Bionic handball: A daughter’s take on deep brain stimulation

BaskingInSun_640In 2013, Dennis and his family traveled from Missoula to Portland so he could undergo Deep Brain Stimulation surgery for his Parkinson’s disease.

We’ve shared Dennis’ Parkinson’s story and the perspective from his wife Mary Ellen, as the primary caregiver.

Now, their daughter Daphne gives us a peek at what it was like for their family the night before surgery.

Tuesday, August 6, 2013

Bionic Handball

When you or a loved one is suffering from a disease, every cure or beneficial procedure seems to be put into a context of percentages. This becomes particularly true when dealing with surgery. Right now, I am hanging on to 1 in 1000.

1 in 1000 is the chance of something going seriously wrong during tomorrow’s surgery. Pretty nice odds when the lifetime chances of getting seriously hurt in a motor vehicle accident are 1 in 266. Really, getting through Portland traffic to get to the hospital may be more statistically dangerous than having deep brain stimulation! (Other interesting percentages: getting hit by an asteroid is 1 in 500,000, getting cancer is 1 in 7.)

Tomorrow morning Den will go in to surgery, the second DBS patient of the morning. When I asked the doctor, “What about alcohol after surgery?”, he replied, “You want recommendations? Oregon has some nice Pinot.”  It was established that Den can have a nice glass of celebration wine when he gets out of ICU.

Den will leave ICU with two U shaped transmitters in his forehead. About 10 days later he will go back into surgery to implant the power pack into his chest. It will then be programmed and turned on mid-September. So, tomorrow is the first part of a month long journey to finding some relief from Parkinson’s: in short,  we won’t know if the surgery worked for him until the device is programmed and turned on about a month from now.

In the time between tomorrow’s surgery and the chest implant, Den will have to rest his brain. He was told not to think too much and to take life very easy:  his brain needs to rest and heal. All questions about economics or geographical trivia will have to be answered upon his return to Missoula. I thought he could watch the E! Entertainment channel as much as possible, particularly any reality show with Kardashian in the title. Mom and he will, instead, head for the coast for the recovery period where he can be by the sea, which is probably a better idea.

Tomorrow feels hopeful. His doctor is one of the best and so is this health center. Den  is having such a hard time with Parkinson’s that we feel grateful we have this procedure as a possible chance to resume a more normal life. Den spent a fair amount of time with the doctor today asking if the wire from his chest to his brain could be longer so he could have full motion during handball. It can’t, which could provide a good excuse if he loses a handball game after recovery. As Den showed the doctor the full motion he needed for handball, I felt a surge of happiness: it has been a long time since he has talked about playing his favorite sport.

Thank you all for your encouragement, support, and hope.

2016 update from Daphne:

I clearly remember this time in our lives: the night before the surgery, our family (my parents, four kids and husband) went out to a chic, bustling restaurant in Portland. We laughed and talked about everything but the surgery — just gave a lot of “thankfuls” for having each other and life as it was so far.

The feeling before such a major surgery is surreal: dream-like, almost, in its intensity and its possibility.  After the surgery, we were relieved everything went well and felt quite hopeful about Den having some relief from Parkinson’s symptoms.

While it was not a cure-all for him, life after the surgery has certainly been better for him than before it, and I do believe it has given him more years to participate in activities he enjoys. Since his Parkinson’s diagnosis almost 15 years ago, Den has fought to define the role of Parkinson’s in his life and not have it define him: I think the surgery has given him more years to feel he is in control of the disease.

For this, and for his daily presence of support, love, and good humor, I am forever grateful.