My journey with Parkinson's

Retiring early has given me much joy and time to spend on doing the things I love with the people I love. Finding new ways to be social has definitely enriched my life.

In my personal experience, many people are not aware of the fact that Parkinson's is not just about the obvious physical effects, but also a raft of cognitive and mental challenges. Those can be the hardest to relay to people, so they can begin to understand us.

A change in my presentation and my reaction to it. After being stable for so long, needing an increase in medication has made me stop and take stock about how I feell

How did I get from the girl who loved to party, to the woman who likes to sit on the couch and watch telly with her man? Lots of changes in between...

With a compromised brain that doesn't always remember things so well, it is important to have systems in place. Here are a couple of little things that help me.

It can be challenging sometimes when out in society and needing to rest. Often seating is too low to allow ease of use - creating difficulty in getting up - or with arms that make chairs impossible for larger people to use.

Often it is the people who seem the most 'together' all happy and smiling and joking who can be the ones that need our help.

Sometimes it is the hidden symptoms of Parkinson's that can be the most difficult for someone with this condition. If a symptom can't be seen, sometimes it goes unacknowledged and therefore the person with the condition does not get the support they need.

This blog is the place where I send all my thoughts and feelings about a life lived with Parkinson's. How do you deal with yours?

Sometimes when we don't respond immediately, people may think we didn't hear them. But, it may be so much more complicated than that!

We all probably know that exercise is important for those of us with Parkinson's. However, an awareness of the type of exercise that will work for us as individuals is also important.

I don't know if it's my age or my Parkinson's but I do get a bit more emotional about things than I used to.

I look in the mirror and my grey hair is testament to the fact that I am in my twilight years. But, often I don't feel old, despite all the creaky joints and aches and pains that come with the territory. Life can still be a good life, if we can focus on the good within all our lives. I hope you can find some.

Normal. What does it even mean? What is normal for others may not be normal for you and what is normal for you today, may be quite different to yesterday or tomorrow. It is an ever changing state of being and not static. Therefore, it is difficult to define.

How we live as a couple may be different from others. We learned early on in our relationship that we both valued and needed to have our own space and independent activities. It works for us and will help us in the future if not all activities are shared.

In many parts of my life I have been involved in groups and really feel that a peer support group is the best thing you could have available to you when you, or someone you care for is diagnosed.

I've notice my memory getting worse and especially when I feel someone is pressuring me and I become overwhelmed. So, things I should be able to do, even if quite familiar, can be difficult when feeling over stressed.

II recently read an interesting viewpoint from someone in the Facebook page I am a member of, about a different perspective in dealing with their Parkinson's. Rather than looking negatively on what we can no longer do, focussing on the here and now and building on what we can still do and more. Looking at accomplishments and skills we still have and celebrating them.

I am a muller. I like to think things through thoroughly before taking action I also enjoy gifting things to people and sharing in their joy.

I have chosen to give my daughter and my grand-daughters some trinkets from my jewellery box. I wanted to see the delight when they chose something that they liked and anticipated seeing them wear them. Better this way for me rather than them having a jewelry box put in front of them on my passing.

I admit to being a bit of a "muller" if there is such a thing. I tend to ruminate over things and at times I need to check in with myself what I am prepared to share or not. Also, if not willing to share perhaps "Why not?" would also be a good question.

My husband and my daughter have had the misfortune to be a victim of my lack of ability to define what is 'this Saturday' or whether it is 'next Saturday' and it has caused a lot of confusion over the years. Maybe that was a pre-parkies thing? A warning?

Normal is a word that is bandied around a lot. But, what is normal? To me there is really no such thing, because we are each individuals and even our own 'normal' changes over time.

Things I wish someone had told me when I was first diagnosed.

I love sharing recipes with friends and family, knowing they are good because we have tasted them and we want to have that recipe so we can make it and share with others too. So too, with Parkinson's sharing our recipe of how we manage this life with Parkinson's and knowing it works for others gives me the confidence to try to make my life better.