4 Common Causes of Bladder Problems in Parkinson’s Patients : By Dr. De Leon

4 Common Causes of Bladder Problems in Parkinson's Patients : By Dr. De Leon

“Gotta go! Gotta Go!” I am sure all of you have seen or heard of this commercial. Unfortunately, for many of us living with PD this is more than a jingle….. IT IS A REALITY!
Every time you step into new place you have to scope it out to know where the nearest restroom is or have become afraid of traveling too far from home because of potential embarrassment.

This reminded me of the video submitted last year for the World Parkinson’s Conference at Montreal by that brave PD woman whose bladder symptoms were triggered by the mere mentioned of the sound of water running or the thought of water! And had to live by a neighbor with a running FOUNTAIN! TORTURE!!! I ABSOLUTELY SYMPATHIZE!

If any of you have ever had a bladder infection …you KNOW HOW MISERABLE it is to not be able to step 3 steps away from the restroom before having an urge …NOW imagine having these feelings ALL the time?!

Thus, today I thought I would write about a very frequent and common symptom of Parkinson which causes a lot of discomfort and disability but is often overlooked or underdiagnosed in my experience.
We know that urinary or bladder issues can be a problem for patients with Parkinson’s and in fact is very common in all stages. However, it tends to be worst in late stages of Parkinson’s . If it is more severe at the onset than most likely we are looking at a parkinsonism or Parkinson Plus syndrome ( like MSA). Bladder dysfunction occurs due to loss of dopamine. The message from the brain to the bladder can get mixed up and confuse bladder of when it should empty or retain urine. This is known as a non-motor symptom which although can cause a great deal of problems for the majority of individuals there IS a solution! However, in order to find an appropriate solution you and your doctor or team of physicians ( which is often required in most cases to have successful treatment of symptoms) must FIRST understand the cause or causes of the bladder problems!

Here are the 4 more common reasons for PD patients to experience bladder dysfunction.
Although, the majority of patients have usually one type – “we don’t all follow the medical texts”- as I like to say, Therefore, some of us may have a combination and worse may have a combination that fluctuates making it more challenging BUT NOT IMPOSSIBLE to TREAT!

Important thing to remember is that although bladder issues are part of non motor symptoms and can be present through out the history of PD they are not inevitable!

Remember, that if bladder problems worsens acutely or not improving to discuss with physician because other problems can arise like infections …having PD does not exclude common things.
In men, things like enlarged prostate or in women enlarged uterine can lead to going, going, going feeling. If you have a lot of bladder issues early on in disease may not be PD as I said earlier but Parkinsonism.

Parkinson’s disease causes both urinary incontinence and difficulty emptying both of which can be quite troublesome and lead to secondary infections as well.

Sometimes the urinary incontinence ( unable to control bladder) is not caused by dopamine loss effect on the bladder but rather its effect on rest of body. For instance, you might be in an “off” state or “under” medicated and having trouble moving fast enough to get to bathroom when urge hits…
so your bladder in this case works fine but your body does not respond fast enough!
Another issue outside of the bladder and independent of dopamine effect on the bladder is the Practicalities of using the toilet. The ability to USE the toilet can also stand in the way and cause incontinence..like not being able to sit down or pull your undergarments down, or unbutton clothing.
Having increase night time urgency ( nocturia) or wetting at night ( nocturnal enuresis) which can lead to trouble sleeping and increase fatigue and of course put a damper on sexual intimacy and personal hygiene. Also, if you have nocturia aside from putting a rift in intimacy and making hygiene a challenge cohabitating in the same room much less same bed can be a tremendous problem when you have to get up every 5 to 10 minutes to void neither you nor your bed partner get any rest! Lack of sleep as you know does nothing to help pain of PD and stiffness as well as tremors leading you to a catch 22 if already having trouble getting to bathroom this will only increase and worsen if you become slower, stiffer and shakier!

Therefore, it is imperative that you seek medical attention and treatment – which might require a visit to the urologist, gynecologist (if female ) and even at times a behavioral therapist along with regular visits to your neurologist. Remember, effective treatment often requires a multidisciplinary ( team ) approach. Most cases can be successfully treated. Please don’t suffer In Silence. Next blog I will discuss treatments and studies but first want to mention two other causes of frequent urination in PD.

So, as I said previously some PD patients have urgency & frequency and can have accidents because not fast enough to get to bathroom while a second group can experience the opposite difficulty voiding (trouble going) either because bladder fails to contract or sphincter does not relax and can’t let the flow start…this too can lead to infections much higher risk than above. These individuals also have urgency and frequency but from poor emptying, the bladder feels like wants to empty
Anticholinergics also cause difficulty with emptying.

Another cause of constant urgency and frequency feeling with trouble voiding is severe constipation which is common in PD. In this case, feces can accumulate in the rectum causing distention subsequently pressing on the urethra giving sensation of needing to void. The constipation can be so severe that the rectum can distend to the point it might even obstruct the opening of the urethra making it nearly impossible to void.

So, in conclusion if you are often feeling like ” where is the bathroom? where is the bathroom? there is NO WAY to hold it in! blame that DARN brain disease…”then I think is time to have a long talk with your neurologist. Fortunately, there is help and most of the non-motor symptoms have solutions….however, need to remember to keep diary of what’s causing problem. is it due to dopamine malfunction either too much pressure not allowing sphincter to open ( the urologist, gynecologist, EMG doctor will be able to tell by doing test on your bladder), or your bladder is not responding to dopamine getting mixed signals making it go more often and usually a trial of meds like Detrol will help..
or is it outside of the bladder like you are “off” or “under” medicated so cant get to bathroom fast or unbutton clothes to use potty?!
or finally is it a medical problem like chronic infections or enlarged prostate or diabetes causing frequency.

Remember the more you know…the better you will feel!

( note: urine output increases at night as we age!)

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How many times do you think a normal person empties their bladder in a day?

A: 4-6 x a day

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

Tips on How to Maintain Dental Care & Oral Hygiene In Parkinson’s Patients: By Dr. De Leon

Be true to your teeth, or they will be false for you.” Soupy sales

It is true that Parkinson’s in rare instances has been diagnosed by very astute
dentists who saw tale tell signs and referred them to a specialist who confirmed
diagnosis but this is the exception rather than the rule. So, it is up to all of
us who suffer with or care for someone with Parkinson’s (PD) to educate other health
professionals about our symptoms including our dentists.

This education begins with a thorough medical review of medications, symptoms. Your dentist
should as a routine monitor your blood pressure and other vitals and always discuss
any medical issues and changes to your medical regimen which might impact your dental care
in any shape or form.

For you see, as many of you have already figured out, having Parkinson’s can present a very complex
and unique set of challenges to you and your dentist when it comes to providing routine and not so routine care.
Plus, the fact that you have PD alone can cause problems with your mouth, gums, and
teeth due to multiple factors.

Therefore, it is important that you are aware of what the issues are and how to
be proactive in preventing problems. By being knowledgeable, you can be
instrumental in helping your physician(s) and dentist to work together to
provide the best possible care for you in order to continue to maintain the best
quality of life for as long as possible which includes maintenance of your teeth for
a healthy dentition but also a pain free mouth.

It is estimated that about 25% of patients with PD experience a syndrome known as
Burning Mouth Syndrome.” This problem can result due to multiple factors. The main cause is ultimately
the tissues in the mouth becoming dry. These occur as a result from things like
vitamin D deficiencies (or insufficiencies)-which are extremely common in PD; multiple medication intake
(especially PD meds like Artane -[trihexyphenidyl] or [amantadine]- Symmetrel which
cause dry mouth or decrease saliva input by blocking choline receptors). Other conditions which lead to mouth
dryness is known as Xerostomia (dry mouth from insufficient saliva production). Poor oral hygiene,
poor nutrition and even infections can also be some of the reasons patients with PD have mouth and oral
mucosa dryness. The dryness can subsequently cause pain.

However, before a dentist gives you a diagnosis of ” Burning Mouth Syndrome” make sure you check with your
Neurologist to exclude other causes of pain and burning in face and mouth which are
unrelated to Parkinson’s like trigeminal neuralgia, shingles, atypical face
pain, bruxisim (grinding of teeth) and are much more common especially in older populations.

Once other causes of pain have been thoroughly excluded and pain is related to Parkinson’s due to multiple factors above
it is the job of the dentist to help sort out which is the main culprit in the pain -whether infections, or lack of saliva,
or poor nutrition or hygiene …thus make a formal treatment plan to alleviate symptoms.
treatment plan can include things like:
Use of artificial saliva to help with dry mouth, for sailorrhea consider a
couple of alternatives sucking on hard candy of course sugar free…but don’t
want or increase cavities and increase diabetes so if drooling severe discuss
medication options like levsin or Botox Injections into salivary glands. Botox
injections are still the recommended treatment for bruxisim which causes severe
jaw pain ….this is most effective …guards do not worK! & are Expensive!
And usually break !

Also to prevent decay, make sure you brush regularly. It can be hard to brush
and maintain hygiene especially as Parkinson’s symptoms progress due to poor
dexterity, Loss of fine motor control, increase rigidity , tremors and
dyskenesias to name a few things so consider investing in a good electric tooth
brush. Also get a long handle for it to make it easier to maneuver.(I have had to switch because
my rigidity was preventing me to be able to brush properly my whole mouth …one side is stronger than another!)
This solved my problem and if you have trouble flossing use mouth rinse 3 times a day!
Some dentist have suggested putting a regular grip brush inside a bike handlebar grip or a
tennis ball for stability and dexterity.
Also, try a ” one handed” technique using the stronger side of your body. Brush
after every meal, if not able to do so at least rinse your mouth with water or
mouth rise. You should replace your brush at least every 3 months or if bristles
are worn.
Also avoid irritating products like alcohol, tobacco, acidic and spicy foods.

Because Vitamin D is so compromised in PD patients, 1/2 showing Vitamin D insufficient, while a 1/4 have
clear deficiency, according to Archives of Neurology report.
Therefore, I recommend, that all PD patients have their Vitamin D levels checked at least once a year by their
Neurologist or MDS. The Endocrine Society Recommends the following guidelines for blood levels in adults and children.
Vitamin D deficiency-20ng/ml or less
Vitamin D insufficiency- 21-29ng/ml
Vitamin D sufficiency – 30ng/ml or greater (NL)

Of course when you have dryness and take a lot of meds you are more prone to
dental sensitivity and tooth decay….I know that since I was diagnosed With PD,
I have had lots of tooth sensitivity that fortunately
responds well to Proenamel Sendodyne.

Aside from the issues of dryness, pain and sensitivity there are many other reasons why it is difficult
for both patients and dentists alike to deal with oral hygiene.
First of all tremors have a tendency to increase during stressful
situations and what can be more stressful than going to the dentist! Tremors can
be present in the tongue and head (although head tremors are not typical of PD
but more pathogneumonic of ET but there may be some overlap in some patients).
These tremors are involuntary movements and can be present as dyskenesias or
dystonias of the neck which make a routine cleaning extremely difficult much less any other dental work.
Another big problem PD patients encounter is salivary control or excessive drooling (sailorrhea).
Patients can also have excessive neck rigidity or stiffness including that of the facial
muscles making it difficult to open their mouth and or weakness causing problems with
swallowing or biting down during X-rays or cleaning.
PD patients by nature are anxious and can become even more so increasing their levels of fatigue
during their visits to the dentists. These symptoms are both caused by the illness itself and can be a
consequence of the medications patients are on. The combination of anxiety, fatigue can at times make it
very difficult for them to tolerate being seated upright for long or awake to be cooperative.
Along the same lines, some patients, especially in moderate to advance stages may suffer from
orthostatic hypotension[OH] again making it extremely difficult to sit for any significant length of
time or tolerate change in position in body or neck movements without
causing them to feel faint, dizzy, or pass out.
One way to compensate for [OH]is follow some of the maneuvers I suggested in my blog on [OH]….wear Ted hoses,
make SLOW body movements and talk to doctor about medication changes consider new medication Northera …

Finally, Tips to help ease your anxiety and make your visit at your dentist easier :
1) Make appointments when you are at your best whether in am or in pm…. Most
Parkinson’s patients have trouble getting going early in am…
2) Ask your doctor to give a sedative like Xanax or Valium to relax you and stop
or decrease the tremors. ( have a driver)
3) If need to then schedule general anesthesia …if you do need general anesthesia…may
not be able to take your oral meds especially Azilect
or other MAO inhibitors. Avoid or limit meds like Demerol OTC cold / cough meds, dextromethorphan,
pseudo ephedrine, phenylephrine, nausea meds
Antidepressants -MAO -a , ssri’s , Snri, tricyclics- all of these have potential of making PD symptoms worse
Also minimize narcotics and pain medications.

But you can still take
NEUPRO patch and take oral dissolvable sinemet (Parcopa) your neurologist can
prescribe this….you can also have IV amantadine and can have scopolamine patch
to decrease nausea and vomiting but of course if you are going to have any kind
of procedure whether you have general anesthesia or mild sedatives ( conscious
sedation) like Xanax need to have someone accompany you because you will not be
able to drive on your own. For pain Tylenol plus an anti-inflammatory usually works well.
4) request to be seated more upright to reduce aspiration risks.
5) make more frequent appointments ( every -3 months if you have gum disease), and of smaller
duration to avoid fatigue, pain, dystonia

(I know that my dystonia really kicks in if my cleaning lasts longer than 30
minutes then I have pain for few days which then triggers migraines…I avoid by
asking for 5 minute breaks…if you are not feeling well DO NOT be afraid to reschedule!)

if you need to have work done [Consider restoration of old fillings, ill filling dentures,
replace crowns and bridges if needed in early PD when things are a lot easier with a lot less need
more anesthetics or suspension or alteration of medications or risk of
complications because difficulty owning mouth etc. also consider dental implants
for over dentures before Parkinson’s gets severe].

References:

Arthur H.Friedlander, DMD, Michael Mahler, MD, Keith M. Norman,BA, Ronald L.
Ettinger, BDS, MDS,DDSc,DABSCD, “Parkinson’s Disease, Systemic and Orofacial
Manifestations, Medical and Dental Management”, JADA, Vol.140, June 2009

Devere Ronald, MD FAAN, “Cognitive Consequences of Vitamin D Deficiency”, Practical Neurology,
Vol. 13, No.1,January/February2014.

James M. Noble, MD, MS, CPH. ” Dental Health and Parkinson’s Disease”,
Parkinson’s Disease Foundation, winter 2009

“Low Vitamin D levels Associated with Parkinson’s Disease’, Parkinson’s Disease Foundation News & Review, winter 2009

Michaell A. Huber, DDS. ” Parkinson’s Disease and Oral Health,” The American
Parkinson Disease Association, Inc. 2007

Satbir Grover, BDS, MS, Nelson L. Rhodus, DMD, MPH, Dental Implications of
Parkinson’s Disease, Northwest Dentistry Journal, 2000-2013.MN Dental Assoc.

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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

Parkinsonism & tremors in Pregnancy: By Dr. De Leon

Parkinsonism & tremors in Pregnancy: By Dr. De Leon

Just the other day, I wrote about the gender differences in Parkinson’s ….and today I open my mail and I get a whole journal about gender issues particularly that of neurology of pregnancy of various diseases which covered some of the movement disorders.

As I wrote previously, not a lot is known about pregnancy and Parkinson. In this huge journal less than one page was dedicated to this topic which tells me we still have a long way to go in understanding role pregnancy plays in Parkinson’s pathology and physiology.

As I mentioned in my blog on gender differences of PD , evidence of estrogen effects on PD is conflicting to say the least according to the experts. The opinions on whether is beneficial or detrimental are all over the spectrum depending on the different patients evaluated ranging from improvement, worsening and no change in motor symptoms. In a study of 36 pregnancies, 27 ( which was a total of 47% ) of them had either worsening which also included appearance of new symptoms of PD during or shortly after delivery. However, hard to say if this is true considering that this study involved only a very small group. Further studies are need to evaluate if indeed pregnancy tends to worsen symptoms or bring forth new symptoms. Good news, however, from this small study the patients often returned to baseline after delivery.

Only one report in literature has occurred of De novo onset of Parkinsonism at 11 weeks gestation of unclear etiology which resolved spontaneously after delivery!

On the other hand, unlike parkinson’ s, tremor may occur in pregnancy as a consequence of increased physiological tremor, from essential tremors or from drug induced tremor caused by agents that cause increase in adrenaline (sympathomimetics).

Essential tremor is the most common inherited movement disorder, characterized by action tremors usually affecting both hands but more common in one side. Tremors are worst with affeine and improve with alcohol (but I am not recommending you start drinking to self medicate!) [ as an aside, for people who are alcoholics and present with severe action tremors to the doctors office a big majority of them with proper questioning will tell you that they started drinking to mitigate their tremors subsequently becoming alcoholics! & thus tremors NOT caused by alcohol but essential].

Because most drugs used to treat tremors are a high risk during pregnancy particularly during first trimester and even throughout the duration of pregnancy. Only patients with disabling tremors should consider treatment.

Both groups [PD & ET] must discuss with their physicians if are at childbearing age especially if contemplating having children. But, MUST do so PRIOR to TRYING TO have children because in most or the majority of medications especially for tremors the damage can already be done by the time people find out they are pregnant in first trimester!
Also need to discuss if planning on breast feeding as most medications are also contraindicated!

Unfortunately, only Nebraska State has a pregnancy registry for Parkinson’s
As far as I know, there is no ET, pregnancy registry…

Here is a list of meds for PD and their FDA categories

Drug. FDA Pregnancy category Breast -Feeding
Levodopa. C. Do not use-no data on milk
Rotigotine. C. No human data
Amantadine C. Do not use
Artane. C. No data on excretion (milk)
Pramipexole C. Do not use
Ropinirole. C. Do not use -it is excreted in
Breast milk.

According to US Food & Drug Administration – Assigned Pregnancy Categories as used in drug formularies

Category A, B, C,D, & X

C : means that animal reproduction studies have revealed an adverse effect on the fetus and there are no adequate and well controlled studies in humans but potential benefits may warrant use of the drugs in pregnant women despite risks.

For more information on this topic go to: Demirkian M, Aslan K, Bicakci S, et al. Transient parkinsonism: Induced by progesterone or pregnancy? Mov Disord 2004; 19(11):1382-1384.

Scott M, Chowdhury M. Pregnancy in Parkinson’s disease; unique case report and review of the literature. Mov Disord 2005; 20(8):1078-1079.

Morgan JC, Sethi KD, Drug-induced tremors. Lancet Neurol 2005; 4(12):866-876.

Zesiewicz TA, Elble RJ, Louis ED, et al. Evidence-based guideline update; treatment of essential tremor. neurology 2011;77919);1752-1755.

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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

Trouble Performing Tasks Since PD Came Into Your Life? By Dr. De Leon

Trouble Performing Tasks Since PD Came Into Your Life? By Dr. De Leon

I sure have….
Most Frustrating thing for me was to discover that after being the QUEEN of MULTITASKING, I now was having trouble even carrying two things at once.
When, before NOT once did I need a calendar because I could keep everything in my head now even when I wrote things down I had trouble keeping track of things…..
Even spent hours pondering why some people could continue to keep working even years after Parkinson’s while others can’t do so for very long after diagnosis?
I have often thought about this…
and wondered if I was alone ?

Given the fact that I had to give up my one true passion in life …medicine… not long after Parkinson’s diagnosis while others like astronaut Rich Clifford were able to continue to remain viable in their careers for years…
I remember while I trained with Dr. Jankovic hearing about the astronaut (who was his patient) still working despite Parkinson’s disease and wondering how that was possible with such stress and difficult job requiring much meticulousness and concentration. Frankly, his feats were always admirable.

Especially, in light of the fact that stress CAN and DOES exacerbate Parkinson symptoms. We know that stress increases adrenaline and adrenaline also known as epinephrine is the end result in the pathway where dopamine is a precursor…so if you are producing a lot of epinepine it means you are using up more dopamine on the starting end. Therefore, your Parkinson symptoms can come on faster and may lead to fatigue quicker.

Of course, everyone is unique as is their Parkinson’s and aside from the obvious physical impediments of dyskenesias…tremors will also increase with increase adrenaline rush. But, tremors do not necessarily have to interfere with ones activities since Parkinson’s tremors by definition are at rest. These are not present during action…in fact they go away with purposeful movements.
A few years back, I read that patients with Parkinson’s did best with activities that required repetition, or very methodical tasks. I thought about this a while. At first, it seemed to me to be contra intuitive because I thought this would fatigue the individual and the muscles but this is only the case for those of us who have dystonia (The problem is in the muscle not being able to relax). It turn out that in fact, doing repetitive movements or actions is very advantageous in any individuals especially in Parkinson’s patients because you essentially are putting your brain in auto pilot taking the thinking part out and essentially bypassing the “bad” circuitry (finding new way to do same activity with same desired outcome). An example, perhaps some of you are artists, musicians or even athletes by profession and I am sure that all of your instructors, coaches and teachers have taught you one thing or you might have discovered on your own that mental rehearsal of a shot, or playing piano or even painting can be as valuable or even more valuable than actually performing the function because in your mind you will ALWAYS DO IT FLAWLESSLY EACH AND EVERYTIME. So, that when you go to perform you can perform action automatically without thinking! You are bypassing that relay station….This is akin to tricking the brain to being able to walk NORMAL with marching music, or by holding someone’s hand, or visualizing stripes or even able to paint or sculpt flawlessly when you cant even tie your own shoes-fooling the brain and a finding new route!

So, if you do something for 120 hours a week…something over and over, you can do second nature without thinking…Parkinson’s disease and symptoms should not come into play much. The key is PERSISTANCE! Don’t get frustrated because you can’t tie your shoes for instance find a new way to do it and do it a thousand times if necessary until it becomes second nature. We can’t dress ourselves the way we use to…make modifications..
Same thing goes for our jobs, careers and life opportunities in general. If your job or life demands that you are always having to change focus, your brain can not officially adapt …it has new challenges…
so, what can we do?
Increase our meds to be able to cope with the needed increases of Dopa required for one; two, try to find an alternative way to perform your job where you don’t have constant variation…seek for repetitive, methodical positions- your brain will thank you!

The constant need for higher and higher doses of dopamine is reason, I finally realized why I found it difficult to function as a physician. In fact, most people I know that are (were) in the medical field are (were) not able to do so very long after their diagnoses….
I asked what could be the reason?….

While, I was in practiced I often explained to patients that just like their bodies were slow to respond to the brains commands (bradykenesia) so was the mind at times with PD finding it difficult to shift from one task to another because the connections were “slow.”
But, I never realized how utterly TRUE this REALLY was and how CRUCIAL this ability was to be able to be an effective and productive physician or any person working under life and death situations!
My neurological skills did not diminished ….what changed was my capacity to work under pressure and make quick decision one after another, and another on and on…nonstop!
My capacity to focus and pay attention to detail did not changed…in fact I think they enhanced but shifting gears quickly to different tasks at current levels of medication caused me a great deal of frustration.

My brain could not adapt to the constant bombardment of the unexpected. Sure doing an exam is rote …is what comes next…everyone is different…plus the constant interruptions from someone falling in waiting room or a call from the ER can cause the dopamine to be used even faster. Perhaps there is something to the theory that there appears to be a higher risk of PD among health professionals and one theory for this has been cited as the rapid aging of the basal ganglia induced by stress (i.e. the dopaminergic system). This compounded with some genetic predisposition may be triggering symptoms sooner than they would have if stress level was less severe?

Which leads me to the question. What can we do with this information..? Perhaps, we should first recognize the fact that multitasking is a lot more challenging with PD albeit not impossible as I stated above. We need to recognize that we can retrain our brains to do any and all activities. We just might have to put in some extra time doing so along with some creativity which fortunately most Parkinson’s patients seem to already be endowed with this either as part of the disease or as a consequence of medication. This process then needs to be carried over into education of doctors (health staff), employers, family and caregivers regarding this…

A person with a job requiring lots of multitasking may need to need up their meds or consider changing to accommodate their own individual unique skills to continue to be productive in society without exacerbating their illness as much.. also if they choose or have to continue to work in a stressful environment, I suggest asking for or allowing themselves some down time for dopamine levels to reboot… at least 5 minutes every hour to 2 hours- again your body and brain will thank you!
I, too had to make a choice… I could function just as consultant or lecturer with someone else doing all the dictating and note taking and call backs and no unexpected calls at 3 am with some one crashing in the ICU because for me to be able to function at the level I used it requires 3x the amount of medication I currently take…(to be able to keep up with dopamine demands being rapidly converted to adrenaline) the choice is do I stress my body, increase my side effects, increase my risk of dyskenesias to be able to continue to work as before or do I modify my life style? Find things that use my knowledge and expertise without exacerbating my symptoms or needing increase in meds and still be able to multi task because I am not over whelming my nervous system!
Finding a balance is also Key!

The choice is clearly an individual one….

But, you can still be an active member of society contributing with your talents as long as you and your caretakers have a clear sense of your capabilities and limitations. Explore your de novo artistic talents become an artist, writer, painter, the world has endless possibilities. A perfect example of a person with severe limitations which has not allowed his illness to defy him whom I greatly admire both as a person and as a scientist from an equal perspective of a neurologist and person with disability is Stephen Hawkins ….he has single handedly changed the face of science and physics forever despite being trapped in a body that no longer responds to a gifted and genius mind. We all can make a difference and have a destiny to fulfill… remember, “don’t just shoot for the sky because people have already landed on the moon!”
“Aim for the moon and even if you miss you will land among the stars!”

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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

Revisiting isolation an often overlooked topic in Parkinson’s : by Dr. De Leon

A month ago, I read that as the new year rung in several Parkinson’s patients chose to take their own life. I can only imagine the devastation one must feel to decide to go through with something like this….I was extremely saddened by these events ….wondering where the friends and family were and at what point does one loose all Hope?

So, I thought I would revisit the topic of stigma in PD that I touched upon a few months ago.

From my years of practice, I recall many patients becoming extremely more withdrawn from society due to the physical impediments like decrease mobility, excessive drooling, increase hypophonia ( low-soft voice ) causing individuals to become increasingly socially embarrassed. This reminded me of how PD can be both socially and emotionally isolating. A lot of people that I have met over the years have been afraid to say they had this illness fearing public scrutiny. So, they chose social isolation or minimal contact with others in potentially embarrassing or humiliating situations like dinner parties.
They were afraid of chocking, spilling food & drinks due to tremors or DYSKENESIAs.

People sometimes are afraid as being judged incompetent or drunk due to poor gait, slurred speech or questioning one’s handwriting each time due to micrographia or severe tremors.
What about struggling to get money or credit cards when they need to make a purchase or pay for dinner?

According, to Dr. Julio F Angulo: ” shame is embarrassment felt in private.”
So, no wonder our self esteem begins to erode if we do not surround ourselves with people that love us, support us, and understand our shortcomings…we live in constant dislike and loathing of ourselves and begin to hate and blame our condition and best way to get rid of this fear & shame is eliminate the culprit! Hence, there is an increase risk of suicide in Parkinson’s rarely ever talked about.

But, I say that this does not have to be the case…first of all we as individuals have to realize that all of us embarrass ourselves at one time or another whether ill or not. And that our biggest critic is our selves, other people don’t pay nearly as much attention to our faults and weakness as we might think…they are too busy worrying about their own faults, difficulties, challenges and own prejudices.

Although, is no doubt that having Parkinson’s presents daily opportunities for embarrassing situations, the negative feelings it conjures up should not be pushed down and suppressed but rather discussed with other Parkinson patients. But, primarily they should be discussed with ones own physician or healthcare provider. This needs to be done as soon as first negative feeling arises or sense of shame begins to take root or even when you notice a change in your behavior. For instance, although you might enjoy the company of others you might suddenly find yourself making excuses to avoid social situations.

Your doctor can help you find the right solution which involves a wide array of medical treatments like psychotherapy.
Antidepressants can also play a role in the treatment of these symptoms. Some methods which might be suggested include desensitization, thought stopping, role playing just to name a few.
But, although all these things can be helpful, the main thing that will keep someone from feeling sad, blue and at their wits end is friendship, love, connection to others like ourselves…and above all FAITH!

So, let us not forget to reach out to one another….

I leave you with these words of inspiration..
“dig deep.look within. it’s all there inside you.
Except sometimes…it is not.
Everybody has days when all
The digging deep only turns up mud.
And that’s when you hand over the shovel.
You reach out. You let somebody give you
What you can’t mine for yourself.”

WE ARE STRONGEST TOGETHER, HOLDING HANDS.
From BE Inspi(RED): words of hope and courage.

Raising children in the midst of Parkinson’s disease By Dr. De Leon

Raising children in the midst of Parkinson's disease By Dr. Maria De Leon

I have often said that being a neurologist was infinitesimally much easier than raising kids. Even in the toughest crises of life and death situations, I often felt much more at ease dealing with some of the complex issues of medicine /neurology than being a mom.

After all, I spent 12 years training to become a neurologist but only 9 months to have a baby in which a manual was not even included. All of you who have children know from experience that as soon as you figure something out, there is a new challenge or new stage and you have to move on and start the learning process all over again. ( much easier if you have more than one child I assume- can use learned experienced but then again every child IS VERY DIFFERENT and SAME RULES DON’T ALWAYS APPLY!)

Now, imagine you are a parent with a chronic illness like Parkinson’s in which your life is in constant flux then throw in the mix of having to rear another human being who is completely and solely dependent on you for ALL their needs when most days you can’t even take care of yourself…makes for a very interesting life to say the least!
What if you had a “special needs” child – you would have to be a magician to be able to juggle everything…just thinking about it wears me out!
I think I need a nap…
But, as more and more people like me and you are diagnosed with young onset Parkinson’s disease or even typical PD (since some of us are waiting longer to have children) this issue of how to raise children in the midst of Parkinson’s becomes an extremely crucial one!

Many questions come up?…..

Will I be around to see my child grow up?
Will I be able to partake in their activities?
Will I be able to have (more) children?
How do I tell my child I have PD & should I tell?
These are just a few of the many questions….

First, of all chances are that you will be able to see your child(ren) grow up since according to current medical thinking having Parkinson’s disease does not necessarily shorten life span especially if you start treatment early on and are followed by an MDS (Movement disorder specialist) or neurologist. Studies have shown better quality of life when treated by one of the latter..

Second, again because although there is No cure for Parkinson’s , there are a great deal of new therapies including medications and surgical procedures along with holistic methods like exercising , cycling, yoga etc. which may not only maintain function but improve allowing you needed flexibility to care for your little ones.

Thirdly, you should always tell them..
There are many books available nowadays to help guide your conversation with your loved ones whether they are 3 or teenager or even adults.

I was diagnosed with Parkinson’s when my daughter was 6 years old but before then my grandmother who also had PD lived with us…so my child has practically grown up with Parkinson’s disease since she was a toddler…

Here are a few things that I have learned through the years of raising my child and dealing with my own personal fight with PD. Perhaps some of my insights may be of help to some you who have children or grandchildren living with you.

The first thing, never underestimate your children’s intelligence no matter their age…they may not understand everything but they are smarter than you think and they will always get cues from you as to what’s going on….and if you are not upfront and explain to them at a level appropriate to their age they will be potentially traumatized, and forever worried about you…which may lead them to act out, get depressed, become overly anxious and clingy and if very young extremely protective which may in turn lead to separation anxiety. They may also develop night terrors or nightmares…and even become withdrawn or aggressive.

Be upfront with them…
Act out your symptoms with them make it a game if they are toddlers or under 7…talk about the ” wiggles” or the “shakes” or being taken over by a ” slow” bug. Tell them that with their assistance some of these symptoms can get better…walk faster if they hold your hand for instance.

Initially, since my daughter was only 3 when my grandmother died when I got diagnosed with PD she became very upset every time I left…come to find out that she was afraid of me dying because all she ever knew was that grandma had “Parkinson’s” and subsequently she went to heaven. So, when she heard me tell my husband I had Parkinson’s she assumed I would be dying soon as well…
I had to explain that grandma died because she had cancer and was elderly not because of the Parkinson’s and “mommy” was going to be around for a very LONG time -Yes! even until she went to college and got married!
I also explained I needed a little vacation from my work ( because me closing my office and letting go of my employees which were like family was very difficult for her too!) so that I could get better and spend ALL my time with her doing “mommy things” & Fun things…which she immediately embraced and asked I don’t return to work until she goes to college!

I said this was great, but I would need her help from time to time because sometimes I might just be too slow to get dressed or shaky to do her hair or carry her or put her shoes on but that did not mean I did not love her or want to do things for her and with her! I deputized her as Mommy’s ” little helper.” She was happy with that…
Now she had a role…and a mission
Encourage whatever creativity they might have….
she wanted to help me raise Parkinson’s awareness so she drew a tulip stating: ” I am not shaky, I am dancing!”
she Now Knows that mom may be slow in the feet (walking) but she is FAST in her HEAD! and even though I can’t keep rhythm or beat very well we can still dance together and make music together!

Encourage spirituality as well. Use this as a means to teach them values and importance of faith, helping others and having positive outlook in life always (Hope!). Our life is define not by what obstacles and challenges come our way but how we handle them….I reminder that is always important to have a dream and never give up no matter what …she likes story about Walt Disney who was rejected by 300 banks before he got a YES! when trying to build Disneyland.

But, the Most important thing in raising a child with any chronic illness is to maintain a sense of normalcy as much as possible in their life…your problems should not be their problems…they already worry …( tell them PD is NOT contagious and just because you have it DOES NOT mean they will too!) ….let them be children…allow them to participate in activities in and out of school, have friends over, teach them new things, spend time with them , show them unconditional love, find games that both you and they can play…if your down- a board game, coloring/drawing, guessing games ( especially funny if your voice is off, are dyskenetic or having bad tremors) ,cards (especially if you use cookies or alike to make things interesting), or dominoes.

if your having a good day go for a walk with them at park, ride bikes together (especially in tandem), or go for a swim…all of these activities will not only help you bond but will also help your PD as well.

Laugh at your symptoms and clumsiness together…( ask them to show you how they see you then ask them to tell you how they feel about you…you might just be amazed at what you might discover! After all, laughter is the best medicine…my daughter thinks of me as a silly, crazy, fun, smart, wild hair mom who sometimes just can’t get right…

Get them involved in your Parkinson’s projects or any other projects…my daughter and her Girl Scout troop planted tulips one year to raise awareness in our community…another time she made bracelets for me to distribute at one of my talks …to raise awareness…

Help them do their homework although it may be more difficult some days than others…. some days my brain simply cant do math so, she knows now when to ask help with that subject and when to stay away..
Play Wii together especially brain academy and balance games not only will you have loads of fun as you struggle and make complete fool of yourself but you will also be enhancing your neuro- connections and improving your PD symptoms ..I guarantee it!

Try to make their favorite foods when you are able to ask for their help…they will enjoy making a mess with you if your having bad day and will learn something when you are having good day either way they will have fun and appreciate the effort while building their self esteem.
They will know that PD or No PD they are number one!

Finally, even when they are teenagers or young adults -Don’t forget they still need you, miss you and need your attention in their lives..
So, DON’T let Parkinson’s RULE your life..is only a part of it …it does not define you …there is a life outside of PD…make it a grand one!

Remember, our children are our greatest assets!

What are some of your concerns?
What advise do some of you have ? feel free to share……

Here are some books which may help you as parents or grandparents broach the topic with your children ..Read them together…these are some of my daughter’s favorite books on PD (ages: toddlers to young teens):

” Who is pee dee? :Explaining Parkinson’s disease to a child” by Kay Mixon Jenkins ( http://www.whoispeedee.com)
“Monica, Mama, and the Ocotillo’s Leaves” by Adele P. Hensley ( http://www.thewordverve.com)
“I’ll hold your hand so you won’t fall: a child’s guide to Parkinson’s disease ” by Rasheda Ali (www.meritpublishing.com)

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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

Los Consejos de Belleza y Salud #2 : ¡ Pintate los labios y demuéstrale al Parkinson’s quien es jefe! Por Dra. De León

Al terminar un año más, quiero hacer inca pies a algo muy importante, personal y apegado al corazón como mujer, madre, paciente, doctora y activista del Parkinson al igual que sobreviviente de cáncer -¡ EL PODER FEMENINO!

Al principio del año empece este blog a escribir como manera de sobrellevar la carga de la enfermedad del Parkinson al igual que informar e instruir a otros especialmente a otras mujeres que se encuentran en la misma posición que yo luchando del diario con la enfermedad. Ellas como madres, hijas, esposas, pacientes, auxiliarías de aquellos que padecen del Parkinson también igual que yo tienen el poder y valor dentro de sí de vencer y sobrevivir esta enorme carga que se nos ha sido enclaustrada.

Pero lo mejor de todo, les quiero decir a todas mis lectoras que la energía positiva que fluye dentro de sí mismas es la que las hace fuertes y les da el poder para destruir los obstáculos que les presentan el Parkinson. En sus vidas ese poder nace del simple hecho de ser mujer.

Al comienzo del año les di consejos de como vestir atractivas a pesar de tener Parkinson y como sentirse femenina y “sexy” y sobre todo BELLA con todo y el Parkinson.

Durante el año, también escribí sobre estrategias de como mantener la cabeza sobre los hombros aún con el diagnóstico del Parkinson.

Hoy hemos vuelto al punto de partida de nuevo, invitando a todas mis lectoras que tomen sus lápices labiales o coloretes en cualquier color fabuloso que más les inspire…ya sea rojo o rosa…para mi siempre los colores fuertes son más atractivos y más poderosos!

Porque yo igual que la autora Suzy Toronto soy de la opinión que las mujeres más poderosas siempre lucen un buen lápiz labial. Cuando pienso en en las mujeres que más admiró y que han contribuido a mi vida y carrera al igual que a la gran causa del mundo ” ¡siempre antes de administrar a los enfermos, a los pobres, o a cambiar la faz del mundo y sus políticas …ellas siempre se han puesto sus lápiz labiales primero!”

“Este acto al parecer no significativo nos traslada a tiempos más simples cuando las mujeres demostraban sus capacidades, astucia, sabiduría, determinación, y enfoques en PRIMERO pintarse los labios y DESPUÉS conquistar el mundo empezando con la familia haciendo lo que era necesario, debido, y justo.”

Yo igualmente crecí ¡poniendo ( aplicando me ) el colorete o lápiz labial antes de cualquier otra actividad! Aunque fuera un rosa muy bajito…en ese tiempo ese era lo único que yo tenía …
Aún en el la escuela de medicina cuando no tenía tiempo de comer o de dormir siempre cargaba conmigo mi colorete ( lápiz labial)- mi arma secreta. Antes de entrar al quirófano o a atender un paciente antes de pasar a mejor vida, me lo ponía. El solo hecho de aplicármelo era como sí por magia de pronto una capa invisible me protegía y ” me daba poder y valor para enfrentar cualquier dilema u obstáculo a mi alrededor.”

Ahora, años después cuando padezco del Parkinson, el solo hecho de ponerme el colorete o pintarme los labios significa para mi sentirme ” normal” y que todavía tengo fuerzas,coraje, y valor para hacerle cara al mundo. Este acto me ayuda a desafiar al Parkinson’s a la veces sintiéndome femenina, atractiva, poderosa aunque aveces este pequeño acto sea lo único que logre en el día como acción de control de motor.

El lápiz labial ayuda a enfrentar las aventuras, obstáculos, y me da fuerzas para seguir combatiendo en el mundo de incertidumbre del Parkinson’s.

Antes de ponerme mis calzones de “niña grande” me aplico mi color favorito (rojo) que resalté mi ” look” de diva .

Para ustedes mis lectores, no tienen que aplicarse un colorete o lápiz labial para sentirse poderosas puede ser cualquier cosa que las haga sentir bien.
Pueden ser unos zapatos favoritos de mucho color, unos tenis confortables los cuales les provoquén ir a correr, una camiseta suave la cual les ayudé a pintar y a expresarse con todos los colores del arco iris .

En resume, cualquier cosa que les inspiré a seguir siendo madres, hijas, esposas, pacientes, activistas y auxiliarías del Parkinson eso hagan del diario para que sus vidas y su viaje sea extraordinario y su canto cambie su mundo al su alrededor.

Health & Beauty tip # 30 : Put on some lipstick & show Parkinson’s who’s Boss? By Dr. De Leon

As we draw near to another years end, I want to write about something near and dear to me as a woman, mother, cancer survivor, Parkinson patient/ doctor and advocate!
Female power!
I began this blog, as away of coping with this illness and also as a way to show women everywhere who struggle with this illness in their daily lives as patients, wives, mothers, daughters, caregivers -that they TOO had the power within themselves to beat anything that is thrusted their way.
But best of all, I want to stress to my readers that the positive energy that empowers them to be able to crush Parkinson’s comes from the fact that we are women.

I started writing about dressing shabby chic despite Parkinson’s and feeling sexy and beautiful in spite of having a chronic neurological disease like Parkinson’s ….in between I wrote about many coping skill strategies in dealing with the diagnosis.
Today, we have come full circle.
I am asking my readers to keep their lipstick handy! In whatever shade they prefer….personally a red or pink will do!

Because like Suzy Toronto, I too, when I think about the women I admire and have made a big difference in my life and in the world….”before they ministered to the sick, the poor, or changed the face of politics… They put on their lipstick first!”
“This small act throws us back to a much simpler time when women showed their determination & focus by placing on lipstick and then going out to the world and doing what needed to be done.”

I grew up always PUTTING on some lipstick even if it was a very light shade of pink before tackling any job…even while in medical school when I had no time to eat or sleep …I would grab my only make up at the time…my ever trusted lipstick which I always carried with me no matter what…and apply on the way to operating room or to visit a dying patient ..”as if it would magically give me the strength and willpower to tackle whatever challenge stood my way.” Now, as I live with my PD diagnosis putting on some lipstick not only helps me feel “normal” but like I can still tackle the world! This shear act makes me feel pretty and feminine even if that’s the only thing I managed to accomplish during the day that required any fine motor skills!….

Lipstick helps me face the day’s adventures, challenges, and strength to dive into the daily world of Parkinson’s. Before I put on my big girl panties, I start with a “fresh face and a gorgeous shade of (red)” to go with my shabby chic diva look!

For you, my readers it may not have to be a lipstick…it can be anything that makes You feel good and empowered ….like riding your favorite bike, putting on your favorite tennis shoes to go for a run, putting a comfy shirt to inspire you to paint with all the colors of the rainbow, or wearing a pair of favorite shoes ( red or any other color that inspires you!). In short, whatever it is that empowers you and helps you tackle the world head on, allows you to take care of yourself and your loved ones, be a better mother, spouse, sister, daughter, Parkinson’s advocate…make it a part of your daily routine for the whole of next year and every year!
Use what works to get your female power flowing to change the world around you and make living with Parkinson’s disease an amazing ride!

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

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