Battling the PD Monster

Battling the PD Monster

Sherri Journeying Through

One day, I wrote about grief. It was a good day, and so it was easy to talk about. You can do things like that on good days. You can leave the grief behind and take the joy instead. However, on bad days, as I said in my writing on grief, it’s not so easy.

A few days later, it was a tough day. I was waiting to hear the final plans for having deep brain stimulation (DBS) surgery in January and not getting any answers. I found the right phone number later in the day, but the offices had closed by the time of my discovery.

Preparing for DBS means it was constantly on my mind. It meant that others’ comments about its effectiveness, or the lack thereof, were constantly spinning in what brain matter I had left. So, I was anxious, on the verge of nervous.

Then there was the factor of the surgery itself. What if they were to sneeze in the middle of drilling and the drill bit slipped? I’ve watched TV doctor shows. I know what can happen. My worst fear was they would find something alien and pull out a 26-foot worm of some sort that would choke those operating on me before they could finish, and I would have to get off the table and figure out how to save the world superhero-style. These things happen.

Getting older scares the pa-jeepers out of me now. Dying itself doesn’t scare me, as I know where I’m headed and frankly look forward to it. It’s the “act” of death. I don’t want to be a burden. I fear to be a burden. I fear to be the one for which another will have to care for, and I may never be able to say thank you (or sorry for not-so-pleasant things I may do).

Yet, more than anything, I fear the inability to enjoy my future grandkids the way I enjoy my grandkids of today. I’m afraid I won’t be able to hold them. Push them in a swing. Walk with them and stop to find ladybugs or worms. Sing them songs and rock them as they fall asleep. I fear not being able to do things with my husband. I fear a lot of things. And I grieve over them, and sometimes it’s a very dark place, and it overwhelms me.

Like today.

I could’ve gotten lost in that dark abyss. It’s rather easy to do. But I had to buck up. I had just written a post about bucking up and allowing your grief to turn into joy. I must practice what I preach.

Ha.

It was dark where I was sitting. Bucking up was not going to come easy. Then my husband came out to the room I was sitting in, and I started to cry, and I told him I was scared. Scared of all the stuff I just mentioned and more. Scared I am going to be useless, as even now I feel unuseful. He gave me a pep talk about how I’m not useless, as even today, I put a smile on Little Monkey’s face when I showed him the Transformer toy we thought was lost. He got the biggest smile on his face. My husband was right. I was useful. At least at finding lost Transformers.

The point is: Yes, our grief can turn to joy if we have the right perspective and focus, but even then, it’s OK to cry. And even though nothing will probably have changed when you’re done shedding tears, you’ll probably feel better. So, go ahead and cry and I’ll cry with you, and when it’s over, we’ll smile and keep walking forward. Or shuffling. Whichever comes easier.

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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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Sherri was diagnosed with Young Onset Parkinson's disease over fifteen years ago. She can be found working in her garden, going for walks, taking pictures, or reading books to her three favorite grandkids.

6 comments

  1. Sarah Chadam says:

    Dear Sherri : Thanks. Your notes help me. Especially the one you wrote where you said someone or something came and stole who you were. I told that one to my family yesterday. My husband wants me to make decisions but I tell him I can’t when I know I am depressed and don’t want to make the wrong decision (financial, moving location of home , going on a trip to europe etc. ).
    I am grateful for the moments when I have some relief.
    So thanks for your blog.
    Sarah

  2. Shirley says:

    Let me add my thanks for your insights and bravery in stating them. I was fortunate that PD didn’t come calling until I was 70 or so. In fact, I didn’t notice the first symptoms until after my husband’s death. Think I may have been too busy and concentrated on him to notice that I was shaking! I have also been fortunate to meet a whole new, wonderful community in my small city–people who happen to have PD! Last December I had DBS surgery and what a relief it is to have respite from the 24/7 shaking. I hadn’t realized how much energy it took! I’ve been blessed that my only major symptom had been the tremor. Sinemet didn’t make any noticeable difference—and now I’m taking no medication. I’ve been very open about my challenges and people (and family) have been wonderfully supportive. I’ve discovered that when we share our vulnerabilities we open the door to others who may have invisible challenges. As an actor, I’ve been gifted with the offer of roles of characters who conceivably have PD, and my boldness on the stage has encouraged others. Other than the planning for aging we all need to do, I try to enjoy and stay focused in the present. Reading of the important role of caregivers in the journey with PD, the uncertainties for those of us who have none perhaps is the most frightening thing we confront. But as you articulated, Sherri, we could give ourselves any number of “frights” if we let ourselves. Thanks so much for taking the time to write and my best wishes for your journey!

  3. S. Hahn says:

    Dear Sherri,
    thanks so much for your blog – it is a heaven sent gift for fellow PD sufferers like myself – you eloquently put into words
    those issues we daily struggle with – our innermost fears, doubts, irrational anxieties or simple physical pain – allowing us to share these with our spouses, family, friends and caretakers.
    I wish you well during this time of preparation and trust that all with work out well for you with your future treatment.
    SH

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