Taking it one step, one day at a time

Seven years ago, Winston experienced the early signs of Parkinson’s disease – tiredness, a quieter voice, slurred speech and balance problems. Now, an afternoon nap is essential and he is struggling physically – but staying positive. Read parts one and two for the full story.

•••

Where do I go now?
That’s the burning question – not sure. Take every day as it comes, I guess. It’s a shit of a disease; it’s something you have to have to know how you feel. Some days I feel terrible – no energy, lots of pain in the body, mainly in the legs and hips. If I don’t think about every step I’m going to take, then I’m more likely to fall over.

The right-hand side of my body is a lot slower and weaker than the left. Fatigue is a major problem for me, probably because I have had a lousy night’s sleep. I’m normally in bed by about 8pm, because I’m so tired I can’t keep my eyes open.  But I’m wide awake at 2.30–3am. I can get out of bed and feel great, I could go dancing with hardly any balance problem. If I get any more sleep then that’s a bonus.

As the day goes on, I get very tired, especially if I’ve gone for a long walk or been busy doing mental things. So, the after-lunch nap is particularly important to me. I’m a lot better after my nap – until after dinner when I really hit the wall.

My Parkinson’s has four main factors: balance, speech, fatigue and closing eyes. Other symptoms are my handwriting, aching bones and muscles, anxiety and sleeping. I do not shake, which is the obvious diagnosis for Parkinson’s. I suppose I’m lucky not to have the shakes or I’d spill my wine.

Why did I get Parkinson’s?
Now, why did I get Parkinson’s disease? Not sure, but it’s not contagious, or hereditary. They say that pesticides are one of the main factors. I remember in my wharf days driving a bulldozer down the hold of a ship. There was so much dust from the fertiliser and sulphur that was being unloaded. When I got home, I used to sit in a bath for ages washing my eyes out with milk and trying to get the mucous out from my throat and lungs. Maybe that started my Parkinson’s.

The other main factor is stress, which I think may be the most likely cause. I had my own electrical business in New Zealand called Guild and Spence Electrical, and it became my life. It was incredibly stressful and sleep depriving.

So I don’t know how I got Parkinson’s, but I don’t dwell on it. I have it and at the end of the day it doesn’t matter how I got it; as long as I stay positive and busy, I’ll be fine. I would hate to get depressed, not able to swallow food or drink, or be bed bound and suffer from dementia.

Researching topics is important to us, although we don’t go too deep into it. We only really look at one site, which is about the latest updates on Parkinson’s, called Parkinson’s News Today, or we listen to a podcast by a guy called Larry Gifford. He got Parkinson’s when he was 46. He does a weekly podcast. We find him particularly good, funny and witty, but also serious about the disease.  You can hear him on When Life Gives You Parkinson’s.

One step at a time
I have been to physiotherapists and speech therapists at Nambour Hospital. I found them good at the time. But a lot has to do with myself. I’m a bit slack at times doing exercises but, overall, I don’t like to stay still for too long. I think my long walking days are over, although I do enjoy walking at my own slow pace. Poor Kathy must go on her own now to set her own pace. I’m good for about one or two kilometres then I’m buggered.

I have had the odd fall while out walking; it just happens when you least expect it. I must concentrate on every step, like saying big step, big step, but as soon as I start to think of other things, my feet become stuck to the ground. I get these small shuffling steps and then I fall over. I have fallen over on the street about half a dozen times, whereas I have fallen over at home about 100 times. You see, at home I’m not thinking about big steps, big steps. Just getting up and going is a major problem for me. I can’t help that I want to pick up a glass or dishes off the table. Not a good idea.

I have trouble walking through doorways, and steps – even small steps – are a problem. I have had my knees battered and bruised – lots of skin missing. I think I should invent air bags to wrap around my knees and elbows, to inflate before I hit the ground. Just as well I have a good size belly, as it has saved me several times during falls. No broken bones, just skin off and bruising, so can’t complain too much.

Medication and botox
My neurologist is trying to get my medication sorted out, which he said could be a factor in my falling. I’m worse when I’m tired. My speech has deteriorated a lot. I’ve developed a stutter, which is caused by my brain racing too fast to get the words out, with my speech trying to keep up. This is caused by an imbalance of dopamine in my brain. Hopefully between myself and my neurologist we can get the balance right.

It causes me a lot of problems when I’m in a crowded place with lots of background noise. It’s hard enough to get my sentence out but when people can’t hear me properly because of my soft voice, they say, “What? I can’t hear you” and that’s when I usually freeze on my words and start to stutter. I’m trying to slow down my speech. I am better talking to someone on a one-to-one basis. It’s very embarrassing when I’m trying to communicate to new people. But if I tell them I have Parkinson’s, they all seem to understand me a bit better then.

I get Botox in my eyes every three months, helps me keep them open, apparently. It’s not as common in Parkinson’s patients, but it’s one side-effect I’ve got. It doesn’t worry me too much, although the botox only lasts about six to eight weeks before my eyes start closing. My neurologist will only do them every 12 weeks. It’s not that I can’t open them, it’s just that they shut easily when I’m resting or tired. Apparently, it’s the muscles around the eyes that get slack.

We like going for a walk in the mornings to get a coffee, so that’s the start of the day. After breakfast I start to get a bit tired, we always seem to do something in the mornings, but by lunch time I normally hit the wall and want a sleep. It can be between 10 minutes to a one-hour kip on the bed, then I’m good to go again for the rest of the day. Drinky time is normally about 5pm or earlier if we are on holiday (which is nearly all the time lately). Retirement is a wonderful thing. Do what you want when you want, and not have to answer to anyone. What a great life.

Tomorrow – Part 4: Kathy’s perspective.

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Written by Winston Spence

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