Parkinson's and Blogging: Then and Now
Welcome to April. Spring. Baseball. Easter. Final Four. April Fool's Day....and the start of Parkinson's Awareness Month. My opportunity to help bring a little awareness to the disease that's affecting the lives of millions.
This blog started five years ago as a way to talk about my adventures, thrills and spills with Parkinson's Disease. Five years later a lot of things have changed. It's a good period of time to look at my life with PD back then and what it's like now. Same thing with this blog.
I started the Hippy Shakes in May of 2013. As I mentioned, I wanted a space to talk about my life dealing with Parkinson's. I was a newbie in the Parkinson's world. The diagnosis was less than a year old and I was still trying to figure out how to deal with the changes in my mind and body...and my life. The disease was new and so was the blog. I thought they'd grow up together.
The early days of Parkinson's seemed like it was always taking one step forward followed by two steps back. My early symptoms were mostly balance issues with some light tremors. There was walking into walls, having some problems with stairs, a few falls and spilling....lots and lots of spilling. There were times when I'd go three or four days...maybe a week without anything happening. I'd think this Parkinson's thing is a breeze....and that's the way it tends to be in the early days. Then I'd trip while walking off a curb or spill a drink on myself and it would send me into a depression. All the good days would be ruined by one episode.
A few things made me sane...well saner. Knowledge, therapy and time.
I did a lot of reading about the disease. There are plenty of places to find out about Parkinson's and while I'm far from an expert, I learned a lot about PD and what I could expect. That made it easier...sorta. Therapy helped...A LOT!! It gave me an opportunity to talk to someone about what was happening to me and to talk about my fears. It took three years but I'm okay...well at least about this. Some of my other issues...well, that's for another day on another blog. The passage of time might help the most. You have to be patient. It's not easy to do but you do learn how to deal with all the changes...if you just give it a chance.
The beginning of the blog had some of the same issues. To be honest with you all, I started it because I thought there might be a book in all these Parkinson's stories. That's what I get for thinking. I look back on the early days and while there were a few good pieces, most were pretty crappy. I can't believe people read them and then came back to read more. But yanno, the two things have a couple of things in common. Knowledge and patience. If you can stay patient and keep plugging away, you'll gain the knowledge needed to do it better. I think that happened here. Actually, I know it happened here. Either that or if you throw enough shit against the wall, some of them will stick. Whatever!
So five years into the Parkinson's world (really seven or eight when you consider undiagnosed symptoms), how am I feeling? What's different than five years ago?
The balance issues are better. I haven't had a fall in three years. When I walk, I don't lilt to the left as much as I did back then. I don't know why. Maybe it's because I'm more careful and walk a little slower than I did....or maybe I'm just lucky. Either way, I'm happy with this.
I still spill things. Last night at a Passover Seder, I spilled a glass of wine three times. THREE! I also dumped some food on my shirt. It happened then and it still happens now. The difference is I don't get upset over this anymore. I just clean it up and move on. No crying over spilled milk...or wine...and trust me when I say in the early days there were real tears.
Now it's not all good. In the last five years I've had Melanoma, Urinary Tract Infections, Kidney Stones, writing issues, stomach issues and just plain old tiredness. But all in all, life with Parkinson's hasn't been horrible...yet. I'm sure it will get that way because it's a degenerative disease with no cure yet, but so far it's mostly fine. As the saying goes, better living through chemistry. Oh yeah, I'm taking PD drugs now. Sigh.
So after five years of blogging, how am I feeling? Better about some things, not so much about others?
After year one, I remember reading a list of the best Parkinson's Blogs and this one was nowhere to be found. I was more than a little pissed because I knew it was better than a lot of those mentioned. After year two, I still wasn't on the list but I was okay with that because this became a lot more than just a Parkinson's blog. Over the years, I've talked about so many different topics that I can't keep track of all of them. When people ask why I don't write about PD that much anymore, I tell them that people with the disease aren't all about Parkinson's. We have different interests and live lives that reflect that. I hope my blog reflects that, too. I'm pretty sure it does.
What's next?
I don't know for either.
As for Parkinson's, I would be happy if everything stays the same. It's not likely because of that degenerative thing but we'll see what happens and take it one day at a time.
As for the blog, I wanted to end it after year four. I thought of it like college. Four and out. But I did a year of graduate work and maybe it's time to call it day. Maybe it's time to move forward on other projects? I go back and forth on this for a variety of reasons but like Parkinson's, it's also one day at a time.
I do know that there will always be a connection between the two. Maybe we can look revisit this in April 2023. Ten years into both. Still living with Parkinson's. Still blogging. Still raising awareness in April. Things could be a lot worse.
Related Post: Let me introduce you to (the first piece from five years ago)
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