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:
Feb. 2004
[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.
Thanks
Julie G
It just feels like yesterday….
jmgoyder 
wow jules…so much for so long. I hope you never again feel (or say) that you lack courage or strength. you have both in spades, and I know it’s love that fuels them. just wow. xoxoxo
To think that a decade has passed since this e-mail was written is astounding. The stamina of your love and spirit is something to be admired Jules. I feel for Anthony, it’s also a testament to him that both of you are such an amazing love story. 🙂
wow–what a lot you have been through–you are one strong lady always advocating for your son or your husband–who advocates for you?
It must seem like eons ago (now), but 10 years is a long time to be seeing, accepting and worrying. You have the strength of an ox, but it must be so hard to watch this degenerative disease for so long. I really feel your sadness and suffering watching the hunk of a farmer you married slowly disappear. Try to keep in the present and take life one day at a time. Thinking about only today, will make the ‘yesterdays’ and the ‘tomorrows’ much more bearable.
Sending you lots of love across the miles.
Vicki
xo
Wow. HUGS!!!
Diana xo
What a look back, bless your sweet heart. Yes, it would be great if there was a pill…
The more things change, the more they stay the same? xoxo you are a strong woman, Ms. Jules.
Wow, ten years. Ming all grown up now too. His condition does move slowly. What a decade you’ve all had.
Until I found the letter I didn’t even remember how looooong this has gone on.
Julie, What a powerful letter, and what courage it took to put those words to paper. I have known you for amost 2 years and your courage has always amazed me. The love you share with Ants has always caused a smile. But I have seen your pain as well, and my dear you handle that with grace and class as well. I doubt if my wife ever wrote down her feeling about my COPD, maybe it would have helped. Continue being you, continue your bravery and courage. It will see you through. Take care, Bill
Thanks Bill!
So long ago, Julie. You definitely had a premonition for what the future held for both of you. I note from this and what has transpired over the ensuing years, that you’ve always wanted to shield Anthony from knowing the worst. That’s true love. 🙂
Thank you for this lovely comment. Anthony still doesn’t seem to know but now it is the dementia.
that is an amazing find. in some ways, it must feel like just a couple of years, and in others, like many, many years –
Until I found this letter, I had no memory that this had gone on for so long. No wonder Ming has no recollection of ever having a ‘normal’ (as in fit and well) father. Thank you Beth! Jx
How very sad, what you must have been through beggars belief.
I think Anthony was diagnosed a couple of years before I even wrote this unsent letter. It was all so sad and hard at the time that I didn’t keep very good records of the events (blog is good for that now). Thank you, Susan, for your interest and support. Jx
You have amazing strength and throughout it all have kept your love for him so much alive.
He is a completely different man to the one I first fell in love with but somehow it still works in a strange sort of way. Thank you Elizabeth so much.
it’s impossible to ‘like’ this post, but I feel the heart in your words and remember a parallel journey as if it too, were yesterday. Xo
It is soooo hard isn’t it.
Just about the hardest..
Oh my. I didn’t realize you’d been living with Parkinson’s in your lives for that long. It must have been so difficult with Ming so young still. I agree with Rhonda: you definitely have courage in strength in spades. I admire you so much for sharing all you’ve been through.
I didn’t realize myself until I discovered this unsent letter!
If only we could live in the ten years ago when things seemed bad but they were not. Oh Julie, I mailed your book today! hugs
So excited about getting your book!
This disease progresses so slowly for so long for the patient and the caregiver in reality is almost a hostage to it as well… It would have been a good letter to send….
Since I have been waiting so long for a diagnoses etc… I took the bull by the horns a couple of months ago and I did write and send a letter to my Gastro specialist. After I sent it I thought maybe he would write me off as a weirdo or something but it did produce results in that he squeezed me in for the test that I had about a month earlier… (now I just wait till the end of May to talk about the results of it) Diane
Oh Diane – I am so glad you took the bull by the horns – please let me/us know the outcome. I feel so concerned for you and sending you love. Jx
Thanks for sharing this. Isn’t it strange and sad but so verifying to find something you expressed so well 10 years ago. It seems to confirm both how much you and Anthony have changed and yet stayed the same.
I was just looking through my old computer file and found the unsent letter – gave me such a shock that this has been going on for over a decade.
Such a bummer.
I shouldn’t read lists of symptoms, though, since I get sort of hypochondriac-ish.