alzheimers, depression and suicide, depression/suicide in neurological diseases, parkinson's disease, suicide in parkinson's

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

chronic illness, drooling & swallowing, parkinson's disease, parkinsons health and beauty tips

10 Tips for Managing Drooling in Parkinson’s: by Dr. De Leon

Sialorrhea or drooling as is commonly known refers to pooling of saliva in the mouth. It occurs around 50-80% of all Parkinson’s patients particularly in men. The excess saliva then begins to literally spew out because of difficulty swallowing. Normally we produce about a liter of saliva a day which helps us break down food and keep our mouths moist and protect against bacterial infections in the gums. Ordinarily, we swallow such quantities without giving it a second thought. However, as Parkinson’s disease advances and our swallowing muscles become stiffer and slower it is sometimes difficult to keep up with the enormous production and some of it unfortunately ends up around the outside of our mouths or spilling unto our clothing causing great social embarrassment. But also because it lingers in the corners of our mouths it can cause sores and tissue break down as well as give us halitosis (bad -stale breath). Worst if we develop a large amount of pooling of saliva we can accidentally swallow a big bolus or gulp in to the lungs causing “aspiration pneumonia” landing patients inadvertently into the hospital.

Therefore, it is extremely important that if you are experiencing excessive saliva or drooling that you discuss with your physician immediately to avoid aspiration, anxiety, or social embarrassment. You no longer have to be ashamed or self conscious in public while eating, talking or going out because you have to carry around a try or feminine pad as several of my patients have done in desperation in an attempt to collect all the excess saliva.

This dramatic sight ingrained in my brain permanently is the reason why I write about this so no one has to suffer this type of humiliation any further.

 Here are some helpful tips & treatments options to help with this pesky and often overlooked problem in hopes of returning patients to a normal life.

1) First and foremost, there needs to be a medication adjustment – typically an increase of medication (levodopa or dopa agonists) to improve stiffness and slowness of muscles involved in swallowing including tongue, lips etc.

2) speech therapy to strengthen muscles around the lips and also swallowing should also be instituted concomitantly particularly to avoid aspiration.

3) physical/ occupational therapy along with increase medications should also be considered  to improve posture because the tendency to stoop forward with head forward and chin outward (typical Parkinson’s stance) causes pooling of saliva to front of mouth along with the help of gravity easier. The team of expert therapist will help instruct on proper sitting techniques as well as cues to-try to keep head up so that saliva naturally drains to the back. Sitting upright also helps saliva go down so once again cues can be thought to remember to do this at all times.

4) medications like Levsin may help to reduce drooling. However, these may not be used if severe constipation or extremely slow gut motility is present.

5) Tricyclics medications (e.g. Elavil) because of its side effects especially tendency to dry mouth are sometimes good starts and frequently used but these have to be used with caution because in the elderly or those that have problems with orthostatic hypotension, severe constipation this class of medication can make things worse for those people.

6) extremely important is to review medication list with your physician because some medications are known to cause increase salivation like some antipsychotics such as Clozapine.

7) keep hard candy in mouth (sucking it) sugar free preferably to avoid cavities and also because sugary foods increase production of saliva. Therefore, minimize sugary types of foods. If you must have chocolate try sugar free- Godiva has some excellent choices! You may also suck on ice chips to decrease drooling.

8) drink fluids more frequently to “wash down” saliva; preferably drink water which will also help decrease constipation.

9) do lip exercises to improve lip seal and prevent saliva dripping out – hold a wide smile (bet you makes you feel better too!) then pucker lips like you are going to blow a kiss or whistle- do these several times a day. Or suck from straw when you drink.

10)  Anticholinergic drugs (e.g. Artane or antihistamines) may also be use. However, not everyone is able to use these because of cognitive problems it can cause so if someone is already. confused, forgetful or hallucinating this will not be a good choice.

****Best remedy I have found however is injection of Botox into salivary gland …this is local treatment with little or no side effects especially systemic ( will not interfere with other medications) and duration of Botox last anywhere from 3-6 months sometimes longer. Now, fortunately we have different types of botulinum toxin so you have many choices. In past, with severe cases there have been reports of radiation to salivary glands to make less effective or surgically removing salivary glands. But, I don’t commend these drastic techniques with all the other treatments unless everything has failed and drooling extremely severe causing aspiration especially in light of fact that we need saliva to aid in digestion, lubrication of our mouths and throat and prevent plaque buildup. If our mouths become too dry (Xerostomia) as I mentioned in another blog this can lead to severe pain (‘burning mouth syndrome’). I have had excellent results with Botox injections over the years without need for more drastic measures. *******

Finally, brush your teeth regularly after each meal to reduce probability of infection that may set in due to stagnant saliva.

Nevertheless, all of these treatments are subject to your own physicians discretion and do not recommend making any alterations to your medicines without first discussing with your doctor or healthcare provider.

FYI -20% of PD patients also experience post nasal drip (dripping of mucous into throat) worst at night causing cough, sneezing, and interfering with sleep. By drying out mucous with these medications and remedies this problem most likely will be resolved as well. Sometimes your doctor may prescribe a decongestant as well.

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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

chronic illness, parkinson's disease, parkinsons health and beauty tips, sleep disorders in parkinson's, tips for sleep hygiene in PD

Tips for Dealing with Sleep Disorders in Parkinson’s : by Dr. De Leon

As many of you know sleep problems can wreak havoc with our lives if f we don’t get enough rest we are liable to turn from a mild manner soft spoken individual to an irritable cranky creature!

Not only does poor sleep affect our mood but also causes poor concentration leading to memory loss, fatigue, increase weight, and poor judgment. All of these can mimic actual Parkinson’s symptoms either from disease or as side effect of medications.

Therefore, when we don’t get enough sleep we are doing ourselves a disservice and making our symptoms seem worse while making our doctors jobs more difficult as they try to sort out the source. One way to avoid this confusion is to tell your doctor immediately if you are having trouble with sleep and be specific. The more details you tell them the better they are able to help you get back on your feet.

Keep a record of your problem :

1) Is the problem staying asleep

2) Falling asleep

3) Pain at night

4) Restless legs

5) Trouble turning- getting stuck in one place or in the sheets

6) Going to bathroom to often (as you are falling as sleep or does it awake you from sleep)

7) Trouble breathing and snoring

8)  Acting out dreams at night and or talking during sleep

9) Vivid dreaming and or hallucinations

10) Disturbance in sleep wake cycle-sleepy during day and awake at night

Sleep is a way we humans encode all the information we have learned during the day and store for long term. If sleep becomes interrupted enough this will lead to short term memory loss making it seem like you might have cognitive problems when I fact may just be sleep deprived. However, for those that do have early cognitive problems can through them into full blown psychosis and hallucinations and for those that have advance dementia or memory loss it will make things much worst. Not only this but also increase high blood pressure and risk of having a stroke and early death particularly in the presence of sleep apnea. As we age, our bodies do often require less sleep and there is a slight shift in cycle going to bed earlier and awaking earlier. But most people according to studies still need a good 7-8 hours to function optimally.

Some of the sleep problems can be treated more easily than others. For instance, for shift in awake cycle …two ways to treat one is to treat with medications like Provigil to maintain alert during daytime and prevent falling asleep so can then fall asleep at night and / or maintain a routine sleep hygiene where no naps are allowed during the daytime.  You MUST also arise at same time and go to bed at same time daily. Plus only use bedroom to sleep or  for sexual activities. Keep bedroom dark at a comfortable temperature. Do not try to force sleep. If you cannot sleep get out of bed and move to a separate room to read or watch TV or listen to soothing music. Go back to bed, if still unable to sleep repeat cycle. Do not exercise at least 3 hours before bedtime. If you have to go to bathroom a lot at night avoid drinking fluids 3 hours prior to bed time. Ask physician for medications to help with falling asleep or staying  asleep if none of these things work…there are many options.

If you are snoring and having sleep apnea your doctor will recommend a sleep study test-called a sonogram. I believe every Parkinson’s patient should have this done at some point in their disease process. This will also help evaluate for restless leg and periodic leg movements as well as REM behavior ( acting out in sleep your dreams when your body is supposed to be paralyzed!) so that adequate treatments can then be given. One sign that you might have sleep apnea is early morning headache or awaking from sleep with headache. Tegretol or Klonopin are some of the medications used for REM sleep disorders.

Do not drink alcohol particularly after dinner since this tends to interfere with sleep pattern may help to fall asleep quickly but will often arouse you because it causes shallow sleep patterns plus it can severely worsen sleep apnea. If trouble falling asleep- Do Not drink caffeinated beverages after noon and limit amount to one a day as well as try taking decaf products. These still contain caffeine only 50% less so you won’t feel totally deprived. If you smoke consider cessation since this is a stimulant. Increase physical activity– being active helps to deepen sleep.

If pain is a factor- your doctor will have to evaluate the source and treat accordingly. As he or she will also have to adjust dosages of medications if experiencing wearing off or freezing in bed and getting stuck. Likewise if having hallucinations. Therefore, if you are having any sleep disturbances make sure you speak with your physician as soon as possible since there is usually a good and effective treatment for most of the problems of sleep. Make sure you do not make any changes to your medication regimen without first consulting your doctor.

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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

fall prevention in parkinsons, falls in parkinsons, parkinson's disease, parkinsons health and beauty tips

Parkinson’s & Fall Prevention : By Dr. De Leon

 

 

We all know that one of the biggest problems in Parkinson’s is the risk of falls especially as we age and the disease advances the risk seems to increase exponentially.  Recently, there was a new consensus released by the Academy of neurology offering tips on fall prevention since according to the AAN 50% of all Parkinson’s patients have a fall within their last visit to a physician- this is not only astounding but also points to a greater problem that either we as physicians are not spending enough time evaluating for risks and that we as patients are also minimizing our problems with gait.

In an effort to prevent further injury, I will try to recapitulate some of the recommendations and provide some of my own personal expertise from my own experience.  I heard it say in one talk presented by PDF expert that we as PD patients begin to experience abnormal strides in gait even from early stage even before we are completely aware that we have a problem, we are already taking smaller steps and unsteady. If we wait to fall or have a loved one fall to take preventive measures, we have missed the mark. We are not only increasing the risk of serious harm (like broken bones –hip replacements are particularly troublesome for Parkinson’s patients to overcome being hospitalized longer and having greater decline in activities of daily living within first year requiring usually skill nursing), increase need for medications, as well as increase in disability and decrease quality of life due to decrease mobility along with an increase financial burden. This is too high a price to pay when we can prevent most falls with some strategies to reduce fall risk.

First, and foremost keeping active starting a physical therapy program, or an exercise program that will help strengthen core muscles (neck, back, legs).

Second, especially if getting up in age make sure you get routine eye and hearing exam. Poor hearing and vision added to stiff muscles with already have poor coordination make for disaster waiting to happen. 

Third, avoid interaction between medications especially sedatives like benzodiazepines (e.g. klonopin, xanax), anti histamines ( e.g Benadryl), pain medications. Sometimes levels of levodopa have to be adjusted for those that fall during dyskenesias or if blood pressure is dropping especially if taking a blood pressure medication as well.

Fourth, have your doctor check your B12 levels which are commonly low in Parkinson’s patients –low levels of this can alter your sense of perception increasing your sense of lack of coordination if your feet are sending wrong signals to the brain about the terrain underneath them. 

Fifth, walking with a stooped posture can also be problematic- although it can protect against backwards falls it makes it more likely to fall forward especially when rising or transferring from chair or bed.

Sixth, if reason for falls is decrease motility or movement then need to talk to your physician or provider about increasing your medication unless contraindicated like having hallucinations or severe dyskenesias in which case strength training and teaching cueing strategies are helpful. For those that have cognitive impairments, they need to be supervised at all time while transferring from seating and from bed as well as when walking and assistive walking devices are highly recommended.

At all times a team approach works best to ensure safety of all those involved.

Always keep a list of all medications even over the counter and discuss all falls even when no injury occurred to your physician. Even if you are just getting off balance but no falls have occurred mention it to start preventive treatment before a fall occurs.

Some of the exercises that will help keep and maintain balance are yoga, tai-chi, and aerobics in deep water.

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For further reading on the subject go to Journal Parkinsonism & Related Disorders April 2014  

“How to prevent falls in Parkinson’s Patient’s? A new Consensus Document Offers Tips” Neurology Today, Vol. 14, issue 12, June 19 2014

Ellis, Terry PT, PhD, NCS “Gait, Balance & falls in Parkinson’s disease,” Expert briefs Parkinson’s Disease Foundation, January 15, 2013

www.ncbi.nlm.nih.gov/pubmed16130353

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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

 

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

DYSKENESIAs: The Dreaded “D” Word in Parkinson’s: By Dr. De Leon

Dancing, dystonic, discombobulated, distraught these are all ways people with Parkinson’s feel when contemplating the possibility of a life with dyskenesias after the initial shock of receiving a diagnosis. Yet, the reality is very different in my experience and to those who have studied dyskenesia epidemiology. Patients have been so fearful of Levodopa to the point of either avoiding medications all together or worse seeking help from a physician thus prolonging their diagnosis and making their disease symptoms worst and decreasing their chances for a good quality of life. Even when patients agree to start medications some have had have great trepidation in increasing the doses or stayed only with Dopa agonist despite severe side effects as some of you might have read the story of a young man with PD who was afraid of starting Levodopa compounds so even though he was experiencing severe side effects in the form of unprecedented gambling with the Dopa agonist, he continued to take the point of almost losing everything including his marriage. It was until he was on the verge of losing it everything that he cherished that he reluctantly agreed to stop taking the Dopa agonists and go on Levodopa to find out it made all the difference in the world. He is now putting back his life together and his symptoms seem to be better controlled according to his blog. Few things that might help you as a patient or caregiver decide which path to take early on when deciding on agonists vs. Sinemet or a Levodopa compound by whatever name you may know it in your country. First, remember Levodopa is your friend NOT your enemy! As I have stated in previous blogs and according to all of the new literature release on the subject- Levodopa is both neuroprotective and neurotrophic. By starting early treatment with this compound in the disease can actually be extremely beneficial since it appears to retard disease in ways that agonists do not. But, like I mentioned in my previous blog this like dopa agonists all have their own unique side effects. The key is learning how to balance their intake and when to use what and in what amounts. Dopa agonists have more sleep attacks, blood pressure problems over all as well as more potential for weight gain and water retention and in men gambling and other OCD behaviors but less risk of dyskenesias. As far as dyskenias are concerned it is interesting to note that the concern and fear is highest for all patients men and women alike independent of age at time of diagnosis or at early onset but as time goes on and disease progresses the concern with dyskenesias decreases. Even in the face of dyskenesias, patients who have these do not seem to mind them when asked out right, it is actually the wearing off and suddenly being unable to move that causes the anxiety and trouble when the disease advances. Dyskenesia look bad as do tremors but if you ask a patient are they bother most do not even notice them or care they have them is the spouses or family members or doctors which get concerned. I have set across many patients and friends with varying degrees of dyskenesia all of whom had told me that the movements did not bother them in the least and some were not even aware until I pointed out as to what I was referring to as an involuntary moment known as a dyskenesia. They all then proceed to state however, they did not like the feeling of being stiff and unable to move so rather be like this. Tremors like dyskenesia should be treated only when they are causing problems for the patient and interfering with activities of daily living. The excess movement is okay unless causing severe weight loss or gait balance difficulties…but what worries most physicians about dyskenesia is that once a patient develops these fluctuations, this is an indication of poor medication regulation by the body and brain which can result in sudden wearing off leading to more devastating problems like falling, chocking, and pain. The truth is that the fear is greater than the actual reality once it sets in and although it is believed that 80% of PD patients develop these within 5-10 years after diagnosis, it is important to know that women are more likely to develop this phenomena compared to their male counterparts secondly these can be delayed if agonists are started early or in combination with Levodopa compounds, other risks are younger onset of disease and duration and doses of Levodopa. Since, young onset PD in women seems to have the highest risk of developing dyskenesias, perhaps these are the ones to delay levodopa some and /or give much smaller doses in combination with dopa agonists or use levodopa with COMT inhibitors to prolong or extend the life of Levodopa compounds thus reduce the total amount consumed and decrease fluctuations. This has worked well for me in treating patients in past. Further, maybe we as physicians need to change our early treatment strategy based on gender and potential for dyskenesias weighting the risk compared to other more serious side effects like gambling. Next time you know of someone diagnosed with PD or a physician suggest that you or a friend start taking Levodopa don’t shy or run away from idea simply on the basis of being afraid of developing dyskenesias. Discuss the issues in detail with your physician most importantly the need for combination therapy to maximize medications benefits and minimize side effects of each always taking into account your gender and what we have learned thus far about how different genders respond to different medications. But above all, remember that NO TREATMENT is ONLY going to Harm you in the long run and shorten your independence and DECREASE your Quality of life. So imperfect treatment is BETTER than No TREATMENT at all!!

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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

parkinson's disease, research, research in parkinson's disease

Parkinson’s Disease: an Autoimmune DIsease? By Dr. De Leon

Image

For some time me and others like myself have been toying with the idea could it be possible that Parkinson’s is yet another autoimmune disease like diabetes or thyroid disease or even pernicious anemia? Or even an inflammatory disorders like ulcerative colitis? Perhaps some genetic subtypes can more easily fall into this category than others. For instance, it is interesting that the majority of Parkinson’s Disease (PD) patients have B12 deficiency as a co morbidity. Or that the type of Gaucher patients that are most likely to develop and have an increase risk of developing PD are type I patients – those without central nervous system involvement.

Patients who posses Gaucher and are carriers of a GBA gene mutation have increased risk of developing Parkinson’s disease and parkinsonism. Gaucher patients carry a deficiency of the enzyme glucocerobrosidase.  This enzyme is typically acts on the glycolipid glucocerobroside. So, when the enzyme is defective, glucosylceramide aggregates and accumulates in white cells (which are responsible for mounting immune attack but particularly like to congregate in the macrophages. The macrophages are like “Pac Man” hungry white blood cells gobbling up invading bacteria. They are formed in response to an infection or accumulating damage or dead cells. Thus, they are unable to break down fatty acids and they have abnormal accumulation into the white cells and macrophages which are the ones responsible for being able to mount an appropriate immune response against a foreign attack like bacteria or virus. But, if these cells who are to destroy the offending viruses etc. are unable to take them up because already full with unwanted stored up material then more white cells, T cells and macrophages have to be created jamming up the system and thus indiscriminately attacking normal cells throughout the body and brain. Some evidence of this is present in the preliminary data in a study I am involved at the University Of Texas Houston Center. My friend and colleague has informed me that my blood levels of T cells and other inflammatory and immune markers have been measured and found to be elevated and have improved as my disease has been treated. Data hopefully will be released soon.(this is all preliminary and confidential).

The other subtype of PD which points to an inflammatory and autoimmune component is the LRRK2 gene phenotype. Many of these patients with this type of phenotype have a history of inflammatory bowel disease most often ulcerative colitis. Ulcerative colitis (UC) is another autoimmune disease characterized by T-cells infiltrating the colon. Although Crohn’s disease another inflammatory bowel disease which is much more extensive beyond the colon as compared to UC has also been seen in this group of PD patients, once again making a case for a possibility of our immune system going haywire and attacking the nervous system. In medicine, it is dogma to say that once a patient has one autoimmune disease they are at higher risk for contracting another and we frequently see this in our practices. But, until recently, no one had really dared to contradict the underlying notion that “neurons” were somehow protected from attacks from the immune system. Although, we have clear evidence of instances of where there is an autoimmune reaction in the central and peripheral nervous system after vaccine injections causing “Acute disseminated encephalomyelitis” and also MS but these have only targeted the connections not destroyed or actually damaged actual Neurons! Therefore, if it is true that Parkinson’s neuronal loss is a result of attack of the immune system itself it would revolutionize not only our thinking but our way of preventing and going after treatments for Parkinson’s.

So, recently researchers tested this hypothesis to see if indeed living neurons would display antigens (like bacteria or viruses) which then trigger an immune mediated response to neutralize this force. Drs. Sutzer and Cebrian from Columbia University used in vitro mouse and human neurons from embryonic stem cells. Their studies revealed that under certain circumstances- including those known to occur in PD. These neurons produced a special protein which presented an antigen which was recognized by the T cells and triggered an attack on these neurons. They prove an autoimmune process can happen and neurons can be attacked but is not known if this is the initial or final response or if all Parkinson’s is started this way or only those subtypes I alluded to previously. One thing is for sure future is bright and field is ripe for new and novel treatment options!

For more information on the subject go to:

  http://www.sciencedaily.com/releases/2014/04/140417151227.htm

 

 

 

 

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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

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

DBS: Exploring Expanded Labeling for DBS for Parkinson’s Patient’s: By Dr. De Leon

Even though I have written on this subject in the past, I thought it was worthwhile revisiting since there are so many individuals with questions, concerns, and not sure when to have surgery or if they should have surgery at all?

DBS made by Medtronics has been around since the 1990’s and FDA approved first for tremors in 1995 then for Parkinson’s in2002. At the beginning, the indications were much narrower with time they have been expanding as are the patients which receive this treatment. This used to be a treatment reserved as a last resort but now from years of practice, we neurologists and movement disorder specialists have understood that preservation of quality of life is of utmost importance rather than rescue patient from severe disability. But, in order to do this, we as physicians (MDS) & neurologists and even patients and caretakers need to start discussion long before disability sets in…

There are still 3 criteria for DBS for Parkinson’s to ensure best outcome:
1) must have idiopathic Parkinson’s
2) motor symptoms which must be responsive to Levodopa are at some point either inadequately or inconsistently controlled with patients current regimen which should be at optimal levels
3) patient is troubled by their motor symptoms and /or their medication effects

The key to proper and effective use of DBS is early introduction of DBS as a viable treatment option early on in the disease…so that it gives patients and families adequate time to begin accumulating knowledge regarding procedure and asking the right questions that might impact their life…after all if you wait too long may miss window of opportunity because patients have to undergo a series of test including on/ off evaluations, Neuropsychiatric evaluations, MRI ‘s, blood tests, referral to neurosurgeon all of which can take up to a year from beginning to end from decision to evaluate be accepted, be implanted then turned on and even longer by the time all the final settings become stable …normally DBS first turned on 2 weeks after implant…then slowly usually every month or so go up on parameters as medications are gently titrated off/or usually decreased in most patients.
Of course during this period, there may be possibility of surgical complications which can delay programming. Also, distance from home can be a factor for longer periods between programming.( I highly recommend that if at all possible choose a programmer who is also a neurologist and or an MDS will usually get best results or someone that works very closely in same office with one). Don’t be afraid to ask for references and names of patients surgeons and programmers have treated before…

Remember early education is key -DBS is not a CURE but can significantly alter a patients and therefore a caregivers quality of life! DBS is only treatment to date known to stop tremors 100%, other benefits include reduction in bradykenesia, motor fluctuations, Dyskenesias,rigidity & improved tolerability to medications. However, I must caution that most people especially with bilateral implantation will experience increase speech problems, drooling, gait difficulties, swallowing, cognitive problems, depression and gait instability. So, if you already have these problems need to outweigh risk because it is almost certain these will intensify and worsen…discuss with your physician before proceeding.

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For more information on how to find a reputable MDS/ surgeon performing DBS placement or doing programing contact Movement Disorder Society at http://www.movementdisorders.org or http://www.aan.org.

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

biomarkers in parkinson's, chronic illness, parkinson's disease, parkinsons dementia, parkinsons health and beauty tips, research, research in parkinson's disease

Thinking Outside the Brain for a Parkinson’s Cure : By Dr. De Leon

Thinking Outside the Brain for a Parkinson's Cure : By Dr. De Leon

I don’t think inside the box, I don’t think OUTSIDE the box, I don’t EVEN KNOW where the box is!”- unknown

The other day while I was giving a talk about how to diagnose PD, I was giving my usual spill about ” in the hands of a specialist like myself- accuracy is 95%,” when someone in the audience asked me a very thought provoking question. So, how early can you diagnose with such certainty? Therein lies the BIG Problem in why we need biomarkers and be able to think outside of our current diagnostic criteria!

In reality, I told her it is still very accurate above 90% for someone that has a lot of experience -that’s where art meets medicine …you get your “intuition” about things based on past knowledge and experience and are able to predict with fair accuracy and since at this point there is NO difference in treatment really between one type of Parkinson syndrome or another it does not much matter at the beginning…However, where it becomes a problem is being able to predict outcome and assign patients to studies because you have to follow strict criteria and even if you just KNOW that someone has Parkinson’s or an atypical variant you have to back it up…and as you all know EVERYONE is different so it may take some one ten years to develop all 4 cardinal symptoms of Parkinson’s while someone else only 2. So, it is hard to at present time to make a lot of head way in the discovery of new medications that might be beneficial to slow or stop the progression of early stage of Parkinson’s because unfortunately there is still a lot of variability in early diagnostic accuracy depending on the field. Even among neurologist not Parkinson’s specialist, a published study indicated that for PD patients who had symptoms less than 5 years, they were wrong 50% of the time. These patients turned up to have another reason for their Parkinsonism which translates to automatic failure of any drug being studied since 50% of the patients in any given trial of early PD may not even respond because they don’t have the right diagnosis!

So, I realized that in order for us to start thinking OUTSIDE the BOX we need to FIRST get a CLUE of where the BOX is – what Parkinson’s looks like- acts like, presents like so THAT EVERYONE IS on the same page and able to diagnose with same degree of accuracy!!! This needs of course to go back to medical school, residency and communities and we all as PD advocates can play a role in educating health staff and other health professionals about Parkinson’s. The better we are at recognizing early symptoms the better chance we have for participating in neuro-protective trials as well as be able to determine biomarkers early on.

A lot of money and research is being channeled to the finding of these biomarkers in the recent years. According to research initiated by the MJFOX foundation, we may have insight into possible new biomarkers coming from the retina, colon, or skin which could lead to not early detection but a cure for PD.

For a number of years, neuroscientist have known that alpha-synuclein the abnormal protein seen in Parkinson’s is also found outside of the central nervous system. This protein is a major constituent of Lewy body disease another Parkinson’s like disease. However, alpha-synuclein which is located largely at the ends of neurons plays a part in both familial and sporadic Parkinson’s disease as well.

Through the usage of very powerful machines and equipment known as optical coherence tomography (OCT) which takes high resolution pictures of the retina, scientists and doctors have found that PD patients have thinner retinas compared to healthy individuals.
At this point, they are not sure if there is enough evidence to use as a biomarker because they are not certain how specific it is to Parkinson’s since it also has been seen in Alzheimer’s patients who had Parkinson’s as a co-morbidity.
Alpha-synuclein is normally present in several types of retinal cells…so the possibility of serving as a biomarker exists either by accumulation or (absence) at this time no cells have been found in PD patients.

Another place that accumulates alpha-synuclein outside the brain is the colon. Published studies have revealed that immunostaining for Alpha-synuclein in living Parkinson’s individuals results in a positive outcome in 69-100% of the time but not seen in MSA ( multi -system atrophy) patients. Another study showed that these findings preceded the clinical motor symptoms. So far, results which are small have been mixed. They are easy to attain because of flexible sigmoidoscopy can access distal colon easily plus screening is required of all over 50 years of age. However, not all pd people showed pathology. Some explanations have been given which include variation of tissue involvement, change in pathology over time and perhaps unsuitability of this being used as a biomarker.

The third place where scientists are looking for a possible biomarker outside the central nervous system which is also full of alpha -synuclein is the skin. One reason, people are interested in this area is because of the new wave of knowledge and thinking about the etiology of Parkinson’s. Since, we now know that there is a prodrome period of non- motor & autonomic symptoms that precede the development of the motor symptoms, researchers believe that perhaps alpha-synuclein pathology starts outside the brain and migraines to the brainstem.
Also, studies have suggested that peripheral nervous system is equally involved in Parkinson’s. Evidence of this was suggested in an issue of Brain in 2008 where Parkinson’s patients were found to have cutaneous denervation resulting in higher threshold for heat and touch but decrease for pain.

Because the skin is not only easily accessible but also has a plethora of autonomic involvement, and many autonomic nerves making it a great candidate for study.
A study in the Journal of Neuropathology & Experimental Neurology proposed that the skin may be a beneficial site for diagnostic predictability since 70% of PD cases and 40% of PD with dementia revealed positive alpha-synuclein immunoreactivity while absent in other Parkinson plus syndromes like MSA ( multisystem atrophy) , PSP( Progressive supranuclear palsy), & CBGD (Cortico-basal-ganglia-degeneration). The results are very promising but still need to be validated and compared longitudinally and with autopsy confirmed cases of PD.

Out of all these the most promising is the skin biopsies as a possible biomarker..easy and readily accessible and this far able to differentiate between Parkinson’s and other Parkinson’s plus syndromes.
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For more information on the topic: MJFOX research on biomarkers
Haugh, Zac., Movement Disorder Focus: Alpha-synuclein :Thinking Outside the Brain. Practical Neurology. Vol. 13, No.2, March 2014

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