This summer has been a wild ride for me, but not in a good way. This has been a summer of the best neurologist I ever had with her astute observations of *everything* about me and my medical history, picking up on Parkinsonisms that others ignored.

She sent me for a specialized scan (that the hospital immediately charged me $4k for, despite being a preferred provider and supposedly “covered” by our insurance), and put me on a medication to treat Parkinson’s, to see how I reacted.

The scan and the medication both were “positive”, and I was scheduled to see a PD specialist within a couple weeks. That appt happened and, after giving a brief history of why I was there, she told me that my Parkinson’s diagnosis was confirmed by the positive scan and response to medication – it calms my symptoms down, but does not eliminate them. I still have bad days, but some things are under better control now. She added another medication to supplement the main dopamine supplement, to enhance absorption of the dopamine, and to stave off the eventual decline of dopamine supplemental efficacy that usually happens around 5-7 years of treatment. Those two medications together rather knock me out (my fatigue worsened, which I didn’t think was possible!), but the “down time” is not as bad as it was.

And, I’ve been referred to physical and speech therapy (LSVT) that is specific for Parkinson’s. I’m working on that one – I have a difficult time going to appts that are weekly and involve me traveling. The risk of fatigue taking over while I drive is quite real, so I have to plan these trips carefully. I’ve cut back on even my limited work schedule, and any additional extraneous tasks or participation that requires too much energy from me.

Since my speaking is affected, memory, and also swallowing (particularly scary!), I’m focused on the SLP first. My PD specialist also told me to pick an exercise that I can do for up to 30 minutes a few times per week. I asked if it had to be sustained cardio, and she said no – any exercise will do, but make it something you enjoy doing. For me that is tai chi and yoga, so that is what I’m doing. I really enjoy both, but I do modified versions, and yoga and tai chi are easy to modify.

So, this latest development may have put my disability case in odd circumstances since, as far as I’m concerned, PD is a very different animal than the other chronic illnesses I live with. For one thing, there is no preventing the neurological degeneration I’m facing – at least not at this time. Also, the people who tell me “oh, my friend is 75 and has lived with PD for 20 years, you’ll be fine” and “I’m 70 and I’ve lived with PD for15 years, you’ll be fine.”. First off, I’m in my early 50s, and the specialists have told me that my onset was actually a few years ago, at least – making my diagnosis “early onset PD” – *and I have at least two other chronic illnesses complicating my life, including at least one autoimmune illness.

For all those who have told me that “You’ll be fine, because I….”, I know just as many – if not more – people with PD or their relatives, who describe what their lives are like living with it, and it’s not a “you’ll be fine” situation. It’s a “how do we keep this disease from destroying our loved ones” situation.

For once, I actually trust my PD specialist – she was direct, to the point, and explained to me about the mechanisms of dopamine and PD. She didn’t waste my time with misguided lecturing about my diet or weight like every other specialist has done to me. She focused on my particular biochemistry and next steps, which I very much appreciated. Living with it is another matter, but I feel that I am good hands – rare for me.

Parkinson’s is still a different animal – and a scary one – for me. But for now, I feel like I have a fighting chance of managing it for a while. If anyone reading this has PD, or knows someone with PD, I’d appreciate your comments or thoughts on this topic below. Thank you for reading!