My journey with Parkinson's

Sometimes it can be hard to gauge if what I am doing is too much or not enough. I am trying to increase my exercise tolerance, but yesterday my body told me I had overdone it! As I always keep saying "I need to listen to my body" and yesterday I did!

With a condition like Parkinson's there will be some tough decisions to make along the way. When is a good time to have those discussions? Or is there even a 'good time' to discuss at all. Here's my thoughts...

Who knew relearning how to swim would be such a challenge?

Sometimes you just have one of those days don't you? When things just don't go right from the start and maybe you should have crawled back into bed! Today was one of those!

Having been brought up in the 'big boys don't cry' era, I know for many men they still find it difficult to show their emotions. For me tears are a gift and a way to acknowledge our emotions and release them.

The things that help and support you can be very different from what others need. We are all individuals and experience this Parkinson's Pest differently. This podcast shares some of my strategies. Also, check out my Blog www.parkiesandme.com for more thoughts on "Things that help"

Playing bowls this morning in mid 20's was not the best for me. I don't like hot days at all and today's heat impacted on me, as I felt the energy draining from my body and felt quite vulnerable at times.

Today I met a very brave man who has only weeks to live and is dying from cancer. I wasn't having a great day, but it brought it all into perspective that I at least have years before me.

Christmas is a time of year when we give presents. However, the best gift you can ever give anyone you love is your presence.

I'm sure it's not just me, but I do find that many help desk people talk too fast for me to grasp information and that can lead to frustration both for myself and for them.

I know this diagnosis is a difficult one to accept and to be seeking the positive at times may seem impossible. However, I feel that I have been given the opportunity to make definite positive changes in my life because of it.

In a bit of a reflective mood with the winding down of one year and looking forward to new adventures in 2026. Twenty year old me and 64 year old me, certainly in the intervening years have changed attitudes markedly.

Some thoughts on Christmas and how as we change with Parkinson's we may need to find a way to do things differently and still keep the Person with Parkinson's (PWP) a part of the festivities.

It seems that most people think that Parkinson's is only a movement disorder condition. However, there are also effects on cognition and memory that are less obvious, but can also be difficult to manage.

This topic is because of a post on a PD Facebook page where a woman has lost her husband to PD. She now faces her own diagnosis, which was after losing him. Her grief must be immense.

The challenge of trying to get people to understand why I don't want to delay anything I want to do.

I have just been made aware that some feel the word "Parkies" is offensive. I don't intend to use this term as applied to a person, but for me Parkies is a separate entity and an unwelcome presence.

A video popped up on a Facebook Page for people with Parkinson's and those that support them. A husband was talking about how he would have a different priority if he were to have his time again with his wife. It resonated with me and these are my thoughts.

Some reflections and strategies for assessing how much my left side is compromised compared to my right side and how I am trying to monitor and improve left sided involvement.

Lately I have noticed a bit more trouble with finding words or remembering what I was going to say. Even I don't even know if I want help, so how does my poor husband know?

I was brought up - particularly by my mother - that it was a bad thing to "blow your own trumpet" and I should always be modest about my achievements. I never heard my mother say she was proud of me. So, I always ensured that my children were always told how proud I was of them and how loved they were.

I have written a poem about Cultural Confusion. The child of a Kiwi mum and Pommy Dad, I found myself straddling two cultures not knowing quite where I fitted in.

Every now and again I feel the need to do a bit of a check-in with myself and with those close to me to gauge how Parkies is behaving, or not as the case may be." This is one of those check-ups.

Just a few musings on the use of language. Even if you seem to be speaking the same language, if you are from different countries it is the use of that language with local sayings, etc that can make life interesting!

Over the years there have been many changes to how we 'do' Christmas. It can be a stressful time, trying to accommodate everyone's wishes and needs. This year, I decided we needed a complete change.