My journey with Parkinson's

This is a rather gravelly voiced me first thing in the morning, with my first recording of our eight week trip away to the UK. First time using my little travelling mic, so all in all some little adjustments so I am not out of touch for such a long time.

I had a crash in my car today, but luckily I was the only one with injuries and they were minor. It left me feeling vulnerable to judgements based on my age.

Today is World Parkinson's Day. I won't say "Happy World Parkinson's Day" but I acknowledge the place that it has in my life. In the shadows, in the background and definitely not centre stage.

A diagnosis such as Parkinson's is bound to affect how you think and what you do. For me, it has created many positives.

What will you be remembered for|? What would you like to be remembered for?

A bit of a theme going on... this was actually the first poem I wrote.

I wrote this silly poem after finding myself in rather a tricky position at bowls recently.It is me laughing at myself, which happens quite frequently. It has nothing at all to do with Parkinson's, but we all need to step away from it sometimes don't we!I hope you like it.

Sometimes it seems the planners and builders of today's homes just pay lip service to the issue of accessibility. The access can be limited and not as well thought out as they could be.

I'd like to acknowledge Donna Parkhurst a fellow person with Parkinson's who I follow. She was talking about this topic and it made a lot of sense to me. We all live with uncertainty in life and it is hard not to go into the "What if's" but I try to avoid it as much as possible.

It's easy to be with a friend when things are going well, it's when you hit the rough spots, the potholes in life that is Parkinson's that you know who is someone you can count on. What is a friend to you?

Continence is not something you would discuss over coffee, but it is an important thing to talk about as a symptom of Parkinson's.

Swimming three times a week now and just some thoughts about swimming and Parkinson's.

One of the side-effects for some of the Parkinson's medication is lack of - or reduction in impulse control. I see that in myself with internet shopping and am trying to be more aware.

As someone who has a number of comorbidities, I hav always found having certainty about what each health issue is, has always been helpful. Even if there is no cure, we can seek advice and support better when we know what we are faced with.

For those of us who have parented, life goes through many changes. As we age and our hair turns to grey, it often seems that we are the ones one the receiving end of our childrens' ideas of what we should or shouldn't do. How do we go from being the parent to our child/ren seemingly trying to parent us?

So you've got Parkinson's. Does that mean that everything else in your life must take a back seat and let this beast of a condition take over? No way, I say! Parkinson's is like the freebee you get with something you wanted to buy. You take it, cos maybe you feel you ought to, but you probably have no use for it and it just adds to the clutter in your life. Don't let Parkinson's clutter up your life. Relegate it to a dim dark corner that you hardly visit!

A Health Passport can be a useful document to have when you have complex health issues. It is a way to record a person's needs and wishes for a time when they may not be able to speak for themselves. I recommend this and that it be done early so that it is available for whenever it may be needed.

I'm not one for crystal ball gazing. For trying to guess what will happen in the future. I choose to focus on the here and now. But, with all the information that is directed to me relating to Parkinson's it is hard to ignore. But, I can choose what I look at and when.

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.

I have always struggled with people's expectations that I act in a certain way and not allowing me to do things my own way. I know that to be the best that I can be, I need to find my own path and trust in myself.

When I first started on this journey, it wasn't when I was diagnosed, it was when first my Dad and then my Mum got diagnosed. It got me thinking about heredity. Did I need to know whether there was a genetic factor or not?

Almost without a doubt, I will admit that I can be incredibly hard on myself. Today was not a great day...

I stumbled across an interview with Michael J Fox talking about the foundation he founded reaching 25 years this year. He said, 'It's not about me, it's about helping others with Parkinson's' or similar wording. It made me think about why I do my blog www.parkiesandme.com and why I do these podcasts...

From the time I was first diagnosed, I was determined not to look too far ahead and to do lots of travelling and spending time with family and not put things off. Living for the moment is how I get through, but some sensible plans for the future are also important. Talk about the future stuff like we did and then you can put it away and focus on here and now.

The only thing that really matters is spending time with grandchildren and knowing that they know they are loved. Memories of time spent remain strong even 60+ years, thinking about precious time spent with my Nanna.

I have been spending time with my granddaughters recently one on one. It has been lovely getting to interact with each of them as individuals. Hopefully, we are building memories for both of us.