PD Diagnosis to DBS

In 5 days I will be probably be as nervous as I’ve ever been, even more than the night before my first court appearance as a practicing lawyer. I am quite sure however, that the events of 14 November are going to go infinitely better than that first outing in court (for the record it was bad, very bad).  The rationale for focusing on the low bar (ha – lawyer joke…ok, not a very funny one) that day set is simple: I am trying not to have my expectations raised too high by the outcomes of the surgery I am undergoing on the 14th.

I do not know but I am sure my journey with Parkinson’s must set some form of record (unlike myself being built for comfort not speed). I was diagnosed on 8 April 2009, my son’s 2nd birthday, and less than 4 years later I will (very gratefully) be having Deep Brain Stimulation surgery to help manage some of my motor symptoms. Whatever the case may be, my truly amazing wife and I would happily not be in this position if we had any choice in the matter. But we don’t.  So we have to suck it up and face the harsh reality of life as a young family with Parkinson’s.

Parkinson’s is greedy.  Greedy for attention, greedy for any aspect of your life that you may otherwise wish to have some control over. It is a fickle bitch that can fool you into thinking you can do something one minute then snatching it away from you the next. And much like a failed attempt to pull the table cloth out from under the dishes, everything in your life can come crashing down in an instance.

I am really really tired and really really sick of what this disease has done to me and to my family’s lives. But keeping expectations at a realistic level, I am hoping, hoping that surgery will give me some more quality time with my family and friends.

So what is DBS?  It is a surgical procedure that seeks to reduce “on/off” fluctuations as well as dyskinesias. For what this all means medically, I refer you to this helpful glossary. What this means in the real world is that I either cannot move much at all or I move too much and uncontrollably. I have a pretty good idea how it feels to be cased in concrete on the one hand and the frog who receives electric shocks in school classroom experiments on the other. Not cool either way.

“In DBS, a thin electrode is implanted into the brain, targeting motor circuits that are not functioning properly. Small electrical pulses from a device similar to a cardiac pacemaker are then used to stimulate a small brain region and block the signals that cause some Parkinson’s symptoms. DBS may be targeted to the globus pallidus or subthalamic nucleus to improve motor function. The stimulator is adjusted as necessary to optimize the effects of the surgery.

The mechanism by which DBS works is not completely understood, but it seems to counteract the abnormal neuronal functioning that occurs in Parkinson’s disease. DBS is increasingly attractive for many advanced Parkinson’s patients, particularly as more surgeons become proficient in the technique.

DBS is not suitable for all patients. Generally, patients with typical Parkinson’s disease who have had a good response to levodopa, but who are experiencing medication-related motor side effects, such as dyskinesias, may be good candidates. DBS is usually not recommended for patients with dementia.

Generally, DBS does not improve those symptoms that do not respond to levodopa. DBS may help patients achieve motor function off of medication that is similar to their best pre-operative motor function while on medication, although this is not always the case. DBS also reduces motor fluctuations and off-time. While DBS can produce major improvements in many aspects of Parkinson’s disease, this is not always the case.” – courtesy of the Michael J Fox Foundation (see here for more information).

I have an amazing team of medical professionals on my case, the most supportive and fantastic wife by my side and great friends and family to help us on this journey. And yes, in 5 days I will be as nervous as a cat in a room full of rocking chairs. But I will be pretty bloody excited as well.

video By Animated Biomedical Productions http://www.medical-animations.com/

Specialists in 3d medical media. © 2009 Animated Biomedical Productions

Comments
5 Responses to “PD Diagnosis to DBS”
  1. Sarah says:

    Hi AJ,

    Really hope all is going well. Would love an update.

    X

  2. Ainsley says:

    Hi AJ,

    By now you are over the op and I hope it has gone very well for you. My thoughts are with you and your family and I look forward to reading about how DBS has improved your life. A friend of mine with dystonia had DBS this time last year and it has made an enormously positive difference to her. I wish the same for you. xx

  3. Jody says:

    Great overview for us not in the Parkinson’s family! Will be thinking of you and your family during this exciting and nerve racking time. Loving your humour through what must be a pretty shitty road at times. Life can sure throw some curve balls but just like you said you suck it up and take a deep breath and carry one as what else can you so? Keep strong and be nice to your wife! (as I’m sure you are!)

  4. Bourkie says:

    A really informative blog AJ. Our thoughts and absolute best wishes are with you, Lynn, Noah & Isla especially so in the coming weeks. Kia Kaha. xxox

  5. Helen Hughes says:

    Good luck AJ. My thoughts are with you and Lynn often, and will be with you next week. You are awesome – love the blog. Stay strong. xxx

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Parkinson's New Zealand has an amazing Field Officer service which provides education, information and helps people make informed decisions about living with Parkinson’s. I am proud to support their work.

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