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May 31, 2017 Latest post:
Sep 10, 2018
Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting. Here is my story:
Soon after I was diagnosed with Parkinson's Disease (PD) I made a commitment to myself and my family that I would do whatever I could to slow the progression while also continuing to grow in my life and career. It was important to me to not let my PD define me, unnecessarily limit my life, or "win". I dove into my work, pursued my passions, fought hard, and even took an unforgettable and vigorous trip to Iceland.
As it turns out I have had Parkinson's longer than I originally thought. Despite my fight, and incredible support from my family, friends, bosses, colleagues and my care team -my Parkinson's has been advancing more quickly than expected. I am now taking my PD meds every 2 1/2 hours, including through the night! That's a lot of medication (and side effects!) To be honest, I feel cruddy every single day- in pain, little or no energy, often stiff and slow; or on the other extreme- twisty and spastic where I can't control my movements. There are many other symptoms I am dealing with, but I do not want to dwell on those here. I am still my Polyanna-ish self inside but depression seeps in from time to time. One of the most difficult adjustments I have had to make is I had to step down from my full-time leadership position at the Michigan Primary Care Association, my dream job.
PD is winning! This is not okay. Clearly it is time for a new approach.
After consulting with experts at Cleveland Clinic and weighing our options, my husband Joe and I readily agreed that the best option for me is Deep Brain Stimulation surgery.I know that sounds scary (believe me I am scared too) but it has been around for over 20 years and is FDA-approved.
But wait, not so fast. People with PD can't just decide to get DBS- It is only effective for certain people with PD. I went through three days of vigorous testing to determine if I am a candidate. The tests included psychological interviews, neuro exams, an MRI to see if my brain is constructed okay for this to work, topped off with 3-6 hours of memory and cognitive testing-- FUN!
And guess what? Not only am I a candidate, I am a strong candidate! I feel very lucky that I have the opportunity to have this surgery.
For those for you who don't know anything about DBS, here is a quick overview to give you a sense of it.
During the DBS procedure the surgeon implants a neuro stimulator (battery- operated device similar to a pacemaker) to send electrical stimulation to those areas of the brain that control movement. The procedure follows these steps:
1. The surgeon drills a hole the size of a dime in the skull and then inserts an electrode (called a lead) positioning it in targeted areas of the brain. 2. A week later the surgeon inserts an implantable neurostimulator or battery pack, under the skin in the area of the collarbone. 3. A few weeks later, a thin, insulated wire connects the battery pack to the lead. 4. Then the nerve stimulator is programmed to send signals to help relieve the patient's PD symptoms.
DBS is not a cure, and it does not slow or reverse the progression of the disease. It can however, provide significant symptom relief, and a significant reduction in the amount of medication needed. And relief from those pesky side effects. Hey, maybe I will be able to sleep through the night once in a while :-)
There are times now (an hour or two in length) when my medications are working just right, and I feel pretty good- not like I did I pre-PD, but pretty good in comparison with how I feel on average with PD. These are rare, and when they happen I want to shout it from the roof tops! I enjoy every minute of those rare "on" periods. This is the best outcome I can expect from DBS- to feel like that more often. I'll take it! Positive effects can last ten years or more.
My goal is to get enough symptom relief that I can return to being the wife, mother, friend, co-worker that I want to be – or close to it. I want to be able to take road trips, and not worry about how bad my leg is going to be or whether I will be so spastic I can't drive. I want to be able to ride horses, hike, ride coasters and wear heels. I really miss the heels and I refuse to get rid of them. I want to make plans with a friend and not have to cancel 3-4 times. I want to be able to commit to attending a meeting or give a presentation and be quite certain I can follow through.
I want to occasionally be able to go out in the evening and enjoy a concert or a ball game. These days it is unthinkable to go out at night, unless I have been resting all day. I want to be able to participate in my son's wedding, and not to have to be in a wheelchair at my other son's college graduation. I want to be strong enough to play with my beautiful granddaughter as she moves into Toddlerhood. I want to be able to visit my step mom in California and my in-laws up north, and really be there for them as they grow older. I want to work, and make the difference I know I can in the healthcare system in our state.
While it is important not to set unrealistic expectations for DBS surgery, it is definitely possible (but not definite by any means) that I can reach these goals!
Dates to keep in mind:
June 5-7: pre-op work and minor surgery to implant the screws in my skull that will hold my "platform "in place – this is the device that will hold my head still during the surgery.
Have to get my head shaved!!
June 15: this is the day of the brain surgery, when I will be getting the leads inserted into my brain. I will be in the hospital June 14, June 15, and June 16
June 21: this is the day that they will be inserting the neurostimulator under my collarbone. It will be done on an outpatient basis
Mid July - this is when the extension will be put in place to connect the battery to the lead in the stimulator. The stimulator will be turned on.
For the next 3 to 6 months I will be making many trips to the Cleveland clinic to get my stimulator adjusted to obtain the maximum symptom relief for me.
I have definitely grown as a person throughout this process. My relationships are deeper; I live more intentionally. I am trying to learn it is okay to ask for help and am getting better at that. So here I am practicing that important skill...I am asking for help. I am going to need support throughout this adventure, and so will my family. And I know people who care about me will want to know how I am doing.
This website is a way for those of you who care about us to track how I'm doing and give me support and encouragement along the way. We will keep it current with pictures and updates, and will let you know what we need, so you won't have to wonder. Having been on the other side of this many times, I know how hard it can be to know exactly how to help the person going through the surgery and the family :)