Daveswordsofwisdom.com: If You Experience Some Of These Symptoms, You Are ...

Daveswordsofwisdom.com: If You Experience Some Of These Symptoms, You Are ...: In today’s world where everyone aspires to get rich, powerful and famous, our lives have become mechanical by following the same hectic s...

Help with Parkinson’s Awarness Month

Help with Parkinson’s Awarness Month: This April, I urge our neighbors to take part in Parkinson’s Awareness Month.

Seeking Out a Parkinson's Specialist - Parkinson's Disease Foundation (PDF)

Seeking Out a Parkinson's Specialist - Parkinson's Disease Foundation (PDF)

Parkinson's Humor: I am Special

Parkinson's Humor: I am Special: I AM SPECIAL and I have a sense of humor.  I have Young Onset Parkinson's Disease (YOPD), also known as early onset. What does Young ...

The Conundrum of PD: Are Memory Problems due to Disease, Medications or Both?: By Dr. De Leon

"Understanding (PD) is like trying to put together a puzzle with pieces that don't fit" -Dave Guerrero.

Cognitive problems and memory loss issues is one of those symptoms of PD which seem to plague all of us from day one whether we are patients or caregivers.


The thing we must first remember is that dementia is defined as loss of previously acquired skills e.g. washing dishes, cooking, driving etc. Parkinson’s dementia does not occur in typically until late stages. This means that patients would have had a diagnosis and symptoms of Parkinson's for over 10-15 years before dementia sets in. If anyone has symptoms of dementia present earlier than this than chances are the disease they have is not typical, common garden variety Parkinson's but a variant which could include things like PD plus syndromes (MSA, CBGD, LBD) or another dementia disorder such as FTD or Alzheimer's and PD as well as other neurological diseases that can have parkinsonism, like strokes. Having said this, all patients notice a change in their cognition from the very beginning of the disease even before motor symptoms are noticeable.


Does this mean there is dementia? No!


The usual symptoms I am referring to that patients commonly experience are related to personality such as getting more irritable, short tempered, anxious and depressed. Sometimes, we as patients may not realize these subtle changes like increase impatience; but those close to us notice and may call it to our attention or become aware of these changes before we do. At the onset of my PD,  I began to notice increased irritability and frustration especially when working at the office which I could not understand since I was the queen of multitasking. I was NOT alone in my perception my staff of many years also noticed a change in my personality that was out of character for me and something was wrong! Fortunately, this symptom improves with treatment. But, is one of the first signs of PD in most people and if not careful can go untreated for years.


Second, all Parkinson's medications can cause cognitive changes usually in the form of brain fogginess, sedation, trouble with word finding, and depression which can cause forgetfulness. This is why is imperative to make only one medication change at a time and follow up with your doctor shortly after every new medication change to evaluate outcome and most importantly tolerability. Be on the lookout for cognitive problems due to medications, these symptoms will come on within a week of staring new medicine typically and will aggravate or worsen after each dose intake within a few hours and last as long as medication Effect lasts. This is why it is important to pay attention to medicines and a keep chart of times and effects of all medicines and talk to your doctor if you notice cognitive changes. But be sure, not make changes or discontinue regimen without first discussing with your physician.


Third, because PD usually affects mood as in depression as well as sleep, as in restless leg (RLS), sleep apnea, REM behavior, these if not properly treated can by themselves cause memory loss usually in the form of poor concentration which leads to short term memory loss because one cannot encode information into long term when not paying attention due to being tired, sleepy or fatigued, plus it is through deep sleep that our brain processes all information and makes long term memories.


Fourth, just as our bodies become slow so do our brains in retrieving information, pulling and opening the file cabinets where information is stored can be difficult. It does not mean is lost simply means that takes a little longer. Solution increasing dopa and mental exercises-


Fifth, however after a number of years as PD advances, up to 50 % of patients have a chance of developing PD dementia which is characterized by  psychiatric tones like delusions, psychosis, hallucinations (visual) along with apathy and pronounced forgetfulness. Treat with Acadia; anticholinesterase (e.g. Aricept, Exelon); Provigil (among other stimulants); Namenda as well as antipsychotics (Clozaril).


In my experience as a Parkinson's doctor, patient, and caregiver the overwhelming problems with memory in the majority of PD patients, unless they are end -stage  disease beginning to hallucinate becoming apathetic which are signs of early dementia setting in, are a combination of  Parkinson's disease itself  as well as medication (usually not enough). The result of insufficient dopa in the brain as well as not properly treating and addressing non- motor symptoms which interfere with concentration is poor memory. Thus, long term memory appears impaired because the majority of PD patients are sleepy, depressed, under-  and- over -medicated, as well as fatigued. Early recognition of all non- motor symptoms of PD which includes side effects of medications as well as early detection of PD dementia is key, after all even the hardest puzzles have a solution.


Finally, I recommend every patient have a baseline MMSE (mini mental status exam) or Mocha test followed by every year unless symptoms of forgetfulness and apathy or other sings of forgetfulness arise. If depression is significant and can't tell if memory problems are due to depression or early onset of dementia recommend Neuropsychiatric evaluation. If a person has profound depression unresponsive to meds consider ECT (electroconvulsive therapy) which works great.


The basic understanding of the various puzzle pieces which make up memory and cognitive changes in PD along with the correct treatment will lead to improved quality of life along with decrease chances for nursing home placement or prolonged hospitalizations.

Bra-What? To Wear or Not to Wear? : By Maria De Leon

“Intelligence is like underwear. It is important that you have it, but not necessary that you show it off.” - unknown
 

It's tough being a woman.
The addition of Parkinson's into our lives sometimes makes me feel like I am an enchilada short of an enchilada plate!
I can barely get dressed some days and I am supposed to wear what?
Well, I don’t know if it’s just that I have been too indoctrinated by western civilization or that all fashion, 'make-over' shows and “what what not to wear” tips usually start off with “the first thing a lady needs is a nice bra to support the girls and make you feel like a sexy woman!”
Although, there is still a debate today as to whether bras are really needed, I am a firm believer of the latter- a bra for every occasion to match our outer clothing!
But sometimes when you want to be naughty or feel extra special, an extra lacy or sexy bra will do the trick even if all you are wearing is a track suit. The problem is many of us with Parkinson’s disease and other impaired mobility illnesses have simply given up wearing a bra because of the difficulties in getting them on.
Well, as someone who not only treated many PD patients and now lives with the same I understand firsthand how cumbersome it is to even get out of bed at times even more so to put on garments that require a lot of flexibility and great deal of dexterity.
Yet, it makes me so sad and frustrated to hear beautiful vibrant women with PD give up on wearing bras. Because what I am hearing is I am  giving up on being a woman and dressing up for the occasion to simply show up!
By no longer caring or bothering, we are unwillingly admitting defeat and letting Parkinson’s win. What we are essentially telling our brains is that it has no control or power over the  situation we are in.
But, I am here to say that we as women have many options besides going bare unless you have always done this prior to PD.
There are other alternative garments or ways of putting on a bra that will allow us to look and feel feminine at the same time empower us as we show Parkinson’s who's boss.
But, first you must always consult your physician regarding this problem. Since the reason we might not be able to put on a bra is typically one that can be addressed and corrected by our MDS via medication adjustment or physical therapy in over 95% of the cases.
However, if after a careful evaluation and medicine adjustment no improvement in mobility occurs:
Here are some ways to help putting on a bra when dexterity fails:
The first recommendation is a technique known as ‘Hook & Spin’ but make sure you first add some talcum to your waist to make rotation easier.
HOOK & SPIN STEPS 

1. Wrap your bra around your waist and hook the closure in front of you. Make note of the location of the bra’s label (e.g. side seam, back).
2. Turn your bra clockwise until the front of your bra is centered.
3. Bring bra up so that the bra band is resting directly under the breasts.
4. Slip the shoulder straps over your shoulders.

Some bra alternatives:
There are many healthy alternatives for dressing bra -free (some women prefer the positive term "bra- free" rather than "braless" because they say women don't really need to wear bras). However, going “braless” or “bra-free” usually works only if you have small breasts. Otherwise, I recommend trying some of these alternatives.

1. Camisoles are inexpensive, and there is a huge variety at many department stores with variety of fabrics and weights, from silk to cotton.  Recommend cotton or those made of breathable material (i.e. cotton/lycra) because let’s not forget we sometimes tend to perspire a bit more than usual due to our disease. Find thin and/or cropped camis for summer but look for ones that have padding or bust panel in breast area. Camis are seamless, comfortable products.
2. Shirts with pockets over both breasts; extra fabric layer conceals. Loosely fitted tops.
3. NuBra is just two adhesive cups that you place on your breasts. They keep the nipple from showing through clothing, if that is a concern.
4. Front close/racer back bralette (this is a bra without wires or molded cups on par to sports bra but without firmness to hold you in place). I love these bras when I am extremely stiff like when is very cold outside.
5. Can wear a bandeau- (a strapless bra that covers the breast) which many women with mobility issues have sworn by this.

Remember though that a nice ‘lacy’ bra, bralette, or  Colette (unlined lace full cup bras)  is always a psychological pick me upper especially if you spend a lot of time with jogging suits or stretchy pants as many of us do due to lack of mobility, rigidity and bladder issues which keep us tied up close to bathroom.
Any woman will swear by the fact that a simple act of putting on a pretty lacy bra is sufficient enough to boost mood and confidence. No one knows what you are wearing besides you but that’s enough to put a spring in your step particularly if you are able to match with lacy panties. This simple act can be a powerful mind and brain booster.

The Theory of Everything : by Dr. De Leon

Recently I watched the movie "The Theory of Everything" in awe as so many of you must have. I was so delighted to see this film get nominated for so many awards and rightly so. The entire movie crew did a superb job bringing to light not only the life of this great mind of the 21st century but also poignantly detailing the conflicts that both a person with chronic neurological disease faces but more importantly the sacrifice, commitment and love required to care for someone in this position on a daily basis. Many people have wondered and asked why Professor Hawking has been so fortunate to live to his present age, well into his 70’s, when most people with ALS typically live only on average of 2-5 years.

Some have attributed to the fact that he has a brilliant mind, others to having an atypical slower variant of the disease.

But, I say that the real reason perhaps has not much to do with the disease but with the extraordinary care that he receives.

This is a testament to the love and devotion of his care partners.

The thing that makes people with this illness succumb to the disease is the weakening of breathing and swallowing muscles which eventually compromise the person's ability to oxygenate and to maintain nutrition causing a total collapse of the body. These are precisely the same reasons people with PD eventually die. However, if we provide support and assistance to allow someone to continue breathing artificially, the body and brain can continue to survive.

When I was in medical school the neurology department at Hahnemann University which is now Drexel University College of medicine had a large ALS facility. Patients there had been living with ALS like Mr. Hawking for decades. 

We don't often hear this because so few clinics exist like this and most ALS patients choose not to live completely locked in a nonfunctioning body. But perhaps we need to focus these patients' attention on how someone can still have a prolific and meaningful life despite severe disability as long as there are willing care partners. This thought got me thinking about living with Parkinson's disease. Although, some would claim that the severity of disease of PD cannot compare to that of ALS, yet as Parkinson’s progresses patients can also become trapped in their bodies. It is only through the unyielding care from the care partners that we as PD patients and those suffering from ALS can have a more meaningful existence.

 However, this care can come at a price as was shown in the movie portraying the life of physicist extraordinaire. Divorce rates are much higher than general population in those suffering from chronic neurological disease. Love fades when the spouse is forced to be the care partner and sole provider. Caregivers should not go at it alone. It is a tremendous burden for anyone person to bear having someone else depend on them for All of their needs 24/7. Children do, but they eventually grow up and become independent. However a person living with chronic progressive illness the reverse is true- independence decreases as dependency increases. Worst of all is that this often happens as the spouse’s or partner’s strength begins to diminish and aging problems set in. It is honorable to want to take care of your loved one initially; but if not careful to take time to grow as a person independent of patient care a downfall is inevitable and love and loyalty can turn into frustration and resentment as we saw happening with Stephen’s wife after years of devotion.

To avoid marital pitfalls and continue the love that helps the patients’ thrive and aspire to continue fighting as well as having new goals and dreams despite their illness is to recruit others to help early on in the disease- it truly takes a village. So yes, we as Parkinson's patients can continue to thrive well after disability has set in and our bodies no longer cooperate as long as we have someone preferably a team rooting for us, helping us get through hurdles of physical impediments willing to push us,  lift us and feed us if necessary. Otherwise, we too like the majority of ALS patients who succumb to disease will wither away and call upon death much earlier than our potentials demand.  By not allowing our destinies to be fulfilled, we may deprive the world of immeasurable hidden talent that only the PD patient possess which may manifest as the next masterpiece or  brilliant insight which could lead to the next big discovery in the world of neuroscience.  After all, as Stephen Hawking said: "where there is life there is hope."

¿Cuando Es Necesario Preocuparse Por Los Resultados de un Laboratorio? Por la doctora De León

Su doctor sabe mejor siempre  cuando  se trata de los resultados de su laboratorios ¿si? o ¿no?
En primer lugar es importante saber cuando hacer se los laboratorios y exámenes por su doctor y por que se ordenan:
No teman en preguntarle a su médico la razón por los estudios.
Por ejemplo : ¿si él hacer los estudios les va a dar el diagnóstico definitivo que necesita ?
¿Cuanto cuesta?
¿Si su seguro cubre los gastos?
¿ qué tan invasivos son los estudios?
¿ qué tan rápido o pronto van a estar listos los resultados?
¿ hay algunas instrucciones específicas como abstenerse de comer o beber, si se puede tomar las medicinas antes de los exámenes o si puede hacer ejerció antes o después de los laboratorios?
¿ qué pasa si el examen sale positivo? ¿ o negativo?

Las personas que tienen demencia no deben de someterse a exámenes rutinarios para detectar cáncer por que la calidad de vida con su demencia va a progresar más rápido de lo que algún cáncer de los cuales hay exámenes para detectar temprano podría. Además estos mismos podrían causar ansiedad y des confort en los mismos.

Una ley nueva dicta que los laboratorios pueden dar y los pacientes tienen derecho a recibir una copia de sus laboratorios. Esto puede aveces causar ansiedad hasta pánico sin razón si su médico no ha tenido la oportunidad de evaluar los resultados y decidir si  los laboratorios que salen a normales son verdaderamente de importancia o no.
Todos los laboratorios de sangre son rutinariamente evaluados por el gobierno federal  para asegurarse de que los métodos utilizados por los diferentes establecimientos para obtener estos siguen las reglas básicas recomendadas. Pero aún así los reportes pueden variar en lo que se conoce como " grados de referencia" ( reference Ranges) que varían dependiendo del método que cierto establecimiento pueda usar para obtener el resultado adecuado. Pero aveces los resultados salen anormales por la manera que la sangre es manejada o la condición del paciente cuando tomó el examen.
Por ejemplo, si un paciente no come, ni toma nada por horas antes de un examen de sangre puede que de repente aparezca que la función de los riñones están no funcionando bien porque se ha deshidratado por no tomar agua.
Otro ejemplo es cuando le sacan la sangre y dejan que el espécimen se quede allí por horas antes de analizar la sangre puede elevar el nivel del potasio erróneamente.

También el nivel de la azúcar puede variar dependiendo de cuando comió la última vez y que tanto comió.

Por eso si usted recibe los resultados de sus análisis de sangre y están anormales antes de alterarse hablen con su doctor y el o ella les dirá sí es algo por que preocuparse o no.

 

Tips for Beating the Winter Blues

Tips for Beating the Winter Blues

Be RESTORED & EMPOWERED This Season Through Caregiving: By Dr. De Leon

In keeping with the spirit of Thanksgiving season and Care GIVER month;

I want to personally say thank you to all the unsung heroes who give of themselves daily to make someone else's life better especially to my husband who is my rock and without whose loving support I would not be able to survive a single day and be able to be a caregiver to everyone else in my family!

Since, none of us are islands to ourselves and are in need of one another for support and encouragement to carry on, there are a few words I would like to say to everyone this week : 

 be a giver, a hugger, a listener, a greeter, a smile maker, not withholding words of praise, encouragement, thanksgiving and kindness.

Sharing blessings with others is a choice- so choose to make a difference TODAY and experience the power of giving and in turn BE INSPIRED, EMPOWERED, RESTORED, and CURED!

Although we are all waiting anxiously for a cure to PD, is what we do with our time while we wait that counts. We must count our blessings and learn to not only  lean on one another for moral support but also lift one another up when the load gets heavy. For those of us who are the care partners, and Parkinson patient Advocates let us continue to be the voice in the desert of the less able (the ones devoid of support whether it be moral, spiritual, or financial) and champion the PD cause so all patients and caregivers alike can obtain support, be lifted, and find fulfillment in their journey.  

Happy Thanksgiving everyone!!!

6 Survival Strategies to Help Ease the Holiday Stress: By Dr. De Leon

               When I was young the Holidays were something to be cherished. I looked forward to helping pick out a Christmas tree ( the biggest one on the lot of course!) to decorate it with my family as we listened to Christmas music. We frequently burst out in a familiar chorus making it so much more fun. But, the biggest joy was to sit in the dark just staring at all the twinkling lights and fall in to a daze. Life was simple then. I am not really sure when life started getting more complicated and started losing some of its magic. Especially as I began my practice, I started to notice an increase in strokes during the Holiday seasons particularly Christmas. Strokes were usually caused by an increased blood pressure caused by stress, sadness, and  loneliness.

Over the last few years I have lost 3 of the most important people in my life and I, too, for a while began to feel extremely sad and detached which only contributed to a 'sense of futility' in the whole festivities especially compounded by Parkinson's disease making every ordinary activity like decorating or traveling that much more challenging. Then I remember, what Holidays are truly about FAMILY! Even though, I could not go back in time, I could certainly make new memories for my daughter and let her enjoy the wonders of a boisterous family laughing by the fire place telling stories and eating great food; while all the kids stay up late enjoying their own games and staying up late.

However, once again I find myself with guarded expectations for the upcoming Holidays thinking about the fact that my dad may not be around any longer.

 I thought there must be a better way to survive the Holidays then worrying about what might happen. Will my Parkinson's cooperate so I can continue decorating home for my family and cooking their favorite meals? Should my dad pass before then will we be to devastated to celebrate?

So instead of Panicking or living in pain due to a loss of a loved one, or feeling numb because of the new Parkinson's diagnosis or some other chronic illness, here are a few tips which might help you survive:

• Prepare- don't let the roller coaster of emotions take over- prepare before hand by talking to your doctor about getting counseling or adding a temporary antidepressant or anxiety or increasing your PD meds.  If you think your loved one may not be around ( like my dad so we are planning an earlier thanksgiving to enjoy him while he is still able to eat and talk) or you might not be up for the challenge so plan an earlier festivity where you can have control.

• Accept- the difficulties of this time of year- family drama and all- tell your self this too SHALL PASS so go ahead and pass the plate around -dessert first- life is too short after all.

• Socialize- it is not good to retrieve into your shell during this time will only make you more sad, upset and could land you in the hospital. Force yourself to go out, mingle talk to people. Laughter is a great medicine for the soul and body.

• Lower your expectations- this way you wont be disappointed and you might even be pleasantly surprised.

• Coping Strategy- Take care of yourself first, have phone numbers readily available to people that can support you and get you out of a crisis should you have one (close friends, counselor, pastor, doctor etc.)

• Set boundaries- explain to others like family and friends that you may not be capable of keeping all commitments, that you need breaks, rest frequent meds, tell them what you can or cant do in regards to party planning or hosting. DONT ever let others guilt you over doing more than you can physically or emotionally handle. Also shop on line - this will eliminate a lot of stress of driving and fighting crowds, gift wrapping, shipping. you can do all this in one sitting. this is why the last few years on line shopping for the holidays has become my go to mode. 

references :
Petherbridge, Laura. Survival Tips for Handling the Holidays.

Depression as a Manifestation of Neurological Diseases like Parkinson's disease : By Dr. De Leon

“You treat a disease, you win, you lose. You treat a person, I guarantee you, you’ll win, no matter what the outcome.” Hunter – Patch Adams ( one of the best performances by R. Williams)
In the advent of Robin Williams untimely demise, a great deal of spark and conversation has ensued around the topics of mental illness including depression anxiety and bipolar diseases well as their connection to Neurodegenerative diseases like Parkinson's.

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

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

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

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

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

Women are twice as likely to suffer from depression than men which already puts PD women at higher morbidity this compounding effect maybe one of the reasons are now finding out that women with PD have more negative effects (meaning non-motor symptoms) like depression as opposed to men with PD who have more tremors (positive symptoms)...roughly about 50 % to 60 % of all PD patients suffer depression at one point during their illness and about 1/3 of patients present with depression as an early symptom before diagnosis. Yet despite this knowledge, the overall risk of suicide in PD is somewhat controversial.

One study, in 2001 in the U.S. including more than 144,000 people with PD found the rate of suicide in general population to be 10 times greater than in the Parkinson’s population while another study done in 2007 in Denmark found the rate of suicide among PD patients to be equal to those in the general population. Another in 2009 said PD patients although appearing to be at higher risk for depression, they truly were not at higher risk for suicide compared to general population of Denmark. Yet, one thing this study highlighted was the  increase in suicidal ideation (thoughts); this was found to be much greater among those with PD than in the general population. This last piece of information is vital to help us remember and keep in mind of the potential for a slip for those suffering from PD. The possibility of suicide is ALWAYS there and given the fact that some of the medications can trigger or worsen or even cause mood disorders, we have to be extra vigilant as patients, caregivers, and health care professionals to discuss this subject at every visit especially when there are concerns before symptoms get out of hand.

 There are many treatments for depression including medication. I have discovered that in PD patients, the first step is often a matter of adjusting medications if discussed early. In severe cases (ECT) electroconvulsive therapy has been instituted. Treatment of depression and other mood disorders often requires a team approach including a counselor, therapist (behavioral), psychiatrist, psychologist, and neurologist. (Don’t forget about caregivers too- they also have high rate of depression correlating with extent of care)

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

So, even though, we have lost a great entertainer and we mourn his loss, his passing although uncertain as to the cause which led him to his final acts of desperation has provided us with a stepping stone to a new beginning of discussions to remember to treat the person and NOT just the disease- no matter if its Parkinson’s, Alzheimer’s, Multiple sclerosis, Bipolar disease or another chronic illness.
Let us remember to keep in mind  all those that suffer mental illnesses like depression …..
If you have questions regarding your Parkinson’s or think that you might have Parkinson’s and depression

… I invite you to call the National HelpLine of the Parkinson’s Disease Foundation at (800) 457 6676 or email us at info@pdf.org.
Otherwise contact
www.Samaritans.org  or www.suicide.org/hotline/texas-suicide-hotlines.html or www.suicidepreventionlifeline.org/
www.Speakyourmindtexas.org

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).

Defeatparkinsons: Practical Tips for a Long Distance Caregiver : By ...

Defeatparkinsons: Practical Tips for a Long Distance Caregiver : By ...:             Recently with my dad's cancer rapidly escalating, I have had a crash course on being a long distance caregiver which I ...

Practical Tips for a Long Distance Caregiver : By Dr. De Leon

            Recently with my dad's cancer rapidly escalating, I have had a crash course on being a long distance caregiver which I was not entirely prepared for. Although, we knew his cancer was very aggressive and only diagnosed at  the beginning of the year, we were all very hopeful for a good prognosis and successful outcome. Since he was diagnosed being the eldest and physician of the family, I was automatically relegated the role of medical decision maker. 

Sometimes, when dealing with a loved ones chronic illness like Parkinson's or other medical or neurological disease, the choice of who will have medical power of attorney is not always as clear cut. In such cases a family meeting needs to take place as to who has time, understands  the patient’s wishes, and who will be available when the time comes to make necessary decision concerning health care issues concerning the loved one. The best person for this job, preferably will be someone who lives in  the same town or nearby and has a connection or bond with the patient already. However, is not always possible to appoint someone that is nearby or to be near our loved ones due to work or other professional and family responsibilities including our own illnesses.

As, I have learned  over this last year, taking care of someone from a distance can be extremely stressful for all involved, especially for the caregiver. I should know! I have gone back and forth to Houston at least a dozen times in the last month since father took  a turn for the worst. And even when I was not there physically, I was handling doctors calls at all hours trying to make decisions for my dad.

So, what can you do to prepare yourself should you be called upon to be the caregiver of a parent or loved one with a chronic illness like PD?

Here are a few tips to help make things easier for yourself and your loved one who is suffering from  a chronic illness and needs your support and help because they are too frail to care for themselves, or to sick to be effective advocates for themselves or have some other impediment like old age preventing them from achieving the best health care possible.

First, realize that this self less job is NOT going to be easy but well worth your time!.....

As the one in charge of my father's care, I have found that the hardest job of all is being his primary caregiver when I live far away especially when I, too, have a chronic illness to deal with (which is frequently the case for many caregivers....) or worst because we are living longer some of us senior citizens are being called upon to take care of  our even older more frail relatives ( parents, etc.). If this is the case take care of yourself first so that you can continue to care for others- you will be no good to anyone if you are ill yourself! After 2 weeks straight in the hospital, I had to take a small break to be able to recharge and be more effective at taking care of him and my mom. Learn to take needed rest to be more effective caregiver.

Being far away causes a type of inner turmoil deciding whether to move back closer, move your loved closer ( which is always the ideal but not always feasible due to many factors including socio economic and fact that person we are caring for mat simply be too sick and unstable to travel) to you. The other option is for you, the caregiver, to  travel back and forth  (as I have done)frequently to care for ailing loved one. Most often because of established family settings and careers of caregivers it is impossible to move closer to person in need. Learn to schedule time to spend one- on- one with loved one.

At same time, although  the patient maybe in need of  greater assistance they may be unwilling to admit and you must find a way to provide for them without insulting their pride or hurting their feelings. An open communication is the best policy in this case. Nevertheless, if they are of sound mind you have to respect their decision to stay in a familiar environment where they are comfortable and feel valued, even if you feel they might be better elsewhere. For instance, I thought my dad needed to go to  and would benefit more from a quick rehab stay to try to get stronger since he got so week during his nearly 15 days of  hospital stay. But, he refused and wanted only to convalesce at  home so we compromised and found a way for him to get the appropriate care that he needed at home so that he would be safe. Learn to compromise for betterment of loved one.

Being far away can sometimes be more overwhelming in dealing with a loved one’s chronic illness than being closed by. In many cases, the guilt and frustration of being far away and disconnected from the care of our loved ones leads to demanding and unreasonable expectations, advice, and demands for those that are around close to patient.(i.e. the team of health professionals and ancillary care staff).  These strong opinions as to what to do with mom or dad at times can only be counterproductive as well as serve at times to alienate those who are trying to offer help close by hurting the very feelings of the loved ones we are attempting to care for. So avoid walking in like a hurricane dictating changes to care plan established. This will only cause hard feelings and confusion in care. Learn to keep emotions in check and act on patients behalf always -portraying their wishes while addressing your concerns.

Also, try to be realistic in your promises. Don't promise things that might be impossible to keep like promising to maintaining them in their home  when they are alone, demented, or too weak to even perform normal activities of daily living. Express empathy and discuss concerns directly with loved ones. Learn what promises to make.

Being away sometimes does provide wisdom to see the big picture ...use this to your advantage. Be an advocate for your loved one. Sometimes they are too sick to speak for themselves or know what is going on around them.
Establish routines to help the infirm realize not only that you care but you are available when it is important. Learn how to be an effective advocate.

1) call home regularly- if  loved one is getting demented or elderly it helps to call them at  the same time -do it at  least once a week but should call more often if possible 2-3 x when people are chronically ill because things can change from day to day very quickly!
2) if possible, especially if live within driving distance at least a day's time visit at least a couple of times a month more often if possible. If farther away that requires long distance driving or flying think about going at least every 6 months.
3 )  help as much as possible; when you do visit, do not burden loved one by staying with him or her if struggling financially -stay at a hotel, buy food, try to pay some bills, perhaps they need extra supplies like pads if incontinent, ensure or meds that are not readily covered by Medicare etc.; if they have another caregiver there give them a respite while you take over.
4) when you visit loved one - make a point to go and meet with the physicians caring for your sick relative, establish rapport and encourage communication with you so they can let you know should there be any changes, questions or concerns. Make sure you have all the doctors’ phone numbers on speed dial and they should have yours in case of an emergency! if possible schedule doctors visits during your visit.
5) learn your loved ones needs and medication regimen as well as routine tests and doctors appointments so you can enquire about them to make sure they ( loved ones) are following through with care plan designed by their providers.

In the end remember, do what's best for your loved one...spend time with them and do not let cash flow or dysfunctional family dynamics get in the way of doing what is right for you & your loved one. The time you spend with them is priceless.
Handle with care- remember as Jim Rohn said; “ One person caring about another represents life's greatest value.”

No Se Aceptan Devoluciones : By Dr. De Leon

"...Two roads diverged in a wood, and I-
I took the one less traveled by,
And that has made all the difference."  Robert Frost

Creo que tal vez la mayoría de ustedes están familiarizados con la tierna y conmovedora película que lleva por título "No Se Aceptan Devoluciones."
Yo, al igual que Valentín, desde mi niñez aprendi que la vida no es tal y como me la imaginaba. Hay que luchar y aveces es necesario ser lanzado contra nuestra propia voluntad desde lo alto para aprender a volar. También yo, como el, me he dado cuenta que hay golpes más duros y más  difíciles que enfrentar en la vida que el ser impulsado de un barranco como cuando tuve que cuidar de mi abuela porque le dio el mal del Parkinsons o velar por mi abuelo por que despues de varios infartos cerebrales le cobraron la memoria. Pero al igual he tenido la gran fortuna de ser guiada por mis dos más grandes amores en esta vida. El primero ( mi abuelo) "me enseño  como estar preparad(a) para enfrentar la vida." Mi abuelo siempre me instruyo acerca de Dios, las artes, y las ciencias. El apesar de que nunca tuvo escuela formal su filosofia de “primero Dios y despues la sabiduria y el conocimiento” me ha servido en gran manera durante mi trayectoria en este mundo. Sus enseñanzas también fueron reenforzadas cuando me lanzo de un barranco hacia el fondo del río para que aprendiera a vivir sin miedo al igual que el padre de Valentín lo hiciera.
El segundo amor de mi vida y mi más grande amor "me enseño como enfrentar la vida sin estar (aún ) prepared(a)."

Mi amor me enseño a creer en mi misma, en mis sueños, en mi pasión por la medicina y la neurología, y en el poder de la determinación. Compartimos el mismo fervor y gracias a el es que tuve el valor de empezar a escribir.
Ambos me dieron alas y me ayudaron a conquistar ( alcanzar) mi meta de ayudar y trabajar con los pacientes del Parkinson's. Los dos no sólo dirigieron mis pasos hasta este momento pero continúan definiéndome en mi lucha cotidiana tratando de entender la ironía de la vida. Pues siendo aún especialista de desórdenes de movimientos y  mal del Parkinson's ahora soy yo la que necesito la ayuda, los doctores y las medicinas. Pero toda la experiencia hasta este momento ha sido en preparación para compartir mi vida con ustedes mis estimados lectores que al igual que yo han sufrido de algún contratiempos en sus vidas -vidas interrumpidas. Pero les dijo que aveces en medio del caos, uno puede encontrar paz. nuevas amistades, nuevas pasiones, salud interna, descubrir nuevos talentos, y hasta encontrar fuerzas y amor para cuidar y velar por alguien más.
A fin de cuenta, los 8 años de estudio de medicina resultan haber sido una inversión más grande y más valiosa de lo que yo misma me imaginaba. Y gracias a Dios que en esta vida no se aceptan devoluciones por que aunque tuviera la oportunidad de cambiarlo todo no lo haría. Porque gracias a esta jornada con la enfermedad del Parkinson's he descubierto que como una de las flores más fragantes y más hermosas de este mundo -una Flor distinguida por su hermoso aroma y su color blanco como plumas de espuma- la “reina de la noche”  o “cereus de la noche” como es conocida.  Las personas puden vivir desapercividas de ella toda la vida pero solo en medio de las tinieblas y la obscuridad a la media noche  la  pueden apreciar y disfrutar de su belleza incomparable  al igual que su aroma que puede llenar varios pisos con solo una flor. Y aunque sólo florean  por un breve instante su impacto es incalculable para aquellas personas que disfrutan de su fragancia mientras duran.

Instructions not Included: By Dr. De Leon

 “Be shepherds of God’s flock that is under your care- serving as overseers, not because you must but because you are willing….and when the Chief shepherd appears you will receive the crown of glory that will never fade away.”  I Peter 5:2-4

About a month ago, my mother called me in a panic not knowing what to do with my dad who was not “acting right,” worst he was “not being reasonable!”

As I proceeded to tell my mother how to handle my psychotic and confused father hearing the fear in my mother saying “you need to come over quick. Only you know how to calm him down.”  It occurred to me that the reason I can be so calm and able to handle my dad and most any psychotic individual is not any particular or unique talent that I posses. Aside from experience is thinking about and anticipating the other person’s needs where the goal is to maintain peace & serenity in the midst of a waging storm.

So, how do you do this when a loved one is hallucinating, aggressive, and even belligerent?

Although, our loved ones do not come with instructions on how to handle when they become psychotic it may serve you well to remember these simple rules to weather the storm unharmed.

First, rule take a deep breath and remain calm with a soft voice. Do not be confrontational, angry or frustrated this will only make matters worse since your loved one has no control of his behavior and may often not even know who you are. Thus, if you try to be too assertive they may perceive this as a personal attack and be “forced to defend” themselves which can result in trauma to either you or your loved one.

Second, be patient. Sometimes, particularly if your loved one is demented or has memory loss simply walking away for a few minutes will diffuse the problem. When you return you will often find your loved one in a peasant disposition. This may be a good time to administer their medication to help prevent further outbursts.

Third, be prepared. Discuss with your physician medication changes or additions and also have a plan should they become aggressive. Have emergency contact numbers handy or call 911 particularly if you or your loved one is in danger. This includes keeping dangerous objects or weapons out of sight as well as keys. Maintain open spaces to avoid falls and maintain a soothing environment. Safety is a priority for everyone involved.

Fourth, get help if you don’t feel up to the challenge. Caring for anyone with a chronic illness whether it be Parkinson’s or dementia can be both physically and emotionally exhausting. Therefore, if you cannot take care of yourself how you can take care of a loved one who depends on you physically and emotionally. If this is the case, you must ask for help from family, friends and or consider alternative care like nursing home. Make sure you tap into all resources available. Speak to your loved ones physician or provided for referral to social worker or home health agencies. You would be glad you did and your loved one would be best suited to have your love if not your time.

 

 

 

 

 

 

 

De Novo Artistic Talents in Parkinson's Disease By Dr. De Leon

 

 

            “Creativity involves breaking out of established patterns in order to look at things in a different way!” -Edward de Bono


The biggest challenged we all face in living with this illness is the disconnection that occurs gradually between our of minds and our bodies!

How do you survive? Much less thrive in a world designed for the abled not the disabled?  When each one of us still has dreams, ambitions, goals, families to raise, jobs and careers to pursue?

The answer lies perhaps in the brains ability to cope and form new connections from one neuron to another bypassing old defective ones! This is accomplished by the gift many have discovered after starting treatment with L-Dopa and dopamine agonists.

This is what makes our Journey with Parkinson's disease so very interesting.  When we are tested to our limits , we must find a way to rise above our circumstances despite our not so cooperative or disabled bodies to live and be happy!

We have all heard the old adage;   "necessity is the mother of invention or innovation!" When the roads between the neurons are obstructed or no longer functioning to full "speed" or "capacity" we feel the need to find another means of  arriving at the same destination in a place where we feel valued, unique and useful! After all being able to express ourselves in a singular fashion is what differentiates us from the rest of the animal world.

So, thank goodness that for a great number of us that have PD the principal treatment with dopamine replacement has created a much debated phenomenon- artistic expression.

Recently, there has been a great deal of talk and interest in this new phenomenon known as "artistic expressivity" in Parkinson patients.  There is a great debate among experts as to the origin because it is not entirely clear if this is de novo expression  or simply a surge of dormant innate talent. Although there are several theories one thing is for sure -all the increase in artistic phenomenology appears to be related to the intake of dopamine both L-Dopa and dopamine agonists. There have been reports of de novo sculptures and painters who previously had no experience or training prior to onset of disease as well as reports of increase desire to create and express themselves through whichever means possible whether that be through music, writing, humor or painting.

One theory proposes that this occurs due to a  sudden release from social inhibitions due to the effect of the dopamine or because dopamine is not only involved in motor control but in "pleasure and reward center" being able to achieve a new goal and have a new purpose may have its own unique drive!

Others opine that simply adding the medication allows them to become more artistically sensitive because they experience a greater desire to create when the dosage of dopamine increases.

In my profession, I always had to be logical and concise in my diagnosis and decision making but the inherent drive to always look at the bigger picture and take a holistic approach to life and medicine was always present. I have always loved color and admired great works of art even if I never considered myself as being "artistic." However, interestingly about the time I began to develop Parkinson symptoms I noticed I became much more bolder in my color schemes both in my home and office. At the time, I was building a new office which I helped to design. Turned out to be not just colorful, but uniquely bold. It was designed around my Parkinson patient's and other patients needs in mind but not lacking any flair of personality and air of museum!  Needless to say doctors offices around here have never been the same ever since. I started a trend- Before I sold my office, we even considered highlighting it in architects digest. But, since I was so ill all the décor was taken off before we could take pictures! My patients and drug reps and others used to comment on the décor and were always surprised to find out it was all my design. They even started suggesting that I have a separate desk for interior designing consultations...
So for me, I think it brings out the innate talents to the surface that somehow you once were to afraid to express!

No matter the reason  for the increase in artistic expressivity, I agree with the experts,  that the therapeutic value is immeasurable. This form of helping the brain cope with substantial losses has already been explored in other neurologic diseases like (vascular) dementias and strokes. Similarly, this type of "art therapy'  could hold great benefit to Parkinson patients helping them circumnavigate the motor problems or deficits. Thanks to the external stimuli the once impaired motor skills ( e.g. not able to button shirt or feed oneself) consumed by tremors, or rigidity or severe bradykenesia can become normal or almost normal when engaging in this type of therapy -like painting or sculpting. Allowing patients to perform fine motor skills not otherwise able to achieve in their normal activities. But the greatest benefit derived from allowing one to express itself artistically is the psychological and physiological well being that brings forth to all patients with Parkinson. Furthermore, being able to create makes people happy and provides hope while temporarily allowing one to forget about one's own disabilities.

Because I have seen the value of "art therapy" in other neurological disease, I firmly believe that opening oneself to this type of expression is not only psychologically beneficial. But, I firmly believe this may be the key to longevity and perhaps slowing down the disease process by the building of new connections - recruiting unused brain to take over the function of those parts no longer functioning well! This is just my theory- but for years we thought NOTHING could be done for STROKE patients until we discovered the power of rehab and although the infarcted (dead) brain usually does not recover a great deal of recovery goes on physically on an individual basis. We already know exercise seems to help the Parkinson patient- I think of art therapy and artistic expression as mental exercise!

So, go ahead don't be shy start a new painting,  music or writing class or whatever else makes you happy and allows you to use your fine motor skills! Engage your kids, grandkids...the more the merrier!

Remember, being Happy It's all a matter of perspective......
Is the glass half empty or half full?... a dear sweet friend of mine, who also had Parkinson's disease, .... thought me- WHO CARES?!!! just BE HAPPY YOU HAVE A GLASS WITH SOMETHING IN IT!!!!
As doctor Gene Cohen would say;  "art is like chocolate for the brain" and if chocolate has similar characteristics to dopamine-the essential deficient chemical in Parkinson patients then by all means let us continue expressing ourselves artistically to continue battling this chronic illness avoiding spiritual, mental and moral decay and find a greater quality of living  for us and our loved ones!
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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 www.facebook.com/defeatparkinsons101 you can also learn more about Parkinson's disease at www.pdf.org or at <a href="http://www.wemove.org">www.wemove.org</a>
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The power of Research in the Palm of YOUR Hands- Inspired by YOU - By Dr. De Leon: "Neurologists are a CRAZY bunch! Crazy enough ...

The power of Research in the Palm of YOUR Hands- Inspired by YOU - By Dr. De Leon:



"Neurologists are a CRAZY bunch! Crazy enough ...: "Neurologists are a CRAZY bunch! Crazy enough to believe that if they can find a cure for ONE neurodegenerative disease.....they ...

The power of Research in the Palm of your hands- Inspired by you! by Dr. De Leon

"Neurologists are a CRAZY bunch! Crazy enough to believe that if they can find a cure for ONE neurodegenerative disease.....they can find a cure for ALL!" ( Perception)

Well, I guess I always knew I was a little off my rocker.....so glad to be part of the dreamers.....it was the love of neuroscience and neurology that propelled me to study medicine and become a neurologist at a time when going into NEUROLOGY was EVEN LESS popular than it is now.....

The last neurology breakthrough had not occurred for at least 30 years previously and the BRAIN was EVEN more of an enigma than it is today. Neurology was tongue and cheeked referred to as "diagnose and adios!" by my classmates. I was often poked fun of by my friends and was considered a bit of a fool for going into such an obscure field when there had been no matches in neurology in the previous year and there were none in the year following my class.....

But, once a dreamer always a dreamer......

While completing my undergraduate degree at Penn, I had had a glimpse of what it could be ....the great power of the mind, the resilience of the human spirit, and the capacity with which individuals with severe traumatic brain injuries and devastating neurologic abnormalities were able to cope and persevere.....I knew they deserved better and I would do my best to help in what ever way I could advance that knowledge and understanding of the brain.... During those years, I often volunteered as a control subject for various neurological and psychological studies... little did I know then that some day I, too, would become a Parkinson's patient in need of the miracles of science to help my life become better and depend on those volunteers like myself to find answers and hopefully someday a cure!

As a resident, I volunteered in a few other studies that were testing specific medications for migraines ....and nothing is more rewarding than to see those studies completed and drugs come to market and even though for instance in one study I was given a higher dose which was not approved because not  statistically significantly better than a lower dose it helped me in my practice years later. For instance, if someone was prescribed that medication and took a larger dose because headache would not respond .....the fact that I had been on it for months without problems and others I knew had been on it without issues I was not so alarmed ...although warned dose not FDA approved at such doses!

Interestingly, as a medical student I designed a visual study to test a particular hypothesis in schizophrenics......and now 20 years later a very similar design is being tested for other dopamine systems like Parkinson's. Parkinson Plus and Huntington's Disease and the preliminary findings will be displayed in a poster at WCP 2013 in MONTREAL- very exciting since I am also one of the test subjects in this..... perhaps this will be one way we might be able to early diagnose PD or differentiate early on between the various dopamine illnesses! So, Stay tuned!!!! Data will be presented by Dr. Mya Schiess and her colleagues from UT Houston Medical Center.

So, as you can see ever since my undergraduate years I have participated in many research projects as a subject and have conducted many of my own....both in the basic science arena but primarily as a physician and now as a patient as well helping to understand the role of sleep and sleep disorders in PD as well as other studies like one mentioned above.

I can not underscore the significance that research both in the basic science and in the clinical arena represent for present and future generations of patients afflicted with devastating neurodegenerative diseases like Parkinson's and Alzheimer's to name a couple.

Thanks to the countless volunteers over the years who have given of themselves unselfishly along with the work of visionary neuroscientists we were able to have a boom in knowledge and medical treatment that began in the 90's known as the DECADE of the BRAIN. But, still we find that even though we have come so far our knowledge is still far inferior and lacking in many ways and the cure to Parkinson's and many other devastating neurodegenerative diseases yet alludes us.....but I have complete confidence that some day WE WILL UNLOCK the MYSTERIES within ......

But, in order to do this we all need to work together in unison for a common goal- the overall well being of Human kind and ease of suffering of all involved in such devastating neurodegenerative diseases.

So, how can you help?
......by playing a part in Parkinson's research.

You can participate in research as a patient or as a control.......

You maybe asking yourself the following questions:
I want to participate in a trial?
But, I am not sure if I can or if I qualify or which one to choose since there are so many? How do I know what trial is best for me?
First of all we have to remember that by definition a clinical TRIAL is an EXPERIMENT in which the outcome (answer) is not known!!!!
Therefore, if your sole purpose for participation is your individual well being you may be in for a world of heart break and disappointment!
Research should be approached as way of “paying it forward’!
Your sacrifice will be rewarded in the health of others to come and it is also a way of giving thanks to those that came before us and have sacrificed so much so that we may have the treatments we currently enjoy……

There are different trials and experiments with different outcomes and it would serve you to be well versed in order to make best informed decision FOR YOURSELF giving YOUR PRESENT CIRCUMSTANCES!!! ( This is crucial to remember because circumstances change and disease burden also changes usually increasing over time making some trials more difficult to enter into or be excluded from or included).

Always take into account ALL of your circumstances social, financial, medical before making a commitment or a decision that could potentially negatively impact your life
(because results are not known unless doing a phase 4 study trial in which results are already known for most part but need more specific information).
Here are the different types of trials:

Phase I...
first time trying new drug that has been extensively studied in animals or laboratory and hold promise. These are small 15-100 patients
Objectives:
Establish side effects/ tolerability
Observing patient response
Observe drug effect on patients disease

Phase 2
Establishing efficacy of drug compared to placebo - usually small

Phase 3
Confirmation of safety and efficacy-very large studies&gt; 1,000

FDA approval

Phase 4
Post marketing to gather further information , optimal use, treatment-risks and benefits
There are several types of trials:

Prevention trials
Screening trials
Diagnostic trials
Treatment trials
Quality of life trials
Compassionate use trials

The way to maximize success and a positive outcome for you is to consider these things before you engage in any trial: Look at what you are trying to get out of it ....is it purely to advance science or are you also hoping to gain something....if you are hoping to gain something ...are the expectations realistic? Are they in sink with the goals of the study? Never participate to please your doctor...that will only lead to heart break when results don't yield what you hope for....
because for us physicians and clinicians even when a study is negative we gleam and still are able to learn lots from what went wrong....but even though it may not help YOU in your present situation....BUT MOST DEFINETELY HELP THOSE in FUTURE GENERATIONS!!!!

Always consider your physical limitations and capabilities and also that of those who care for you.....Also, keep in mind to ALWAYS ask the researcher if the participation in this particular trial will preclude you from getting other surgeries or treatments!!! MOST IMPORTANT- YOUR WELL BEING comes FIRST!

But, Always look upon your participation in a trial as a rare privilege and honor to change the course of science and human nature!

If you follow these simple guidelines you should not only get benefit, and contribute to science BUT also have FUN!!!

Don't forget research is a TWO-WAY street OPEN communication is VITAL.....let your clinician know your concerns and also what interest and issues you have to better fit a study that suits your needs.....
With your help and participation and the growing scientific knowledge inspired by you, I believe that WE can FIND a CURE for Parkinson's Disease.....Until then you can join me in my quest and be content in being called dreamers....for it is the dreamers with an exorbitant imagination that have the POWER to change the world! Even if we are but a CRAZY BUNCH!

Join us at PDF's Parkinson's Advocate in Research (PAIR) program to bring about better treatments and quality of life to all of us who live with Parkinson's Disease.
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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 www.facebook.com/defeatparkinsons101 you can also learn more about Parkinson's disease at  <a href="http://www.pdf.org">www.pdf.org</a>  or at <a href="http://www.wemove.org">www.wemove.org</a>
for more information about research trials available for Parkinsons go to www.foxtrialfinder.org

http://grants.nih.gov/grants/guide/notice-files/NOT-NS-13-035.html     a place where you may go to put your input as to what is needed in research to find cure for PD