Thanks Grandpa.

A chronic diagnosis can be life changing, but it doesn’t need to be defining. The outcome is not set in stone and the early we can intervene and the more motivated a person is to continue living, the better outcomes we can have. Take back control.

Sometimes you devote all this time and energy into carving out your path and thinking you know exactly what you want to specialize in and who your ideal client is, but other times you simply just can’t say no. 

As a recovering people pleaser, I have found myself down a variety of paths that simply arose from my agreeability. My experience with getting into Parkinson’s Disease (PD) treatment was no different. 

First of all, I lived above my grandfather during PT school and he was diagnosed with PD. He and I had a strained relationship that can be summed up by him calling me the wrong name even though I lived in his house, managed his care and, not to mention, was his ONLY grandchild. 

My mom was his medical power of attorney and had literally bent over backwards to keep my grandpa in his own home. This involved daily caretakers, coordination of appointments, and managing not only his health but also his home. 

When my mom moved to Florida shortly after I graduated from undergrad, I was already moved in above my grandpa’s house in a second story apartment where I could easily take on the roles that she had been handling for years. The rent was cheap and it was the least I could do. 

His PD symptoms were atypical and they were likely exacerbated by the amount of alcohol he had consumed in his lifetime. He had some of the cardinal symptoms of PD including freezing during walking, shuffling his feet and rigid muscles, but he fluctuated for nearly 15 years without the substantial, linear decline in status that you would expect.

My grandfather was a royal pain in the ass if I’m being honest. I loved him because he was my grandfather and I had compassion for him because I was his caretaker…But on several occasions he just blew me away with how mischievous he was. 

We had cameras set up in the house so my mom could keep an eye on things while she was away. Did I mention I was also trying to get a doctorate at this time and keep another part time job? Minor details. I could access the cameras on my phone too, so when I thought I heard something, I typically would check before making the trek downstairs at 10 PM. 

He somehow realized that the best option for getting me to come downstairs was him taking his cane and banging it on the wall. This involved him getting up from his bed, walking over to the wall (which I’ve witnessed clear as day on the camera), banging his cane repeatedly and then magically returning to bed where he “could not move” once I’d make my way down the stairs 5 minutes later. 

If this happened once, it happened every anatomy exam I ever had. 

Alright, that lays a comic foundation for my introduction to PD and honestly wasn’t a huge draw to me feeling like I had found my “niche”. The universe has a crude sense of humor, though, and next thing I know, I’m saying that I’ll volunteer to go through a training to become LSVT BIG certified for treatment of PD in my first job. 

I think when it comes down to it, I was inspired by people with PD that would be willing to commit to a program like LSVT BIG. It was 4x/week for 4 weeks of working on increasing amplitude with movements, improving function and decreasing the progression of the disease. Exercise has always been proven to slow PD progression, but my grandfather’s only exercise was that little cane event described above. I wanted to be able to help people devoted to intervening when given a diagnosis like PD instead of sitting back and waiting for the inevitable progression.

So fast forward and I have this certification and now I’m starting to feel the pressure of promoting it to get patients. Here’s where the inability to say no comes in again… 

I headed to the local senior center because I heard they had a PD support group. It turns out that the support group had ended about two years ago despite a large following because there was no one to lead it. I bet you can guess what happens next… 

Through running this support group, I was able to bring in researchers, pharmaceutical representatives, PD specific exercise groups and lead conversations regarding the frustrations that individuals felt with this condition. I’ve also had the pleasure of leading a handful of people through LSVT BIG and setting them up with exercise programs that will allow them to function at levels that I didn’t even know were possible given my experience with my grandfather. 

The biggest thing I’ve learned about working with chronic conditions like Parkinson’s Disease is that early intervention and patient dedication are the two biggest factors to managing the progression of symptoms. Chronic conditions and chronic pain plague our society and, in my opinion, we simply are not doing enough to intervene in the early stages. 

My experience with watching my grandfather live a life that truly lacked quality motivated me to help others avoid that outcome. Early intervention with any chronic condition can allow people to move better for longer, avoid functional declines and vastly increase the number of happy and healthy years in their own home. If you know someone that has been diagnosed with a chronic condition and is struggling with navigating it or wants to intervene in any way they can, I would love to help support them. Even though a diagnosis can be life changing, it doesn’t have to be defining. Let’s take back control…the earlier, the better.