This morning I was reading some posts on a Facebook page that I followed before we went to Rarotonga. It was a useful forum to find out about restaurants, tours, things to do and places to see. The posts this morning that most caught my eye were from a person who put an anonymous post on the page asking about a particular resort that they had seen some unflattering reviews about. They were thinking of trying to get out of the booking and to move to another resort. All this based on reading some quite negative reviews. So, they were asking for people who had stayed at this resort to advise what they thought of the place. So, I read the posts and although there were many adverse reports, there were also many that were positive.
The question is, who should they believe?
That got me thinking about how we are all individuals, with our own standards, our own needs, our own life experience and our own expectations. This also brought up a memory of a time when I worked as a Social Worker/Admissions Coordinator for an organisation that had three resthome facilities. There was a ‘posh’ one, a middle of the road and a more homely option. Part of my job was showing people around the facilities that were needing resthome or hospital care or purchase of a unit for themselves or a family member. The interesting thing to me, was the huge difference in how each potential resident viewed each of the facilities. For the ‘posh’ one I had people who thought the environment was too formal, too flash, the residents may have been described as ‘uppity’ or some other description meaning they were basically snobs! Those with that opinion obviously were not a fit for that environment. Then there were those who saw the same facility and saw quality furniture, luxurious apartments and excellent meals and staff who also were of a standard they would expect. It was like they were reviewing with relish a five-star hotel that impressed them. The same facility, totally different reactions. The same could be said of the others. Where one person might see one of the facilities and describing it as ‘homely’ and ‘comfortable’ and not see the need for an ensuite, the next person could turn their nose up because of the lack of ensuite and the more down to earth and ‘normal’ atmosphere. Different strokes for different folks!
And so it is for this journey with Parkinson’s that we are all on, whether it is as a person with the condition or those that support them. The way we each ‘Do Parkies’ will perhaps have some similarities, but as individuals the way we experience things and the things that we need will be different. As a child of parents who both had Parkinson’s, I have seen firsthand how my parents experienced Parkinson’s. I can say that each of them experienced it quite differently. Both had symptoms that the other did not and quite markedly so. So, when my Mum told me she had Parkinson’s it was after my Dad had been experiencing the condition for some 15-20 years. I suppose I thought I knew what her journey would be like, just because of how my Father experienced it. I soon learned that that way of thinking was flawed. My Mum needed different support and assistance and I had to put aside anything that I had thought she might experience and go with what she actually was experiencing.
I know it is tempting to look at others with Parkinson’s symptoms that are more advanced than we are currently and think that that is what we will experience. I remember seeing someone with a walker as I drove past one day. My first thought was ‘one day I’ll be like that’ thinking of my future with Parkinson’s. Then, almost as soon as I had that thought I had a second thought, ‘actually most people as they age are likely to need a walker!’ So, attributing the use of a walker to having Parkinson’s didn’t necessarily mean that would happen for me. Thinking of the ‘what if’s’ and that type of thinking is not going to benefit me.
From a personal perspective, I endeavor to experience my Parkinson’s as what is currently happening to me. To monitor any changes and to seek help and support as I need it. I am not going to be crystal ball gazing and thinking that just because my Mum and/or Dad experienced certain things, that it will also be part of my journey. The same thing goes for anyone around me who may have some experience of someone with Parkinson’s. I don’t want to think that they may be looking at me and wondering ‘When is X going to happen?’ because ‘X’ may never happen to me. Just because that was the experience of another person with Parkinson’s doesn’t mean I will travel the exact same path.
So, my message is this:
- Don’t project on to me what someone you know with Parkinson’s experienced. My life is my life and it could be totally different.
- Be there to support me if I need it and let me know that you are there for me.
- Support me to be independent, but encourage me to seek help if you see me struggling.
- Please don’t think too far ahead, I need to live in the now!
- Love me for who I am and have always been. Parkinson’s doesn’t change the essence of who I am.
- Walk beside me on my journey, but don’t try to control my path.
- Help me make some magical memories.
The most important thing of all is to remember that each person with Parkinson’s is an individual with individual wants and needs and individual life experiences. There is no ‘one size fits all’ solution or prescription for how to support a person with Parkinson’s. Don’t make assumptions about what they need but do please ask how you can support them.
Remember, most of all that the person in front of you is an individual and is unique and has unique needs.
My Parkinson’s is my Parkinson’s and unique to me.
As unique as I am.
For, I am one of a kind!
If you would like to listen, I have also done a podcast.
https://open.spotify.com/episode/4VY6XBtC7wtfqwkHEQYstz?si=n8kUkiK8R8aOBrag6jyjsg
My journey with Parkinsons 