Living in the now… and who to tell and when!

Those of us that are affected by Parkinson’s, both the person diagnosed and those who support us, have many challenges to manage in our lives. So too, with those challenges come many choices that need to be made.

One of the choices that we are faced with is what we tell, who we tell and when. I know that’s sort of three choices, but they are all wrapped up together aren’t they? I have always been very open about my diagnosis from day one. That is what worked for me and still does. I am particularly open at work, so hopefully those I work with understand and support me. I have also told all my family, with my children being the first people I told.

I worked with someone who had been diagnosed maybe a bit earlier than me and had still not told her children two years in. We haven’t talked for a while and I wonder if she has told them yet, nearly three years in?

I have someone close to me who has recently had a diagnosis that is life limiting. Myself and my husband are trying to be there for them and for their family members affected by their diagnosis. They have chosen at this stage to limit who they tell. I very much respect their wishes, in wanting to keep this to themselves for now as they are very much a ‘no fuss’ sort of person. I try my best not to fuss, but to be there and spend time with them when I can. As someone who enjoys baking I like to bake nice things for them and visit reasonably regularly. Now is certainly the time to eat cake and enjoy every day.

We talked about how they are managing and they have a similar attitude to me with my Parkinson’s. They are focussed on enjoying what life has to offer now, enjoying going out on drives with their partner, visiting friends and family and having coffees and lunches and just enjoying each others’ company. We talked about ‘living in the now’ and I acknowledged that is a strategy I try to employ myself. Sometimes, though the thoughts of what the future may hold intrudes into my thinking and I do my best to shake it off and focus on the now. For them, I’m sure they have similar thoughts from time to time. Not always easy.

All I can do is respect their wishes and give them my love and support as they do for me. I am glad we have a relationship where we seem to be able to talk about how we feel and that we are safe to say what we need and what we don’t. What they don’t need they tell me is fuss! As is typical with them, their main concern is their partner and how they will manage. Like my husband, they do not cook and has been well looked after for many years. However, should it be needed I know there will be plenty of people to rally round and support them both any time it is needed.

The best thing anyone can do for any of us – whatever the life-changing diagnosis – is to ask us what we need in the way of support and really listen to what we say. Sympathy is all very well and well-meant, but too much ‘poor you’ can be an unwelcome sentiment when others start to treat us differently. For me – and for them – we just want to spend time with those we love and to get on with enjoying whatever time we have available to us. It’s perfectly fine to sympathise in the beginning, but many of us just want to be related to as the person we have always been and not defined by our ‘condition’. It cannot become the entire focus of our being and allow us be able to manage our lives with some quality of life.

Yes, I am a person with Parkinson’s and in many ways that sucks! But I still look for the joys in life every day and celebrate them.

If we allow our significant diagnoses to become everything we are about, we will lose ourselves as a person and life will be lacking.

Regardless of our diagnosis, whether Parkies or something else, we cannot allow it to be all that we are and I for one refuse to.

I am a person first and foremost, with value and the ability to contribute in life in many areas. I am not giving in and letting this condition swallow me whole. It can have a small part of me, but the best of me is the rest of me and I will continue to nurture it.