‘I'm not going to bloody die from this’

It’s more than seven years since Winston showed the early signs of Parkinson’s disease – tiredness, a quieter voice, slurred speech and balance problems. He was diagnosed in 2014 and has had to alter his lifestyle. Read Part 1 here, or continue his story.

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Telling my family and friends
I guess when you have been diagnosed with a chronic disease, there is no sense sitting around being miserable. We decided to continue our love for travel. Okay, as time goes on, I may not be able to do some things we used to do – such as climbing steep hills or diving in the ocean. But that’s years away, isn’t it? We had to tell the kids first. I think they were shocked when I called them. They thought we were both invincible.

As the years roll on and our grandkids see me slowly getting worse, the first three will accept it, because I acquired Parkinson’s during their early childhood, so they have seen me as a ‘normal’ Poppa. However, our last grandchild didn’t know me before I got Parkinson’s and has become a bit stand-offish.

I would love to be able to play with the kids now – even going to the park to kick a ball around is a problem for me. My balance has become worse over the past 12 months, and my speech doesn’t help me try to communicate with them that well. It’s not their problem, it’s mine. I love them very much and maybe as they grow older, they will see me in a different light.

We then told my family who were incredibly supportive of my condition. My older bro did say to me that I had had a good life, thinking I was going to die. I said to him, ‘I’m not going to bloody die from this.’ I guess he thought the same as a lot of people think – how long has he got left?

Our close friends gave their support, which was really comforting. Hey, I just want to be the same old Winston and for them to accept me for who I am.

I guess over time I’ll get progressively worse. It doesn’t worry me telling people that I’ve got Parkinson’s now. In fact, now that my speech has got worse, it’s good to tell some people because it becomes easier to talk to them. They always say, ‘No problem, take your time’ or they know someone else who has got Parkinson’s and have a story to tell.

One of the most frustrating things is talking on the phone. I must sound like an idiot, as I seem to freeze on words. It doesn’t bother me when I talk to friends and family, but with anyone new, I need my darling secretary Kathy to do the talking. It has become too hard to communicate.

My acceptance of Parkinson’s
It’s only in the past 12 months that I have really accepted I have Parkinson’s, even though the symptoms have been there for years. I probably always thought that I would get better. I now realise that’s not going to happen. It’s always there.

One day I have balance problems and fall over all the time, on another my body is full of pain in the hips, knees, ankles and shoulders, which all become stiff and sore. That’s why I take Sinemet to add levodopa to my brain. They say that the dopamine in my brain is low and I need a top up. It’s important to take this drug regularly at the same time each day to give it a chance to work. This seems to be my biggest hurdle – getting the medication balance right.

Some days I feel terrible with no energy, but the next day I can feel great. I do try to take the drugs to match the way I feel.

Our travel passion
There’s no way that I would sacrifice our travel for the sake of my Parkinson’s. Kathy and I have travelled extensively throughout the world having been to about 75 countries. Following our retirement, we ramped it up a bit. I have found a way to get through the difficulties. I have felt very tired at times, but I think it has been worth it. I was firing on all cylinders during these hectic times.

We have visited friends and family across the globe, and in our hometown of Mount Manganui on New Zealand’s north island. We bought a motorhome early on and explored some of Australia. Following that, we went cruising around Croatia in a Gulet boat, drove through Europe, and did house swaps in Ireland, England, Austria, France and California.

It was during our French house swap in 2015 that Kathy had a serious accident. She was hit by a van after stepping out to cross at a pedestrian crossing. All I can remember is her flying up in the air and landing heavily on her face on the road. Half a second later and she wouldn’t be here. She was clipped by the side of the van. Her foot was run over breaking her toes, and her beautiful face was not looking good. She had her two front teeth broken, they had come through her top lip, her nose was cut open plus she had other wounds to her face. After two weeks in hospital following major foot surgery, she could fly home and start four months of rehab.

It is now 2017 and I have fared well over the past few years. Generally, I was surprisingly good, with just a few falls. I got a bit tired and my speech wasn’t that great, but all in all I was fine. My left knee was starting to play up a bit. After an MRI scan, I was told I needed a new one. I was starting to get a bit wobbly on my feet, had the odd fall but always put it down to my buggered knee. Overall, I think I slipped back a bit.

By 2018, my knee was really bad, bone on bone, so I was limited to what I could do. I took a three-wheel walker and a walking stick with me when we went on our Luxury Escapes holiday to South Africa. Good way of getting off and on planes and around the airports. I was treated well.

During this trip, I noticed a change. I couldn’t do the same things I had done two years before. I couldn’t walk up hills and was falling over heaps. It was time to get home and get my knee sorted out. I was lucky that my orthopaedic surgeon saw that it was time to have my knee replaced. The problem I had was the Parkinson’s balance issues, having the odd tumble didn’t help my knee rehab. Also, I was feeling very tired. My speech was getting bad, and I was having lots of falls.

Tomorrow – Part 3: Fatigue issues escalate.  

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https://www.yourlifechoices.com.au/health/your-health/older-fitter-sharper
https://www.yourlifechoices.com.au/health/news/saving-your-eyesight-early
https://www.yourlifechoices.com.au/health/news/are-brains-gendered

Written by Winston Spence

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