The Ribbon of Road Ahead

One Woman's Remarkable Journey with Parkinson's Disease by CAROL CLUPNY

I turned off my DBS today

Why did I do that?

Feeling crummy today. My ankles and feet are so swollen I cannot get my shoes on. I fell hard yesterday, on my back. I don’t usually fall on  my back. My trekking pole was not tightened and when I put it down and put my weight on it it slid out from under me. I was sore, but not hurt.

I gained some introspection. I have been with this disease, diagnosed that is, 13 years. I wonder if I am starting to go downhill. I know I am not getting enough exercise. How does one get enough exercise when they can hardly move!

So why did I turn off the DBS. I was doubting myself. I doubted if the DBS really gave me that much benefit. I am still taking lots of PD meds and it makes me wonder when the bad side affects will start kicking in.

What happened when I turned it off? Immediately after I turned it off my right hand tremored really hard. The left joined in. But then they both stopped tremoring and I was having some trouble swallowing my saliva. That was strange. And my body was very stiff. I had a really hard time getting off my bed and walking into the kitchen was like walking in knee deep cement. I stayed with these feelings for 15 minutes. Then I turned it back on.

I want to cry. But that would show I am weak. Or would it? Maybe my courage would actually shine through.

I must believe. I must believe in myself, in what I know will help me.

Today, it just wasn’t in me…the belief that is.

Tomorrow is another day.

Thank God.

Carol Clupny, author The Ribbon of Road Ahead: One Woman’s Remarkable Journey with Parkinson’s Disease

12 responses to “I turned off my DBS today”

  1. Monique Avatar
    Monique

    I had a somewhat similar day. My brain is getting worse. I need surgery ndxt week. I don’t know how much longer I can work, and we’re not ready for that kind of loss.

    You inspire me. We just have to keep on and believe in ourselves.

    Reply
    1. Carol Clupny, author Ultreia Books Avatar
      Carol Clupny, author Ultreia Books

      Monique, I totally believe in you. You write brilliantly. I hope to see your Writing appear on a parkinson site soon. Hmm,I think I have an idea for you!

      Reply
  2. Judy A. Johnson Avatar
    Judy A. Johnson

    Dear Cousin. You can do it.

    Reply
  3. sharonmaness Avatar
    sharonmaness

    So sorry to hear of your problems, hope you feel better soon. you have always been an inspiration for me.

    Reply
  4. Pat Arndt Avatar
    Pat Arndt

    Sending you a big hug, Carol…
    Love, Pat

    Reply
  5. Janet Eberhardt Avatar
    Janet Eberhardt

    Hi Carol, I am sorry to hear of your struggles and pain, I hope you didn’t injure or break any thing. You are not alone . You are such an inspiration to me and I am sure to every one who knows you. Just an idea , think of one thing that I makes your heart glad
    and I’m sure you do . Sending you prayers, love and hugs ! Janet

    Reply
  6. Nancy Avatar
    Nancy

    I have bad days, too. I get through them by remembering that there aren’t just bad days. There are good days, too. I also look for beauty, especially in nature. Right now I am looking through my window at a beautiful ponderosa pine. The long pine needles are so gracefll! I lean toward the tree and now I see that there are 7 more pines behind this closest one! Did they pull up their roots and walk toward me to comfort me by sharing their beauty? Are they a support group for the one that has taken on the task of absorbing my suffering? Parkinson’s may be making me feel horrible, but I can still enjoy beauty. What a privilege and how wonderful it is to be shown this beautiful world! Every moment is precious. Perhaps I am God’s eyes and ears on this planet. It is enough for me to be a witness to beauty. I don’t think everyone appreciates that ponderosa pine as much as I do. I don’t need to save the world. I don’t need to discover a cure for Parkinson’s. I just need to observe the beauty that is in this world. That is enough.

    Reply
  7. beckettrose Avatar
    beckettrose

    Ufta- Sometimes we have those moments where we need to challenge ourselves and find our new boundaries. What courage it took for you to turn of your DBS and sit with the totality of Parkinson’s for 15 MINUTES!!!! You are not alone. Each of us have miserable days regardless of our relationship with Parkinson’s. I’m grateful for your courage to share what it feels like to fully embody the highs and lows this movement disease. It must of been kind of scary to feel your secretions pooling!! I’m grateful for your DBS that so dramatically improves your function and maintains your high quality of life. Thinking of you!

    Reply
    1. Carol Clupny, author Ultreia Books Avatar
      Carol Clupny, author Ultreia Books

      Oh Beckett, it is so good to hear from you. We need to get together soon!

      Reply
  8. uptothere Avatar
    uptothere

    Weak? I think not. You are one of the strongest people I know.

    Reply
  9. amybuilds Avatar
    amybuilds

    I love this post. Honesty. There is no better way to face PD. Be brave. Feel the pain but don’t drink the poison. Love you. A

    Reply
    1. Carol Clupny, author Ultreia Books Avatar
      Carol Clupny, author Ultreia Books

      drinking poison would require kool aid. Kool aid has sugar and all sorts of chemical dyes. Why do they ruin all the good stuf?.

      Reply

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