jmgoyder

wings and things

Sep 19

Parkinson’s disease and (un)predictability

by jmgoyder

Unpredictability

There are many things about Parkinson’s Disease (or Parkinsonism as Anthony’s condition is described) that are unpredictable, especially when, in advanced stages, Dementia begins to insinuate itself into the situation. For example, the other night I rang Ants at the usual time of 7pm to say goodnight and he was lucid and loving and asked when I would be in the following day, then last night a nurse rang me and put Ants on the phone and he was terribly confused and didn’t know where he was. And I have heard, from him and from nurses, that at bed time he can become aggressive. Sometimes, when I am unable to get through to him (he is finding the phone increasingly difficult to operate), I’m actually strangely relieved, but mostly I need to say goodnight just to make sure he is okay and to tell him I love him, and hear him say the same. Whenever he is distressed, I find it nearly unbearable as he is a half hour’s drive away, so I can’t just pop in.

Predictability

Anthony takes a lot of medication but the two times of day I notice the urgency of timing are 11am and 4pm. For example this afternoon, I picked him up from the nursing lodge after lunch so that he could accompany me on a few errands. I hate doing this boring stuff by myself and he loves helping me even though he has to sit in the car while I jump in and out at shops, the bank, butcher, post office etc. Now, even though today I was given the 4pm tablet in case we were still out and about, by 3.30pm I could see I would need to save a couple of the errands for the next day or it would be impossible to get Ants from the car into his room. Why? Because he freezes. ‘Freezing’ is a PD term for when the person’s body freezes into stillness, making it nearly impossible to walk, talk etc. Almost without exception, this begins to happen to Anthony at 3.30 so that by the time he has his meds at 4pm he is frozen, but by 4.30 he is again able to move.

The unpredictable stuff makes planning very difficult but the predictable stuff allows me to time visits and outings. It is such a complicated disease.

Family Grief LOVE STORY Marriage Parkinson's disease Parkinson's disease dementia

32 Comments »
Sep 15

On the fence

by jmgoyder

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Animal Birds Friendship joy Wings

44 Comments »
Sep 9

No words for this much beauty – Gutsy’s father, Prince!

by jmgoyder

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Animal Birds Family Happiness joy Wings

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Sep 8

I will not lose my sense of humour!

by jmgoyder

Yesterday and today, despite visits from many friends and family, it was just Anthony and me. Yesterday his eyes got wet when I had to leave, and today his eyes went blank when I had to leave because he didn’t understand why I had to come home and leave him at the nursing lodge.

I wish I could laugh it away.

Family Grief joy LOVE STORY Marriage Parkinson's disease Parkinson's disease dementia Teenagers Wings

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Sep 6

Prince

by jmgoyder

I only have one white peacock (named Prince) and two white peahens. Prince’s tail feathers are fully grown now. I will try to get a photo of him doing the fantail thing soon.
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My young human prince (son, Ming) has rediscovered his princely ways. Obviously a lot of his recent angst was to do with having unwittingly fractured some of the titanium in his spine post scoliosis surgery, and having to quit milking cows, and feeling emasculated by not being able to ever lift anything heavy. We have now seen the surgeon again and Ming is scheduled for revision surgery in the next couple of months. It has been a bit of a dramatic couple of weeks with tears etc. but over that now and have bought ramps and a trolley to help us lift stuff that is too heavy. Example: as we don’t get a rubbish collection, we have to take stuff to the local dump. Today it was some heavy stuff but the trolley + ramp thing worked beautifully! Such a relief.

Ming’s biggest sorrow is that he won’t be able to carry his bride over the threshold! (BTW there is no impending bride yet!)
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Animal Birds Family joy LOVE STORY Marriage Parkinson's disease Parkinson's disease dementia Teenagers Wings

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Sep 5

Blogging and memory

by jmgoyder

Yesterday I was going to write about how glad I am that I started blogging back in November, 2011, because otherwise I would possibly have forgotten some of the events, details and emotions from then until now, and I don’t want to forget. But I was having a bit of a blah day so couldn’t be bothered putting the words down and decided, instead, to post the photo of the big red shed because I forgot I had already done this a few days ago. I’m surprised nobody commented on my memory lapse! And if my memory is so bad that I re-posted an already posted photo, then I am doubly glad of this blog as a memory prompter. But I still feel stupid – oh well!

Today I had numerous errands around town so I went to pick up Anthony to accompany me (as I often do now). He sits in the car with the radio on while I hop in and out, drive here and there. First though we met my mother at a coffee shop and, as usual, my ma and I had lots of conversation while Ants remained fairly silent (he doesn’t talk much now). Eventually, Anthony tried to get up out of his chair, indicating he’d had enough, so we left and, as I was putting him in the car, I asked, “How come you got sick of us?” and he said, with sudden articulateness, “Because nothing either of you said was of any interest to me.” As we drove off to the first errand, I could not stop laughing! His sense of humour is so slicingly droll.

The sun is having a hard time getting through the clouds but it is happening, this belated spring. Here are some photos to prove it (and so I don’t forget!)

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Animal Birds blogging Family Friendship Happiness Parkinson's disease Parkinson's disease dementia Teenagers Wings

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Aug 23

The big red shed

by jmgoyder

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Family Grief Happiness LOVE STORY Marriage Parkinson's disease Teenagers Wings

9 Comments »
Aug 22

Blog-cleaning

by jmgoyder

During yet another short blog break, I’m in cleanup/tidying mode so have tried to catch up with comments, and have visited other people’s blogs unhurriedly and with pleasure.

But I’m a little bothered by a couple of things:

1. I vividly remember re-blogging somebody’s post when I first started. At the time, I didn’t understand what re-blogging was and, as soon as I realized, I deleted it. It was about mothers and daughters. I apologize to that blogger for my ignorance.

2. During May this year, I took a blog break by unsubscribing from the nearly 200 blogs I’d subscribed to. Why the hell did I do that? Now I am still re-finding people. If I haven’t yet re-found you, please let me know!

One beautiful realization is that it isn’t necessarily necessary to engage with every single blog post (especially if the blogger is prolific!) There is no obligatory rule about this and silence is okay – such a relief!

I think, when I resume ‘proper’ blogging, on 1st September, I might do it on a weekly basis, rather than daily. Just until my heart catches up with my voice. So much is happening, and so much is not happening – argh!

Thanks.

blogging Friendship Grief

55 Comments »
Aug 16

Update on Ming’s scoliosis

by jmgoyder

For those who don’t know, our son, Ming, had surgery 18 months ago to correct a severe (75% curve) scoliosis. This morning we had what was supposed to be the last post-op. appointment with his surgeon. The X-ray showed a fracture to the titanium rod, just below his shoulder blades. Ming wasn’t as shocked as I was because a couple of months ago he lifted some really heavy junk in one of our sheds (he’s not supposed to lift anything over 20 kilos), and rushed into the house in pain, terrified he had damaged something. We rang the surgeon who was reassuring on the phone, but Ming still needed a week off from farm work and he was in a lot of pain and panic with his spine clicking and clacking strangely.

At the time, partly because the surgeon didn’t feel it necessary to fast-track today’s appointment, I just kept reassuring Ming that he would be fine and I remember saying things like, “You can’t break titanium, Ming; I’m sure you’ve just pulled a muscle” etc. Well, I was wrong, obviously, and the surgeon now wants to see him again in 4 months, with a slight possibility of further surgery to fix the fracture. The fact that Ming is no longer in pain is a good sign, but the fracture has pulled the curve (which had been reduced to 28%) back to 35%, and Ming is upset with himself for being stupid, and upset with me for being so overly, and naively, reassuring.

But the good thing is that Ming is okay with things and is staying with one of his best friends tonight, where he will have fun and hopefully forget today’s news for a little while. And tomorrow he and I will undoubtedly discuss the situation and look at the bloody bright side and carry on. Tonight I will let myself shed a few anxious tears in order not to do so in front of Ming.

The picture is before surgery. He is much straighter now, and taller!

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blogging Family Grief Teenagers

56 Comments »
Aug 15

Middle-aged? No way – I’m only 54!

by jmgoyder

I’ve just realized that not only am I, technically, middle-aged, but I have been for some time. Shock! This realization has been due to a series of health mishaps in the last month.

1. A gastric virus that had me bedridden/bathroom-ridden for two weeks, and a subsequent suspected cracked rib;
2. A rotten tooth that had to be extracted, culminating in an ongoing dry socket infection.
3. An eye test that revealed I need glasses for both distance and reading, and that I have early signs of macular degeneration, and that my strabismus (squint) is quite pronounced due to the fact that I can only use one eye at a time.
4. The flu (the sniffy, coughy, fevery one).
5. Confirmation of cracked rib today due to re-fracture.

Okay so this morning I had to take Anthony to our doctor for the routine burning off of multiple skin cancers but I made a double appointment so I could discuss my ailments as well. As a result I am on two courses of antibiotics for my tooth infection and the flu. Then I took Ants out to brunch. He was fairly mobile at the doctor’s but by the time we got to the restaurant, he needed the wheelchair. Hoisting him out of the car into the chair and racing into the restaurant because it was windily raining, then twisting us both into the far-too-small disabled toilet, then getting us to a table, I must have re-cracked the rib because, as we ate our meal, I experienced an increasingly severe pain to my right side every time I bent or turned. Once it was just to get Ants’ feet off the footplates of the wheelchair and I think that was the clincher. By the time I got him back to the nursing lodge, it was agony, so I raced down to the walk-in chiropractor (my brother is a chiro but he is away at the moment) and he confirmed that my rib was indeed fractured.

The doctor, optometrist and chiropractor all used the phrase “at your age” which I found alarming until I got home and googled “middle-age”. That’s when I made my discovery so I am sitting here quietly now, absorbing the fact that I am middle-aged.

Oh well, I guess I don’t need to stress about any wrinkles I have anymore because you’re allowed to have those when you’re middle-aged. And that’s a great relief!

This photo was taken before I was middle-aged. The little alien on my lap is Ming, now 19.

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Family joy LOVE STORY Marriage Parkinson's disease

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