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

 

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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: an Autoimmune DIsease? By Dr. De Leon

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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

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

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

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

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

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

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

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

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

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

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

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

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

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

All materials here forth are property of Defeatparkinsons without express written consent, these materials only may be used for viewers personal & non-commercial uses which do not harm the reputation of Defeatparkinsons organization or Dr.De Leon provided you do not remove any copyrights. To request permission to reproduce release of any part or whole of content, please contact me at defeatparkinsons101@yahoo.com

Parkinson’s: Not Just a Disease of Your Grandparents : by Dr. De Leon

Parkinson's: Not Just a Disease of Your Grandparents : by Dr. De Leon

Parkinson’s can affect young and old in all walks of life, although it is typically more common in those over 55 (known as Idiopathic Parkinson’s Disease). But it can strike young people even in their 20’s (younger age prior to 40 is known as Young Onset Parkinson’s). In the United States there are nearly 1.5 million people living with this condition and countless others who dedicate their lives to their care. Many of these individuals reside right in your community where you live. The financial burden not to mention the social and emotional devastation which is ever increasing is leaving many of these patients and their families isolated and destitute. Therefore, this April as we celebrate Parkinson’s Awareness Month nationwide, I like to invite each and every one of you to join me in honoring someone with Parkinson’s disease by doing whatever it takes to find a cure and ease their burden.
One way of honoring these individuals is by staying informed so that together we can raise awareness.
The more you know, the better equipped you are at helping your friends and neighbors who have to struggle with a chronic progressive neurodegenerative disease to find ways of coping. Parkinson’s disease is characterized by loss of a black substance deep in the brain known as the basal ganglia. This chemical called dopamine is responsible for our fine motor movements, coordination, muscle control as well as responsible for playing a key role in the reward-pleasure seeking behaviors in our lives.

4 main motor Symptoms Of Parkinson’s are :
Rest tremors
Gait instability
Muscle stiffness
Slowness (of movements)

Other non-motor symptoms include:
Loss of smell
Anxiety/depression
Constipation
Sleep disorders/restless leg/ REM behavior
Memory loss/ cognitive problems
Pain
Fatigue
Bladder problems
Visual problems

Risk factors:
Advancing age
Male gender
Decrease estrogen /early hysterectomy with ovary removal
Environmental toxins
Low Folate levels
Agricultural workers, well water consumption
Repeated head trauma or severe head injury
( others less known risk factors)
Hispanic ethnicity
Family or personal history of essential tremors
Family history of Parkinson’s
History of restless leg or REM behavior
History of anxiety/mood disorders
History of chronic constipation

If you have any of these symptoms please make sure you seek advice of a healthcare provider immediately. Although, there are no blood test to confirm diagnosis under the care of a specialist ( neurologist / or movement disorder specialist ) the diagnosis can be nearly 95 % accurate. Similarly, in the hands of a specialist the quality of life of Parkinson’s patients has been shown to be improved in several studies despite the fact there is no cure.
By seeking treatment from a specialist early on, the many medications (Sinemet is still the goal standard) and surgeries including deep brain stimulation ( DBS) can be used with greater efficacy.

So, what can you do to help and support those that have Parkinson’s in your community?
You can find a Parkinson’s study nearby and volunteer – Most studies in this country and I imagine in other countries as well never fill; one of the reasons why it takes so long to get new drug treatments. Or you may volunteer to drive a friend to a study.
Share the Parkinson’s information you learned with others.
Find a friend with Parkinson’s and exercise, swim, cycle, or take dance or yoga classes together- these have shown to improve the quality of life in Parkinson’s patients and increase mobility.
Join a Parkinson’s support group or start a support group.
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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

Treatment Strategies for the 4 Common Causes of Bladder Dysfunction in Parkinson’s : by Dr. De Leon

Treatment Strategies for the 4 Common Causes of Bladder Dysfunction in Parkinson's : by Dr. De Leon

As I mentioned previously there are 4 common causes that lead to Parkinson’s bladder problems. The most common being improper processing of dopamine message from brain to bladder causing a mixed up response with increase frequency and urgency. ( when is contracting or too active is called –detrusor hyperactivity).
Second, urgency and frequency can be caused by blockage or pressure on urethra from chronic constipation and thirdly increase sphincter pressure not allowing urine to flow and fourth bladder does not contract (detrusor hypoactivity) causing urine to stay trapped and giving a constant sense of needing to void.

However, before you decide that the urinary problems are caused by Parkinson’s Disease and not some other medical problem like diabetes make sure that all other causes are excluded. Several medications can cause bladder problems. The tricyclics (e.g amytriptaline, nortryptyline) can cause urine retention- these are commonly used for depression, sleep problems, & some other derivatives may be used at times for tremors. Diuretics commonly prescribed for blood pressure of course can increase your urgency and frequency.

In men, an enlarged prostate can cause problems with starting urine, may have decrease flow, hesitation, dribbling, urgency and frequency.
In women, having an enlarged uterus or the fact that they had multiple children can cause them to have weak pelvic muscles and cause stress incontinence (loss of urine with coughing or laughing) and can lead at times to increase urgency. Women are also more prone to urine infections especially after menopause which can lead to symptoms of urgency, frequency, incontinence.
If all medical causes are excluded or even before, a Parkinson’s patient may need to be referred to specialist like urologist to evaluate prostate or stress incontinence. If patient is a woman, she may need to go to a gynecologist to make sure her uterus is not enlarged and or pelvis not weak. The specialist will do a urine analysis to make sure no infection, might do ultrasound to look at uterus and bladder, prostate exam and blood work and also Urodynamic Tests.

‘Urodynamic tests evaluate how your urine is stored within the bladder, as well as how urine flows out of the bladder through the urethra. These types of tests can measure the speed and volume of urination (uroflowmetry), the amount of urine remaining in your bladder after urination (postvoid residual) or the pressure within the bladder (cystometry).”

If problem is not clear the neurologist or Movement disorder specialist may recommend an EMG test along with the Urodynamics to evaluate the status of the muscles of the bladder and pelvic floor. If either the gynecologist, or urologist in your area are unable to perform these tests an “EMG” specialist might be consulted…A urodynamic test is NOT a FUN TEST especially when you add needles into your bladder and pelvic muscles! They have to insert many small needles in your bladder then watch you go Void into a large container in front of several people while they measure everything! It is Not the most pleasant test in the world- not really painful- it is more embarrassing than anything else…but you will get through it -not much different than giving birth!

Often times, your neurologist will try some treatments before referring to a specialist if it seems like common ordinary urinary problem of mixed signaling. But, if symptoms are not resolving or getting worst, getting frequent infections or seriously interfering with your personal life in any shape or form (sleep, sex or hygiene) you MUST be seen by specialist ASAP. Usually for those that have hard to control bladder problems or mixed typed which CAN happen in a single Parkinson patient more frequent than you might think (I recommend keeping diary). For those that have multiple causes or not responding to treatment, the best treatment is a team approach.

Tips: to help with Nocturia (bladder urgency at night)

Avoid drinking fluids after 6 pm – especially if you have worsening symptoms at night
Have medications adjusted –especially Sinemet if wearing off in middle of night and causing you to have urgency or not being able to make to bathroom on time or disrobe fast enough. Dismiss meds that are causing bladder dysfunction. Similarly if getting to touilet is a problem get a bed side commode.
If bladder medication not lasting consider using patch that maybe longer lasting –Oxytrol 24hour patch for instance.
Get a bed wetting alarm. Prices range from $49 to $179.
If being awake causes you to go to bathroom more –talk to doctor about prescribing a sleep aid.
Foods to Avoid:

Chocolate
Tea
Caffeine
Alcohol
Spicy foods

Other treatments :
Topical estrogen
Biofeedback -which includes toilet retraining
Botox to bladder
Vaginal weights
Kegel exercises
Bladder surgery
Neuromodulation (2 types)
Interstim
PTNS

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***Do not make any changes to your medication prior to discussing with your physician or healthcare provider.
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

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