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

Health & Beauty Tip # 26: Parkinson’s & driving- when is it time to call it quits? By Dr. De Leon

Health & Beauty Tip # 26:  Parkinson's & driving- when is it time to call it quits? By Dr. De Leon

Drive carefully! Remember, it’s not only a car that can be recalled by it’s maker.”
– Anonymous

“Why is it that you always say go faster when we are driving but slow down when we are walking?” ponders my husband, frequently, out loud…..

Although, I did not get my drivers license until my mid-twenties and in fact purchased my first car without one ……
Once, I hit the roads of Houston…I never looked back…nothing like the freedom of driving in an open road pushing the speed …. and even now with my illness my greatest joy is driving; makes me feel normal! I can control how fast I can go unlike my walking…which seems to have a mind of its own!

In this country, driving is not only a rite of passage into adulthood but also a sign of independence and freedom….
So, its no wonder we react so violently and negatively to anyone threatening to take this right and privilege away….we feel as if our own independence and livelihood are being challenged.

As, a young healthy physician, who could do whatever and when ever, I did not quite grasp the impact of asking my patients to give up their licenses voluntarily or even worst forced to surrender….
My naïveté cost me a few patients in the beginning…even though they were completely unsafe to drive and it was my duty and professional responsibility to look out for their well being….

I soon realized that it was best to put responsibility back on their hands by challenging them to prove to themselves and the state of Texas they were competent and save drivers…. they could take a course with occupational therapist or retake their driving test administered by the DPS -Department of Public Safety….this way the family felt better if DPS said ok or not ok and so did patients….
Further, we spoke of “retiring” from driving as you would from a job, etc. This, I believe made it easier psychologically in as far it became another “milestone” in life for an individual to pass through.

Certainly, the consequences of giving up the freedom of being behind the wheel cannot be totally dismissed from both a psychological and practical view.
This is true at any age …. whether you have been driving for 10 or 50 years….

I recall when I was first diagnosed with my PD and battling cancer…
I was unable to drive for nearly a year due to medicines side effects and weakness….it was like being a prisoner although my friends were excellent at taking me places. But loosing my independence made me feel like a real invalid having to depend on others for basic things picking up my daughter from school and going to the store for house hold supplies even going to the doctor…the fear and panic intensified as my driver’s license renewal approached and I was still very weak. Fortunately, I was able to keep going because I and my doctor’s knew this was a temporary condition…

However, the decision to give up or maintain a license is not always clear cut…there are a number of factors to consider…
The Parkinson’s Disease Foundation (PDF) put it best in an excellent article they published on the subject, a year or so ago, about the 4C’s to consider and discuss with your physician regarding driving safety.
These are as follow:
Concern about safety- if you or your family is worried about your driving skills.
Condition– are you end stage, unable to turn head and neck, unable to quickly apply breaks, or falling asleep at lights or extremely tired and fatigued and sleepy through out the day.
Crashes-if you had a fender bender or accident caused by you or caused other people to have accident or multiple fender benders and near crashes.
Co-morbidities– if you have severe dementia or cognitive impairments, or other medical problems making driving unsafe like weakness, or sleep disorders.
Then it is time to talk with your physician if he or she have not already done so. (for more information on the subject, visit PDF website under driving recommendations and 4C’S-www.pdf.org).

The majority of PD patients can operate a vehicle safely until it is inevitable with the passing of time and advancing of disease that many patients reach an impasse in which driving is no longer safe….

However, you must know that not only are you liable for any injuries to others on the road if you are not safe but so is your physician if he/she fails to inform you or advise you on the risk of impaired driving performance.

Furthermore, some states like Pennsylvania are implementing mandatory reporting of impaired ability to operate a car or motorized vehicle. Your permission will be asked but keep in mind that if you refuse and doctor feels you are a threat , the physicians responsibility to protect you and others supersedes any HIPAA rules and supports breach of patient confidentiality.

Stay inform and know your rights…

The American Medical Association (AMA) offers a state -by -state summary in a section of its website (www.ama-assn.org) which is also devoted to counseling patients about driving. They also provide a patient self screening tool which may be helpful for Parkinson’s patients to recognize their deficiencies and increase the willingness of the person with PD to formally consider driving assessments. Further, it also provides individuals a test battery called the Assessment of Driving Related Skills which can help the doctor obtain some objective information but in the end the best measure of safety driving is what I recommended my patients – a formal assessment of driving skills with a simulator or in a controlled testing scenario.
Finally, they have a downloadable handout called “Getting by Without Driving.”
The National Parkinson Foundation maintains a similar list.
Together, patients, family, care givers and health professionals MUST work in unison to find solutions for those that have depended on a car for activities of daily living like grocery shopping, going to the post office, going to work etc.
It will certainly entail a substantial adjustment on everyone’s part especially for the patient which might include new living arrangements.
However, given the consequences of driving impaired although extremely difficult and heart wrenching for some, relinquishing your license is NOT an OPTION if PERFORMANCE is IMPAIRED!

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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

Health & Beauty tip # 23 :Things to know when doing a sleep study By Dr. De Leon

Health & Beauty tip #    :Things to know when doing a sleep study By Dr. De Leon

To Sleep perchance to dream“- William Shakespeare, Hamlet

Equipment not working…..wondering from room to room ..finally getting started at close to 2 a.m.
Have to repeat!!!what?!
Fortunately, second time around a whole lot better…but not happy had to redo….

Sleep study! Wow what an ordeal?

I have ordered over a hundred sleep studies in my career as a professional and I had an EEG done as resident as part of my training ( so I KNOW how messy and sticky your hair can get especially if you have as much hair as I do!).
But, I never had to undergo a sleep study myself… of course I was aware of what it entailed….
One thing is to have KNOWLEDGE of something another is to EXPERIENCE it yourself….it was not until the time I volunteered for a research study in Parkinson’s whose primary objective is understanding sleep disorders in said disease- Parkinson’s.
but I was ready so, I thought…

As I was preparing, I remembered that you must avoid all sleeping aids including antiaxiolytic medications known as benzodiazepines which include meds like Klonopin ( clonazepam), Valium ( diazepam ), Xanax ( alprazolam ) etc. for at least 3 days prior to study better if its a week. Because the effect of these meds can change the findings of the brain recording (EEG). Also, avoid caffeinated drinks and alcohol for at least 24 hours prior to study. These too can alter the brain waves…

The doctors and techs will usually give you a very comprehensive list of DO’s & Don’ts!
Take it seriously to obtain best results!

If you can, avoid taking a nap the day of the sleep test so you can sleep …because remember you will have wires everywhere on your face, head, arms, legs, breathing monitor, oxygen tube, heart monitor and these compounded with fact you are in strange place being recorded can be very anxious provoking! Just simply go about your night time routine! Bring a book to read or watch T.V. until they tell you is time to turn off lights -usually around 9 p.m.

Make sure you bring your favorite comfortable sleep ware and pillow if you like and a loved for moral support if you must!. He or she can accompany you and sleep in next room over.
If you are one that has to frequent the bathroom during night time avoid any beverages after 5 p.m. and also ask for a room with own private bathroom so if you DO have to Go it will be less disruptive to you and others..since each time you have to go you MUSt be disconnected and recording stopped!

This, unfortunately, is what happened to me the first go around….
After spending an hour getting hooked up…finally allowed to return to room but since I had been at doctor all day with study I had been off meds most of the day so by time I took before bed I had severe nausea and could not lay down without feeling like I was about to throw up – I had forgotten my nausea pill! ( Make sure YOU BRING ALL your meds with you even if you don’t usually take in the evening just in case!
Finally, stomach settling already past my bed time per their protocol. I went to bathroom before bed got set up which took at least 30 minutes. Then, lo and behold not even a couple of hours later, I had to go again…I held as long as I could because I knew I would have to be unplugged…but difficult to sleep when you have an urge…so, I gave in…well, little did I know that this action set a whole wreck ball in motion!

Once, I returned to my bed the switching back on was no longer a simple matter….the sleep techs began the process of connecting me but there seem to be a malfunction in the equipment! Oh, NO!

They stripped me of all belts etc. and put NEW oNEs in the dark with a small flash light trying to not arouse me! But connections were determined to cause problems- no input…of course with each attempt I kept getting more and more awake …initially they tried to do in the dark as to not wake or rid of my sleepiness but that only caused more fumbling and frustration on the part of techs. With each failed attempt, I could only chuckle inside knowing full well this was the Karma of being a neurologist! But secretly prayed they could make things work for the sake of their own jobs! Knowing their frustration was mounting, I gave permission for them to turn lights on to try to expedite process and lessen irritation hoping to sleep soon and NOT HAVE TO RETURN – alas it was not to be…they then switched EEG board still no input!
Next, I was moved to another suite with different bed…still interference!
2 a.m. nearly on to third room ( felt something like ‘ Goldie Locks) finally Eureka things were working …I dared not move a muscle to avoid irritating the forces that be and Prayed earnestly that I would NOT HAVE To POTTY AGAIN!

I was up by 5am when recording is scheduled to stop but obviously I spent more than half the night playing musical beds…so I would have inconclusive data and therefore had to repeat the blessed ordeal!….

Thus, You can imagine my great trepidation of having to repeat the whole ordeal.
I was very reluctant to repeat because what if they actually found something…I MIGHT have to COME BACK a THIRD time!

But, then I laughed and thought about Karma, AGAIN!.. They say that doctors make the worst patients and have the most complications …well this seemed to be holding true to dogma. Could not argue with it!

But, before you get all panicked by my story and refuse to ever have one done…REMEMBER, I am a rare case..
and I am used to having things happen …as I said Doctor’s Karma so I am used to it…
this rarely occurs but you should nevertheless be prepared for possible delays and mild inconveniences as to avoid increase of blood pressure, anxiety or getting overly upset! take deep breaths and laugh it off if similar things should ever happen to you….

The second (sleep study) go around…
guess the techs knew I might be ‘ difficult’ so I was given a suite with my own bathroom and this time the EEG leads ( head wires) were mounted on track that could be easily disconnected as a whole and carry with me without having to manually switch each individual lead to another track.
I was pleased to see that they had learned from situation.
Life was so much sweeter! Thank goodness because try as I might to not have to go to bathroom in middle of night, I still had to be unplugged at least once…..

My advice:
Take your other medications as you would normally ..
Maintain a sleep diary before you come to study and fill out questionnaire of activities, sleepiness, medications, medical issues and night time problems like cramps in legs, frequent urination, trouble staying awake or asleep…etc.
Do Not schedule other activities or doctors appointments same day…may get you off your game being overly tired or stressed!
Also bring warm clothes or blanket if you are cold natured because they don’t want leads falling so they keep rooms very cold or fans blowing!
Tell them if you need assistance with dressing, bathing, going to restroom, or difficulty turning in bed or have increase risk for falling…to avoid any mishaps especially since you will be covered in wires…

Also if you are allergic to adhesive let them know…although I believe most centers use baby adhesive so not to cause irritation.
Also, most centers will give you baby shampoo to wash your hair off from all the goo placed for brain wave recording…but just incase bring some BABY Shampoo ( it is the best thing to get that jell out of your hair even when you have bunches of hair like me!)
If someone does not go with you, consider having someone drop you off and pick you up next morning in case you do not sleep well and are sleep deprived …would not want you getting into an accident!

I, also, highly recommend that every Parkinson’s patients talks to their doctor about getting a sleep study because so many of us suffer from sleep disorders caused by Parkinson’s disease. This can be an intrinsic part just like tremors or stiffness but is a non-motor abnormality. Treating sleep disorders is vital because they can lead to increase memory loss, fatigue, pain, increase dizziness, headaches, high blood pressure and falls if not diagnosed properly or in a timely matter. Hence, need for sleep monitoring!

After all sleep disorders is one of the most common non motor symptoms in Parkinson which can cause severe disruptions in a persons life but fortunately can also be treated with good success most of the time if problem is adequately and promptly diagnosed.

Sleep is even more crucial than we thought since according to a recent new study published in Science …it appears that sleeps helps the brain eliminate waste which is a critical function in maintaining metabolic homeostasis ( equilibrium by getting rid of trash like beta amyloid proteins that accumulate during wakeful hours and are believed to be the cause for many NEURODEGANERATIVE diseases like Parkinson’s and Alzheimer’s ).

Good luck and happy dreams!

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To learn more about the function of sleep in eliminating waste from brain go to-
Xie L, et al. ” Sleep drives metabolite clearance from the adult brain.” Science 2013; 342:373-377.

Dr. M. De Leon is a retired movement disorder specialist, 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

GLOSSARY/DICCIONARIO: Parkinson’s Word Terminology to be aquinted with ( Vocabulario de terminologias relacionado con el Parkinson) By Dr. De Leon

GLOSSARY/DICCIONARIO:  Parkinson's Word Terminology to be aquinted with ( Vocabulario de terminologias relacionado con el Parkinson) By Dr. De Leon

Bradykenesia – Greek term that means “slow movement” – it is one of the cardinal features of PD. Termino Griego que significa “movimientos lentos”- uno de los síntomas principales del Parkinson.

Cogwheel Rigidity -tension in a muscle that gives way in little jerks when it is passively stretched -one of the cardinal features of PD.
Tensión en los músculos que se suelta o relaja en pequeños jalones cuando los músculos son estirados en forma pasiva- uno de los principales sintomas del Parkinson.

Dyskenesia– Greek for difficulty in movement, impairment in the ability to control movements resulting in fragmented or jerky movements.
Termino Griego que significa dificultad de movimientos, incapacidad en el control de los movimientos que resulta en movimientos fragmentados y jalados.
Dose -related side effects( 3types):
Efectos relacionados con la dosis ( 3 tipos):
1. Peak dose dyskenesia:
Occur 20 to 90 minutes after taking medications (almost 75% of patients have them after 6 years of treatment), in young patients because of high doses symptoms may occur before end of first year!
Esto ocurre de20 a 90 minutos después de tomar la dopamina ( 75% de los pacientes experimentan esto después de 6 años de tratamiento), en pacientes jóvenes a causa de dosis grandes de medicamentos, los síntomas pueden ocurrir antes del fin del primer año.

2. End -of – dose wearing off phenomena-effect of medication does not last from dose to dose. This is more common in patients with long term therapy- correlated to low plasma concentrations of L-dopa and some may be due to interference of protein diet in absorption of medication.
El efecto del medicamento no suele a durar entre dosis y dosis. Esto sucede mas común en pacientes que han estado con tratamiento por largo tiempo- este efecto esta relacionado con concentraciones bajas del medicamento l-Dopa en el plasma y algunas causas pueden ser contribuidas al mal absorbimiento por causa de la proteína en la dieta.

3. Biphasic dose response-this is a phenomena where some patients experience dyskenesias of brief duration shortly after taking medication( especially first am dose) which resolves only to be followed by onset of spasms and severe dystonia especially in lower extremities 1 to 2 hours later.
Este es el fenómeno en el cual algunos pacientes experimentan las dyskenisias de breve duración breve tiempo después de tomar el medicamento( especialmente la primer dosis de la mañana) pero estos mismos suelen a experimentar espasmos y dystonia severas especialmente en las piernas una dos horas después.

Dose -unrelated side effects :
Efectos no relacionados con la dosis de medicina

1. On-off phenomena
El fenómeno de “prende y apaga”
Occurs in 50% of patients that have been treated for 5 years or longer. These episodes consists of periods of unpredictable severe akinesia, hypotonia, and apprehension( anxiety) of very rapid onset and termination, which last from 30 minutes to few hours and is unrelieved by further L-dopa dosing.
Esto ocurre en el 50% que han recibido tratamiento por mas de 5 años o mas. Estos episodios consisten de periodos que son impredecibles con severa hipotonia, akinesia, y ansiedad, empieza rápido y termina igualmente por lo general 30 minutos a algunas horas y no re alivia o compone al tomar mas medicina de L-Dopa.

Dystonia-involuntary sustained contraction of muscles with increase muscle tone and resulting in abnormal posturing of muscles affected.
Contracciones involuntarias de los músculos que perduran y tienen tono hiperactivo que resulta en posiciones anormales en los músculos afectados.

Hypophonia– soft Voice/ speech resulting from lack of coordination of vocal coordination.
Voz o habla de manera callada a consecuencia de falta de coordinación de las cuerdas vocals.

Hypomimia– loss or impairment of facial expression.
Perdida o dificultades para expresar movimientos faciales.

Micrographia -abnormally small, cramped handwriting and/or the progression to continually small handwriting.
Escritura anormalmente pequeña o con espasmos o calambres y también constituye la tendencia al progreso continuo de la escritura hacia un nivel mas pequeño y espasmódico.

Motor symptoms– the 4 main cardinal symptoms ( slow movements, stiffness, loss of balance, and rest tremors) are collectively referred to as motor symptoms which make up ” Parkinsonism or the parkinsonian syndrome- these are caused by loss of dopamine in the basal ganglia.
Síntomas motores – los 4 síntomas básicos ( lentitud de movimientos, perdida de balance, rigidez muscular, y temblores) esto colectivamente son conocidos como los síntomas motores que forman parte del cuadro clínico del “parkinsonismo o el síndrome del Parkinson”-estos son el resultado de la perdida de la dopamina en el área del basal ganglia.

Non- motor symptoms– non dopamine symptoms
Síntomas no- motores – síntomas producidos por células no producentes de dopamina.
Like RLS, constipation, loss of smell, hypotension, depression, anxiety, sexual dysfunction, Hallucinations, bladder disorders, and psychosis.
Algunos de estos síntomas son constipación, hipotensión,depresión, ansiedad, halucinaciones,psicosis, problemas de la vejiga ( como incontinencia, frequencia), perdida de olfato, desordenes de sueño.

Postural instability-loss of balance that causes someone to feel unsteady due to loss of postural reflexes – also a cardinal feature of PD.
Instabilidad de postura- perdida de balance que produce desequilibrio a causa de perdida de los reflejos de postura- este también es uno de los síntomas principales del Parkinson.

Rest tremors– an involuntary coarse rhythmic tremor or quivering that consists of 3-5 hertz usually confined to the upper limbs of hands and forearms, present when arms are (relaxed) stretched at rest and disappear with activity or limbs become active. – this is one of the 4 main cardinal features of PD-also described as “pill rolling.”
Temblores rítmicos y crudos e involuntarios que consisten de 3-5hertz. Por lo general estos temblores son mas comunes en las extremidades próximas como las manos…son presentes solo cuando los brazos son relajados inactivos pero desaparecen completamente al instante que las extremidades son movidas voluntariamente. Este es uno de los síntomas principales del Parkinson.

Rigidity– inflexibility or stiffness due to increase muscle tone.
Inflexibilidad o rigidez en el la consistencia de los músculos o en el tono (fuerza) muscular.

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Dr. M. De Leon is a retired movement disorder specialist, PPAC member and research advocate for PDF; 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.alz.org, http://www.aan.org, http://www.defeatparkinsons.blogspot.com
may also contact me at
deleonenterprises3@yahoo.com

Health & Beauty tip # 21: Life after Parkinson’s- by Dr. De Leon

Health & Beauty tip #          Life after Parkinson's- by Dr. De Leon

Is there Life after Parkinson’s?

Many would argue and answer in the negative while others hold reservation inclined to a more optimistic attitude….

I would say a resounding YES!….There CAN be a GREAT LIFE after Parkinson’s…
just look at Michael J. Fox ….he has been up and down ( now I feel like breaking into chorus like Sinatra) but I digress….he is starting in a brand new T.V. show which debuted a couple of weeks ago in which he is the main star playing a man living with Parkinson’s Disease (PD).
After many trials and tribulations even in the face of continued dyskenesias, he has found his niche again……

I myself have not always had an easy time of it in the last 8 years since my diagnosis. I have had to face many challenges of my own and at times simply felt like giving up but despite all the heartache and personal losses in the end the uphill battle has been worth the climb!

In thinking about the life with PD, I am reminded of the dry bones in the desert into which God breathe life into ….surely we are not to that stage yet, so there must be hope …

Yet, all us have been confronted with the stark reality ….this IS OUR LIFE and IT WILL ONLY GET WORST (PHYSICALLY)..which BELIEVE ME ……even for an ETERNAL Optimist such as myself …this is ONE BIG MASSIVE HORSE PILL to SWALLOW!!!!

I can certainly understand why some people feel like they have been handed a “life sentence” when given this disease diagnosis. I, as a neurologist and Parkinson’s specialist, have witnessed all the varying stages of this devastating illness from early diagnosis to patients finally succumbing to this diseases having battled it for years with courage, great dignity and equal bravery.

when I think of these wonderful people whom I had the honor and privilege to care for I get sad, begin to bargain, but refuse to get mad……so I feel like I am drowning …….BUT maybe we do NEED to get MAD…..and fight …back with even greater force…we don’t have to take it….we don’t have to be passive….there are things we can do for ourselves and others….but we first have to learn to LET GO of the pAST (something which I have had a very hard time doing until very recently) ….we as individuals are meant to grow and change and evolve…so why cant I move on? I guess is stubbornness, denial, vanity, not accepting that I too need help ….we are not islands to ourselves…we do not live in isolation…..the body functions with the help of many members with different functions …yet they are equally important…one CANNOT function without the other! We need each other as support …

Now my chronic illnesses (PD) has put me in position to be dependent on others at times but it has also allowed me to become a better human being a better person, wife, mother and friend! I can appreciate my patients humanity and makes me want to fight the stigma of PD with which so many people live with even more.

The other day as I was sitting at a football game watching my daughter perform in the band, I saw a beautiful rainbow in the sky …which reminded me that ” you can’t have rainbows without storms” yes, my life has been one HUGE storm lately but I have seen and experienced many wonderful things along the way that had I NOT been diagnosed with Parkinson’s and forced to look for plan B and give up my solo practice…I would have missed out entirely….like going to my daughter’s concerts at school, and learning to be a better mom- my daughter said the other day…’ your cooking has gotten so much better since you stopped working! I am so glad you are home more now!” these are the real treasures in life ….that along with all the wonderful and extraordinary people I have gotten to meet along the journey have deeply impacted and enriched my life forever in a way that perhaps would not have been possible with my previous duties and responsibilities even if it was my desire to connect more with others (outside of my practice and immediate circle of friends and colleagues)….

As dumbfounded and somewhat apprehensive about my future (knowing all the intricacies of the disease first hand) as I was, it was liberating to know I had a chance to do something new with my life! This was the opportunity of a life time…how often do we get a chance to start over? Until now, I had always known or had an inkling of what I was going to do the next day and the day after. But, now the pages were blank….it was up to me to decide if I was going to panic, be paralyzed and consumed by this illness or pray and be empowered by it and continue pursuing my passion in different ways outside of my traditional role as a neurologist. Parkinson’s has allowed me to express myself more creatively through my writing and has thought me to laugh and find joy in everything no matter what. Life is sweeter this way and makes the hard times easier to endure.

So, where ever this disease finds you today whether still gripping with the shock of a new unexpected diagnosis or you are cruising life as a pro or battling the problems that come with end-stage disease, I encourage everyone to embrace the odyssey of becoming more human, more empathetic, more able to relate and anticipate the great need of others (like ourselves).
And in a hostile world where things don’t always go our way and terrible things do happen to good people…despite your limitations and failures shout as the poet and author W.H.Auden once wrote : “let the more loving one be me!” (The More Loving One) and in the process all those new found relationships will deepen your reason for being and help to discover goodness and contribute to its beauty by the works of art, music, poetry and other writings you all create by virtue of having Parkinson’s.

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Dr. M. De Leon is a retired movement disorder specialist, PPAC member and research advocate for PDF; 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.alz.org, http://www.aan.org, http://www.defeatparkinsons.blogspot.com
may also contact me at
deleonenterprises3@yahoo.com

Health & Beauty Tips # 20 : Tools & Gadgets to Make LiVing with Parkinson’s Easier!- By Dr. De Leon

Health & Beauty Tips # 20 Tools & Gadgets to Make  LiVing with Parkinson's Easier!- By Dr. De Leon

I am sure you all have experienced the frustration of doing a simple chore like breaking an egg for breakfast and 30 minutes later after having to wipe off counters and floors because you accidentally shattered the egg in your hand because of the rest or action tremors…or egg went flying off your hand onto the floor due to same….
Sometimes, they simply roll off the counter, but you are simply to slow to catch before they reach the ground.

Or the other day, when my biggest accomplishment for the day was sewing a pair of my daughter’s favorite cozy socks. I could not thread the needle due to poor fine motor skills and then attempted to use one of those needles with open top which makes threading easier but due to tremors and dystonia …I was unable to make more than couple of stitches because I kept unwillingly pulling the thread out!
So, frustrating…funny part was that my husband saw my desperation and thought he would come to my rescue….but, alas, to my surprise, he too was unable to thread needle!
Triumph at last….35 minutes later…I had sewn the darn socks and I was UTTERLY worn out! But feeling so very proud of my victory over the needle and thread…ha
Afterwards, I thought to myself, there MUST be a better way.
I already have been collecting gadgets to kelp make life easier…
So, I thought I would research what is best way to thread needle for people like me…
And I would share my findings

First, no kitchen should be without a “gripper” ….we have all found ourselves being unable to open even the smallest jar…of anything….due to our Parkinson’s.
when I was practicing, I had gotten some samples of rubber grippers that were distributed by (Novartis Pharma makers of Stalevo). When I closed my practice I found one which I had not given away to my patients and since at that time I was caring for my grandma who had PD, I brought home.
Well, shortly after she passed away, I noticed increasing difficulty opening even water bottles and this little gadget has come in handy …. I use daily!
Get one by calling Novartis or on line I found grippers to open jars just like the one I have for as low as $3.99. You don’t need anything more expensive or fancier.
These can open bottles, jars and pill bottles!
To avoid making a mess in the kitchen with eggs or having to fish out she’ll from your scrambled eggs or have to eat crunchy eggs..invest in an egg craker…two I have found on amazon…the egg craker separator only $2.99 and the one I recommend or the egg craker for $4.99

You can find needle threaders at Walmart or any Hobby Lobby or arts and crafts or sewing places…again you can mind a wooden or metal ones…I like the metal…but I think the wooden ones may have better grip…and less likely to slip and easier to see…prices dance from $1.50 to 17. I again will not spend more than $5.00

Second, I know that eating can sometimes be more than a challenge….for instance I love seafood and realize that I have increasingly more difficulty eating shellfish like crabs and lobsters….especially when very rigid and slow ….good luck ….I have to engage the help of my family…..
Sometimes using forks can be a challenge especially if very shaky -unless you stab your food! …spoon maybe the best alternative….but as we all know eating soup can also be very challenging because of tremors especially the action tremors ( those that come on or get worst with movement as opposed to rest tremors). The best solution in this case is using a spoon with a long handle. These can be extremely helpful. You can either have your occupational therapist make you one or again can shop for long handle spoons….range varies widely from $10 up to $120.00.
Another way you can dampen the tremors is by buying small wrist weights 1/2 pound to a pound and strapping on at time of feeding. You Can buy these at places like Academy. This latter can also help you drink better without spilling. But if severe tremors and weights are not enough consider use of cups with lids!

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you can follow me on twitter at defeatparkinsons@DrmariaDe

Dr. M. De Leon is a retired movement disorder specialist, PPAC member and research advocate for PDF; 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.alz.org, http://www.aan.org, http://www.defeatparkinsons.blogspot.com
may also contact me at
deleonenterprises3@yahoo.com

Health & Beauty tip # 18: 10 Common Drugs to Worsen Memory! By Dr. De Leon

Health & Beauty tip #  10 Common Drugs to Worsen Memory! By Dr. De Leon

Since September is known as Alzheimer’s month and the East Texas Chapter of Alzheimer’s along with the participation of the Nacogdoches Pilot Club will be kicking off another walk-a-thon to END Alzheimer’s in just a few weeks…. I thought it might be good idea to discuss some of the commonly prescribed medications that can lead to or possibly worsen memory loss mimicking Alzheimer’s:

After all memory loss could be caused by none other than the medications in your drug cabinet rather than your AGE!
Since according to one publication over 90% of people over the age of 65 take at least ONE medication more than any other age group and usually several medications which are likely to interact with one another increasing the risk of memory loss due to drug reactions.

New studies have revealed a direct correlation between commonly prescribed and over the counter medications used to treat anxiety, insomnia, itching or allergies or colds and loss of concentration and poor memory particularly in the elderly population. More important is the fact that the effect of these medications maybe overlooked in an otherwise healthy individual!
Here is a list of commonly used drugs which could mimic Alzheimer’s …… common factor is that MOST block the activity of the chemical CHOLINE –crucial chemical in making memories and learning!

Therefore, if any one is taking drugs in any of these categories and are experiencing PROBLEMS with Memory make sure to consult a physician ASAP……

1) Statin (cholesterol) medications- These are drugs used to lower cholesterol like Lipitor….The brain contains a quarter of the body’s cholesterol, and lipids (fats) are crucial to the connection between nerve cells. According to study published in a journal of pharmacotherapy in 2009 3/4 people using these drugs experience some type of cognitive decline. 90% of patients who stopped therapy reported improved cognition within days!

2) Anti-anxiety medications – in the class of benzodiazepines…medications like Valium, Xanax, Klonopin….all of these drugs are metabolized (broken down in the liver) but, as we age our metabolism takes longer and it is slower therefore the effects of the medications linger on for a longer period of time and varies from person to person. The elderly take longer to metabolize which can lead to more interactions if taking other medications as well…dulling the senses.

3) Anti-seizure medications- all drugs that depress signal of central nervous system can potentially cause memory loss! (e.g. Topamax, Tegretol..)

4) Antihistamine (allergy) medications- this class includes medicines like Benadryl. They are also used to relieve nausea, dizziness, motion sickness as well as colds and allergies. These medications block cholinergic activity which is crucial for memory and learning!

5) Antidepressant medications- especially the older antidepressants in the class of tri-cyclic example of this is elavil (amitryptiline)-these cause memory loss by blocking action of a chemical called serotonin ( important in mood and sleep) and norepinephrine.

6) Parkinson’s medications- the dopamine system which is what a lot of these drugs target is involved in motivation, pleasure- seeking behavior, fine motor control, cognition and memory , & learning. Therefore any disruption to this system can alter our perception of the world impacting learning which is then directly encoded into our permanent memory banks. Other Parkinson drugs work on the cholinergic and glutamate system same systems that are believed to be disrupted in Alzheimer’s therefore causing great memory disturbances. (especially medications like ARTANE, AMANTADINE & COGENTIN)

7) Pain pills-class of opioids/ narcotics – these hamper the signal to flow of pain and blunt emotional reaction to pain…both of these reactions are mediated by chemical messengers that are involved in various aspects of cognition so they can with interfere with both long and short -term memory.

8) Sleeping aids- these also work on chemical messengers like pain pills therefore interfering with memory processing and have similar problems with withdrawal and addiction.

9) Incontinence (bladder) medications- In the brain these medications block cholinergic activity which is crucial for memory and learning!

10) Hypertension medications (blood pressure)-interfere with both norepinephrine and epinephrine key chemicals in the brain.

Always Important to KNOW WHAT YOU ARE TAKING!

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Dr. M. De Leon is a retired movement disorder specialist, PPAC member and research advocate for PDF; 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.alz.org, http://www.aan.org, http://www.defeatparkinsons.blogspot.com
may also contact me at
deleonenterprises3@yahoo.com

This information is provided for general educational purposes only and is not intended to constitute i) medical advice or counseling, ii) the practice of medicine or the provision of health care treatment or diagnosis, iii) or the creation of a physician-patient relationship. If you have or suspect a medical problem, contact your physician promptly!

Consejos De Belleza #16 ¿Que es el Parkinsons? por La Dra. De Leon

¿Qué es la enfermedad del Parkinson?

La enfermedad del Parkinson es un trastorno crónico y progresivo el cual produce movimientos anormales causado por la falla o falta o muerte de vitales células vitales nerviosas en el cerebro, llamadas neuronas. Algunas de Eestas células moribundas producen dopamina, una químicao llamada dopamina que envía mensajes a la parte del cerebro que controla el movimiento y la coordinación. A medida que la enfermedad progresa, la cantidad de dopamina producida en el cerebro se reduce, dejando a la persona sin capacidad de controlar sus movimientos normales- antes se especulaba que al principio de la enfermedad ya se habia perdido mas de 60% de las cellulas dopaminergicas pero en los recientes años los cientificos nos han dado ESPERANZA de poder aliviar o combater esta enfermedad porque hoy se estima que al comienzo de los sintomas solo el 20% se ha perdido o no funciona adecuada mente!!!

Los signos motores más importantes de la enfermedad de Parkinson incluyen temblores, lentitud, rigidez, inestabilidad en la postura, así como otros síntomas no motores [estos incluyen síntomas como falta de olfato, problemas con el sueño, depresion, constipacion, problemas con el orine , dolor y fatigua corporal].

¿Cuántas personas viven actualmente con la enfermedad del Parkinson?

A nivel mundial, se estima que hay entre siete y 10 millones de personas viviendo con la enfermedad del Parkinson. En los Estados Unidos (EE.UU.), se estima aproximadamente un millón de personas viviendo en con la misma enfermedad, este numero representa una cifra más grande que el número combinado de personas que padecen de esclerosis múltiple, distrofia muscular y esclerosis lateral amiotrófica (la enfermedad de Lou Gehrig). Aproximadamente 60,000 Eestadounidenses son diagnosticados con el Parkinsons cada año. Este número no refleja los miles de casos que permanecen sin ser aun detectados.

¿Cuales son los síntomas motores de esta enfermedad ?

1) Temblor al estar en reposo- este puede o no ser el mayor síntoma – como todos los otros síntomas empieza unilateralmente pero a medida que avanza la enfermedad se transforma bilateral pero siempre mas predominante en el lado que empezó. Por lo general empieza en la mano pero puede empezar en el pie esto es menos común.

2) Rigidez -tiene que haber rigidez, al igual que los temblores este también empieza unilateral y después avanza. Por lo general la rigidez es mas fuerte en el lado contrario de donde los temblores son mas fuertes. Al principio a causa de la rigidez los pacientes pueden presentar con dolor muscular (esto ocurre en 10% o menos), también puede presentarse como debilidad muscular por causa de la rigidez y esto puede imitar un infarto o embolia cerebral por ser unilateral! también a causa de la rigidez uno necesita mas fuerza para hacer la misma actividad y de pronto dar la apariencia que uno esta perdiendo fuerzas del lado afectado, algunos pacientes presentan dolor en el hombro del lado mas rigido – o el lado donde empiezan los síntomas esto hace que aveces vayan a ver varios otros especialistas como ortopédicos antes de ser diagnosticados apropiadamente por un neurologo.

3) Lentitud de movimientos (Bradykinesia)- de repente unos notan que no pueden empezar los movimientos voluntarios e involuntarios con la misma rapidez que antes. Por ejemplo notan mas dificultad para pararse de una silla especialmente si han permanecido sentados por largo tiempo o la silla esta muy baja y tienden a usar otros músculos para levantarse o tener que menearse para poder arrancar hacia el frente …se balancean hacia el frente y atrás o usan los brazos de la silla para asistirse a levantarse.

4) Problemas de balance (instabilidad de posturas o desequilibrio) – a medida que la enfermedad va avanzando también este problema se va empeorando lo que causa que los pacientes o personas que padecen de este problema tengan mas propensión a caerse. Esto porque el centro de gravedad se va haciendo mas al frente a medida que las personas se van encorvando hacia el frente por causa de la rigidez muscular. Una forma simple de evaluar si las personas tienen buen balance es cuando ( por lo general el doctor o especialista) se pone detrás del paciente cuando el paciente esta descansando parado con las piernas un poco separadas y el doctor dan un tirón hacia adelante y hacia atrás sin que la persona pierda el balance. Lo mismo puede hacerse de frente.

¿Cuales son los síntomas del Parkinson?

Como dije antes el diagnostico esta basado en la presentación de los cuatro síntomas cardenales pero no todos tienen todos los síntomas en la misma proporción. Ademas también hay otros síntomas nombrados no -motores que no son causados por la deficiencia de la dopamina como la perdida de olfato, depresión, constipación, ansiedad, problemas del sueño y movimientos de las piernas por nombrar algunos y la presentación de estos hace que cada individuo sea diferente. También hay dos tipos de Parkinson uno que es caracterizado por el temblor ( temblor dominante) y otro que tiene muy poco o muy leve los temblores ( akinetic o sea falta de movimiento caracterizado mas por rigidez y problemas de postura y balance).

¿Cuales son los síntomas no-motores?

Ya mencione unos pocos….anteriormente

Aparte de los cuatro síntomas documentados anteriormente que son la base del diagnostico del Parkinson, hay otros síntomas que también forman parte del cuadro clínico causados por deficiencias de otras químicas en el cerebro aparte de la dopamina. Estos síntomas ( muchos de ellos pueden presentarse hasta 20 años antes del diagnostico mucho antes de que los temblores o la rigidez de principio).

-constipación
-problemas de orine
-disturbio de sueño
-depresión y ansiedad
-dificultad de deglutir
-alucinaciones y psicosis
-problemas de cognición
-baja presión y mareos
-problemas con la visión o sequedad de ojos
-problemas con sexo
-frecuencia de salivación
-aumento de sudor

¿Cual es la causa de la enfermedad?

La causa exacta todavía se desconoce en la mayoría de las personas que padecen de esta enfermedad..una porción pequeña es causada por ciertos problemas genéticos. Pero a la verdad es que hay muchos factores que contribuyen y hasta el momento todos se desconocen… Pero factores como toxinas en el medio ambiente desempeñan un gran papel, también hay una porción pequeña de Parkinson que es conocida mejormente como familiar o hereditaria.

¿Cuales son los factores que aperentemente contribuyen al de riesgo de contraer el Parkinson?

El hecho de vivir o crecer en áreas rurales aumenta el riesgo de contraer Parkinsons. Los estudios han demostrados que las toxinas y pesticidas pueden aumentar los riesgos, al igual que beber agua de noria. Por cieto hay cietas areas que son conocidas como” el cinturon del Parkinson” por la alta frecuencia de pacientes en estos lugares…unos de estas areas es aqui en el ESTE de TEXAS se especula que es por cause de las quimicas de las industrias de papel…..Por hecho También ultimamente han habido unos estudios que parecen indicar que ciertas razas como ser Hispano portiend emas riesgo que cualquier otro -el porque todavia no se sabe…estaremos al pendiente de estos estudios en adelante pare aver si son ciertos y ver la causa aligual de como resolver el problema.
También golpes ala cabeza contribuyen al riesgo.

¿Cuales son los factores Genéticos que contribuyen al Parkinsons?

La mayoría de la gente que padece del Parkinsons no tiene ninguna anormalidad genetica hasta hoy conocida. Algunas personas se especula que estan mas vulnerables a causa de su composición genética y atraves del tiempo pueden padecer un insulto a su organism ya sea por el medio ambiente o trauma y esto los desbalancea a medida que no pueden recuperar se del insulto y alli se desemvuelve la enfermedad como una basura que no puede ser eliminada y a medida que va pasando el tiempo por tartar de sacarla y qumarla y arrestar su desarrolo eso mismo hace que cresca hacia puede bien ser el papel de la proteina alpha synuclein que parece estar mal formada y doblada en la enfermedad del Parkinson …..pero aun no se sabe todavia cual exactamente es su papel en el desarrollo de la enfermedad precisamente.
Toda regllas tienen una excepción y la excepción son las personas que contraen la enfermedad en temprana edad antes de los 50 años (<10%). En estos casos la genética tiene más influencia.
Los investigadores han descubierto varias mutaciones genéticas que pueden causar directamente la enfermedad, pero estas solo afectan a un pequeño número de familias. Algunas de estas mutaciones involucran a genes que tienen un papel en las funciones de las células dopaminérgicas. La enfermedad del Parkinson que se desarrolla a temprana edad tienden a tener mutaciones en los genes parkin, PINK1, LRRK2, DJ-1, y glucocerebrosidasa, entre otros. ( Todavia no se sabe si estos forman parte de la enfermedad clasica del Parkinson que afecta principalmente a personas mayores de 55 años y tienden al sexo masculino…..pero mi observacion hasta el dia de hoy me ha indicado que especialmente aqullos que son diagnosticados antes de los 40 tienden hacer del sexo femenino….no hay estudios tyodavia ….esto es solo mi observacion).

Puesto que las formas genéticas de una enfermedad pueden ser estudiadas con gran detalle en el laboratorio, y porque el comprender las raras formas genéticas del Parkinson podría ayudar a entender formas más comunes de la enfermedad, la genética es actualmente sujeto de intensa investigación.

¿ Por qué es que el Parkinson es tan mal interpretado?

Hay ciertos medicamentos que pueden imitar o causar el Parkinson. Este tipo de medicinas son algunas que causan o bloquean los receptores de la dopamina en el cerebro. Por lo general cuando estos factores son removidos los síntomas desaparecen igualmente. Algunas medicinas que causan síntomas similares están en la página 13. Nunca paren de tomar sus medicinas repentinamente sin consultar con su médico. Si usted ha estado tomando alguna de estas medicinas y cree experimentar algunos de los síntomas relacionados con el Parkinson …llame a su médico de inmediato.
Cada persona progresa de manera diferente. Por lo general esta enfermedad no acorta la extensión de vida -pero tiene varias etapas (leve a severo)…la etapa severa se entra después de los 15 a 20 años por lo general. Pero todos toleran las medicinas diferentemente, y son diagnosticados a varias etapas y presentan con síntomas diferentes. Por ejemplo, en general los que tienen temblor dominante (avanzan más lento) y otros que son categorizados como akinetic o predominantemente rigidos( poco temblor- estos tienden a progresar de manera más rápida).
En la última etapa o etapa avanzada de la enfermedad las personas tienen más problemas para caminar porque son más lentos, y se les pegan los pies al suelo, se caen con mas frecuencia y tambien tienen mas dificultar para hablar y trajar al igual que requieren de mayor asistencia para hacer sus quiaceres cotidiadonos porque tienen más dificultad para usar sus manos. Estos tienden a tener más riesgo a contraer pulmonías por causa de aspiración. El 40% al 50% también empieza a tener dificultad con la memoria y pueden desarrollar demencia.
A pesar de que hasta el día de hoy no existe un tratamiento definitivo que pueda curar todos los síntomas, hay varios medicamentos que ayudan a mantener la función y calidad de vida. Entre más activo sea el individuo y participe activamente en su salud mejor éxito tendrá de combatir la enfermedad. Pero principalmente lo que ayuda a un paciente que padece del Parkinson aparte de tener una red social y familiar bien fundada es tener un especialista del Parkinson. Los estudios han demostrado que aquellos que son atentidos por un especialista tienen major calidad de vida y tambien es ecencial empezar tratamiento cuanto antes y no esperarse a progresar porque puede ser muy tarde.

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Dr. M. De Leon is a retired movement disorder specialist, PPAC member and research advocate for PDF; 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

Health & Beauty Tip # 14: Art of Caregiving -II By Dr. De Leon

Health & Beauty Tip # 14: Art of Caregiving -II  By Dr. De Leon

” Throw in a dash of panic, a pinch of fear, add a tablespoon of manipulation, 3 cups of scheming, and a handful of pills”- Charles Swindoll

and what do you have? Nothing but Chaos —

Now, a few years later since my grandma passed away, ironically, I have now become the patient. I have been diagnosed with young onset Parkinson’s disease forcing me to retire at an early age and give up the career I so loved! However, my role as a caregiver continues …in fact it appears to be expanding at an exponential rate.
Only difference is that NOW I am a patient as well and frankly I am not sure if my marriage will survive this second round of challenges!! I still have the support of my spouse but I find myself increasingly feeling like I am less of an equal and more of someone who needs tending to despite my very best efforts to the contrary! Which is funny given the fact that I still run everything around the house and in our family; you would know this immediately if you were part of my family because within a day or 2 of me being down the entire house falls apart!
Other than my job status and the whole bunch of pills I must take daily to function I do not see a difference in my abilities, personality or talents (perhaps- I am in complete denial- ignorance IS TRULY BLISS)….okay, yes! I am a little slower at times and more fatigued most of the time but I am still the one everyone else turns  to for help!

The past couple of week’s life stressors and demands have landed me at the footstep of the cardiologist office with severe chest pain fearing an ischemic attack- heart attack! These events which were the culmination of being housewife, mother, daughter, sister, caregiver, friend, mentor and patient among a myriad of multiple other roles CAN BE UTTERLY EXHAUSTING even in writing!
Ordinarily, if I have too much on my plate I can lean on my husband for support. Thank goodness for this because it was HIS insistence that I see a cardiologist! Turns out I have a cardiac condition- YIKES….DID NOT see this one coming…. But, over the last couple of weeks my husband had severe flu running 102 fever and developed pneumonia, and my daughter was discovered to have a possible tumor. This was after the beginning of my cardiac pain ….as you could imagine I did not have much reserve or stamina to care for anyone other than myself and seeing everyone so ill and needing my attention and care only made me feel sicker!
They wanted home cook meals but I had no groceries because I was too sick to go to the store-so thank God for take out!

Now, imagine you are in my shoes …what will you do?
Everyone you love is ill and is counting on YOU to bail them out but YOU are not only torn in multiple directions but are ILL yourself?

Well, as all things tend to entropy- (Greek word -meaning measure of the disorder)…..implode they will!
We must learn to cope with the stressors -so it is NOT US that BREAK DOWN & end up such as myself in the doctor’s office or worse in the Hospital! After all, if we are not well…then who will take care of our loved ones?!
My near cardiac event was not only a wake- up call to focus on what is truly important. But, also served as a reminder that any stress can be detrimental even lethal in the presence of any underlying chronic illness such as Parkinson’s disease, much more so than if it occurred in an otherwise healthy person. This realization led me to focus my attention on the challenges that we the “sandwich” generation are facing daily. The term sandwich generation refers to a generation that is simultaneously caring for parents and children coined by Dorothy miller in 1981.
Many of us who have Young Onset Parkinson’s Disease, Parkinson’s and Parkinson’s Plus Syndrome are in this situation caring for an aging frail parent who perhaps has Alzheimer’s and rearing young children. We are having to attend school events, piano recitals, swim meets, girl scout activities and so on while make end of life decisions for our loved ones who may not even remember who we are! This can take a toll on any normal healthy person. throw in the wash your illness, your own doctor appointments NEVERMIND YOUR LOVED ONES DOCTOR APPOINTENTS and perhaps you are still holding a job either full time or part time? But, even if you don’t work outside the home these activities are enough to drain the last ounce of energy of any one.  Yet, outside of caring for our loved ones on both sides of the spectrum, there is still house work and cooking to do!
It should, then, come to us as no surprise why we are so fatigued, depressed and worn out! Because face it, no offense to the guys who also are going through this illness and same issues….women are still in the majority of cases the home makers and the ones to tend to the kids and look after the parents. This is not because men don’t want to help. Sometimes they just don’t KNOW how to because they have never been thought or given the opportunity to do so!

It is hard to come home from a hard day’s work and have
to essentially continue working because you have to be the one to pick up the
slack for your loved one due to their illness. Sometimes all, you want to do is come home
and rest undisturbed!
This means NO cooking, cleaning, or tending to someone else’s needs the minute you walk
in the door.
It can be especially disheartening if the person you care for is able to change and groom themselves and yet they are
still disheveled upon your arrival or worst in their morning clothes! That’s why even if I had a
horrible day, I will take care of myself and spend time grooming and if at all possible rest(as I mentioned in other blogs- a “5 minutes rest-sit still and do nothing” to recharge at least a couple a times a day is highly recommended! This goes a long way to avert fatigue and only way I know how to keep going). Do whatever needs to be done so by
time husband or spouse or care giver arrives, you are looking your BEST but also NOT appear as a patient! (although sometimes this can’t be helped).

Even though, in my case my husband serve as my caregiver, he is also the provider and bread winner so I try to maintain my role as an equal in the household …not only looking the part of a well groomed wife but also that of a homemaker. The latter is not always easy since we all know that having Parkinson’s or any other chronic illness results in “good days and bad days.” So, for the not so good days either put something in a crock pot (“Any body can cook in a crockpot….” by Debbie Thornton) or  stock up on fast easy semi-nutritious frozen foods or for better quality foods do like I do on days when you feel well cook a surplus and freeze for later use. [In some cities and towns, they offer cooking classes where you can actually cook a whole weeks worth of food and take home to freeze! I would definitely take advantage of this if I were to live in one of these towns ]
I use all the suggestions above 90% so there is a meal when he comes home. For I have learned that nothing makes a man happier than
seeing food on the stove…I do declare…. when my husband sees all 4 burners going
he gets positively gitty!

Fortunately, there is take out the rest of the TIME!! don’t stress yourself! spending time with your loved ones is what’s MOST important!!!!

After all what matter is your heart and enthusiasm in caring for your loved ones-(Greek origin is entheos, “God in”). As my best friend always said, “is the quality Not the quantity” of time you spend with those you care for……

So, next time we feel frazzled and sandwiched  in our duties and responsibilities instead of hiding or running to the doctor for more pills let us turn our entropy into entheos in order to see God in every situation to make it fresh and exciting even if we are just the meat in the sandwich  being crushed and squeezed from both sides…. remember, no perfume could ever be released from its source (the flower)  without crushing it first!

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Dr. M. De Leon is a retired movement disorder specialist, PPAC member and research advocate for PDF; 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

Always Keep it EVEN

Empathize- remember in a few years all of us could be in the same situation !!!!!

Validate concerns-when ignored or suppressed emotions gain momentum if validated they dissipate

Encourage wellness-music, art, exercise

Neutralize anger/panic/fear-  person is STILL living HIS/HER LIFE- you are only there to facilitate

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