What do you want to know when you are diagnosed with a chronic health condition? I met a woman the other day who had recently been diagnosed with Parkinson's. She was given her prescription for Carbidopa/Levadopa and told to come back in six months and let the doctor know how it worked. That was it. No information. Needless to say, this wasn't the ideal way to begin this journey.
When I was diagnosed, I didn't want a lot of information. I wasn't going to dwell on the future and I didn't want to hear what might happen to me. Live for today. It's what we're supposed to do, right? This worked for a little while until I ran into certain challenges which made me think, I sure wish I had known THIS from the beginning. That's when I realized living for today doesn't mean forgetting what happened yesterday or not thinking about tomorrow.
The internet is an interesting place to learn about medical conditions. There's too much information and it can be overwhelming. I did my best. Depending on the site, I found: totally incomprehensible scholarly articles, health advocates telling me my PD was curable and I didn't need to take meds, one page which seemed to focus primarily on constipation problems with PD, an online group where everyone complained, and numerous pages telling the basic stuff about the classic symptoms: tremor, rigidity, bradykinesia (slowness), and postural instability (wonky balance).
Between doctors, therapists, and finding some good websites, I have resources for getting the information I need when I need it. There are a few things I wish I had been told by my doctor, from the beginning, like how Dopamine works and what its effects are on the whole body and brain and mood, not just the classic four listed above.
It also would have been helpful to be reminded that neuromuscular means anything in our system which depends on muscles and/or nerves. And I wish I had known it could take a few years before the right balance of medications would be found for me. I realize the doctors can't predict how long it will take, but I suspect there are few times when they get the meds right the first time.
Regardless, I still feel much the way I did when I was first diagnosed. Everyone in this world has challenges they will face. Mine just has a recognizable name. I don't believe my life is any harder than anyone else's and, really, I have it easier than so many people. My road will be different than it would have been if I hadn't been diagnosed with PD, but that's not bad. There have been new people to meet and new things to experience.
So far, it's been a fascinating journey!