Good Days...Bad Days

Years before my body ever fell victim to the demise of Parkinson’s my mind and sanity was at the

mercy of Bipolar ever since I was a child. As I grew into an adult I was specifically diagnosed as Bipolar 1 mixed rapid cycling with psychotic features. I’m no stranger to unpredictable changes. I’m no stranger to bad days and I’m no stranger to good days. Although my good days could get me into trouble.

In January 2002 I wrote in my journal, “I find myself amidst another attack. It’s odd to refer to it as finding myself since it seems I can never hide from the pain. It always finds me as some late night stalker tormenting me following me everywhere I go only to jump out of the corner to make its presence known. I feel like I have made someone or something mad, to have this pain hurt so badly. Sometimes I wonder what it would be like to have no attacks. To be able to do the things I need to do. Would I get things done? Would I get better grades? Would I be more pleasant to be around? Would others tolerate me more? No pills! No darkness!

Life has become like a storm. The pain arrives either suddenly, like lightening or slowly, as the thunder from a far off storm building its intensity but instead inside my head.”

I liken my Parkinson flare ups and dementia to my bipolar episodes. Much of the time I was not aware of their impending damage that was about to enter our lives. But my wife on the other hand could spot the subtle changes in me on a minute scale. 

I could slowly slip into a suicidal depression before it was too late. Unknowingly I would find myself almost paralyzed bedridden while my mind was plagued with suicidal thoughts. Or I could one night go to bed feeling on top of the world only to wake the next day to have slipped into what I call the “Nothing Feeling,” a state where I only exist completely void of any and all emotions. The same could go for a manic phase.

My Parkinson’s and dementia are much the same. I seem to progress over night and plateau for months until I plateau again. My physical symptoms will somehow progress in my sleep overnight in one night. I will awaken to what almost feels like the next stage of this disease. I could go to bed and asleep feeling fine as much as I can only to awake barely able to stand and talk. And the progress stays.

I can usually tell the kind of day I will have by the night I have. I rarely sleep. I’ve suffered from insomnia since I was a child and have tried countless unsuccessful treatments. If my symptoms during my sleepless night are mild then they will be during my day as well. But if I’m symptomatic during the night then I will be during the day. Many times I get restless at bedtime which indicates a bad night. I could be anticipating going to bed all evening but as soon as I slide into bed, Wham! My body instantly goes into non-stop figiditing. I can’t get still. I can’t get comfortable. It’s not restless leg syndrome. It’s whole body restlessness and it tells me I’m not sleeping that night.

As I said I suffer from insomnia. But sometimes I do sleep. And sometimes I night wander in my sleep. I get up and wander around confused and in a daze asleep. I’ve never wandered outside yet. But I’ve gotten lost and unable to get out of a room. I have night terrors and sometimes hallucinate. I’ve even went into the closet and if you read my blog on the boogeyman I would have to be out of it to go into the closet at night. There’s no way I would open the closet door if I was lucid. After a night of wandering I’m dazed and confused the next day. My memory is shot as well as my concentration. But I also have these without the night wandering but not as often. I have no warning signs. This past week was a rough week for me. I spent the week with my brother and his family and I kept forgetting my sister-in-law’s name as well as my niece’s. I have no memory of Friday either. Which disappoints me because I feel I got cheated a day to spend with them. But it was also a busy week physically and I’ve noticed the more physically active I am the more symptomatic I am with my dementia.

I have good days. Great days. Days I forget I have Parkinson’s and dementia and even bipolar with anxiety. If it wasn’t for the cocktails of meds I take four times a day I could forget some days. But it doesn’t work that way. No matter. I still cherish those days and don’t take them for granted. As a matter of fact I don’t take anything for granted anymore.

When you’ve had a mind that’s stolen reality away from you at times, a body that will one day find a place to anchor itself and dementia that will finally one day take me from this world, I’ve learned there’s one of two ways to accept pain. One, it can either make you bitter and hostile towards the world you live in or two, it can make you appreciate your life and not take things for granted what God has given you. Since developing dementia I’ve come to see how ridiculous it is to get worked up over trivial things in life. I’ve realized there’s just not that much to worry over and get upset about.

So even my bad days are not that bad. I’m aware of each of them both good and bad. I’m aware when someone asks me something and I don’t know what to say. I’m aware when I don’t know the answer to something. I’m aware when I forget something most of the time. I don’t always know these things. When I do embarrassed is the emotion I feel the most. But this is the nature of my dementia, Parkinson’s with dementia. Your dementia may be different.