20 Responses

  1. Coral
    Coral at |

    Thank you for coming forward and sharing your experiences with Parkinsons. My husband also has it, and as he says, “I have good days and bad days”. Michael J. Fox received the Presidential Medal of Honor just the other day. So you hopefully more research can continue and more solutions discovered. Gentle hugs.

    Reply
    1. Colleen Friesen
      Colleen Friesen at |

      Thanks for the hugs Coral. I agree, hopefully new research can find some clues to deal with this horrible disease. It can be difficult to stay positive when dealing with the randomness of the always-changing symptoms. The trick, for me, is to not think very far in the future. I don’t always pull it off.

      Reply
  2. Michele Peterson
    Michele Peterson at |

    Beautifully written and so good to hear from you. I’m very grateful for the link of what to say or not say as I often find myself trying to be “helpful” when I’m probably several steps behind the research the person has already done. I suspect its the oldest child in me so need to rein that in. I hear you on the support group experience. For me I alternate between appreciating the opportunity to deep dive into discussions about meds, treatments etc with the scariness of hearing others’ experiences. The first generally outweighs the second but it doesn’t lessen the impact of the second. Sending big hugs and love to you.

    Reply
    1. Colleen Friesen
      Colleen Friesen at |

      Big hugs and love back to you too Michele.
      I know people truly are just wanting to help but you’re right, it’s better to just listen. The “best advice’” I’ve had about my snapping tight muscles is, “Have I tried stretching more?” It is that those moments, I would like to magically switch bodies and let them go for it. And please, do let me know how it goes 🙂
      As for the support group..I only went once, right after I was diagnosed in June. They all seemed lovely but they were all much further along in their disease and I just couldn’t face going back again. Each and every person living with Parkinson’s has their own unique constellation of symptoms but it felt like I was looking at my potential future and I didn’t want to go there.
      Is that just denial? Not sure but not ready to find out either.
      I hope you’re getting some answers and help too.
      Turns out all those cliches and sayings about the importance of health are so true.

      Reply
    2. Karen Harmon
      Karen Harmon at |

      I love the frankness and honesty of your blog. So many times, we smile and nod and accept these intentional compliments from people’s hearts, but when I get these “wow, you look great” comments, I always find myself saying but…but…but! For example, even though I’m in recovery mode from hip replacement, between now and the 3-year lead-up, it’s been excruciatingly hard; still, everybody keeps telling me how great I look and sound. My response…”it’s amazing what good lighting and an application of lipstick will do to fool you.”

      Reply
      1. Colleen Friesen
        Colleen Friesen at |

        You’ve definitely been through the wringer. That’s such a perfect Karen response 💋

        Reply
  3. Carolyn
    Carolyn at |

    Thanks for posting Colleen. Your writing is always insightful and it sounds like you. It’s so good to hear from you, telling it like it is. Big hugs.

    Reply
    1. Colleen Friesen
      Colleen Friesen at |

      Hullo Carolyn,
      I could feel my smile as soon as I saw your name. I hope you know how much goodness you add to the world. Thanks for being here.

      Reply
      1. Barb Rees
        Barb Rees at |

        I needed to read this. My husband was diagnosed a couple years ago when the doctor suspected his symptoms were not from the stroke. We walk our dog most days. Somedays he can walk 1 km, others not much. People also say he looks healthy for 82
        doesn’t have tremors. Thanks to your article I understand the lack of motivation, discouragement, tiredness. I will be more patient.

        Reply
        1. Colleen Friesen
          Colleen Friesen at |

          Thanks for sharing Barb.
          Yes, it seems this disease shifts its focus almost hourly. Some days are like pushing uphill all day and then the next day (or hour) it’s not bad at all. It’s very random and as a result, often hard to make plans. The trick, from all that I’ve read, is to keep moving as much as possible…not always easy when various parts hurt or the fatigue is overwhelming. Wishing grace and strength for you and your husband.

          Reply
  4. Joanne Scheurwater
    Joanne Scheurwater at |

    Colleen, once again you are a leader! Thank you for your honest words.
    I’m left wondering, though, what IS appropriate to say that shows genuine caring and concern?
    “ How are things for you today?”
    Or what would show caring and support for your challenging journey?

    Reply
    1. Colleen Friesen
      Colleen Friesen at |

      Thanks Joanne. I’m still figuring it out too. I think your way of asking, “How are things for you today?” or even just simply saying, “It’s great to see you and let me know if you want to talk?”
      The harder thing to deal with is someone saying, “You don’t look sick.” or “You look fine.” Those kinds of statements feel dismissive.
      Knowing who and how you are…you never need to wonder. You always have come across as a caring and compassionate human ❤️.

      Reply
  5. Catherine Clarke
    Catherine Clarke at |

    Thank you Colleen, for your insight into this terrible disease. Personally I know a couple of people with Parkinson’s and it’s often difficult to understand what they are enduring.

    Reply
    1. Colleen Friesen
      Colleen Friesen at |

      Yes Catherine. I think we all are better at understanding external and obvious issues, like seeing someone with their arm in a cast.
      We never know what someone is dealing with, whether mentally, emotionally and/or physically.

      Reply
  6. Laurie
    Laurie at |

    Beautifully written Colleen. Having an invisible illness can be very isolating in many ways and trying to navigate it is not for the faint-hearted .
    The early days of my diagnosis were some of my hardest and darkest.
    There is no pity party going on here either just gratitude for the good days and grace for the difficult ones. (But it took a minute to get here😊)

    Reply
    1. Colleen Friesen
      Colleen Friesen at |

      Laurie,
      There is indeed gratitude on
      my part for when things are going well. I’m still working on Grace 101 when things are rougher. And yes, being part of the ‘invisible illness club’ is not the club I ever wanted to join. But here we are.
      There are so many people who are trying to weather so many unseen battles.
      Another reminder to be kind…we never know what someone may be enduring.

      Reply
  7. sharon brown
    sharon brown at |

    I too have more to learn. Thank you for being my teacher. Love, SB

    Reply
    1. Colleen Friesen
      Colleen Friesen at |

      Me too, Sharon. Me too. You and I have navigated a lot of situations together. ❤️

      Reply
  8. Dora R Dueck
    Dora R Dueck at |

    Thank you for this, Colleen! I have a local friend who was recently diagnosed with Parkinson’s, about your age too, and she looks great, honestly, and I’ve told her as much, but your column helps me so much regarding the invisibility of the disease. It will help me be more aware, understanding, informed. Keep on teaching the rest of us, please! (And all best to you, and a hug.)

    Reply
    1. Colleen Friesen
      Colleen Friesen at |

      Dora,
      I am learning too. I realize how often I’ve done the same thing, not necessarily to someone with Parkinson’s, but other awful diseases.
      It has taken me awhile to figure out why these kind of compliments bothered me. Once again I wrote this as a reminder to myself.

      Reply

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