By: Jill Blankley
Hello everyone. Thank you for being part of the outstanding community that Humanizing the Headset is becoming! I have worn the headset for nearly 26 years with the same agency in northeastern Illinois. For the past five years, I have done so while living with Parkinson's disease and am currently at Stage two (there are five total stages). April is Parkinson's Awareness month and in honor of that, I was asked to share my story with you.
Let's begin with a mini crash course in what PD is. It is a neurological, motion disorder disease. Symptoms become noticeable when your brain does not produce enough dopamine, the feel good chemical in you brain that helps to control movement. Common motor (physical) symptoms are tremors, stiffness, and postural instability. Non-motor symptoms include blurry vision, decreased executive thinking (multi-tasking), depression, anxiety, and apathy. Stress and fatigue can be the worst enemy to PD. The average age of diagnosis is 60 years of age.
I was diagnosed right before I turned 42 years old. That is considered Young Onset. Five to ten percent of Parkies are diagnosed YO. I don't know what to say, I guess I'm special. The beginning signs for me were that I had slight tremors in my left hand, my left arm did not swing at all when I walked, my ankles were very stiff causing me to walk slowly, I lost my sense of smell, and my left triceps were very sore all the time.
Most of you who are reading this have an in depth understanding of our daily job tasks. Everything I mentioned in the above paragraph makes my job exponentially more difficult. I'm fortunate that my agency allows us to bid for shifts by seniority. In 2016, I left the day shift and moved to midnights where the pace was slower. There is less typing, less radio traffic and less stress. After six hours into a busy day, it would be difficult for me to talk on the radio. Parkinson’s Disease can affect the voice also. Exhaustion made it hard to say numbers out loud. Imagine having to concentrate to be able to 4 or 5, 6 or 7. Fortunately,we only work 8 hour shifts. Even still, it's difficult to sit and do this for 8 hours a day, 5 days a week. I don't think a 12 hour shift would be good for my health. I often joke in my support group meetings that I am in the wrong profession for this disease.
Midnight shift works better for me because there is less typing,less activity and it’s also a calmer environment. I can feel differently every day as my symptoms fluctuate. I may look fine but really feel shrouded in pain and stiffness. The biggest challenge now is that my fingers do not always want to cooperate and it makes my typing slower and less accurate. I try to remain grateful that I had the choice and seniority to move to a less active shift.
I had always felt well-matched to this profession. I could think quick on my feet, be comfortable with decisions, had excellent judgement, and was very compassionate. After I was diagnosed and learning to cope with all of this, my confidence in my ability to bring my “A” game every shift took a major hit. I wasn't as fast or as accurate as I had been. This was crushing! I’ve always worried that deputies would lose faith in my ability to be a good dispatcher and my ability to keep them safe. Again, that is why I left the day shift. I felt too slow to keep up with dispatching on my previous shift. Shift work is hard, there was too much typing and talking. Parkinson’s disease affects your voice and often by the end of the day, I was so exhausted that it was hard to speak loudly enough and enunciate words over the air.
Right before my diagnosis we switched to a new CAD (Computer Aided Dispatch) system. That was hell! Every time I was taking an in-progress call, not only was I struggling with the new CAD, but my left hand would start to tremor. Those were not happy times. My mood was also affected by this. I was freaked out by my new disease and felt very defeated because I didn't feel like a rock star anymore. Hello to more depression and anxiety.
I was a CTO (Certified Training Officer) for 10 years. My last trainee was in 2015 during that new CAD upgrade. I stepped down from my position because I was struggling so much. I have not had to ask for modifications to my work space, however I know there are special keyboards that I could use to help. Sitting for too long is not good, so I’m glad I work at an ergonomic, stand-up desk. Work did not bring on my Parkinson’s Disease. There is no correlation between Parkinson’s disease and my job. I had a TBI (open skull fracture) when I was five years old that may have been a contributing factor.
How did things improve for me? What did I find that allowed me to thrive? Medication is very important. I take twice as much now than I did five years ago but this allows my hand and fingers to function better, however it's not a cure. I only have a few years left and its effectiveness will no longer work for me.
I work with a great yoga therapist. I met him at a support group 5 years ago and we still meet once a week. Some weeks we target our practice to my aches and pains, other weeks he puts me through the paces. I won’t be on the cover of Yoga Journal anytime soon, but I can do a downward dog with the best of them. NAMASTE!
I handled stress much better before my diagnosis. I’m easily frustrated now. To unwind, I practice yoga, enjoy pottery, ceramics and swimming. I think of yoga and meditation as complementary medicine. I have never researched any other alternative options. My interest in yoga led me to study Buddhism a small bit. I've been to temples and meditation seminars. I was introduced to the principle of basic goodness: there is something good in everything.
In 2015 I went to a yoga retreat in Massachusetts that was designed for Young Onset Parkies. In 2016, I attended the World Parkinson's Congress in Portland, Oregon. Patients, researchers and doctors from 126 countries were in attendance. On my free days, I toured Mt Hood, sat on the sand at Cannon Beach and saw and heard the Pacific Ocean for the first time. I also met a retired NASA astronaut, Rich Clifford who flew a space mission after he was diagnosed with PD.
I would never have had these experiences had I not been Diagnosed with PD. That is my basic goodness.
My symptoms are more pronounced now. I’m starting to notice aches and pains in my right hand and shoulder, as well as stiffness in my back and neck. It’s been a gradual progression and I get a bit stressed wondering when the tremors in my right hand will start. The good thing is I’ve never been treated differently by my co-workers. They’ve always been understanding, even when I get frustrated on a hot 911 call and my left hand starts to shake. I just slow it down and use the best fingers that will work for me or use my right hand to type it out.
I take medicine more often and it has helped my fingers and hands to not feel so stiff. The flip side of this is that while it suppresses one symptom, it exacerbates another. My left hand and arm now writhe and flop around more. This is common with PD patients. It’s why the farther down the road you go with your disease, the more likely you are to take multiple medications. I was asked by the neurologist if I wanted to start taking something for the writhing (dyskinesia). I said no, it was still mild enough for me to cope with.
As far as offering words of encouragement, my twisted, dark sense of humor would say that out of the most common neurological diseases, PD is the best one to get. ALS and Huntington’s disease are both death sentences, PD is not. It’s also known to be a slowly evolving disease. Patients usually do not progress through stages quickly. It can take years to go from one stage to the next.
I do not know how much longer I will continue to work. Right now, the tremors are on the left side of the body. Funky things are popping up on the right side now, but there are no tremors yet. When both my hands shake, I'll have to start reevaluating my life. I'm very fortunate to work where I do. I have never been given anything but support by my co-workers. That being said, take care of each other.
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