I just found this email draft in my files. I wrote it to Anthony’s doctor and specialist at the time, but I never sent it because I was too shy to be this upfront and personal and, also, neither of them were emailable back then. It gave me a bit of a shock to read my perspective of what was happening to Anthony in 2004, from my new perspective in 2014, mainly because I had lost track of how long Parkinson’s Disease has been part of our lives:
[Notes for Drs re Anthony Goyder’s Parkinson’s]
Hello Mike and Robert,
I want to document Anthony’s “condition” before I get so used to it I think it’s normal, whatever the hell normal is. So I am writing to you without Anthony’s knowledge because, from past experience, I have learned that to say this sort of thing in front of him only makes things worse. So this is confidential between you and me. I would hate for him to know that I am this worried and this pissed off.
He presents fairly well to you guys (bravado and all that), then, when we get home and he is back to ‘normal’, he just slumps again. I am struggling with the dilemma of whether to push him to make more of an effort, or to just let him be – ie. I am not sure anymore whether his lassitude, lethargy, lack-lustreness etc. are symptomatic of the Parkinson’s in a physical sense, or if this is a psychological thing – or if this is a side effect of the sinemet.
THINGS I AM NOTICING ABOUT ANTHONY SINCE PARKINSON’S DIAGNOSIS
He has an increased stoop, so much so that he seems to fill more space than he did before and, from behind, he is so bent over that it looks as if he is headless;
His movements are slower – terribly slow; his ability to grasp, pour, reach for, use cutlery, walk etc. – all of these are drastically reduced.
He is exhausted most of the time. He does chores like emptying rubbish into incinerator and long hours of watering garden (switching hoses etc.) but has to sit down often in between all of this. Sometimes he stands for minutes on end outside, looking at the ground. I don’t know what he is thinking.
He seems badly depressed but I’m not sure about this because we still do have a few laughs and great conversations. The main reason I think he might be depressed to the point of needing medication is that he has no energy or incentive or excitement about anything and will not come to watch Ming (our 10 year old) play basketball etc. In fact, Anthony will not go anywhere anymore except extremely reluctantly.
He often doesn’t shave, even if visitors are coming. He wears raggy clothes and he can’t pull his shirts down or his shorts up and doesn’t seem to care. He lies down a lot. He appears morose a lot – I do realise this lack of facial expression is yet another symptom, but sometimes it seems like real moroseness.
He can’t keep up verbally or cognitively with what is going on when Ming and I are having a conversation and he often misses the point of something that is said. This is not terribly noticeable except to Ming and to me. Anthony kind of goes a bit blank or preoccupied and I sometimes have to “translate” what Ming says to him.
Sometimes I may be doing something really mundane like cutting up vegemite sandwiches and he says something bizarre like, “What’s that? Is it meat?” when I’ve only just told him what I’m doing. I do realise this could be an eyesight thing and he refuses to wear glasses, so maybe I’m overreacting – ha.
He has become extremely self-conscious about his appearance (old, bent over etc. – his words, not mine) and avoids all social events.
He will not/cannot drive anymore, except to take Ming to school and pick him up on the days I am at work. The weird and worrying thing about this for me is that he was always car crazy and loved driving but he doesn’t seem to care that he’s lost this. If this is acceptance, fine, but it seems to me that this is a kind of resignation thing. I am not criticizing him – I am worried.
He is ultra dependent on me – my company, my presence. Whenever I go out (except when I go to work), I feel guilty about leaving him.
The drooling thing has nearly stopped, but is still there occasionally. I have always pretended not to notice, of course.
I confronted Anthony about some of these things during our recent row (not really a row, just me upset and him defeated) and his attitude was a silence of sorts – an inability to voice what he must be suffering. Ok, fine, and – yes – I do have empathy and 99% of the time I’m fine with this whole situation. But….
Anthony is worse, in most of the above ways, than when he was diagnosed. To me, this indicates that the sinemet is not quite keeping up with the progression of the disease. He is terribly reluctant to take more pills so it would be great if there were a pill with a higher mg content so he wouldn’t feel as if he were taking heaps. Someone has scared him re the fact that eventually he will become resistant to the drugs.
Once again, I do not want him to know I have said all this to you. It is very important that I seem calm and cool to him and I very much regret being upset and nasty with him the other day. Anthony is not a fighter, once attacked. He is strong, he is resilient, but he seems to crumple in the face of adversity. I do not want him to know any of the bad stuff that may be coming, so please don’t tell him.
It just feels like yesterday….