The Parkinson’s Journey – Chapter 3: How I Made My Parkinson’s Treatment Plan

What makes a good treatment plan for Parkinson’s?

That’s a big question. And if you’re like me, it can feel a little overwhelming at first. When I was first diagnosed, I had this fog of uncertainty that hung over everything. It’s not like someone hands you a perfect instruction manual with your diagnosis. There’s no one-size-fits-all approach. Parkinson’s doesn’t play fair, and it certainly doesn’t play the same way for everyone.

But with time, experience, and plenty of trial and error, I found a way to create a treatment plan that works for me—and maybe, just maybe, it can help you think about yours.

This is not medical advice. I’m not a doctor, and I’m not here to pretend I have all the answers. I’m just a person with Parkinson’s, trying to live my life as well as I can. This post is about what’s worked for me, and how I got there. If anything resonates with you, take it and build on it. If something doesn’t, that’s okay too. Your path is your own.

So let’s talk about how I made my Parkinson’s treatment plan—from the ground up.

Before we dive in, I just want to say—if this blog or my journey has helped you in any way, and you'd like to support the work I’m doing here at Life With Parkinson’s, you can do so through my Ko-fi page.

Step 1: Create a Real Goal

I started with a question:

What do I actually want out of this?

That may sound simple, but it’s not. When you're facing something like Parkinson’s, you can easily find yourself stuck in survival mode—just getting through the day. And believe me, I’ve been there. There were days when I couldn’t even imagine setting a goal, let alone achieving one. I know what it's like to not want to engage with life anymore. I know the weight of loss, grief, and chronic illness. I’ve lost my son. I’ve lost parts of myself. I understand how dark it can get.

So when I talk about setting a goal, I’m not talking about something fluffy or motivational-poster material. I mean something that means something to you—something achievable, something that brings purpose back into your life.

For me, that goal became:

To discover as many ways as I can to reverse or reduce my symptoms—and to stay healthy for as long as possible.

That’s it. That’s the whole game plan. Everything else I do flows from that.

But the reason that works is because it’s real. It’s not vague. It’s not impossible. It’s not based on someone else’s expectations or timelines. It’s something I can wake up and work toward each day—even if all I do that day is one small thing.

You need something to aim for. Without it, it’s easy to lose engagement. And in the Parkinson’s community, that disengagement is something I see far too often. People start to check out mentally, emotionally. They go to their appointments, take their meds, and stop believing they can influence anything.

But here’s the truth: we can.

We may not have full control, but we’re not powerless either.

I think part of the problem is that somewhere along the way, we started handing over too much responsibility to the medical system. And listen, I respect doctors. I’m grateful for the care I’ve received. But your neurologist isn’t there to live your life for you. They’re not there to tell you what kind of person you can still be.

You are.

You have to reclaim that part of yourself that used to plan things, fix things, move forward. Parkinson’s doesn’t erase that part of you. It just buries it under a lot of noise. But it’s still there. You can still make a plan. You can still choose to live with intention.

So start with one goal. Something real. Something that matters.And then let everything else build from that.

Step 2: Assemble Your Resources

Once I had a goal in mind, the next question became:

How am I going to get there?

That’s where assembling resources came in.

I started by thinking about how I used to approach projects—back before Parkinson’s. Like painting the house. You’d figure out the square footage, how much paint you’d need, what kind of brushes or rollers, whether you’d need a ladder, and so on. It was all about planning, gathering what you needed, and then doing the work.

Same goes for Parkinson’s.

You’ve got to look around and ask:

• What do I already have?

• Who can help me?

• What tools are available?

• What knowledge do I still need to find?

And I’ll tell you something—you have more than you think.

For me, one of the most helpful things I did early on was to surround myself with a cheer squad. My partner. My close friends. These people helped keep me accountable and encouraged me when I felt like quitting.

Even small tools made a difference. Let me give you one example:

In the early days, I really struggled with turning over in bed. It sounds small, but it became a real problem. That’s where a product called Comfort Linen came in. Their solution was simple—but it worked. It made one of my daily challenges manageable. And over time, I realized that this kind of “small win” was actually a big deal. A product that helped me sleep better was more than a convenience—it became a resource that supported my larger goal.

This isn’t an ad. It’s just an example of how simple, thoughtful solutions can become part of a real, personal treatment plan. When you assemble your resources, don’t overlook these things.

And don’t underestimate your inner resources either.

• Your curiosity

• Your sense of humor

• Your past experiences solving problems

• Your willingness to try again

These things matter just as much as any medication or supplement.

As you gather what you need, remember this:This part of your life isn’t over.

You’re not finished. You’re not written off. You’re not just a patient.You are still a person with ideas, dreams, and potential.

So gather your tools—both the people around you and the strength inside you—and get ready to move.

Step 3: Carry Out the Plan

Now for the most surprising part of this whole journey.

Once you’ve got a clear goal…Once you’ve gathered your resources…Carrying out the plan is often the easiest part.

Seriously.

The hard part is facing yourself. The hard part is finding that glimmer of hope again after it’s been buried under years of discouragement. But once you’ve done that? Once you’ve made the choice to try again?

You’re already moving.

In my own life, I didn’t start with big sweeping changes. I started with tiny, doable things:

• Drinking more water

• Tracking my symptoms in a notebook

• Going for short walks

• Trying new stretches

• Adjusting my diet

• Asking better questions during appointments

Each action might’ve seemed small on its own—but together, they started to move the needle.

Here’s the thing: consistency is everything.Your plan doesn’t have to be perfect. It doesn’t even have to be pretty. But it does have to be consistent.

And you’ll stumble. I did. I still do.

But that doesn’t mean the plan is broken. It just means you’re human.

A Quick Recap

To build your own Parkinson’s treatment plan:

1. Create a goal.

Something real. Something meaningful. Something achievable.

2. Assemble your resources.

Who can help you? What tools do you have? What strengths can you call on?

3. Carry out the plan.

Start small. Stay consistent. Adjust as you go. Keep moving.

Final Thoughts

Parkinson’s changes everything—but it doesn’t take everything.

There’s still room to grow. Still room to plan. Still room to live well.

You don’t have to get it perfect. You just have to care enough to try. And if you don’t feel like you’re there yet, that’s okay too. You can come back to this when you’re ready. This isn’t a race.

Your story isn’t over just because your diagnosis has a name.

The world still needs your voice, your laughter, your ideas, your stubborn determination. And yes—even your messy, imperfect plans.

So start today. Start where you are.Make a plan. Make it yours.And don’t be afraid to live it.

One Tool That Changed My Nights

Comfort Linen

If this blog has resonated with you in any way, I want to take a moment to shine a light on one small but powerful addition to my Parkinson’s journey—Comfort Linen.

In the early stages, even simple things like turning over in bed became real obstacles. It disrupted my sleep and took a toll on my energy and motivation. That’s when I discovered Comfort Linen—and honestly, it changed more than just my nights. With their thoughtfully designed bedding solution, I finally started waking up feeling more rested, more capable, and more in control.

So often, we overlook these kinds of solutions, thinking we need something bigger, more complex. But the truth is, sometimes a single, well-designed tool can give you momentum—a little bit of ease that ripples out into everything else.

If you're putting together your own toolkit, keep an open mind for these game-changers. Comfort Linen is now a permanent part of mine—not just for the product, but for what it gave back: confidence, comfort, and the ability to move forward.

Medical Disclaimer

The content shared in this blog reflects personal experiences and opinions and is intended for informational and support purposes only. It does not constitute medical advice, diagnosis, or treatment. Always consult your healthcare provider before making any changes to your medical care, medications, exercise routine, or diet.

A Note for Caregivers

If you’re reading this as someone who cares for or supports a person with Parkinson’s—thank you. Your role is incredibly important, and often invisible.

One of the best ways you can support your loved one is by helping them reclaim their sense of agency. Encourage them to set their own goals. Help them identify their strengths and tools. Be there when they need support—but don’t take the wheel unless they ask you to.

Your belief in their potential can be one of the most powerful tools they have.

Sources & Further Reading

While this post is based primarily on personal lived experience, here are a few external sources that informed or support the broader ideas of patient-centered care, goal-setting, and self-management in Parkinson’s disease:

• National Institute on Aging – Parkinson’s Disease Caregiving Tips

• Parkinson’s Foundation – Building a Care Team

• Davis Phinney Foundation – Living Well Today with Parkinson’s