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