Although none of the participants involved in the clinical trial I am currently participating in… and since I have nothing new to report on our current status, I thought I’d share information on DBS… something I hope to never need, but I recognize it as a blessing for many.
Notes from the convention as passed on by Laura Kennedy Gould’s Blog : THE MAGIC TRICK-Life With Parkinson’s
Deep Brain Stimulation (DBS) – Hardware
Dr. Kelly Foote of USA spoke on the topic of deep brain stimulation (DBS). Deep brain stimulation is used for treatment of PD symptoms, particularly tremor and dyskinesia. In his opinion, the placement of the probes is the most important aspect of this surgery. The surgeon, neurologist, and hardware programmer collaborate to choose the best brand of programmable hardware (with up to 8 contact points), depending on each patient’s unique situation. Hardware includes: Medtronic, Abbott’s St. Jude, and Boston Scientific. Each brand has pros and cons. In the past, deep brain stimulation hardware had challenges with replacing batteries and wire leads breaking in the system. Both have been reduced in the new hardware with rechargeable batteries now an option and the newest hardware being equipped with zero-wire-lead-breaking technology.
Deep Brain Stimulation (DBS) – Programming
Delving further into deep brain stimulation (DBS), Professor Michele Taliati, also from the US, discussed programming DBS devices. He claims that DBS programming is most important. Either one or two probes (bi-polar) can be placed in the brain. Two probes can reduce side effects. Programming allows for the adjustment of pulse width, amplitude and rate. He also introduced the concept of “impedance”. The medical dictionary defines it as “the resistance in alternation current circuits.” Medical equipment is often rated according to impedance to allow for optimum performance by matching impedance rates. During the question period, he noted that patient behavior can be changed by DBS.
………………….. Comments taken from conversations on community chats:
Since my deep brain stimulator surgery, I am able to walk as good as before I was diagnosed with PD. I can really peal out with perfect arm movement. I find myself humming while I walk. I wish this freedom to walk on all of you. If it isn’t going to happen at least exercise a little each day. If you don’t use it, you might lose it.
From a 70 yr old in Australia:
I have had the deep brain stipulation operation, and it has worked tremendously, no more tremors, though my balance is off, and my writing is horrible.
I am fairly fit l keep active by preparing a turf wicket for my cricket club, which I am a life member. I do swimming exercises once a week, and I have a wonderful wife who looks after me, for the past 45 years l was diagnosed in 2002 but l never excepted it until 2003,l had plenty of tremors and movement disorders, where l couldn’t control my arms and leg movements had the dbs operation which has been a god send, when people who saw me a couple of years ago they can’t believe how much l’ve changed for the best”
I had DBS in 2012 and it has. Done wonders for my tremors but it cost me my balance. I now have to use a walker or a wheel chair
My husband has had PD for 33 years. Been there. Thank God for the miracle of Deep Brain Stimulators that have been a literal life saver. He had this procedure done in 1999 through the VA.
Talk to your doc about DBS. They work. My husband went from a wheel chair and hospital bed to being able to function fairly normally. He too was on the verge of giving up but the DBS gave him hope and a new drive for life.
It turned out great. I’m able to do things I haven’t done for years! Lott of energy. My son says “i got my dad back.”
If you qualify do it. And if you can go to Shreveport for the surgery you’ll have the best care snd surgeron who does DBS.
……………………………………………..NOT for everyone 😦
My dr indicated that I am not a candidate for DBS because I now have significant cognitive impairment. It is difficult for me to tell time and make any executive decisions. Recently, when I needed to sign my name, I couldn’t remember how to do that. I also have the rigid type (very rarely any tremors). Do you have any input on DBS regarding a person with my limitations? I was diagnosed about 18 yrs ago and had symptoms 5 years prior to diagnosis.
Thanks for any knowledge you have about DBS suitability/ limitations.