The long journey to my husband’s deep brain stimulation surgery
The process was long and arduous, but we got through it as a family
When I look back on our journey with deep brain stimulation (DBS), I wish I’d documented our experience on paper rather than the bits and pieces of memory my brain struggles to recall. But I’ll do my best.
For many years after my husband, Arman, was diagnosed with early-onset Parkinson’s disease at age 38 in 2009, our neurologist felt that DBS would be the best treatment for him. However, Arman wasn’t convinced that DBS was necessary and elected to try the Duopa pump.
In 2017, Arman had been muddling through life with the Duopa pump for several years. The constant and steady delivery of his Parkinson’s medication was great; however, he’s sensitive to the medication. The result was an uncontrollable leg kick and extra movements (dyskinesia) that eventually became unbearable.
If you’ve read my column, you may already know that when I told Arman to “Get busy living, or get busy dying,” he proceeded to go ahead with DBS and didn’t look back. It was spring 2017, and we had the wedding of our beautiful niece and soon-to-be nephew coming up that fall, so we needed to act quickly. Our neurologist was thrilled with the decision and put the wheels in motion to get this going before Arman changed his mind!
The road to DBS surgery
Neuropsych testing was the first step. It was a long and arduous process, but the results showed that Arman was a great candidate for DBS. The team of specialists studied him in detail and decided that the best option for DBS placement would be his globus pallidus internus region. The surgery was planned for July 17, 2017, with the possibility of a second surgery the following week (in case the brain pacemaker couldn’t be placed on the first date).
We were amazed that we could get this all planned in such a timely manner. The only issue was that our oldest daughter, Lexy, then 21, wouldn’t be in town for the surgery, as she’d already committed to working in Luxembourg for the summer. In addition, my parents had already planned a trip to visit her there during the time of the surgery. Although we wanted to have all of our family present, we realized this wasn’t possible and went ahead with the plans.
Unwavering strength is something I’ve done my best to model for our children since Arman’s diagnosis. I wake up every single day reminding myself to be strong for my family.
But on the morning of July 17, 2017, unfortunately, I wasn’t physically or mentally capable of being strong. I hid in my bathroom and called my parents (remember, they were in Luxembourg) for support. I broke down and sobbed uncontrollably into the phone. They talked me through my mini-breakdown and reassured me that this choice was right for Arman and our family.
I took a deep breath, dried my tears, put on a brave face, and got my husband up and ready to head to his surgery.
Arman was also nervous and terribly upset that Lexy wasn’t with us. In addition, our son, Jake, then 14, was supposed to leave that same morning for football camp, and Arman begged for him to stay back with us; he needed our daughter Mandy, then 17, and Jake with him. Jake didn’t get on the bus that morning to travel to camp with his team. He and Mandy stayed by their dad’s side until the last moments before they took him for surgery.
And then, we waited. Our entire family, plus my closest friend, who’s like a sister to me, gathered in the family waiting area. We talked, laughed, and passed the time together. I couldn’t have gotten through that day without their support, especially as my parents and Lexy were away.
The surgery lasted over 10 hours. Doctors couldn’t complete the pacemaker portion because it was too risky to keep him under anesthesia any longer. We all hugged and cried as we were told that the surgery went well and Arman was doing great. The pacemaker was successfully placed and connected to the DBS wires exactly a week later.
Our DBS experience was positive, and it’s been the best choice for Arman and his Parkinson’s. Although it was a lengthy process to finally make this decision, trusting our doctor and his experience was the right thing for us.
Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Parkinson’s disease.
Very nice post, discussing the process of deciding to undertake a big surgery, even though you expect good things to result from it. It was particularly brave to share your moment of doubt when you hid in the bathroom; very relatable and shows the importance of friends & family to pick you up when you can't quite do it yourself.
Thank you. I agree that leaning on family and friends is an important tool to get through the hard times.
Marjorie E Weiss
My husband had DBS in 2007 and 2009 and it still works for him. He is 70 now. We've been through four battery replacements. It saved him as meds did not work for him to give ANY ontime. We were different and did not have the anxiety you expressed which I say only if it helps others see that it all depends on the person. For us, we were calm about it and hopeful.
Thanks for sharing your experience, I am glad it worked out well. We switched to a re-chargable battery after a year and a half.
Thanks for sharing Jamie. PD is such a hard row to hoe. My wife at age 75 was diagnosed some years ago and has basically been treating the PD with meds and exercise (and more exercise). As I understand PD, there is no cure at this point. I am curious as to how Arman is doing and post DBS have his symptoms diminished at all. How have things changed on the physical level. Thanks again for sharing.
I love that she is exercising so much! My husband is a huge proponent of exercise for PD too. Stay tuned for another column about PD post DBS, coming soon!
My dad did the DBS procedure a little over a year ago. But we haven’t noticed a difference in his mobility, any recommendations?
I can only speak from our experience with DBS, but it is a constant work in progress. As the PD changes, our specialists have adjusted the DBS settings and medications. My best to suggestion would be to talk to your PD team about optimizing the settings.
I highly recommend that you try using Manitol. It is a sugar which cleans the alpha synuclein protein clumps out of your brain. Since it is an FDA approved food (people with diabetes use it in baking) no drug company wants to spend the time and money doing the expensive testing to prove it can have an effect on Parkinsons. I can only report that I got my facial expression back, after 10 years of not swinging my arms I do now; my voice has become louder again, my handwriting larger and I can smell thing again (not everything). Use a teaspoon of the Manitol in juice or water once a day for a month or two. By then you will know if it works for you or not. Google Manitol (sometimes spelled Mannitol). It's the best thing that happened to me with regards to my Parkinsons.
Thank you for the suggestion! We will look into it.