Could I have Lewy Body Dementia?: by Dr. De Leon

I used to fear that taking medication would change my personality; now i fear that it won’t.” ~David Levy

In the last month and a half I have been dealing with (upper respiratory) infection after infection which have really got me thinking about the causes. Plus the severe dysautonomia which I have experienced recently, being a neurologists, I thought oh my!- this is one of the things that happens and usually the reason (recurrent infections) why people with Lewy body dementia (LBD) succumb to the illness leading to their demise.

I don’t have LBD however, i thought it would be a good time to discuss the clinical presentation of this illness compared to Parkinson’s. Funny thing though, I was commenting this observation with my BFF whom i was traveling with and I said jokingly – “ I know i am not demented” so can’t have that awful disease. She looked at me and responded ‘no not like all the people we have met with disease.’ I gestured in agreement. “but, your personality…” I immediately sat up becoming paranoid, ‘what’s wrong with my personality?’ I asked. She just smiled at me.

Sure I have become more outspoken but that is a factor of my getting older i assume not because of anything organic but just to make sure i had to ask a few people that known me for a long time and the conclusion- i am same crazy, stubborn, energetic, outspoken girl. ( ooh-thank God, what a relief- and don’t ask me to remember cliches because I have always gotten mixed up!)

But unfortunately the reality is that there are too many people out there who do suffer from this terrible disease which is a combination of Parkinson’s and frontal dementia/ Alzheimer’s.  I have seen too many friends and patients spiral down quickly.

So, I would like to talk about what we know about LBD and how we may improve the lives of the patients and caregivers. unfortunately, there is no cure and no specific treatment for this disease as with many other neurological illnesses.

This is the 3rd most common type of dementia affecting ~5% of those older than 75 years of age.

Symptoms which are features of both Alzheimer and Parkinson’s make it a particular challenge in diagnosing. However, the KEY  to diagnosis is the presence of pronounced visual hallucinations, psychiatric overtones and autoimmune problems from day one which then leads to a rapid and pronounced cognitive impairment, along with rigidity, freezing, and severe Rem behavior (often preceding) cognitive symptoms.

Interestingly, Sleep disturbances like REM behavior occurs in about 60% of  parkinson’s patients while an upwards of  80% is seen in MSA ( multi-system atrophy) and LBD.

Most people live on average of 5-8 years after diagnosis but some have lived up to 20 years.

Clinically:  Patients have vacillating or oscillating symptoms fluctuating from near normal to severely abnormal.  These episodes of downward spiral are typically triggered by infection and medications. These patients often have periods where they  return to normal or high function making some people think they are malingering or feigning illness. There is particular variation in cognition; well one day and confused and forgetful the next ..may appear as if doing on purpose which has infuriated and frustrated many a caregiver.  They also exhibit decreased attention, increased sleepiness, and alertness with patterns of normalcy interspersed  with decreased need for sleep, increased alertness and attentiveness. (like a yo-yo and in a step down progression each time rebounding less and less frequently back to normal).

Evolution of disease:

Prominent visual hallucinations, confusion, decreased concentration and alertness, sleep problems followed by apathy, (aphasia) speech impediments, swallowing trouble and paranoid delusion. initial treatment with Namenda makes cognition worse and worsens significantly with dopamine agonists and anticholinergic medications. Frequent falls are common often due to orhtostatic problems and fainting from autonomic dysfunction.

Subsequently, they become very weak developing frequent infections like pneumonia and other immunological infections leading to demise. by this time speech is usually very soft whisper almost inaudible or absent. This is the end stage phase

 

What are the risk factors?

  • older age >60
  • male gender
  • family history of PD or LBD
  • sleep disorder increases risk of  LBD five -fold
  • same risk factors as stroke (HTN, DM, Cholesterol) – linking it to a possible vascular etiology; interestingly not smoking just like in PD it seems to confer a positive benefit- however this does not mean you should take up smoking!
  • strokes
  • low education
  • attention deficit disorder

diagnosis:

  • clinical
  • Dat scan shows low dopamine uptake
  • precision ct scan reveals abnormal uptake in the occipital and parietal lobes

Treatments:

  • This is symptomatic and supportive-treat dementia aggressively with medicines like  Exelon, Aricept or Razadyne.
  • use of antipsychotics like seroquel and clozaril
  • initiate speech therapy early on to improve not only swallowing but also speech and communication; consider feeding tube if necessary as well.
  • PT to prevent falling
  • monitor HTN, sugars
  • prevent infections as much as possible- constant vigilance, get vaccines if needed ahead of time
  • stay hydrated
  • treat with bp meds and orthostatic meds
  • most importantly try to establish a scheduled sleep pattern and use meds to help sleep.
  • discuss end of  life plans, hospice, dNr ( donot resucitate, etc)

@copyright 2017

all rights reserved Maria De Leon

 

An Overview of Syndromes with Dementia & Parkinson’s – Diagnosis, Treatment & Prognosis. By Dr. De Leon

There has been much speculation since actor Robin Williams died regarding the circumstances that led to his demise.  Many wonder whether his neurological disease Lewy Body Dementia (LBD) diagnosed only after autopsy triggered his suicide.  One will never know for certain what drove this brilliantly talented man to the edge of desperation putting an end to his own life.

However, because of the tragic loss of such beloved celebrity who initially had been given a diagnosis of PD while living only to confirm  another less common disease LBD after his death,  the question still lingers in everyone’s mind could they or their loved ones be afflicted with such  disease and not know it?- such a strange word for so many…

Thus, I would like to discuss the topic of dementia in its various forms and its relation to Parkinson’s disease.

First, I would like  to put everything in perspective- dementia is defined as loss of previously acquired cognitive skills including language and complex motor skills, of which Alzheimer’s is by far the most common type affecting well over 5 million American or about 1/9 patients 65 or older.

Dementia is then subdivided in to cortical (pertaining to higher-cerebral- cortex and cognitive function such as memory and language) and subcortical (involving the structures ‘underneath’ the cerebral cortex –i.e. the connections between the different lobes). Subcortical dementia is a clinical syndrome characterized by mental slowness, depression, apathy, impaired cognition and forgetfulness.

Unlike Alzheimer’s (cortical dementia) where there is an actual loss of neurons- in Parkinson’s dementia since it’s a subcortical dementia, the neurons are preserved only the chemicals are diminished, and the wiring is faulty making retrieval cumbersome and slow. In Alzheimer’s, as in other forms of cortical dementia, the information once lost is gone- reason why giving cues does not help to remember as it does for those suffering subcortical dementia where Parkinson’s dementia is the prototype.  Therefore, in subcortical dementias like  seen in Parkinson’s the possibility exists of being able to create new pathways between the various structures of the brain thus potentially thwarting the progression nor severity of disease.  this is why it is EXTREMELY important to obtain early diagnosis by a neurologists because although there is no cure for dementia of any type subcortical ones can be slowed down significantly or halted if correct diagnosis is given and treatment started early. One of the biggest therapeutic advantages to a better prognosis and quality of life is the institution of non-traditional modalities such as exercise and art therapy in addition to traditional treatments.

Some neurologists / movement disorder specialist including myself believe there is a spectrum of disease in which you have Alzheimer’s on one end of the spectrum with Parkinson’s at the other end  …with about 2 million people. Then you can have as many diseases as you can think of with various combinations ..including all the Parkinson’s plus syndromes (MSA, PSP, etc. closer to PD) & dementia syndromes like Fronto-temporal dementia, pick’s disease, etc.

Alzheimer’s

Parkinson’s

Lewy body dementia lies at the crux of the see-saw smack down the middle. Then there are those rare patients who also truly have BOTH Parkinson’s and Alzheimer’s but those are even more rare. The reality is that many patients have mixed symptoms most frequently due to vascular disease. This is why it is imperative to ALWAYS have a brain scan at onset of diagnosis or if things don’t match up. More PD patients are in fact more likely to have a variation of Parkinson’s and vascular dementia then Alzheimer’s or other PD Syndromes. This is because most Alzheimer patients are typically otherwise extremely healthy and have no other risk factors while (thus usually look normal in appearance and mannerism at presentation) those with Parkinson’s disease can have and usually do have other illnesses including risks for stroke ( which I believe is greatly enhanced by medication effect especially in woman as a study of PD women showed higher incidence of stroke compared to men- most likely due to uncontrolled hypertension caused by dopamine and dopamine agonists).

So how do you diagnose?-

First, we must remember that of all the dementias, Alzheimer’s is by far the most common followed by vascular dementia caused by strokes. Of course by far Parkinson’s is the more common of the movement disorders second only to essential tremors. After understanding of this knowledge, it is both a matter of recognition of patterns (comes only through extensive training and years of seeing patients in a particular field- hence need for neurologists/MDS) and a numbers game in diagnosing- meaning that common things happen commonly. Yet, a GOOD NEUROLOGISTS ALWAYS HAS THE RARE DISEASES IN THE BACK OF THEIR MIND when things are not presenting, progressing or responding as they should!

Second, listening to the patient and taking a good history is key which means that you as a patient or caregiver MUST try to give as concise and detailed account as possible of symptoms including timeline –

  • what came first?
  • how long and far between onset of other symptoms?
  • are symptoms rapidly progressing?
  • are they progressing in a step like manner – meaning worsening then plateauing then declining again?

Third, equally important, especially when symptoms are very early and unclear, is to have continuity of care by same doctor for several months until picture is cleared- sometimes unfortunately we become impatient and want to know what is wrong with us so desperately that we jump from doctor to doctor giving them only a glimpse into the real pathology. Thus, each doctor only sees just one moment in time instead of the whole picture making diagnosis more difficult for any one person until it becomes so obvious. However, by the time it is easy to diagnose even by none experts frequently so much time has been lost that treatments may be ineffective due to advancing disease ultimately robbing us of not only our peace of mind but also diminishing our quality of life.

Characteristics of common dementias with/without Parkinson’s:

Alzheimer’s disease is loss  of speech& language, along with memory loss. Immediate or recent memory is impaired while remote memory is preserved. Patient’s usually  get lost in familiar places, do not recognize familiar faces, experience loss of previously acquired skills- complex motor skills. Initial presentation includes loss of smell, irritability, depression, personality changes, and apathy. Withdrawal is a common presenting characteristics along with fender benders  – these patients ARE NOT hallucinating when they first present. If diagnosed earl, they respond well to acetylcholinesterase inhibitor (e.g. Aricept, Razadyne, Exelon) and Namenda (Memantine) which can not only improve quality of life but delay hospitalization into a facility. It is a chronic progressive disease which occurs over 20-30 years. The incidence increases with age- although not typically hereditary there are two Alzheimer’s genes which are familial Presenilin 1 & 2. Risks of developing ALZHEIMER’S are illiteracy, low education, low socioeconomics, and lack of exercise, high blood pressure and diabetes.

 

 

 

Lewy body dementia – main characteristic is hallucinations (e.g. auditory, olfactory, visual, tactile, and gustatory) at the onset of disease, along with vivid dreaming, severe REM behavior, and early visuospatial impairment in absence of memory loss along with stiffness, slowness, marked bowel, & bladder problems. The key is that introduction to dopamine agonists and dopamine exacerbates or brings to the forefront the hallucinations. Also Namenda usually given for dementia /Alzheimer’s will worsen symptoms of hallucination, becoming psychotic delusional and extremely agitated.  However, other memory medicines can improve quality of life. Incidence of LBD is. 21/100,000.  This type of illness is a rapidly progressive disease 5-8 years. More common in men 4 to 1 usually in their 70’s.

 

Fronto-Temporal dementia a.k.a. Pick’s disease– they have significant behavioral and personality changes, interpersonal relationships, including language disturbances and alterations in muscle/motor function. They are caused by disorders involving the protein called TDP43  or the tau protein– why the lobe frontal lobe no one really knows. They usually occur in the 50’s and 60’s however some people may develop as early as their 20’s or as late as their 80’s.  there is a behavior variant  and a language variant. both the behavioral variant and the language variant are much less common than Alzheimer’s disease in those over 65 years of age. However, in the 45-65 year range both of these are as common as young onset Alzheimer’s.  Currently it is estimated that around 60,000 people have FTD the majority of whom are in the young age group. the thing that will distinguish Alzheimer’s and FTD is progression and genetic abnormalities. However,what is interesting is the fact that within the realm of  FTD’s we have PSP (Progressive Supranuclear Palsy) and CBGD.

  •  CBGD (corticobasal ganglionic degeneration) presentation includes more personality and behavior changes at the beginning of disease like FTD’s, even in absence of memory loss. Patients have trouble producing and comprehending language. Both of these have a quick rapid progression. FTD is closer to Alzheimer’s so no PD symptoms unlike CBGD which commonly is unilateral (even when it becomes bilateral there is an obvious dominance); has alien hand. Typical duration of CBGD is 6 years. Patients with CBGD usually are between 50- 70 years of age and it comprises about 1% of population. Tremors, rigidity, muscle spasm, involuntary eyelid spasm, sensory loss, significant swallowing difficulty are also part of the presentation and clinical picture. There is no good treatment  for these patients; they poor response to both Alzheimer’s drugs and to PD meds because they have both cortical and subcortical dementia. The best treatment especially early on is speech  and physical therapy ; when started early in disease process it can significantly improve quality of life particularly since dysphasia and dysarthria (slurred speech) are early signs leading to frequent aspiration and aspiration pneumonias.  These patients also have significant apraxia – this is the inability to perform purposeful movements especially when asked such as making an “okay” sign with your hands.

 

  • PSP-a.k.a.- Steele-Richardson-Olswenski syndrome- progressive supranuclear palsy-initial symptom in 2/3 of cases is loss of balance , difficulty walking-fast walking bumping into objects or people, and changes in posture- lunging forward when mobilizing. the other common early signs include general slowing of movement, change in personality and visual symptoms due to restricted eye movements especially in the vertical plane-because they can look down very well people fall frequently because cant see especially when stepping off a curb or are increasingly messy when eating because can’t see the food. Later dementia develops affecting loss of inhibition  and difficulty organizing information. They also have  muscle stiffness, swallowing difficulty (usually cause of demise), slurring of speech. Men and women affected equally, about 6/100,000. A poor response to dopamine along with symmetrical onset is the big CLUE along with abnormal eye function which includes eyelid apraxia.

Parkinson’s dementia -early presentation is classic Parkinson’s symptoms which include tremors, slowness, stiffness, and gait impairment; only after 10 plus years do patients get dementia of PD which occurs in up to 50% of individuals. – These patients respond well to PD meds and to acetylcholinesterase inhibitors as well as to Namenda. Exelon works great as do combination of Aricept and Namenda extended release or short acting (now in single formulary called Namzaric). Treatment at early signs is key preceded by adjustment of dopamine levels because the brain is also a muscle and just like the muscles get stiff and slow due to lack of dopamine so does the brain resulting in slow retrieval and weak connections- sometimes all it needs is an extra kick dose of dopamine. Presentation is usually depression, apathy and forgetfulness which is remedied by giving cues. Hallucinations do not occur until late stage and typically are visual. Most visual hallucinations in advance stages are usually benign. A common theme is that of children which typically do not require medication.

Recommended treatment for PD dementia with antipsychotics like Seroquel or Clozaril only if hallucinations are frightening or interfering with care or activities of daily living but first recommend adjusting PD doses then adding acetyl cholinesterase inhibitor if not better then antipsychotic as last result. I recommend that if there is question of memory problems talk to your doctor ASAP and obtain a neuropsych evaluation if necessary which will point to type of dementia cortical/subcortical or both? If have any memory problems or problems with speech, language, gait, coordination, tremors, stiffness or slowness seek first attention of a neurologist who can assess whether a movement disorder specialist is needed.

In summary, knowing the facts will aid in early detection and treatment. In order to achieve this we must be proactive and practice self advocacy because after -all no one knows your capabilities better than you or your spouse/partner so don’t delay seeking medical attention from a NEUROLOGIST if you or loved one have any of these symptoms or have family history of cognitive problems. Plus, do not forget to exercise at least 15 minute walk 3x a day  because can significantly decrease risk of Alzheimer’s dementia especially in women. It may also possibly improve or decrease risk of those with subcortical dementia’s like PD involving basal ganglia by increasing blood and oxygen perfusion to this area.  Also because the brain is a muscle we must remember that if we don’t use it atrophies. Therefore, the more you stimulate it and challenge it the more connections it will develop and the lower the risk for getting dementias of any type.

     So as we approach anew year make a resolution to Go ahead learn a new language, travel more, take up a new hobby, play with your grandkids, and socialize with your friends outside of social media. These things will not cure our illnesses or prevent us from getting them in the first place but can greatly shift the balance to our favor by decreasing risk of becoming severely cognitively impaired.

Tips to dealing with Apathy : by Dr. De Leon

Scientists announced today that they have discovered a cure for apathy. However, they claim that no one has shown the slightest interest in it.” ~ George Carlin

I hear the word apathy tossed around all over the place from different places and people who use this term loosely to imply “lack of interest,” or ‘deep depression.’

However, as a neurologist the word apathy has not only a very special meaning but it also carries with it a specific diagnosis.

So, what does apathy really mean. Apathy as described by the Webster dictionary as  “a state of perfunctoriness.” I love that word.  It is a state of complete and total indifference in all realms of our being, emotional, spiritual, and social. People who suffer from apathy are completely and utterly devoid of concern, emotions, and feelings. Not because they don’t want to but because they are incapable of caring due to disconnect of fronto-cortical pathways.

Therefore, the term “apathy”  in neurology is always a harbinger of  brain illness particularly organic etiologies such as head injury, strokes, tumors, schizophrenia (although the latter usually considered a mental illness -I maintain it is an organic neurological disease because of involvement of dopamine- in this case too much) and of course the number one cause and almost synonymous with term of apathy is dementia – (e.g. Alzheimer’s, Parkinson’s, vascular, Lewy body, fronto temporal, etc.)

Therefore, giving someone a diagnosis of apathy in of itself is a poor prognosis which implies typically a rapid cognitive decline.

Having said this, one must always identify the cause and try to treat it as best as possible and prevent further cognitive decline.

Medications employed in the treatment of apathy:

1) [of course are] medications used to treat dementia – i.e the acetylcholinesterase inhibitors like Exelon (Rivastigmine), Aricept (Donezepil), Razadyne (Galantimine), and Namenda (Memantine) an NMDA inhibitor. Several of these compounds have extended release doses and come either in patch or liquid as well or both.

Other medications include:

2) Dopamine replacement– no better feel good drug than dopamine especially if deficiency is what is causing the apathy but it is not always as easy as that in dementia patients particularly those who have dementia of Parkinson’s disease or other dementias associated with parkinsonism because the addition of dopamine will increase visual hallucinations and other hallucinations and worsen confusion. therefore, this has to be measured in scale of risk and benefits but usually in the majority of cases in PD associated apathy combined with other medications like antichlolinerasterase and antipsychotics.

3) Stimulants like Provigil (Modafinil)/ Nuvigil – used in the treatment of Narcolepsy but also for hypersomnolance or increased sleepiness.  I prefer  this class as first line of treatment over amphetamines after dopamine replacement.  In my practice, I  had a moderate  to great success with them.  Other stimulants include amphetamine derivatives such as those employed in the treatment of attention deficit disorder (Methylphenidate-e.g. Concerta, Ritalin; Aderall; Straterra).

4) Antipsychotics are also a good source to combat apathy but best if use atypical drugs like Clozaril or Seroquel because of decrease potential for extrapyramidal side effects like tardive (late onset) dyskinesias and parkinsonism. This is especially crucial if already dealing with apathy related to Parkinson’s or Parkinson’s plus syndrome. We don’t want to make motor symptoms worse resulting in freezing and falls or increase dyskenesias.

5) Anti -depressantsSsri’s/SNri’s -E.g. Zoloft, Lexapro, Effexor, Cymbalta, etc.

6) ECT– electro convulsive therapy when all else fails -it works tremendously well despite all of the bad the media has given it based on past history and  portrayal of patient abuse in movies like One Flew Over the Cuckoo’s Nest. Currently, there are several state of the art centers in the country which provide these much needed services which can help patients  have a higher quality of life than the would otherwise -one may be near you. The alternative is earlier institutionalization.

As always early recognition of apathy is Key to improved quality of life by securing proper diagnosis followed by prolonged watchful supervision and treatment by a team of experts which include Neurologist, Neuropsychologist, counselors, social workers, therapist and loved ones to help with financial issues of caring for a chronically ill patient as well as help prolong nursing home admittance for as long as possible.

Depression in Neurological Diseases like Parkinson’s: 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 http://www.suicidepreventionlifeline.org/
http://www.Speakyourmindtexas.org

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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

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

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

To Sleep perchance to dream“- William Shakespeare, Hamlet

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

Sleep study! Wow what an ordeal?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Good luck and happy dreams!

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

Dr. M. De Leon is a retired movement disorder specialist, PPAC member and research advocate for PDF (Parkinson’s Disease Foundation); Texas State Assistant Director for PAN (Parkinson’s Action Network). You can learn more about her work at http://www.facebook.com/defeatparkinsons101 you can also learn more about Parkinson’s disease at www.pdf.org or at www.wemove.org; http://www.aan.org, http://www.defeatparkinsons.blogspot.com
may also contact me at
deleonenterprises3@yahoo.com

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Always Important to KNOW WHAT YOU ARE TAKING!

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Dr. M. De Leon is a retired movement disorder specialist, PPAC member and research advocate for PDF; Texas State Assistant Director for PAN (Parkinson’s Action Network). You can learn more about her work at http://www.facebook.com/defeatparkinsons101 you can also learn more about Parkinson’s disease at www.pdf.org or at www.wemove.org; http://www.alz.org, http://www.aan.org, http://www.defeatparkinsons.blogspot.com
may also contact me at
deleonenterprises3@yahoo.com

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

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