleepy hours and shorten the time between the more wakeful afternoon hours.
But I believe there is one small change I have made that could be responsible for much of the improvement. Constipation has been an ongoing complication for poor Michael, and the treatment over the past year has been drug therapy. First a nasty overly sweet liquid called Lactulose was prescribed and as the problem worsened, it was increased to the maximum dose. Then a "natural" non-prescription laxative called Sennosides was added and gradually increased to above the maximum daily dose. Finally a stool softener known as docusate sodium (trade name Colace) was prescribed and, again, increased to the maximum dose as all the treatments became less effective over time. When he was up to twelve pills a day (eight Senna, four Colace) and four tablespoons of the sickly orange syrup, I became alarmed when things deteriorated to the point that for several weeks he was only able to evacuate using an enema. Though I desperately wanted to, I was terrified to reduce the drugs because I was afraid that removing them would exacerbate the problem. I should add that all the while I was using the time-honoured home remedies of increased fiber and lots of fluid, though nothing seemed to help.
It was a close relative who told me about the wonders of flax seed for such problems. I dismissed it at first thinking it would be no more effective than all the fruit, whole grains, bran and fluid I was trying to shove down Michael's throat. But after the last hospital stay when things got much worse and his abdominal pain was nearly constant, I realized there was nothing to lose in trying the humble flax seed which can be obtained very inexpensively in almost any grocery or health food store.
I started Michael very gradually with one teaspoon of ground flax, pulverized in my ancient blender and soaked for a few minutes in a tall glass of water. On swallowing this glutenous mass every morning, Michael would grimace but bravely persevered. Two days later we had action, nothing dramatic, but it was independently produced. Do you know how exciting an event like that can be after weeks of having to assist this poor man perform what should be a normal bodily function? I could have danced in the street. Actually I think I let out a joyful shout.
Every day I increased the amount (he is now up to and stable at a heaping tablespoonful daily), not wanting to overdo things too quickly in case it caused further abdominal cramping. But the first miracle, before even regular activity was established, was the almost immediate disappearance of that nagging discomfort. Even if nothing else was achieved, that in itself was a major accomplishment; every evening I had watched Michael doubled over and anxiously rubbing at his upper right abdomen.
Finally after a few weeks of his body taking over on it's own once again, I began very cautiously to reduce the laxatives. Every Saturday night, as I set out his medications for the coming week, I reduced one of the three constipation drugs very slightly. The first victory was to eliminate completely the Lactulose. Now a few weeks later I can happily report that he is down to one Senna pill and one Colace, a mere two pills a day, not twelve. My hope is that we will be able to eliminate the drugs completely and it seems that we might. I will, of course, keep them on hand. Once his body has been free of the drugs for a period of time, I believe they will once again be effective when and if we need to use them. But my first line of defence will be to increase the flax before I do anything else.
I am wondering, too, if the flax might be responsible for the elimination of the breathing problems. I know it's a bit of a stretch but, with the disappearance of the upper abdominal pain as more normal bowel activity resumed, perhaps there is less pressure on the diaphragm. I'd never be able to prove it, of course, but the breathing issues did improve along with the disappearance of the abdominal problems.
Whatever the reason for all of these improvements, I think the general reduction of medications can only benefit his overall health. Obviously Michael will never be drug free - he needs them to survive - but it is encouraging to see such positive results after such bleak expectations. I know there will be further challenges and mysteries that befall him in the coming months and years as this disease advances but for the first time in ages, I feel as though we have regained some control. And that is empowering.
