Tonight, my husband and I attended the monthly support group that we have at a local bar. We have been going for a while now and it is nice to know that it is a safe group to talk about our diagnosis and other things in our lives. Many of the group are still working, but since the last time we met I have retired.
Talking to a wife – who is retired and who is supporting her husband with Parkinson’s – we talked about what retirement looks like for each of us. Similarly to me, she feels she needs to have people around her and someone to have an intelligent conversation with. I just need to have social interactions with people and to have the satisfaction of giving to my community. My husband is not so reliant on having social interactions as he really is a homebody who enjoys his own company.
Her husband has been diagnosed reasonably recently and I can remember well how that feels. For me there was a sense of unreality. That just because someone decided I have Parkinson’s – even though they are a professional who has studied for many years and built up clinical knowledge – I didn’t feel like they could say that I have this condition. For me, there have been times of denial, perhaps only a brief moment in a day when I am feeling good and I allow myself to dream that this is not my reality.
Even though writing this blog is therapeutic for me, sometimes when things are not going well, some of my posts have been not so positive. We all can have good days and bad days and that is a natural fact. I have always tried to post honestly and try to find the positives in life. I celebrate that I can still do things that are important to me. I celebrate that I have people who love me that I can spend time with. I celebrate the things I can still do and try not to focus on things that challenge me.
The wife and I talked also about how events in our lives lead to this point. I had divulged that my husband is my third husband and we got to talking about previous relationships. As we talked, I told her a bit about my second husband being abusive. That of course is a difficult scenario to find a positive out of. When I was amongst it, there certainly weren’t many positives! However, as we talked, I shared that my thoughts on the negative events in my life – such as an abusive second husband – all shaped the path that I am on today. If I had not had that relationship, I would not have ultimately taken the step to move to Christchurch and without that happening, I would not have met my lovely husband. The negative events in my life have shaped me too in that I know that I was resilient enough to get out of that relationship and if I can get through that I can get through anything. I am also grateful that the man who was to become ‘Grampy’ to our six grandchildren is someone that they love, and trust and I could not think of a better man to share grandparenting with. I shudder to think what sort of grandfather my second one would have been. I am also grateful that he is the person that I know I can rely on to be there for me through the years and support me. The life events that lead me here have certainly given me the best opportunity I could have asked for to have the best life possible with Parkinson’s and the best life partner to share it with.
We none of us have a crystal ball to know how much time we have left on this earth. For me, it is important to do things now such as travelling and spending time with family while I am well enough and able enough to do so. Instead of ticking the days and years off the calendar and looking too much into the future, I try as much as possible to stay in the present. Tempering that with the reality that the time to travel is now when we know my current capabilities. By not waiting to have the experiences that we want to have. To the best of our ability doing all the things we want to do in life and trying not to put things off.
I have come to a point in my life now, that I feel that I have come to – perhaps grudgingly at times – acceptance of my diagnosis. I can’t make it go away, but I can choose to live positively with it as much as possible. I won’t let this diagnosis rob me of the joy of life.
There is still much to be grateful for and still a lot of life left to live.
My journey with Parkinsons 