Slip-sliding

Since Michael returned from hospital on November 27, he has made a slow and steady recovery back to relatively solid mental health even though his physical symptoms of Parkinson's Disease are much worse. It seems that the powerful neuroleptic drug administered to control the extreme psychosis he was experiencing interferes with the body's ability to process the PD drug that allows more fluid movements. So Michael spends most days in and out of sleep, but some days he is lucky to have more than a couple of hours of mobility.

The past two weeks he has improved to the point that we have actually been able to make a few little trips out in the car, attend his Tai Chi class for a few minutes and take the occasional short walk down the road, though only yesterday we had to abort a walk when his drugs suddenly gave way and he was frozen by the side of the road. I started to run to get the car to take him home but a kind neighbour was driving by at that moment. She stopped to get Michael into her car. Mind you, even that was a challenge for poor Michael who couldn't easily get into her vehicle, his rigidity so severe, causing traffic to back up on our quiet little street. But minutes later we got him home and safely back into his wheelchair. That cycle of drugs gave him a mere 15 minutes of fluid movement.

Once again I am reminded that this disease is not on a straight trajectory. It is always a roller coaster ride from day to day, minute to minute. We are still not certain what caused the deep fall he took into severe mental illness beginning in early October. We do know that once his powerful drugs took full effect (three weeks) he was given a reprieve from the nearly constant psychosis. But the past few days have seen another little dip into the abyss. What could it be? He complained yesterday of mild cold symptoms and in the past that has been enough to render him more physically disabled for a few days. It might be that. His night time ravings have been focused on the disaster in Haiti; he thinks we are there and in the midst of terrible horrors. That whole tragedy has been enough to unnerve even the most sanguine among us so it's possible that is the cause.

What alarmed me last night was hearing him moving around a lot in the night (I have a baby monitor that allows me to hear every move he makes). At first I waited to hear if he called out for me as he has been doing the past few nights, in a state of high anxiety. There were a few minutes of rustling around but when I heard the floor boards squeak I was down the stairs and in his room in record time. He was out of bed!! Now to most that might not seem like much of anything, but for the past two months since his return from hospital, Michael has spent every night frozen in one positon, on his back all night, and by morning he needs great assistance to even sit up. But here he was at 1:30 am fully functioning, wandering around his room after having climbed OVER the rails of his hospital bed. No easy feat for the most fit among us let alone for someone with advanced PD many hours after his last dose of medication. The worrying thing about him now able to get out of bed himself in the middle of the night is that his room on the main floor is close to two outside exits, an easy escape if he is in the throes of mental anguish and delusions. My hope is that our two dogs, who sleep outside his room, would bar his way before I could reach him but there is no guarantee of that.

I spoke to our nurse this morning and warned her of this new problem which may never happen again but I am alarmed enough to be on high alert tonight. My hope is that we are not slip-sliding back into the black pit. At least this time I have strong medical support behind me and at the end of the phone line any time of day. Great comfort I can assure you.