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Michael’s Story
Site created on October 30, 2018
Hello Friends and Family,
It's time for us to be public about Michael's health. If we have not been able to talk to you about this, please, PLEASE do not be hurt. It's not that we want to exclude anyone from our lives...it's just that we have so much to manage right now.
We are working overtime to keep up with our lives, and it has been hard to talk about this. We want to make sure that when we share it is a full and accurate story, and we REALLY want to make sure that we share in a way that reminds you to continue to treat us with love but not pity. It can be pretty exhausting and difficult to try to fit all that into our busy lives.
We are hoping that this site will help us keep all the wonderful people who love us up to date on the journey. We really do appreciate your love and prayers and help, even when our busy lives keep us from talking as often as we would like.
In August of 2016, on Annabelle's first day of preschool and the boys' first days of 1st and 3rd grade, Michael received a diagnosis of Parkinson's disease. This finally explained symptoms that started when Annabelle was a newborn and Mike was just 35 years old. Unfortunately, even with a diagnosis it has not been easy.
If you know one person with Parkinson's Disease (PD), you know ONE person with PD. It's known as a "snowflake" disease, meaning that it is VERY different in each person. The symptoms and progression both vary dramatically. What works for each person is also very different.
Before Michael was diagnosed, we thought of PD as something that made elderly people very shaky. However, in Mike's case, the non-motor symptoms have been a very big deal. Shaking is the least of our concerns. He has been incredible, fighting each day through tremendous fatigue to do an exceptional job at working full time while parenting 3 kids. Exhaustion is our normal. We miss what our lives were like before this terrible disease took its toll. We miss being "regular" tired in the way that most parents of busy youngsters are tired.
We want to enjoy our children, careers, and relationships more fully. This brings us to a point where it is worth doing brain surgery to get some relief.
Michael will be having 3 surgeries to have DBS (deep brain stimulation) in hopes of feeling much better. The hope is that having electrodes placed in the correct part of his brain will stimulate his brain to make more dopamine (the extremely useful chemical that folks with PD don't make enough of). It's going to be a really challenge to care for the children and each other at this time - so we hope that keeping all our updates here and limiting the folks we need to call will take some stress off of us. These surgeries are planned for mid-November (OHMYGOSH a WEEK from today as we post this!), mid-December, and early January. He may look a little different in the new year!
We would be so grateful if you’d help us with the following as we share this news:
DON’T:
· Don't pity us. All five of us have our moments, but all 5 of us have gifts and talents and love and care to offer. Fear of pity has made it difficult to share this publicly. We want you to see us as the people you've always known and the people we still are.
· Don't forget that our children are always listening. Choose words carefully.
· Don't share too much advice. We know advice is so kindly meant, and we can handle a little, but it’s a lot to cope with right now. We are seeing some wonderful doctors. Please, PLEASE don't share the worst-ever-story-of-someone-you-know-with-Parkinson's!! We are trying so hard not to think in worst-case scenarios, and our own situation is plenty to handle.
· Don't ask too much too specifically about his symptoms. We love a respite from thinking about them. We love being asked how we are doing like any normal person, and will choose what we can share in the moment. But the symptoms are boring, repetitive and depressing. There’s only so often we feel up to discussing them.
* Don't get too crazy with Google! There is some misinformation about Parkinson's Disease on the interwebs. (Education is great though - websites recommended below)
* Keep talking to all of us about YOUR stuff. We love you and want to be included in your highs and lows. It’s exhausting to be wrapped up too much in Parkinson’s. The big and small things in your lives matter to us, and we are grateful when you trust us with them.
* Be a little extra kind to our kids right now. This is hard on them. (They have been blessed with phenomenal teachers again this year - both at home and at church!)
* Be a little extra kind to Michael and Kathryn. We're doing our best. In the past couple of years, we've accidentally let a lot of balls drop as we juggle this. Sorry! We swear we mean well!
* Educate yourself about Parkinson's and DBS. It's fascinating, impacts lives tremendously, and needs research! We long for more breakthroughs. Some helpful and accurate websites are:
www.michaeljfox.org www.parkinsonrockies.org www.davisphinneyfoundation.org www.parkinson.org Thanks for being our people!
I’m opening windows to let in the perfect Spring air. It’s cool and fresh and scented with lilac.
Mike isn’t rushing the boys to bed so he can crash. He’s playing with them. I love the sound of their laughter and teasing. I love that they’re enjoying each other.
This year has been so hard. I can’t find the words to explain what we have been through.
But... DBS has been a miracle. Mike has his life back. I have my husband back. The kids have daddy back.
I’m savoring more than the flowers blooming. My heart is so full.
Grateful to all of you for loving us through all of this. It has been terrible and wonderful and awful and beautiful.
