Category Archives: deep brain stimulation surgery

Deep Brain Stimulation Surgery

My husband was diagnosed in 2005 at the age of 39. Started with the usually, tremors, loss of arm swing, etc.Tremors went away very quickly with medications but the stiffness and slowness took over. He has slight dyskenesia and dystonia when his Sinemet kicks in… then as it tapers off he does somewhat better.

He had Deep Brain Stimulation Surgery this past January and has had 3 programmings so far. We haven’t seen any difference as of yet. I know Parkinsons Disease is different for everyone but I feel as though the people with tremors do better with Deep Brain Stimulation.

We are told that in could take a year of programmings to see a difference. Do you find this to be true?

I hope they didn’t do the surgery if they didn’t feel it would help?

Cathy

Response:

I invite anyone with Deep Brain Stimulation experience to comment here. I have heard reports that reflect a wide variety of outcomes. As you state, what works for one person may not necessarily succeed for another person.

There has been a 2011 study that evaluated the effects of Deep Brain Stimulation Surgery over a ten year period. The abstract of this study follows.

Archives of Neurology [2011] Published online August 8 (A.Castrioto, A.M.Lozano, Yu-Yan Poon, A.E.Lang, M.Fallis, E.Moro)

Researchers assessed the outcome of Deep Brain Stimulation of the subthalamic nucleus (STN-DBS) in people with Parkinson’s Disease over a period of 10 years. Deep Brain Stimulation (DBS) involves the use of electrodes that are implanted into the brain and connected to a small electrical device called a pulse generator that can be externally  programmed. DBS requires careful programming of the stimulator device in order to work correctly.

DBS improved the Parkinson’s Disease symptom score by 25% in comparison to no treatment, including resting and action tremor by over 85%, and bradykinesia by 23%. It did not stop deterioration in speech, walking, and postural instability, including falling and freezing. L-dopa dosages reduced to about 63% of what they were initially. Daily living activity also improved. Dyskinesia and motor fluctuation scores also remained significantly lower. Potential adverse events included : a trend to weight loss, visual hallucinations, impulse control disorders possibly related to dopamine agonists, progressive cognitive decline culminating in dementia,  device related infections.

Robert Rodgers, Ph.D.
Road to Recovery from Parkinsons Disease
http://www.parkinsonsdisease.me

 

Father and Son

What follows is truly an amazing story about the power of  family systems and the connection between a father and son. It is a testament to the truth that Parkinson’s can inspire and motivate in ways that we could have never imagined or anticipated.  

Jeff Meyers wrote the following story to me in an e mail last week. He gave me permission to share it with everyone.  Get ready to be inspired. I was.  

What’s unique about my story is that my father divorced my mother when I was a very young child and I never saw or heard from him again. I knew nothing about the man.

At age 54 I decided that I wanted to do some volunteering and, being quite familiar with with computers, html, and content editing and writing, I came across an opportunity at the Parkinson’s disease Association of San Diego to update and maintain their website. I continued building the site for 2 years, at which time the executive director offered me a full-time position. Up until I came on the scene, their website had generated a mere $1421 in income. Since being hired 4 years ago, the pdasd.org site, the Tulip Tribute Funds site, and our Annual 5K Parkinson’s Walk & Fun Run site (both of which I created) have generated over $300,000 in income.

I also video taped our Parkinson’s educational seminars and, while viewing a live presentation through the video camera, I noticed that 2 of the presenters made reference to a Dr. Harold Russell Meyers, M.D. during their presentations. After the event I followed up with the two neurosurgeons, one of whom was very familiar with my father’s work. I did some research online and that’s how I found out who my dad was. My father did the pioneering work in the development of Deep Brain Stimulation Surgery (DBS). There was never any mention of him in our family all the years while I was growing up.

Now, isn’t that an incredible story! Who would ever have imagined that I would be “connected” to Parkinson’s–and my father–through this series of events? Life…what a mystery!

When I’d finished the Tulip Tribute Funds website, I told my only sister, who I had just recently heard from in over 40 years since the breakup of the family (her choice) and she revealed to me that she was the only child who maintained any contact with my dad in all the years of separation. Interestingly, she is the only child who ever finished college; in fact she earned 2 doctorates at McGill University in Montreal. She was the one who added the testimonial about Dr. Meyers on the Tulip Tribute Funds site. Hopefully, he’s beaming with pride from somewhere “above.”

It seems that my dad had received 32 honorary doctorate degrees, was a Seniors Olympics Champion sprinter through the age of 84, hung out with the likes of Alan Watts, Buckminster Fuller, S.I. Hayakawa, Alfred Korzybski and many other “high-level” intellectuals of his time. He had achieved many other professional accomplishments throughout his life, but being a father to his 6 children was not one of them. I am very blessed because I have a wonderful son who is so dear to my heart, and we are “best of buds” as the saying goes. Well, such are the possible “hands” one is dealt in life!

At any rate, here is where we are today…all of us together…fighting the “good fight” to find a cure for PD! I absolutely love the people I’m working with, and to add you to the mix…what a blessing!

Jeff Meyers

Robert Rodgers, Ph.D.
Parkinsons Recovery
www.parkinsonsrecovery.com