My journey with Parkinson's

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.

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 is for me.

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 realised that person is actually me!

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 keenly felt on this day, the day we lost him.

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 improved! Perhaps if Parkies wasn't messing with my brain, I might have thought of that sooner! See below: "This has been a challenge in editing, with interference on playback. It is an example of the learning curve for someone with Parkinson...

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 through them and now we will face this interloper - Parkinson's - and face him head on and our resilience will get us through.

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 'Imposter Syndrome' as I have never felt completely confident in what I do. I felt that I externally projected an image of a confident person when in truth I am at times very lacking in confidence.

It has struck me today how much our earlier lives can influence how we think and feel even 60+ years later...

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 before. However, I am trusting in myself that I will know how to react to anxiety causing situations.

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 for the health challenges that face me and to still be able to do things that I love. Particularly bowls!

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 through things ourselves. We learned to get through tough patches and challenges from an early age and this will stand us in good stead for Parkinson's challenges.

Some thoughts on the Quantum leap from being a Mum in control of Christmas celebrations and how Christmas has evolved.

A light-hearted poem about how the world might see us at different ages and stages.

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 not the only malady that plagues me!

A phrase I've used many times in my life, so many times we do things 'just in case'

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' to others with the same condition. But, if I see someone in the community would it be a good thing or a bad thing to ask if they have Parkies? Here's some of my thoughts.

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), but what is the number when you are considered elderly?

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't deserve to be given brain space.

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 differences and support each other's needs.