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  • Has Parkinsons disease brought you closer to anyone?

    Posted by Mary Beth Skylis on December 23, 2019 at 6:30 am

    One thing I’ve recently noticed is how close my parents are. My Dad was diagnosed with PD in 2013. After he started growing accustom to the idea of change, it seems like he embraced a “carpe diem” mentality. Today, he and my Mom spend way more time together than they have in many years. They make a conscious effort to care for each other through the hard times.

    And it makes me wonder if others have experienced growing closeness with the diagnosis? Has PD brought you closer to anyone? How has your social or familial life changed? Are there good things that have come out of the disease?

    Mary Beth Skylis replied 4 years, 3 months ago 6 Members · 8 Replies
  • 8 Replies
  • Toni Shapiro

    Member
    December 23, 2019 at 6:21 pm

    Hi Mary Beth,  I think I screwed up again and posted on the wrong thing.  I just wanted to say Yes, I am closer to my husband.  I am surprised that he has been so supportive and caring and interested and I feel like I have let him down by getting this disease.  He has been wonderful and it’s very difficult for me to accept his help and understanding.  I was always the active one, the care giver to all.  That part is not easy.  I knowvI am changing his life but we are very close.

  • Phil Gattis

    Member
    December 24, 2019 at 9:31 am

    Yes, it has deepened our marriage of 34 years.  I’m also a member of a very supportive church-community.

  • Michael R. Scott

    Member
    December 24, 2019 at 10:01 am

    Dear Mary Beth,

    Yes, the same thing has happened in our marriage also. My wife has been a very successful Interior Designer and when we had the “talk” about 10 years ago that she did not have to work anymore as I had a great retirement and our investment account had grown so well that we really did not need her to work… Her response was, “Well I still really like what I am doing”… 🙂 That said, she did reduce her work load so that she worked only three days a week rather than six days….

    Then four yers ago, when I sat her down and explained that I had been diagnosed and that despite excellent health and physical condition, this disease could kill me much sooner than we had planned for… The next she up and wrote letters of thanks and announced her retirement to her clients and now we spend every moment together which has allowed me to do a ton of fun things with her… I’m even getting a chance to finally teach her to fly fish!!.. 🙂 Despite the PD (which is progressing very, very slowly) we are having some of the best times of our live……. Ours is a  a second marriage for both of us and when I thought I could not have a more wonderful life than what I’ve known  since I walked into her Interior Design Studio some 37 years ago, our lives have gotten even closer and happier….. 🙂

    While PD can be a curse, I have found that many couples we’ve met at the Clinic and through support groups, also have happier and more involved marriages than what they  had before the diagnosis of thier husband and wife….. 🙂

    Mike Scott

     

  • lindalou

    Member
    December 24, 2019 at 3:07 pm

    Yes — I didn’t think it was possible for my husband and myself to get any closer [ we’ve been married for 37 yrs.] but since my diagnosis 10 yrs. ago I’ve been amazed at what I’ve learned and continue to learn about my husband’s capacity for compassion, support, patience, and acceptance. I hate that I depend on him for so much but he says he doesn’t “know what I’m talking about”. I knew I had found a gem of a man when I married him all those years ago, but I didn’t realize how rare that gem was until we started living with Parkinson’s.

  • Stanley Yip Moy

    Member
    December 26, 2019 at 10:26 am

    Mary Beth
    I’m glad to see so many positive responses, but mine is the opposite. My dear wife of 50 years is in total denial of my July 2015 diagnosis, which thank goodness is progressing very slowly. She wants & demand her “old Stan back”, not the current one, and it’s driving me crazy!

    I’m hoping with time we’ll make the necessary adjustments, as this is an evolving adventure. In the meantime I exercise everyday, eat healthy, and maintain a happy & active life style.

  • Mary Beth Skylis

    Moderator
    January 14, 2020 at 9:30 am

    Stanley, I’m so sorry to hear as much. And I hope that she’ll come around. Fighting a disease like Parkinson’s takes alot out of you on a daily basis. I’m sure you can use all of the support you can get. But it sounds like you’re taking all the right steps (exercise, good food etc). Have you found any comfort in other programs or people? I know that Rock Steady Boxing has a community that can make a big difference for people. My Dad (diagnosed in 2013) loves being understood. And even though we love him to death, sometimes there are things that are hard to understand unless you’ve experienced them.

  • Mary Beth Skylis

    Moderator
    January 14, 2020 at 9:33 am

    Michael,

    I’m so happy to hear as much. And I’ve heard that fishing can be a great activity for PD patients! But I don’t know very much about fly fishing.

    My Mom and Dad have been there for each other in a way that I haven’t seen for the past 20 something years of my life. And it’s often heartbreaking to know that they’re standing tall together because they’re fighting PD as a team, I am amazed at their relationship. And who they’ve become to one another.

  • Mary Beth Skylis

    Moderator
    January 14, 2020 at 9:34 am

    Lindalou,

    It’s interesting how often hardship makes those gems shimmer.

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