My journey with Parkinson's
Episodes
Feeling vulnerable
22 Apr 2026
Contributed by Lukas
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 ...
World Parkinson's Day
17 Apr 2026
Contributed by Lukas
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...
Repurposing and finding purpose
15 Apr 2026
Contributed by Lukas
A diagnosis such as Parkinson's is bound to affect how you think and what you do. For me, it has created many positives.
Famous people with Parkinson's - A legend in your own lunchtime
31 Mar 2026
Contributed by Lukas
What will you be remembered for|? What would you like to be remembered for?
Oh knickers!
27 Mar 2026
Contributed by Lukas
A bit of a theme going on... this was actually the first poem I wrote.
In the knickers of time - a poem absolutely not about Parkinson's
25 Mar 2026
Contributed by Lukas
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...
Access issues for disabilities
08 Mar 2026
Contributed by Lukas
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 no...
Living with uncertainty
02 Mar 2026
Contributed by Lukas
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 s...
What is a friend?
01 Mar 2026
Contributed by Lukas
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...
The embarrassing stuff
23 Feb 2026
Contributed by Lukas
Continence is not something you would discuss over coffee, but it is an important thing to talk about as a symptom of Parkinson's.
Things are going really swimmingly
23 Feb 2026
Contributed by Lukas
Swimming three times a week now and just some thoughts about swimming and Parkinson's.
Impulsiveness and Internet shopping - a confession
18 Feb 2026
Contributed by Lukas
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 sh...
It is better to know - Getting a diagnosis or not?
15 Feb 2026
Contributed by Lukas
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 th...
Generational shifts - Parent to Child - Child to Parent
14 Feb 2026
Contributed by Lukas
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 r...
So you've got Parkinson's - some thoughts and a poem
10 Feb 2026
Contributed by Lukas
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?...
A Health Passport and other information
06 Feb 2026
Contributed by Lukas
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 ti...
Do I want to know, or do I not?
05 Feb 2026
Contributed by Lukas
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 ...
There's a fine line!
31 Jan 2026
Contributed by Lukas
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 t...
Tough times and tough decisions
28 Jan 2026
Contributed by Lukas
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 t...
Things are going swimmingly?!!?
25 Jan 2026
Contributed by Lukas
Who knew relearning how to swim would be such a challenge?
Feeling frustrated
16 Jan 2026
Contributed by Lukas
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 int...
Why are we afraid of tears?
14 Jan 2026
Contributed by Lukas
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 te...
Things that help
14 Jan 2026
Contributed by Lukas
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 diff...
Feeling Parkies today
10 Jan 2026
Contributed by Lukas
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 th...
Feeling lucky to have Parkinson's
04 Jan 2026
Contributed by Lukas
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 perspect...
Presents vs Presence
03 Jan 2026
Contributed by Lukas
Christmas is a time of year when we give presents. However, the best gift you can ever give anyone you love is your presence.
Please help desk person - A poem
31 Dec 2025
Contributed by Lukas
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...
Seeking the positive
30 Dec 2025
Contributed by Lukas
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...
Changing attitudes and priorities
29 Dec 2025
Contributed by Lukas
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, ...
Is Christmas the same or is it different?
22 Dec 2025
Contributed by Lukas
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...
Forgetting
20 Dec 2025
Contributed by Lukas
It seems that most people think that Parkinson's is only a movement disorder condition. However, there are also effects on cognition and memory th...
Moving on - A village or facility, when and why?
15 Dec 2025
Contributed by Lukas
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 losin...
Ability vs Disability
10 Dec 2025
Contributed by Lukas
The challenge of trying to get people to understand why I don't want to delay anything I want to do.
"Am I being offensive?"
03 Dec 2025
Contributed by Lukas
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 ...
Priorities - what do you focus on?
23 Nov 2025
Contributed by Lukas
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 diff...
"Is lefty doing their job?"
21 Nov 2025
Contributed by Lukas
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 improv...
"Forgetting words - Is helping, helping or hindering?"
20 Nov 2025
Contributed by Lukas
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 ...
"Pride goes before a fall" - What does that even mean?
14 Nov 2025
Contributed by Lukas
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 ach...
"Cultural Confusion"
11 Nov 2025
Contributed by Lukas
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 ...
"Checking in. How am I doing?"
09 Nov 2025
Contributed by Lukas
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 c...
"By eck, By gum would you Adam and Eve it!"
07 Nov 2025
Contributed by Lukas
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 tha...
The Evolution of Christmas or "Oh god, are we talking about that again?"
05 Nov 2025
Contributed by Lukas
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 ...
Moving to the beat of my own drum
27 Oct 2025
Contributed by Lukas
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 ...
Parkinson's is it hereditary and would you want to find out?
27 Oct 2025
Contributed by Lukas
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 a...
Am I too hard on myself?
24 Oct 2025
Contributed by Lukas
Almost without a doubt, I will admit that I can be incredibly hard on myself. Today was not a great day...
Michael J Fox and giving Parkies a voice
22 Oct 2025
Contributed by Lukas
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 abou...
Live for the moment, but plan for the future
18 Oct 2025
Contributed by Lukas
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...
What will they remember? The gift we give our grandchildren
18 Oct 2025
Contributed by Lukas
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...
Grandchildren are a gift
18 Oct 2025
Contributed by Lukas
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. Hopeful...
Love me for what I am
14 Oct 2025
Contributed by Lukas
This post was inspired by a Carpenters song "Love me for what I am". It is about acceptance of who we are as a person and how important that...
Competition, Complexity and Conceit
11 Oct 2025
Contributed by Lukas
I think we all potentially have the ability to be competitive. I know I can be. But, in thinking about who is the main person I compete against, I rea...
Life, Love and Loss
04 Oct 2025
Contributed by Lukas
today is the 5th anniversary of my son's passing. I wanted to acknowledge that, he is never far from my thoughts, but the loss is always more keen...
Finding new ways to be .... going with things not fighting against
02 Oct 2025
Contributed by Lukas
OMG. I have just listened to this with my headphones on and it sounded terrible! Then suddenly thought to try it through my speakers and it was much i...
Resilience - the good, bad and the ugly
01 Oct 2025
Contributed by Lukas
For those of us who have had a number of difficulties in our lives, it is good to remember some of those tougher times. To remember that we got throug...
Confidence and 'Imposter Syndrome'
30 Sep 2025
Contributed by Lukas
Sometimes what people see in us, can be difficult to accept as it may differ greatly from our own view of who we are. I identify with the concept of &...
"Billy no mates" or is it Betty?
27 Sep 2025
Contributed by Lukas
It has struck me today how much our earlier lives can influence how we think and feel even 60+ years later...
Anxiety and Trusting myself
26 Sep 2025
Contributed by Lukas
Often lately it seems that there are small changes that could easily be missed. One of those for me is anxiety which I would not have had so much befo...
Getting the help I need for me
18 Sep 2025
Contributed by Lukas
My thoughts on what I need to achieve things in my life. I need to be treated as an individual, with my own needs and ways of learning and to account ...
When we were young.
18 Sep 2025
Contributed by Lukas
Some ruminations on how we were brought up and how that upbringing may help with what we face today. We were taught to be independent and to think thr...
The evolution of Christmas or "Oh God are we talking about that already?"
15 Sep 2025
Contributed by Lukas
Some thoughts on the Quantum leap from being a Mum in control of Christmas celebrations and how Christmas has evolved.
"Beware the grey-haired granny"
14 Sep 2025
Contributed by Lukas
A light-hearted poem about how the world might see us at different ages and stages.
Arthritis is a Bugger - a poem not about Parkinson's
12 Sep 2025
Contributed by Lukas
Every now and then I drop a poem in the mix. It is another way for me to work through thoughts and feelings about some big stuff. Like many Parkies is...
"Just in case"
09 Sep 2025
Contributed by Lukas
A phrase I've used many times in my life, so many times we do things 'just in case'
I can pick a Parkies - Can you?
08 Sep 2025
Contributed by Lukas
I find that I can pick someone with Parkies if I am out and about. I think my diagnosis and my history with my parents means I am 'tuned in' t...
When are we old or elderly?
05 Sep 2025
Contributed by Lukas
Is it just a number that we reach at which we are officially old? There is a number when we become a teenage (13) or an adult in a lot of cultures (21...
Know me not for Parkinson's
02 Sep 2025
Contributed by Lukas
Parkinson's is not my all. It is a blip. It doesn't deserve top billing. Think of me for everything that I am, not for a diagnosis that doesn&...
Opposites really do attract
02 Sep 2025
Contributed by Lukas
They say opposites attract and that is true. Some thoughts on how we support each other and try to understand each other. How we manage our difference...
Beware of Disablers
21 Aug 2025
Contributed by Lukas
We have all probably heard of enablers who encourage unhealthy activities or actions. But it is disablers, that this focusses on. People in our lives ...
It's not just "Shake and Shuffle"
16 Aug 2025
Contributed by Lukas
Parkinson's is not just the physical symptoms that people might recognise. It is so much more and can be quite different for each individual.
Bowls goals in rehab
10 Aug 2025
Contributed by Lukas
My first day back at bowls for over a year. I had some challenges to overcome and some self advocacy that was needed, but I am proud that I managed as...
Sometimes I forget about that "Perfect Pest Parkies"
08 Aug 2025
Contributed by Lukas
It may sound strange, but I often find myself feeling perhaps like a "normal" person - if there is such a thing - and forgetting for a momen...
Being my own worst critic or "Patience is a virtue"
04 Aug 2025
Contributed by Lukas
I am challenged by my recovery and can get frustrated with myself that I am not fully recovered yet. I need to cut myself some slack!
Health Funding Vs ACC funding NZ
02 Aug 2025
Contributed by Lukas
A comparison of the support that can be funded if you have an accident in NZ versus the support that is funded for those of us with a condition that m...
Carrying on decluttering
28 Jul 2025
Contributed by Lukas
A bit early for Spring, but I have been in declutter mode for the past few weeks and it feels good to get things in order.
Decluttering the heart and mind
28 Jul 2025
Contributed by Lukas
This podcast is about uncluttering ourselves, our hearts and our minds of all the negative things that have happened in our lives and the positives we...
Gently letting go of the past and moving forward - Episode 110
21 Jul 2025
Contributed by Lukas
I have been in spring clean or nesting mode this past week or two. Having a clear out of things that I felt I needed in the past and no longer need. S...
Just a taste about We are all unique
19 Jul 2025
Contributed by Lukas
The podcast is about how we are all individuals who may all be trying to manage lives with Parkinson's, but it is important that we are still ackn...
We are all unique - Episode 109
17 Jul 2025
Contributed by Lukas
A few thoughts on the importance of recognising that a person with Parkinson's experiences their Parkinson's in their own unique way.
Shedding my Social Work skin - Episode 108
14 Jul 2025
Contributed by Lukas
Finally today I feel like I have closed the chapter on my life as a Social Worker and with that, I have reclaimed my right to live my life on my terms...
Being your own best advocate - Episode 107
10 Jul 2025
Contributed by Lukas
Advocating for your needs and ensuring you get the information you need is very important. Some, I have heard have had up to 3 years trying to get a d...
These feet are made for walking - or not - Episode 106
09 Jul 2025
Contributed by Lukas
A new thing, now I have foot problems!
Am I anxious? - Episode 105
04 Jul 2025
Contributed by Lukas
Meeting with my Parkinson's Nurse and she described me as "an anxious person" . Both my husband and I were surprised and didn't think of me that way. ...
Across the generations - Episode 104
02 Jul 2025
Contributed by Lukas
A lovely day today with my 89 year old uncle and my 11 year old grand-daughter. I wanted to share my thoughts and gratitude for sharing time with both...
Travelling and Parkinson's - Episode 103
30 Jun 2025
Contributed by Lukas
Our recent trip to Rarotonga, held some surprises for me. I am slowly starting to progress I think. Here are some thoughts about things happening on o...
Travelling and Parkinson's - Episode 102
30 Jun 2025
Contributed by Lukas
This was the first time we had travelled internationally for a long time. Things are slowly progressing with my Parkinsons and I am noticing a few cha...
Getting back to me - Episode 101
15 Jun 2025
Contributed by Lukas
After years of chronic pain, I feel I am finally fighting my way back to a 'normal' life where my life is not all about how much pain I have. Feeling ...
Don't stay with a bad partner - Episode 100
14 Jun 2025
Contributed by Lukas
In a previous life I was with an abusive husband. I am fortunate that I now have the most supportive husband I could wish for. We are a vulnerable gro...
Memory - What do you notice? Episode 99
14 Jun 2025
Contributed by Lukas
Memory and memories are important to us. What do you do to help preserve your memory and exercise your brain?
Continence - A wee problem and a poem
09 Jun 2025
Contributed by Lukas
Inspired by my going to a talk about continence today, I thought I would write a wee (get it) poem about the subject.
What is love? - Episode 97
08 Jun 2025
Contributed by Lukas
Thoughts on love in many forms.
An older person is a person too - Episode 96
01 Jun 2025
Contributed by Lukas
Another wee poem about ageing.
Continence and other joys - Episode 95
01 Jun 2025
Contributed by Lukas
Just a wee short poem about ageing.
Sometimes being negative can be positive - Episode 94
27 May 2025
Contributed by Lukas
For me, it's all about being honest. About not feeling I have to be positive and cheerful all the time. Who could be with this condition? Owning the d...
Years in your life or life in your years? - Episode 93
24 May 2025
Contributed by Lukas
It's time for the bucket list. Time to plan and do the things that we have always wanted to do. To not put it off to tomorrow for tomorrow may never c...
Diet for health or Diet for weight loss? - Episode 92
21 May 2025
Contributed by Lukas
Some thoughts on the importance of a healthy diet, not just for weight loss, but for general health and wellbeing.
Is it fate or is it destiny - Episode 91
18 May 2025
Contributed by Lukas
What do you choose for your life? If we are fated to take this path, how can we take some positives from it to lead a better life? What influences bot...
Some Travel Tips to make life easier - Episode 90
09 May 2025
Contributed by Lukas
A few handy hints to make travelling easier with a disability.
A weighty problem (what will they think of me?) - Episode 89
03 May 2025
Contributed by Lukas
Being significantly overweight at the moment I am feeling self-conscious. Is my evil little brain telling me to enjoy being overweight because I will ...
Complex Comorbidities Continue - Episode 88
28 Apr 2025
Contributed by Lukas
When you have a number of health issues, they tend to cause some confusion when a new symptom arises. Is it in relation to conditions already known or...
Speech Language Therapy and Parkinson's - An interview - Episode 87
24 Apr 2025
Contributed by Lukas
This is an interesting interview with Kirstie, a well-respected Speech Language Therapist in Christchurch. I have had the benefit of her expertise bot...