Making the most of life and not putting things off

Today has been an amazing day. The sun was shining, I was feeling good and I spent it with my favourite person, my husband. We have been exploring what will be our new neighbourhood and this included a lovely riverside walk. Birds were singing and the scenery was gorgeous and we both enjoyed the opportunity to get out in nature.

Talk turned to how important it is for us as a couple and for me as someone with Parkinson’s to enjoy being active together while we both can. Thinking also about other things we might want to do together and making a pact to make the most of this period when we are able to enjoy days of walking like today.

I work with people who are rehabilitating from a significant and sudden health event like a stroke. The somewhat unusual factor with my patients is that they are all under 65 years. For many of them, their future plans and dreams may not now be possible or at best for some significantly modified to be able to achieve them. This has taught me that thinking that you can do things when you retire and putting them off for the future can be something that you might live to regret, if life throws you a curve ball. Our ‘curve ball’ just happens to be Parkies!

We have learned that we need to do things in the here and now rather than putting them off if possible. Also, because we are moving to a new area we have been talking about how we might integrate into the community, so that we both have a network of friends to support us. We have always been quite insular – apart from spending time with family – but know that when we move and as things progress we will need support. Getting to know our new neighbours and joining the local club – and maybe for me the bowling club – will hopefully give us a community support system. This, I feel, will be important for my husband if I should get to a point when I can’t go out or are not able to live together. I want him to be supported. To be able to go somewhere and maybe play darts or pool or just have a drink and a chat. I don’t want him to be isolated and alone in our new home. I have always recognised that this thing I call ‘Parkies’ does not just affect me. I am realistic that there will be changes to my abilities over time and this will impact on my husband. In the future, I may have less awareness of the needs of my husband and others who care for me. So, it is important that we plan for his future supports as well as my own.

My husband and I are a team. A strong team. A two person unit. But we must learn to let others in more, so if/when that team has to adjust to being more separate individuals, that we have new teams waiting in the wings to support us.

Published by kiwipommysue

I work in health and have been with the same supportive team for over 7 years. They are all aware of my diagnosis and this helps tremendously especially while I get used to the idea of my diagnosis. My parents both had Parkinsons, so I guess my odds were higher than most.

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