“It takes over every conversation,” “I am not entitled to have my bad days or my issues because you always have this **** PD trump card,” “Everything is PD, PD, PD,” “Just for once I’d like to talk about something else,” “I can’t tell you something important to me because it is so irrelevant compared to your *** PD,” “You are so self-absorbed,” “Your PD has ruined the future I planned for,” “I don’t want to just be looking after you forever,” “It has changed you so much I am not sure who you are,” “Where has the you I loved so much gone,” “I want to talk about the things that are on my mind and that are concerning me.”. These are all example signs of the collateral damage PD can have on relationships.
This is a very hard post for me to write and possibly for people to read, but if you will read on, I do highlight a special power which I see can actually turn PD into a plus in some of these areas.
Where did I get these quotes from? They are not things people have ever said to me…they are things I think people may think based putting myself in their shoes. I see it the more I interact and speak to people with PD.
PD is a is a game changer—you know that every time you tell someone you have PD and see their face. It clearly has a massive impact on all those around us and can often harm or at least significantly change the nature of relationships. It would almost be insane to think it didn’t cause significant change.
It is clearly a life changer for us, but our physical condition, our sometimes tendency to apathy, and our often completely natural self-absorption impacts others. The more PD hits the Young Onset community, the more it will probably cause damage as relationships are less deep, as children are younger, and as people have more ability to make life choices.
How do we address this as people with PD? How do I address it? In fact, how do we potentially counter this?
The Emotional Issue
Because of this massive, lifelong, constantly changing disease and its never-ending degenerative nature, it can drown out all else.
It creates a multifaceted problem, as the quotes above signal. This is, of course, on top of the very real physical, lifestyle, and financial implications that PD causes—from the caring side, the lost ability to do things, and many more issues I won’t focus on here.
I am writing this thankfully from the position in which (I hope I am right in saying this) I have a great relationship with my wife and kids and have trusted and loved family. I want to keep that and continue to improve the relationships I have with people.
We know it is key because support from loved ones, both friends and family, is so important.
As I talk to a number of people who have PD, a pattern does emerge, and it includes some of the following types of challenges:
- People hold back: They often don’t want to raise their life challenges because they feel they are so irrelevant or because they are protecting us from the undue stress which they know triggers the PD even more.
- I can seem or actually am less empathetic: I may have diminished or disrespected other people’s challenges and concerns and issues their due and empathize with them for the same reason.
- It dominates: It just sucks the air out of every other topic and consumes all else.
- The ups and downs: The constant rollercoaster makes people with PD often unpredictable as the dopamine ebbs and flows.
Mutual Effort and Understanding
It’s important to recognize that managing the impact of PD on relationships is a two-way process. It is not solely the responsibility of the person with PD or the other person. Both need to step up and learn to cope. This calls for efforts and self-sacrifice on both sides of the relationship. At the end of the day, this mutual effort is the very essence and nature of strong relationships.
The classic and critically important methods to address – before revealing my insight…
Awareness: Like all things, awareness is key. Studies I have seen indicate in general life nearly 95% of people believe they are self-aware, but only about 10-15% actually are. Of course, I am in the actually aware camp…well, maybe not. Being aware of these things is perhaps the key to addressing them. I need to actively be aware of this and actively acknowledge it is real.
Self-care emotionally and physically: My non-scientific guess is that the worse the condition gets, the more this is an issue, so by keeping ourselves fit and healthy, we by nature make this a lesser challenge.
Keeping Parkinson’s from dominating: As my late neurologist said, the main way to deal with PD is to keep it from being your life and making it part of your life. Some would say I am failing by dint of spending my hobby time writing about it, but that aside, it is my absolute mission to live my life as much as I can and fight the attempt of PD to dominate and close in the walls.
Help and support: Often this is too much to deal with on your own or just with your family. Seeking help (ideally preventatively) can be key—even if that is just a friend or fellow Parkinson’s person.
All the above are no doubt the transitional approaches any book would recommend and are absolutely key. I want to reflect on something else which I have noticed.
Special Power
I have actually noticed that having PD has given me much greater emotional awareness in many aspects (even though I am guilty of much of the above). I have learned a tremendous amount about coping with a very serious ailment, processing, and adapting hugely my lifestyle to reduce stress and promote health. It has given me a much better insight into things I previously had no idea of.
I find it easier to talk to people who have serious issues in life because at some level I empathize and share many of the same feelings.
I think on some level I—and I am sure many others—have matured significantly in their emotional awareness, and this can actually help me in my challenges with the above.
Of course, Parkinson’s is there, and I truly wish I didn’t have it, but I feel I can begin to actually offer more of myself to the challenges and needs of those around me than before, at least in different ways.
My Summary Thoughts
There is no point denying that PD is a life changer and not just for us with it but those around us. It challenges us to be aware of the impact it has on people emotionally and not just in the fact that they hate to see us going through this—it also sucks air out of other things and aspects of relationships. In some ways, PD gives us skills and experiences to actually offer more emotionally to people due.
Some relationships need more intervention and others adapt. However, awareness helps, and in some cases, having PD offers some benefits from the experience alongside the very real negatives.
