It's Quiet... Too Quiet...
I'm back from my little vacation that was more like a staycation, even though I was in a different city. It was nice to get out of my house for a little while and escape this pit that all of us have probably experienced around the time of diagnosis – the hole you fell into where it was ALL PD, ALL THE TIME. It’s all you think about and worry about and talked about and stress about and it becomes an inescapable thing. Lucky me, I got to climb out of the pit for a little while and breathe some non-PD air. Unfortunately, I left Mo in the pit for a little while. There is definitely some guilt that goes along with the notion that you the care partner can exit the building, while your Parkie is stuck. However, I think we have to let the guilt go if we can, because those moments of ‘freedom’ might be few and far between, and we have to accept the respite from stress when we can get it. And let’s face it, your Parkie may be grateful for the quiet and break from the constant chatter about PD as well. It might be nice not to be reminded about Parkinson’s every minute of the day. Have you taken your pills? How’s your tremor today? Are you having trouble swallowing? Is that dosage of C/L still working? You need to exercise. When’s your next neuro appointment? So, maybe a break for Mo, too.
The title of my post today is about something a little odd that I have noticed the last few weeks, and it has to do with the response, or lack of, from the people on ‘my’ side of the fence. My friends and relatives and people that I am reaching out to are strangely quiet about the whole Parkinson’s drama. I didn’t expect casseroles and a GoFundMe page, lol, but no one that I have given this news to seems to want to, well, TALK about it. Not many questions, not much chatter of any kind. PD seems to be in some weird gray space for people. As someone told, me, well, it is not like Stage 4 cancer. With something like that people seem to have a sense of what a ‘normal’ level of concern is, what sorts of things people are facing (chemo, radiation, etc.), what questions to ask.
With PD, not many people really know what it is. On top of that, it’s progression is so long-term for most that it might be something that most people don’t see as an issue for ‘right now’. Your husband will most likely be able to keep doing what he’s doing for another 10 or 15 years before things might get ‘bad’? Well, doesn’t seem like much to be concerned about, right? It’s not an in-your-face-immediately disease, and it’s hard to make someone understand how this has taken your life and your plans and dreams and turned them upside down. After all, they don’t know what you had planned that might or might not ever happen. They will likely never see the small things you are able to keep hidden like trouble swallowing, or stiffness and trouble getting out of bed and chairs, or brain fog. There is no wheelchair, no falling, no dyskinesia right now. Nothing to see here folks, keep moving…
This silence is making me think that I might need to adjust MY thinking, because maybe all that silence sort of has a point. Have our lives been upended? Yes. Are we struggling to figure out how we will cope? Yes. Is this the way we wanted the later years of our life to look? No way in hell. BUT, there is another way to look at all of this. It IS a long-term progression. It may be years before anything truly disrupts the way we live our daily life. It is not cancer, and there are no life and death decisions to be made in the very short term. We drew a short straw, but it could have been worse. Things will happen slowly, and we can deal with them slowly as they happen. We have a pretty good idea about what the future will hold as this progresses, and we have lots of time to plan for it. And best of all, there is a giant community of people out there we can lean on for support, people that we CAN talk to when we get overwhelmed.
My message to all my friends and loved ones who might be reading this, who have no earthly idea what this Parkinson’s thing is or what it means or how serious it is or what to ask – it’s ok if you don’t know. Part of the point of our blog is to get the information out not only to the Parkies and their care partners, it is to hopefully educate everyone else on PD. There are a lot of resources here on our site, so go poke around a little bit. There are lots of studies happening, and if you are looking for a great cause to donate to, there are lots of ways to donate to PD research. Check out some of the links in our Resources page. And, I am always here if you DO have questions!
Thanks again for reading and responding. I have been out of town and not responding much on the blog, but I am trying to catch up! Thanks to everyone who is reading….