Last week I visited the neurology department at my hospital. I saw a different doctor (again) and two lovely medical students from the University of Otago. It was a visit I had not been looking forward to at all. I am sorry to report that it met my expectations in that I left in a more forlorn state than when I arrived.
We all know the facts. If you are unlucky enough to be diagnosed with young-onset / early onset Parkinson’s then we go home, look it up and read the word ‘degenerative’ with a sense of dread. More words than even I can muster have been, and will be, written about the fear this word produces. I felt lost, then realised that actually all was not lost and the medication indeed helped quite a lot. I was sad, but it was OK.
Then I needed to start Sinamet. Again I pondered my position but it was OK.
Now I need slow release Madopar overnight. The slow release Sinamet isn’t available to me due to a shortage, so Madopar it is.
I’m going through another mental adjustment.
Of course I’ve heard of this, talked about it, read articles. Yet nothing really readies you for the moment you look that bottle of pills in the eye for the first time, knowing it’s going to be a lifetime of commitment to each other. ‘Normal’ people need pills for a week, maybe two. Then you’re off them. They lurk in the back of the medicine cupboard. You should dispose of them properly, but you’re too busy, so there they sit. The reminder of the illness you eliminated.
I leave little stashes of meds around the place. I often forget to pick up some tablets if I’m in a hurry, or don’t expect to be out for a long time. Finding oneself without the requisite drug repository when you’re out for much longer than you originally anticipated can be rather irritating, so I have learned to leave caches of pills in car glove-boxes, tiny tubes that click to my keyring, various pill-boxes (the cute kind, not those monstrous plastic ones), and little bottles and blister packs in various handbags.
Yet I digress. There I was, back at neurology, being asked about how I felt, how are my symptoms, aren’t I doing well? I don’t know if I’m ‘doing well’. I can’t move well on a morning. My head and limbs feel heavy sometimes. I think I’m developing a bit of a tremor. It’s not only on my left side any more. The toes on my right foot are clenching on a morning. This was one of the very first symptoms way back when. But on my left. I don’t get it any more. I don’t know why. Yet I can assure you my toes are certainly ‘grippy’ on a morning now.
So here we are. My large, brown glass bottle of pills and I. Looking at each other. My son began to read the side-effects of the new medicine and we laughed raucously. Then he looked solemn and asked “are you really OK?” I hesitated. The tears welled up and I said nothing. He stepped forward and put his arms around me , nestling his head in the crook of my shoulder. He said nothing. I wept a little.
I felt bad. I am his Mum. I shouldn’t be the one comforted by him, he’s fifteen. How would it make him feel? We held each other tightly for a few moments then I kissed him gently on the cheek and said “thank you.” He gave me a nod. The other children piled into my bedroom and stopped. “What’s wrong?” “Nothing”. I replied. “I’m OK now. I’m going to be just fine.”
I think it’s good to be honest with my children. It lets them know you’re only human. We’re all human. But more importantly, I think it is important to show my children that we stand tall in the face of adversity. I could give in. I could so easily give in. I want to give in. It would be so easy. I’d just sit in the living room and bemoan my fate. Nobody would even blame me. “Poor Kitty,” they’d say, “she was once so full of life, so vibrant. Isn’t it a shame?”
I despise the fact that no matter how hard I try this thing is still here. The futility is desperate, hurtful. I will never know any respite. I will only find things harder, harder. I sometimes ponder how much longer I will know the periods of ‘normalcy’ that I enjoy now. They are shorter than they were.
Yet I want to climb mountains. Jump, run and live my life the way I want. I want to be healthy as I can, and have fun with my children, and I will.
So I shall adjust, find my new normal, and work a way through. I don’t know how long it will be until the next one, but I’ll do my best to make sure I’m in the best physical condition I can, whilst not forgetting to keep laughing along the way.
Until next time, Kitty.