parkinson's disease

Weight Gain after Deep brain Stimulation (DBS) appears to be Gender Specific. By Dr. De Leon

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” I keep trying to lose weight but it keeps finding me!…”

As I have mentioned several times in the past, I am particularly interested in women’s issues as they relate to Parkinson’s disease because I believe (and fortunately others are beginning to agree with me) that gender does matter in the presentation, disease progression, response to treatment, and most importantly outcome. Over the last month I have been particularly interested in weight changes with PD in light of the fact that I have put on several extra pounds with the medication changes. Many of us know first -hand, that weight issues are yet another aspect of living with PD; yet it seems to me that us women appear to have the short end of the stick in this regard particularly when it comes to weight increase after DBS.

In my practice it seemed to me that men rarely complained about weight issues unless the spouse4s or care takers were concerned about their persistent weight loss. On the other hand, the women always seemed to complain of increased girth, which I am sure many of you can relate especially after menopause there is already a tendency for weight gain. At the time, I attributed some of this behavior to inactivity as well as depression which usually causes an increase in sedentary life thus decreasing caloric consumption. (This was the accepted concept within my profession). But, after living with this illness for lo this many years and being around a greater number of patients of all ages, I am not entirely sure this is the correct assumption.

I firmly believe the differences are rooted in gender particularly as it relates to estrogen. Why else would there seem to be an increase in weight in women after DBS particularly the STN (sub thalamic nucleus which is most common site for dyskinesia treatment) transplant not typically seen in men of same age, ethnicity and disease stage? Weight gain post dbs occurs in about 30% of those implanted and appears to be gender specific. Several of my close female friends who have undergone this procedure although has worked very well in controlling symptoms of PD has caused an increase in weight and not necessarily because of decrease in energy expenditure from dyskinesia’s. This can be further substantiated by a study looking at the weight changes with DBS in both men and women. Patients post DBS had on average of 6.6 lbs. by 3 months up to 44 lbs. in a year. Interestingly, women gained mostly fat while men increased fat free mass. This is huge in my mind and suggests to me that we should start treating women and men differently after surgery and even before to decrease risk of weight gain which also increases the potential for cardiac and cerebrovascular events for which women with PD are already at higher risk, as well as metabolic disorders like diabetes. Both diabetes and insulin resistance risk increases with dopamine replacement. We still don’t know for certain what causes this metabolic changes. Some speculate that is the sudden loss of energy expenditure from muscle rigidity, dystonia, and dyskenesias. Others think it could be affecting the sympathetic nervous system controlling organs. In men there was no change in testosterone but no mention of estrogen levels recorded. Best outcomes with the lowest weight gain occurred in patients who had the worst UPDRS 111 scores before surgery (i.e. had significant improvement with dopamine and severe “off”).

Advice based on this findings before doing dbs: talk to your physician and be informed.

  1. Because it occurs with b/l stn surgery (no other data available) consider unilateral or different site?
  2. There is a case for doing procedure on the RIGHT patient and in the right window.
  3. Submitting yourself to a strict program before and after to control weight which includes decreased lipid intake and increased exercise, progressive physical training early post-surgery.
  4. Check for metabolic abnormalities such as thyroid and insulin resistance which can increase weight.

Sources:

http://www.medscape.com/viewarticle/561023_4

https://www.ncbi.nlm.nih.gov/pubmed/14639677

parkinson's disease, Parkinson's Health, Parkinson's treatment

Taking a Closer Look at DBS: By Dr. De Leon

Recently, there has been a spur of interest in the surgical treatment known as deep brain stimulation (DBS) among the Parkinson’s community. Although, this procedure is by no means a ‘novel’ or ‘new’ treatment being approved by FDA back in the late 1990’s for tremor and 2002 for PD has begun to reach general stream awareness due to postings in the media by concert master R. Frisch playing the “fiddle,” during brain procedure (DBS). Of course, who can forget the recent nationally televised event which took place at University Hospitals Case medical Center in Cleveland, OH on October 25th on a YOPD patient began another debate of when and who should be having this procedure done?

Despite some reservations which include non-disclosure of funding by Medtronic’s to hospital and surgeons performing operation as well as an increased risk of possible complications due to outside factors usually not-present in the operating room; I believe that educational broadcasts such as this one play a very crucial role in validating DBS as a viable and effective treatment while raising awareness and promoting its use.

Even though, DBS is the standard of care in the treatment of Parkinson’s disease, since its approval only roughly 5% of all PD patients have had this procedure done, according to Dr. Allison Willis, Assistant professor of Neurology & Biostatistics and Epidemiology at The University of Pennsylvania school of Medicine. This is a great travesty considering that nearly $100 billion were invested by Medtronic’s to bring this technology forth. However, the worst part in my opinion is the huge discrepancy seen in those implanted, at least here in this country, which tend to be white males (95%). Even when women and other minorities are seeing and being followed by the same specialist as the men implanted, these groups seldom even get the option of DBS as a potential treatment.

So how do we decrease these discrepancies?

First, by being aware of its existence and coverage by insurance including Medicare (other assistance programs available through Medtronic’s). Now we also have a new competitor on the market known as the Brio Neurostimulation System. This unlike the Medtronic constant voltage device- it has a “constant current” delivery system allowing it to react to brain wave changes over time, thus potentially decreasing number of reprogramming visits.

Second, knowing that there is a specific type of person that benefits most from this procedure as well as a time window for obtaining best results.

Third, although usually offered or reserved for those who have clear cut tremors, dyskinesias, or intolerability to medications due to side effects of the same in the presence of good and clear cut symptom control with levodopa; some physicians are opting to perform this procedure in YOPD patients early in the disease in hopes it might alter the disease process. This is not yet known. At present DBS is not a cure nor does it alter disease progression however, it does buy the individual with Parkinson’s time for other advances to occur as well as decrease both the doses and medication side effects.

The one reservation I have in performing the procedure too soon is knowing when is best time to do? Since we still don’t have a biomarker or blood test or other objective testing to say a person has PD unequivocally besides a brain biopsy, I worry that for those that have other slower progressive parkinsonian symptoms – an implant maybe done unnecessarily.  However, I will venture to say that at 10 years one should have a clear indication of disease and whether or not it conforms to typical PD progression and if a patient would be a good candidate.

As I find myself in the process of weighing in the benefits of having a DBS for the sole purpose of reversing medication intolerability; I am again revisiting the top reasons why a patient can or does poorly with this procedure.

TOP REASONS for Less than Optimal outcome once RIGHT candidate chosen.

1.Neurosurgeon technique– find one with experience- one that has done many- ask names of people that have had done.

  1. Programmer’s experience is the most crucial in my opinion!!!! Best if the programmer is the SAME MDS/neurologist adjusting your medications. As voltage goes up medications MUST come down! Second best option is seeing programmer at same time in same office as neurologist. Find out about the programmer you will be seeing beforehand…how good are they? Bedside manner? Patient satisfaction?
  2. Patient’s lack of support from inner circle of family and friends. This is crucial if care partners are not on board with procedure – it won’t be successful. Or frail elder caregivers.
  3. Patients sometimes fail to fully grasp their own disease stage as well as their own age in regards to having risk for other medical issues. Unfortunately, as we age not only might we develop other problems like high blood pressure, diabetes, etc. but PD will continue to progress so distance to programmer is very important. Think about fact that you will make several trips a year especially at the beginning of DBS to make adjustments; thus traveling 5 hours may not be such a big deal at first but can get old and more difficult to do as time passes. If this is a problem and still a good candidate consider pallidotomy surgery instead or hopefully in next couple of years Focused ultrasound. I have had several patients who have undergone procedure only to not benefit from it because they could no longer travel to centers where programming was being done. Fortunately, now we also have two choices of devices both by Medtronic’s and Brio which produce constant current.

Now that you are aware of this new technology my esteemed reader, I recommend that you bring up the topic with your physician yourself but do in a separate visit to discuss this thoroughly.

Questions to ask?  

  • Am I a candidate?
  • Who and where will the surgery be done?
  • Who will do programming?
  • How many steps are involved in procedure because it seems to me like every teaching institution has different protocols-ranging from bilateral implants as an outpatient with no general anesthesia or sedation other than the part when battery is implanted in the chest wall to a 5 step procedure as is being done at Vanderbilt in which I believe also like to have patients asleep during surgery. Other concerns although purely for vanity purposes but also one that might cause more or less possible skin infections in scalp is the manner in which patient is prepped –total head shave or only minimal plus will they be using titanium halo for stereotactic mapping or a lighter frame?
  • Most importantly how long will you have to be off medications for the procedure? Some people have such severe pain or dystonia’s off medication that will make procedure much more difficult.

Now we are ready to embark on a life changing journey with the knowledge at our finger tips to help us and our doctors make the right decision of whether DBS is right for us or not? For me the idea of taking much fewer meds is extremely appealing but having to drive 6 hours round trip to get adjusted every few months is somewhat of a draw back since I will have to do this on my own most of the time. keep you posted!

Good luck to all of us!

Sources:

https://www.facebook.com/parkinsonsdiseasefoundation/photos/a.442545474003.246436.34178524003/10153629275519004/?type=3&theater

http://blog.pdf.org/2015/10/23/dbs-in-primetime-natgeo-to-air-brain-surgery-live-this-sunday/

https://www.michaeljfox.org/foundation/news-detail.php?fda-approves-new-deep-brain-stimulation-device http://www.uphs.upenn.edu/news/News_Releases/2014/01/willis/
go to http://www.pdf.org for more information on topic

parkinson's disease, parkinsons symptoms, parkinsons treatments, parkinsons y tratamientos

Dyskinesias- 8 Tips to prevent & manage DYSKENESIAs: By Dr. De Leon

The things I have learned about dyskenesias in a nut shell.

They are not a sign that you are having fun because you look like you are dancing even if they occur at the beat of   your favorite tune.

yes, although most of the time you prefer over being off or stiff, you can’t wait to go to sleep so the movements  can stop.

although, they are a great form of exercise you wish you did not have to exercise so much to look so great!

dyskenesias are great for doing the twist and Mixing fruit salad but not for putting on make up or reading a favorite book.

Is there a solution to dyskenesias?

yes…

mind you is not an easy feat….

The first thing to remember iS that is much easier to prevent than to stop once they occur.

Key points women are more likely to develop dyskenesias than men.

altough, We as patients know our bodies best and know a lot about Parkinson’s disease we should not manage our own symptoms without the guidance of a professional (MDS).

One, because it is very hard to be objective when it comes to our own disease state.

Second, most of the time what we intuitively think should be the right thing to do is not always the BEST treatment plan for the long run of the disease…this is where experts like myself and other movement disorder specialists come in handy.

Third, as I have mentioned many times before, anyone can treat Parkinson’s in the first stages because it will respond to any and all PD medicines; however as disease advances the expertise in the art of treatment provided by a seasoned specialist is indespensible. This is where knowing how to treat rather than what to treat with becomes crucial.

Fourth, when I was in practice it was common to see my first stage PD patients 2-3 x a years unless they needed something because they were pretty autonomous; but as Parkinson’s progressed the frequency of the office visits increased as should your visits to your physicians. It was usually every month to every 6 weeks  evaluation in my late stage disease patients and 4-6 times a yeAr for middle stages.  Even though, I understand as a patient we all get tired of visiting and going to the doctor, unfortunately this is the type of commitment that is required to keep DYSKENESIAs at bay and control before they become intrusive by adding medications like amantadine, Keppra, zonegran, comtan or Tasmar (or STALEVO which I love because it has so many doses ranging from 50 mg to 225mg) and adding long term release intermixed with short term and intermediate release.  Also things like DBS and other surgeries like pallidotomies; apomorphine and even Botox injections if have focal DYSKENESIAs or dystonias are great treatment options with proven benefit and low risk in the right hands of experienced physicians.

Fifth, although certain autonomy is allowed for patients it needs to be evaluated frequently because invariably most patients will overdose creating more side effects and DYSKENESIAs. More is not always better…we feel bad can’t walk, move, talk, swallow so we not only increase our doses but start increasing frequency sure way to develop DYSKENESIAs faster ! The key is to mix dopa agonists( especially NEUPRO because the continuous release will potentials the effect of levodopa giving it a more continous star in your body without having so many peaks and valleys), MAO inhibitors along with dopamine in various forms…don’t be afraid of taking several types of medications this is how you get the most benefit without having to take such large doses of levodopa and keep number of times you take medications down ( e.g. 4-5 x a day instead of every 2 hours).  We have so many new choices now.

Sixth, remember that dopamine agonists and amantadine effect usually work for several years in the range of 5-7 years after which their effect starts to wane but after a small period of rest ( 1-2 years off these medications) they can be again reintroduced having again a positive effect.

Seventh, It is recommended that around the time you enter the middle stages of disease (3-4th stages) every patient should start keeping a calendar of every medication taken. This needs to include time of intake of each medicine along with name, how long it takes to kick in ( what do you notice when it kicks in), how long each medication last,  can you tell when it wears off- what do you notice and the does medicine wear off suddenly. your doctors usually have copies of these calanders in their office, you can get from them or get from the website Or create your own. For instance, I can tell you that my azilect helps my pain & walking, my Neupro helps my vision and my STALEVO helps my brain feel “on.”

Eight, most important advice to prevent and stop these intrusive involuntary movements which make our lives miserable is early DBS before they start…if you Wait till after they start it will take longer to find right setting. when DBS setting is adjusted in brain It is imperative to adjust medications at the same time  for maximum result so need to find a doctor who can program in office and has extensive experience – this is one of those art things where experience truly dictate outcome. Patients with DYSKENESIAs by definition have already more advanced disease taking more medications therefore adjustments have to go even slower for maximum results which can be extremely frustrating. so find someone close by because will need a lot of visits; if not able to travel frequently to maximize benefit then should consider doing pallidotomies instead.

Parkinson’s disease is an extremely complex disease encompassing multiple body systems outside of the brain thus in order to have the best quality of life is to have disease managed by a movement disorder specialist who serves as the conductor in a well orchestrated performance involving many other subspecialties (including Gi, neurosurgeons, dermatologists. Urologist,internist, anesthesiologist, ENT, and ST, PT, and OT).  Together they can allow you to dance in whatever fashion you desire without the presence of DYSKENESIAs.

alzheimers, depression and suicide, depression/suicide in neurological diseases, parkinson's disease, suicide in parkinson's

Depression in Neurological Diseases like Parkinson’s: By Dr. De Leon

You treat a disease, you win, you lose. You treat a person, I guarantee you, you’ll win, no matter what the outcome.” Hunter – Patch Adams ( one of the best performances by R. Williams)

In the advent of Robin Williams untimely demise, a great deal of spark and conversation has ensued around the topics of mental illness including depression anxiety and bipolar diseases well as their connection to Neurodegenerative diseases like Parkinson’s.

Let me begin by saying first that although there is news of Robin Williams’s early diagnosis with PD -we do not have any details on his actual neurological condition or whether he was on treatment or not?

Furthermore, we must recall that it has been said that he battled with bipolar disease most of his adult life. Bipolar disease is more likely to result in a higher suicide risk and suicidal ideation and behavior compared to Parkinson’s. Nevertheless, we should not underestimate the severity of depression in any patient no matter the cause. And anyone suffering any type of mental illness like depression, anxiety, bipolar disease, etc. should seek immediate attention and get under the care of a specialist.

But we do need to be aware of some of the facts.

Depression is found to be more common in certain diseases like Parkinson’s, Alzheimer’s, multiple sclerosis, epilepsy, migraine, and stroke.

This depression is not caused by the fact that patients are given chronic progressive mostly incurable diseases; although, certainly the notion of having these illnesses has sometimes a negative impact on an individual and can accelerate or worsen symptoms. Furthermore, some of the medications used in the treatment of these illnesses themselves can cause depression, anxiety and other mood disorders. (e.g. amantadine, L-dopa, baclofen, bromocriptine, etc. while some meds that are used to treat pain in PD like those in the seizure class-depakote, lamotrigine, carbamaepine, etc.; and of course SSRi’s-Cymbalta, Zoloft, Lexapro, Effexor, etc. can be beneficial)  in the majority of neurodegenerative diseases, the depression precedes the neurological deterioration as a harbinger of  things to common.

In the case of PD, and Alzheimer’s these can be the very first clues of something amiss especially when there has never been a prior history of mental illness, depression or family history of such problems. According to the National Institute of Mental health roughly 18 million Americans suffer from depression yearly with a 12 month period. Depression is characterized by loss of appetite, although sometimes can be the opposite, loss of interest In things that used to bring pleasure and happiness, poor sleep or too much sleep, lack of energy, suicidal thoughts, poor concentration, feelings of guilt, and low self esteem these symptoms last longer than 2 weeks and the key is that the interfere with activities of daily living.

Women are twice as likely to suffer from depression than men which already puts PD women at higher morbidity this compounding effect maybe one of the reasons are now finding out that women with PD have more negative effects (meaning non-motor symptoms) like depression as opposed to men with PD who have more tremors (positive symptoms)…roughly about 50 % to 60 % of all PD patients suffer depression at one point during their illness and about 1/3 of patients present with depression as an early symptom before diagnosis. Yet despite this knowledge, the overall risk of suicide in PD is somewhat controversial. One study, in 2001 in the U.S. including more than 144,000 people with PD found the rate of suicide in general population to be 10 times greater than in the Parkinson’s population while another study done in 2007 in Denmark found the rate of suicide among PD patients to be equal to those in the general population. Another in 2009 said PD patients although appearing to be at higher risk for depression, they truly were not at higher risk for suicide compared to general population of Denmark. Yet, one thing this study highlighted was the  increase in suicidal ideation (thoughts); this was found to be much greater among those with PD than in the general population. This last piece of information is vital to help us remember and keep in mind of the potential for a slip for those suffering from PD. The possibility of suicide is ALWAYS there and given the fact that some of the medications can trigger or worsen or even cause mood disorders, we have to be extra vigilant as patients, caregivers, and health care professionals to discuss this subject at every visit especially when there are concerns before symptoms get out of hand. There are many treatments for depression including medication. I have discovered that in PD patients, the first step is often a matter of adjusting medications if discussed early. In severe cases (ECT) electroconvulsive therapy has been instituted. Treatment of depression and other mood disorders often requires a team approach including a counselor, therapist (behavioral), psychiatrist, psychologist, and neurologist. (Don’t forget about caregivers too- they also have high rate of depression correlating with extent of care)

It is also extremely important to realize that the highest risk and higher than expected rate of suicide noted to date among PD patients has been among those that have undergone DBS particularly in those that had depression or were single. This is why is crucial if you are considering this treatment that you do not partake if you have no social support or have history of mood disorders like depression. (unless absolute last resort and are under strict supervision by a team of specialist as I described above throughout entire life-this is my opinion) Make sure that you seek opinion of an expert that has done thousands of DBS to get best outcome.

So, even though, we have lost a great entertainer and we mourn his loss, his passing although uncertain as to the cause which led him to his final acts of desperation has provided us with a stepping stone to a new beginning of discussions to remember to treat the person and NOT just the disease– no matter if its Parkinson’s, Alzheimer’s, Multiple sclerosis, Bipolar disease or another chronic illness.

Let us remember to keep in mind  all those that suffer mental illnesses like depression …..

If you have questions regarding your Parkinson’s or think that you might have Parkinson’s and depression

… I invite you to call the National HelpLine of the Parkinson’s Disease Foundation at (800) 457 6676 or email us at info@pdf.org.

Otherwise contact

www.Samaritans.org  or www.suicide.org/hotline/texas-suicide-hotlines.html or http://www.suicidepreventionlifeline.org/
http://www.Speakyourmindtexas.org

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Dr. M. De Leon is a movement disorder specialist on sabbatical, PPAC member and research advocate for PDF (Parkinson’s Disease Foundation); Texas State Assistant Director for PAN (Parkinson’s Action Network). You can learn more about her work at http://www.facebook.com/defeatparkinsons101 you can also learn more about Parkinson’s disease at www.pdf.org or at www.wemove.org; http://www.aan.org, http://www.defeatparkinsons.blogspot.com All materials here forth are property of Defeatparkinsons. without express written consent, these materials only may be used for viewers personal & non-commercial uses which do not harm the reputation of Defeatparkinsons organization or Dr. M. De Leon provided you do not remove any copyrights. To request permission to reproduce release of any part or whole of content, please contact me at defeatparkinsons101@yahoo.com contributor http://www.assisted-living-directory.com Contributor http://www.lavozbrazoriacounty.com

parkinson's disease, parkinsons health and beauty tips

Health & Beauty tip #28: The TRUTH behind DBS ( Deep Brain Stimulation) by Dr. De Leon

Health & Beauty tip #28: The TRUTH behind DBS ( Deep Brain Stimulation) by Dr. De Leon

As a neurologist, I had the privilege of training at a time when surgical techniques like palidotomies, thalimotomies were in full swing as a means to control unwanted side effects ( dyskinesias) of levodopa treatment in parkinson’s patients. The advent of Deep Brain Stimulation (DBS) revolutionized the care of Parkinson’s disease patients offering hope and optimism and a better quality of life to them and their families.

I spoke to Dr. William Ondo (a good friend and colleague) who happens to be an expert in the field of movement disorders and DBS … and a professor of Neurology at the University of Texas Health Science Center in Houston, Texas.

I interviewed him regarding his views and experience with DBS and latest information on the subject ….I wanted to get a fresh and updated perspective from a neurologist that has over 10 years of hands on experience dealing with patients considering and getting DBS implant .He both examines patients to determine whether they are good candidates and accompanies them to the operating room..his programmer has equal amount of knowledge and training since prior to DBS being approved in this country for ET ( essential tremors) and Parkinson’s in the 1990’s.

As of a year ago, there were over 85,000 people implanted world wide.
Yet, despite the growing number of cases, there seems to be in my opinion a growing dissatisfaction and rising questions and concerns regarding when, who, and where to implant?
Hence, I sought the opinion of an expert to try to shed some light into the very complex subject.
Frankly, I have been a little shocked and surprised by the realization that nearly 20years after the introduction of a well established medical treatment for Parkinson’s as is DBS there appears to be more confusion and concerns than ever before among the Parkinson’s community. I wonder if my perception was being skewed or had he also noticed an increase in re-do’s, repositioning and increase need for adjustments in programming among patients that had been implanted.
He stated that ” if patients were not properly selected this was bound to happen!”

So, I began the conversation by picking his brain to help me write an exposé on the subject given the fact that in my daily dealings with various Parkinson’s support groups and Parkinson’s patients there appears to be a growing number of discontent and exasperation along with some cases extreme anxiety surrounding the subject before, during and after implant.

First, a few facts about DBS
What is it? it is a device of “implanted electrodes” deep in the brain known as the basal ganglia that provide a continuous small electrical current to these parts in an attempt to “jam the abnormal signaling between malfunctioning (either due to too much activity or too little) brain structures.”
No one knows the precise mechanism at the microscopic level- although extremely effective when done properly and while it is the state of the-art- treatment in Parkinson’s patients it neither removes PD, nor repair nor replace abnormal brain cells!

The first DBS was performed in 1986 in Europe and initially approved here in the states in 1993 for ET ( Essential Tremors- only known treatment to date that will halt tremors 100%). Subsequently, Parkinson’s got its indication in 1998 and dystonia treatment in 2003 ( other movements disorders like tics have seen its benefit but are still not main stream indications!).
But, one thing we MUST remember throughout the discussion is that just as PD remains an entirely unique disease for each individual involved so do the goals of DBS differ from person to person.
However, there are basic essential guidelines that must be followed to ensure a most successful outcome or at least increase your odds in a favorable direction!
This simply means that not everyone is an ideal candidate to receive DBS and they MUST be chosen wisely to minimize not only side effects, perioperative complications but also improve odds of effectiveness.
So, you mean is all about patient selection?
“Yes! there is a set of criteria that must be followed.”
What are the most important criteria in your opinion?
“1. have motor symptoms that clearly respond to dopa treatment, and 2. have motor fluctuations and dyskinesias.”
Are you saying these are the only criteria?
“No! but they are the most important. We must also ensure that patients have a good family support, no cognitive problems, swallowing or gait abnormalities, no history of depression, and is a good surgical candidate from a medical standpoint ( i.e. healthy a without other systemic diseases like cancer etc.).

Seems like criteria have not changed since I started my training, I said…these were same standards I followed while in practice…..

Only thing that seems to have changed is the public acceptance of being standard care ( which in part maybe reason for increase discontent because just because it can be done does not mean it should be done!) also, it used to be considered treatment in late stages or advance stages when fluctuations were present or medications neither tolerated nor working any longer.
However, there seems to be a trend to push for surgical intervention at an earlier stage. In fact some recent studies in YOPD from Europe have shown promising results. Maybe the wave of the future will be to implant early. Perhaps people will do even better and for longer periods of time if we discard current contraindications like swallowing, gait or even cognitive problems which are not part of early typical idiopathic Parkinson’s disease.

I wonder if the increase in complications and redo ( leads replacement ) have to do with surgeon inexperience? Or perhaps the benefit is being masked or substandard ( less than optimal) because of lack of programming experience…like everything in life and in medicine this is particularly true- expertise, knowledge and capabilities are user dependent.
As some of you well know from first hand experience, the experience of the programmer is as important or even more than the actual surgeon in ensuring a successful outcome! they must not only be acquainted with the subtleties of the programming devices but also be highly effective clinicians to know how far to push and when to hold back and how to adjust medications accordingly with every setting. In my experience the best programmers are those that are neurologist/ movement disorder specialist and or those that work extremely closely with the neurologist who knows how as well.

So, what’s in horizon for DBS treatment?
The St. Jude medical DBS device which is approved in Australia and in Europe but is not approved here in the US . According to Dr Ondo, this device failed to show what it promised in a study he speared. This particular non rechargeable device which was to offer 40 % more battery capacity and maximize time between battery replacements did not pan out or offer patients more control nor decrease risk of side effects.
Of course over the years , the re have been several modifications like the battery getting smaller lasting longer and also having one stimulator for bilateral stimulation. “Now, there are a few more adjustment options than previously but design still basically the same, replied Dr. Ondo. He stressed that still the best outcome and way to ensure greater patient success benefit and decrease side effects and complication is patient selection! Can’t stress this enough! “Patients that will do best are those that are generally healthy other than Parkinson’s and have DYSKENESIAs and have clear motor symptoms.” otherwise you are setting your self for disappointing outcome and even worsening symptoms like gait, speech, swallowing, and cognitive problems especially if already present but can be caused by the implant itself.

I asked about his experience with depression and DBS …”although reported in literature it is not extremely common”, he added. “What tends to happen more often is that depression is more likely to ensue with decreasing of dopa meds which inevitably occurs due to turning on of DBS”. However, it is important to track and monitor and treat accordingly..”but some of the depression,” he states , “may also be reactionary…patients hope DBS will cure all their symptoms or take away all the medicine and when it does not happen depression and disappointment can set in…one way to avoid this is to have clear cut expectations doc the outcome…what will the DBS do and not do…stop DYSKENESIAs, tremors and improve other motor symptoms but will not help with gait, and non motor symptoms.”
He and I recommend patients to Always do your research when considering DBS ..look at the doctor stats, ask for phone numbers of patients that have had this done …talk to them…also ask how many patients they have done, how long have they been doing this procedure. Equally demand these answers from the programmer…this is your brain and your life you cannot entrust such frail design as is the BRAIN to just any one..call the movement disorder society ask for their input.
Ask other organizations like PDF or PAN , or NPF to See who they recommend…ask around get second opinion if necessary….don’t ever go with someone who is eager to cut or put implant. The best surgeons are the ones that shy way from surgeries unless absolutely necessary!

In regards to focus ultrasound, I enquired if he thought this would be replacing DBS in the near future. Dr. Ondo informed me that there are currently 9 centers doing this research one of which is Virginia Tech but all for essential tremor at this point…he wonders if it will ever take place for Parkinson’s especially contraindicated in those that already have DBS because it will fry wires and injure brain…but even without DBS because it takes so long > 1 1/2 hr applying beam to scalp damages hair and because of site lesion required forPD ( deeper)in his mind there is a greater risk for bleed and causing permanent damage to nearby structures which can result in other movement disorders like hemi-ballismus- half of your body moves involuntarily.
Despite, the few shortcomings that some have experienced with this procedure, DBS has not only improved the life of thousands of individuals who otherwise 10, 15 and even 20 years ago had lost hope but has revolutionized the care of Parkinson’s patients world wide and still remains state of the art an in qualified hands in optimal patients nothing compares!

For more information on the topic go to http://www.pdf .org and look at “treating Parkinson’s -Deep Brain Stimulation”; can also go to Medtronics website. or contact Dr. Ondo at University of Texas Health Science Center.

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Dr. M. De Leon is a movement disorder specialist on sabbatical, PPAC member and research advocate for PDF (Parkinson’s Disease Foundation); Texas State Assistant Director for PAN (Parkinson’s Action Network). You can learn more about her work at http://www.facebook.com/defeatparkinsons101 you can also learn more about Parkinson’s disease at www.pdf.org or at www.wemove.org; http://www.aan.org, http://www.defeatparkinsons.blogspot.com
may also contact me at
deleonenterprises3@yahoo.com