chronic illness, disability in PD, parkinson's disease, parkinsons health and beauty tips

Tips on Getting Disability Benefits Efficiently & Effictively: by Dr De Leon

Getting Disability Benefits: Is It Always Necessary to Hire a Lawyer? Part I : By Dr De Leon.

caregivers and chronic illness, chronic illness, depression and suicide, fall prevention in parkinsons, falls in parkinsons, parkinson's disease, parkinsons health and beauty tips

Tips for Making Life Easier for Both Caregivers & Chronically Ill Alike : By Dr. De Leon

Last month I have been dealing with my dad’s terminal illness. I have had my moments of frustration as many of you have in taking care of loved ones with chronic illnesses like PD because sometimes what we think is best for them is not what they think is best for them. So how do you decide when to step in and when to watch from the side lines (cautiously holding your breath). This question is extremely complicated of when to override their needs and desires for safety sake?

For example my dad is very frail getting extremely weak and has fallen twice but still insists in using a walker instead of wheel chair which makes me cringe. It is important not to fall into a trap as a caregiver of assuming what the person with chronic illness or PD needs or wants. It would be best to ask that person what their wishes are. An honest and frequent dialogue can go a long way in maintaining the personal dignity of the care recipient or patient as well as that of the care partner who will not come across as a tyrant but rather truly caring individual.

Learn to compromise– avoid disputes and old issues from getting in the way! During chronic illness especially as a loved one reaches end of life; this is the time to stick together! So as to make him or her feel like he/she still has some independence …so instead of forcing wheelchair in the case of my dad, I explain my concern for him of falling again.

You must Reiterate your concerns in a compassionate manner – I explained to him that we had been lucky until now not to have broken any bones thus far. But, as his bones are frail and weak any small apparently insignificant injury even a simple bump from sliding off the bed can lead to a hip fracture or wrist fracture. However, if we are to not use wheelchair, then we must have a safe plan in place. So, he was instructed to call someone first prior to getting up either from bed or sitting to alert them of his intentions of wanting to be mobile. He then was to Sit at side of bed if reclining for few minutes rather than  jumping up from laying ( although  this is more theoretically purposes just so that he remembers to take it easy because in all honesty he is not jumping anywhere when movements are extremely slow, deliberate and  laborious); these recommendations are meant to safeguard him from getting orthostatic, dizzy and avoid subsequent falls. Furthermore, I again instructed him on appropriate safe use of walker and asked for him to carry safety belt around so if he does slip it would be easier for me or my mom to catch or lift him up.

Learn to coordinate: some of us are better at this than others. If you are good at delegating and seeing the big picture- this is your calling. Nothing is more important than having a game plan! For instance, I am good at this … While my mom tends to daily needs of my dad I can step back and see what needs to be done so I can guide my mother and assist her in getting things done. For instance dealing with matters of insurance, are documents in place?  Are Wills done?  Over see funeral arrangements if dealing with end stage disease and terminal as is my dad’s condition? Are other legal documents in order?

Because, as we know when we are dealing with the task of caring for someone 24/7, we can become so overwhelmed we sometimes can’t see the trees for the forest. This is especially the case when death is imminent, our judgment can become clouded and we may become paralyzed with grief! Be the one that initiates conversation and steers it in a positive direction to get things that need done taken care of.

Learn to facilitate: emotions tend to run ramped when dealing with a chronically ill loved one.  It is hard to step outside your situation and see things objectively. This is when a friend, pastor, social worker, healthcare professional or in my case a relative that does not live there all the time comes in handy. They will ( I-you can ) provide valuable insight into the situation, give impartial advice to diffuse a stressful situation by offering prayer and even referring to other counseling services, support groups and other resources on line and to other community organizations that may be able to assist with specific needs. (i.e. Help find a sitter)

Learn to listen: this is the most difficult task of all! Some of us hear but don’t really LISTEN. Listening takes special skills understanding and putting one in the other person’s shoes. When we are in a stressful situation we all desperately need to be heard so everyone talks but No one LISTENS! Often times no words need to be uttered to have truly listened and made the person you are caring for feel special, unburdened, understood and loved. The same rules apply for the caregiver … ask them to tell you their story. This simple act can allow them an outlet to relieve their stress and open the door of communication and a way for you to offer assistance in the area of their specific need. (E.g. My dad still wants to maintain some semblance of dignity and independence/ mom wants not to have  him break a bone and hurt herself in the process if he falls). So, we came up with specific compromises on how to do things like grooming in a manner that is safe and convenient for everyone.

Lastly but not least learn to socialize: again if you are a leader or a take charge kind of person or event planner, this would be right up your ally… After all we are social beings …most of us even the shyest of us (we) thrive when we are in bonding with others either individually or as a group. Therefore, it is important to plan social outlets to get the caregivers out of their stressful situation from time to time to avoid depression, loneliness, feelings of helplessness, spiritual exhaustion which might lead to suicidal ideation but also to remind them they are individuals that have unique talents and gifts. It is important to Do the same for the patient – (to avoid same type of feelings) the social activities can be done together or separately-best if done separately from time to time.  Help organize activities for family, individual etc. Put your imagination to work. Even if it means taking them out for an unexpected ” ice cream ” run or whatever their favorite activity may be like in my dad’s case fishing (even if it’s just in a pond, bucket, or fish tank because he is now too sick to go outdoors far away from home fishing as he would like) and my mom -shopping! (Of course don’t forget to get someone to watch patient while care giver goes out).

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

caregivers and chronic illness, chronic illness, parkinson's disease, parkinsons dementia, parkinsons health and beauty tips

Things I Learned About Being a Caregiver While Taking Care of Those I love

One person caring about another represents life’s greatest value.” Jim Rohn

It seems as if the whole last decade has been an unending parade of sick people with chronic illness revolving though my doors.  So, I have become somewhat of a caregiver guru… I think that these events along with my own illness have been entrusted upon me to develop one single trait ….PATIENCE.

I was never a very patient person by nature as are most type A- personalities who like me thrive on being in charge, in control and being able to multi-task.

Being a caregiver has challenged all these notions and made me learn to prioritize things in life. Taking care of someone is difficult no matter the level of care you provide. But, as you already know the task becomes increasingly more difficult and challenging the older, more disabled,  and more chronically ill the person you are providing for is; even simple things like brushing their teeth can be a shore if they have dyskenesias,or dystonias involving the head and neck. Been there done that! Electric tooth brushes work best at any rate for most Parkinson patients. And by the way, if they have dystonia helps to find their ‘geste antagoniste’ (a sensory trick applied by touch to another part of body to temporarily distract or interrupt the dystonia).

Dressing, feeding or helping someone ambulate is not so bad if you only have to perform once or twice a week. But, it is a different story when they are completely dependent on the caregiver to have their basic necessities met. Dressing someone who is completely immobile, rigid and unable to assist can make a weight of 100lbs feel like 300. This is when you realize you simply can’t have control of the situation all the time, especially when dealing with chronic illnesses that may be exacerbated by outside factors. You must learn to roll with the punches and take the good with the bad …patients WILL have good & bad days. Thus, you will have stressful days and not so stressful days! For instance, I have discovered that Parkinson patients tend to have increase in pain, & stiffness during cold weather. Take necessary measurements to avoid extreme temperatures, use sensory tricks, or discuss Botox injections or baclofen pumps if dressing is difficult because of rigidity despite adequate dopa levels or DBS with your health providers to help easy your stress and help care for your love one in a less disruptive way to all. Implementing some of these techniques will also keep you from pulling your back. Also, talk to your physician about a referral to the Physical Therapist and Occupational Therapist, they can help evaluate for the patients needs at home and lend/or rent you equipment to use at home to make your life easier.

You also, must learn like I have that in order to preserve your sanity and the peace of those around you must relinquish control to someone else from time to time…simply can’t be the savior all the time! Taking care of someone especially 24/7 – Is a team approach! Surround yourself with a group of good friends that are trustworthy and can lend a hand in the care of your loved one.

I would not have been able to survive until this point without my best friends support …when I had to take my dad to doctor when he was undergoing chemo and radiation or my grandmother who suffered from PD…..my friends would step up and pick up my daughter from school…care for her…drive her to where I was if needed. During, daytime when I still had to work; I engaged services of a close friend to sit with grandma until I got home.

Besides patience, the number one ingredient to persevering as a caregiver is LOVE! When the going gets tough the only way you will make yourself go even when you are spent, heartbroken, at your wits end is love for your spouse, partner, family member, or child for whom you provide care.

Love gives you courage, strength to go that extra mile, smile when you feel like weeping and ability to rise above your situation. In the end is the commitment that matters even if there is nothing to be done… Love is what gives us all staying power…think about it… As Dr. Arthur Kleinman quipped “I am with you in this [journey] ….right until the very end.”

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

All materials here forth are property of Defeatparkinsons without express written consent, these materials only may be used for viewers personal & non-commercial uses which do not harm the reputation of Defeatparkinsons organization or Dr.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

caregivers and chronic illness, parkinson's disease, parkinsons health and beauty tips

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

caregivers and chronic illness, parkinson's disease, parkinsons dementia, parkinsons health and beauty tips

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

parkinson's disease, parkinsons health and beauty tips

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

alzheimers, parkinsons dementia, parkinsons health and beauty tips

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

alzheimers, parkinsons health and beauty tips

Health & Beauty Tip # 13 : The art of caregiving by Dr. De Leon

Health & Beauty Tip #     : The art of caregiving by Dr. De Leon

Do  what you can to show you care about other people, and you will make our world a  better place.“-
Rosalynn  Carter

Today, I am writing about a topic that has gotten me so enraged, I could no longer keep quiet.  Few blogs ago, I started to mention the difficulties navigating a marriage when a spouse becomes chronically ill and the overwhelming evidence that the great majority of these couples end up tragically in divorce at an alarming rate higher than our already scandalous national divorce rate.

Well,  today I say…the selfishness MUST end!!!

Marriage was supposed to be the union of two souls “for better or for worse in sickness or in health.” No where was it written that marriage could be terminated if one partner was no longer attractive, healthy, working,  or “abled.”  When did it become all about OURSELVES! Have we forgotten the biblical principal that is better to give than to receive?! ( Acts 20:35)

Seems like our whole society is about instant gratification – if is not pleasant  or slightly uncomfortable we want nothing to do with it! I  am truly sick and head it up to my eye brows with SELF!

The theory is that we must do something for ourselves, to ourselves, or with ourselves problem is that this way of thinking leaves no room for anyone else in our lives much less time to be a caretaker.

As I have said before in previous blogs, my advice comes from a broad experience not only as a professional – neurologist but also as a Parkinson’s patient, and caregiver!

Whether you are a man or woman,  we  all need love and validation to thrive. Remember, that Even the strongest person needs encouragement, support and loving embraces or they too will crumble eventually!

During the time I cared for my grandmother who had Parkinson’s, I had a 4 year old,  a full solo practice and was in the middle of building my office. Even though, I had hospice care for her 7 days a week, a sitter which cared for her while I worked  along with the full support and cooperation of my husband, I barely survived as did our marriage!

Therefore, If caregiving was easy than it would not be an ART because you can’t have art without HEART.
Being end stage, she was completely bed bound. On top of this, she had severe tremors which made feeding herself extremely difficult which required someone to feed her. The responsibility usually fell upon me which I gladly did….but was time consuming. This meant that instead of finishing hospital rounds at 9, I would be working until midnight. She also had severe hallucinations……which would result in some very interesting conversations with my child that sometimes ended in fighting over dolls and other toys. I had to step in an referee and explain to my toddler that grandma was sick ( and in her mind the doll was the baby she had lost as a young woman!)
There was NEVER a DAY OFF!  or  quiet time to myself!  Much less time as a couple or family! People were always at my house!  I was in a PERPETUAL ROLE of a CAREGIVER given my profession! Always taking care of someone even on my supposed day off!

I would be tending to grandma’s hallucinations as I would walk out the door, only to walk into office to evaluate someone with same problem to continue hospital rounds on same confused psychotic Parkinson patients only to return home to same scenario!..

It was a Non ending cycle. Plus her room in my house looked like a hospital room and towards the end was beginning to acquire that same smell that you first notice when you walk into nursing home! No matter how many febreze and air fresheners and perfume bottles I used that’s because all the hospice workers were spilling things on the carpet each time….carpet had to be removed! I could not seem to get away from it all! It was disheartening because even though I loved her and no one else could manage her medical problems like me or calm her when she got confused. I needed a few hours to my self without any demands or pressures from anyone to recharge and refocus …
I did not know at the time, but she gave me the best gift ever ……how to become a better human being and doctor!

Since, she was always a GREAT cook and loved to eat interestingly enough most of her hallucinations involved cooking! I would come home and she would say could you please serve me the upside down cake I just made or take out of the oven and give me a piece. So, as to not agitate her and to please her I would scurry to the kitchen to bake or make. Mind you I have never been a great cook!  So, I learned from her …I would ask well, what ingredients does that require and so on… as time went on I got better. I would be a proud day, when she would comment ,” I out did myself today!”  If she was not pleased with my cooking, I would simply say, ” well grandma, tomorrow you can try again!” She would be satisfied …..

my daughter learned to play nice with her grandma and color with her and play dolls and dress up….memories still remain and we both still laugh and are happy to have had chance to be with her.

Soon, I learned to pay closer attention to the caregivers in my practice and started noticing all the same signs of fatigue, bags around their eyes, withering of spirit because we forgot that  if the person in charge, captain making all the decisions, the caregiver in this case, if he/she goes down so does the ship!

Running around putting out flames and solving everyone’s problem can be exhausting kind of  like having to walk on crutches by leaning on them constantly—-leaves you bruised and sore!

So, I tell all caregivers have alone time daily (even if its just one hour of the day ) if not possible at least once a week….the spirit needs recharging more so then our bodies. Look for ways to support, encourage, build up, and stimulate your loved one-all from the heart! Make it fun!  Use what is around you….the simplest things can bring so much joy what matters is your time TOGETHER!!!!! The MEMORIES being forged!

remember- the key to being a great caregiver with heart is giving  hope and of yourself….one life does makes a difference …holding on matters and being kind to others pays off…treat others as you would be treated…. instead of focusing on yourselves look at others around and regard them ( your loved ones) as more important than yourself!

“”Sometimes when faced with an intractable problem, the brain is not the one to solve it but rather the  heart “- ( perception)

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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