What in the world happened that I did not write for five years?
A lot.
Someone else was publishing before me using the title I had thought I'd start with, so I paused to think what the better title would be. So now it's Parkinson's better than....
But why did I not write?
Because I have been deeply involved in my own battle against the beast.
Looking at the tone and content of my last post, it is clear that I was sleep deprived, anxious, suffering from depression, and experiencing a difficult separation from my life-long spooning bed-partner.
Starting with the last first, we were always spooners. We so loved each other that we spent the night wrapped around each other even after the honeymoon wore off. As we aged and the snoring set in and the things of life like teenagers coming and going and neighbor's noisy cars, that would have affected anyone. But the weird hours I sang, spoke from the podium, before Congress, and fought in numerous alien invasions, throtteling my gentle sweet man, were unknown to me. I was asleep. My spouse had to slog through the week.
Although my heart was broken for some time, I moved to the guest bedroom with my entrourage of REM Sleep Behavior Disorder personalities.
Prior to the move-out, I did seek help through a Sleep Disorder clinic at the recommendation of my new Neurologist. My old one moved away so it was necessary to begin a new conversation about sleep disturbance. I went to the specilist who had a sleep study done on me, and pronounced me an occasional snorer. He sent me on to an Orthodontic specialist who designed an appliance that caused me to salavate all night and to waken more frequently. After two teeth required failed root canals, necessitating pulling them, I threw the appliance into the box it came with and vowed to give it some consideration if I ever had nothing else at all to consider.
Moreover, the Sleep Specialist also had a background in Psychiatry. In taking my history he discovered that I had an adverse reaction after having taken Amantadine, the first med to actually have a positive effect on the shaking...The adverse reaction was heart arrythmias, and tachycardia. But as I wore the halter monitor necessary to diagnose what was going on with my previously orderly heartbeat, I noticed that before falling off to sleep it was as though my brain was searching for a channel. Weirdly I would hear snippets of conversation as though walking through a huge train station where various unknown strangers were engaged in discussions. It was as though I passed blindly by numberless people who I had no specific interest in and no recognition of. But once I had stopped taking the Amantadine, both the audio hallucinations at bedtime and the arrythmias also had stopped.
Nevertheless this Dr. was determined I should see a Psychiartist along with the Orthopedist, the Orthodontic Sleep Specilist(whom I fired), the Physical Therapist, and my own Neurologist. I went to the Neurlogist. I was already overwhelmed with sorting out what was causing my hip and shoulder pain. Now I had a doctor who wanted to add Psychosis to my list of thiings to cause middle aged doctors to look askance at the middle aged woman before them with vague pains and no apparant reason for their existance.
I told him the situation and asked him if he thought I was Psychotic. He shook his head. "That was the atropine effect of the Amantadine." I again offered that if he thought it was beneficial to engage a Psychiatrist I would go, but he said it was not necessary. End of conversation for the time being about my mental health.
While I could fall asleep within moments of sitting still, it was better than the rapid heart beat once I started carbadopa/levodopa (Sinemet) and I thought I slept better at night. I was beginning to make progress, I thought. I just had to be careful driving.
Well, that was putting it mildly. My third Neurologist was terminally ill and was closing his practice. My second Neurologist had moved. I got in asap to another Neuro but immediately knew it was a temporary relationship. I needed someone with experience and who was not going anywhere. Thiis gal was new and looked like she couuld relocate at a whim. But she was smart. I respected her while diling up the very Neuro (#2) who had unimpressed my spouse and myself before going clear down to Tyler, a two hour drive, the world-renowned #3. I got on his waiting list and let her run the show.
After seeing my twice and listening to my diatribe on why I though Sleep Specialists were not helpful to me, she changed me from the short acting version of Carbadopa/Levodopa and I immediately came to attention. I could think more clearly, felt less of a drunk effect when it reached its' peak, and even felt more rested. Although I had foggy episodes at about the same time and interval it was so much better on the new version of the Workhorse Medicine of Parkinson's.
I still had anxiety, still didn't feel safe doing long drives, still woke frequently at night, but it was ok. I had a daughter with Asperger's who needed me to get her from the bus every day and to and from her institute on bad weather days. I no longer had to fight overwhelming sleepiness at the wheel.
In the guest room we invested in better bedding, and although I will always miss those nights comforted in my husband's arms, I take comfort that he can sleep at all. I could have lost him to Melanoma. He has a horrible arrangement to sleep with pillows piled to support uncomfortable shoulders and limbs where muscles were cut or removed completely as they cut away bits and more bits chasing his cancer. It was not realistic to expect under either of our circumstances for things always to remain the same. Our compromise became starting the night off spooning and whatever else developed and ending our time together for the night by saying "I love you!" and being happy we have each other.
Not bad for an old couple, huh?
