With Parkinson’s, Slow Is the New Fast

With Parkinson’s, Slow Is the New Fast

There is no way I have Parkinson’s Disease (PD).

That river in Egypt (‘Da Nile’)

I will never forget the day I heard the words no one ever wants to hear: “You have an incurable, progressive disease.” Although I had two good friends with PD, I never thought we would have something like this in common.

In 2015, at my annual check-up, my primary care physician suggested I see a neurologist after I told her my handwriting was becoming illegible. Little did I know, this would mark the beginning of my PD journey. The first neurologist I saw told me I had PD but suggested I see a movement disorder specialist to confirm the diagnosis. Determined to prove him wrong, I made the appointment. After conducting the standard tests (which I felt were too subjective), she agreed with the first doctor’s diagnosis.

Still convinced that I did not have this disease, I sought out other medical opinions. After all, I ate well, exercised, and always got plenty of sleep — I did all the “right” things. How could I possibly be sick? Still in denial, I saw three other neurologists — all confirmed the PD diagnosis. One doctor prescribed a PET/CT scan of the brain, which offered further clinical proof of PD.

Medications … NOT!

Of course, the consensus of all the neurologists was that I should start taking prescription medication. Initially, I refused to follow their advice. I believed I could ease my symptoms through holistic measures, diet, physical and occupational therapy, and exercise.

I clearly remember what my life partner, Steve (lost to suicide), had dealt with while trying to find the right medications for his depression. There were numerous side effects and the multiple concurrent, prescribed treatments: “This drug doesn’t work, so add this drug to enhance the functioning of the first medication.” If there was still no improvement in symptoms, medication dosage would increase. Then there was the medication’s loss of efficacy over time. It could also take weeks or months to know if the drug was going to help. Even further alarming was that some of the side effects (suicide in the case of some antidepressants) were what the medication was trying to alleviate.

From what I read about PD medications, it seemed like I would experience a very similar situation to what Steve went through.

Am I depressed, or do I have PD?

Although I refused to take medications to alleviate my symptoms, I still continued my exercise routine (walking, yoga, weights, cycling). However, I was on high alert for changes in my body.

Other strange things were happening to me that I could not explain. While volunteering at a race, I was rolling posters for athlete giveaways. I could not understand why the other staff could roll five posters to my one. Why was I so slow at performing such a simple task? Rolling around in bed at night became a chore, and I felt I needed a forklift to change positions! My left foot kept falling out of my slip-on shoes. I had trouble keeping the shoe on, especially when going upstairs. Fatigue and lack of motivation plagued me.

Could these symptoms be attributed to situational depression that resulted from Steve’s suicide, or was it PD? Should I consider medications for depression or PD?

A blessing and a curse

Having been an athlete most of my life — tennis player, weight trainer, roller-skater, race walker, dancer, and cyclist — I was very much in tune with my body and in touch with its capabilities. This has been both a blessing and a curse. The discipline to work out, along with the muscle memory I have built over the years, is serving me well in fighting PD. However, I am also very aware of how much ability I have lost. Before PD, my balance was excellent. Now it is probably closer to what someone my age has now. However, my frustration level is so high since I still expect to be able to accomplish what once came so naturally to me.

Where I was once strong, fluid, and graceful, I now feel weak, inflexible, rigid, and non-rhythmic. Most people who look at me see no signs of PD. However, I know what I have lost, and for me, that loss is huge.

Although I sometimes wish I had never been an athlete (you don’t know what you’ve got until its gone), I do accept that my years of training and athletics will be my saving grace in fighting this disease.

(Photos courtesy of Jean Mellano)

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Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Parkinson’s disease.

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At the age of 62, I started writing to inspire conversation about mental illness and suicide after my life partner, Steve Tarpinian, took his own life in 2015. Seven months after Steve passed, I was diagnosed with Parkinson's Disease. Now, in addition to Steve's story, I am telling my own.

8 comments

  1. Anne McIsaac says:

    You put the exact words to how I feel! Being extra fit before the diagnosis doesn’t make the loss easier to swallow. We still look fitter than average people our age which makes communications with health practitioners awkward.

  2. Karen Bate says:

    Jean, I didn’t take any meds for 3 yrs. and used exercise for m After my left foot started to drag I thought it was time to start meds. Started with Mirapex – no improvement. Then took 2 carbidopa levodopa 25/100 pills once a day which did stop the drag. I would delay carbidopa/levodopa as long as possible. It works for 3-5 yrs.. Three years later when I started to take it 3X per day I started to get dyskinesia – involuntary movements in my neck and head. Count yourself lucky if you have the type of PD that does not have tremors.

    • Jean Mellano says:

      Hi Karen,thank you for sharing your history… I too have avoided Sinement for as long as I thought I could. Over the next few months, my column will focus on the experiences of my PD journey, culminating in what I think has helped me the most. yes, I am very thankful I do not have tremors, most of my symptoms are the non motor issues..

  3. Ken MacKenzie says:

    Hey Jean, thanks for putting into words what has been going through my mind lately. As a recently “retired” Elementary PE teacher i have a very high expectation of what my body can or could do. Loosing these abilities little by little feels like parts of me are going away. I am on a large amount of drugs but as my kids say it is my Jam and allows me to function quite well. I have recently started to work out at the gym with my daughter and i am amazed at how much this simple act of fighting back and getting stronger has bouyed my life. I have many extreme hobbies that allow me to feel alive, such as white water kayaking, mountain biking, hiking, fly fishing etc. I believe that when we stop fighting the PD monster grows and can overwhelm you. Keep Fighting. Ken

  4. Will says:

    Thanks for a very interesting article, Jean. I particularly liked the “fork lift needed to turn over in bed” :
    Cheers, Bill.

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