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

How To Make The Most Out of Your Neurology/MDS Visit: by Dr. De Leon

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I know many of you have expressed the concern that some of the issues don’t get addressed or addressed in a timely manner when visiting your neurologist or MDS. This especially difficult to deal with since many do not live close to a neurologist and have to travel a way to go see them. So of course you are tired and frustrated of  having to wait both to see a neurologist or movement disorder specialist as well as in pain and discomfort if asked by your doctor to be off your medications for evaluation.

We all have experience the feeling of disgust at ourselves when after leaving the doctor’s office after being there several hours we realized that we forgot to ask or discuss an issue that was utterly important.

A few tips to minimize frustration and maximize our time and neurologists focus on our issues are the following recommendations based on my extensive experience as a Parkinson’s specialist and as a patient.

First, I am sure many of you have experienced the phenomena I like to call the ‘doctor syndrome.’ For some reason, it happens to me all the time and I am certain it happens to you because many of my patients told me that they were worst before coming to see me. I am not sure why that is but my Parkinson’s symptoms are always better when I see my doctor!

Second, especially if it’s the first visit make sure if possible to bring someone with you that can be your ears. Because unless you are savvy in the medical field and medical jargon, after the first few sentences where your doctor tells you the diagnosis I guarantee you will not remember anything else said or explained.

As physicians we usually concentrate on what’s visually in front of us and have to pay close attention to non visible symptoms and rely on you unfortunately too much to let us know how your life is being affected by these invisible otherwise known as non-motor symptoms.

Parkinson’s disease is extremely complex illness and increasingly getting more as we speak even though most neurologists and movement disorder specialist like me typically spend an hour or more per patient it is impossible to cover ALL possible symptoms in detail.

Therefore it is imperative that you prioritize your problems:

  1. Are you there as a new patient and looking for diagnosis and new treatment?
  2.  New patient for second opinion and alter treatment?
  3.  Established patient for management of symptoms?
  4.  Established or new looking for disability?
  5.  Interested in participating in studies or research and what are you willing to do?-e.g. participate in studies with new unknown meds vs. known medications already approved, invasive vs. non-invasive?

All of these will require different focus from your doctor.

I recommend that you limit your discussion to main reason (chief complaint-e.g. new patient looking for diagnosis) you are there and two other symptoms that need immediate addressing!

If you have more pressing issues make an appointment sooner than what they will suggest don’t settle for appointment in 3-6 months if NOT doing well!

Also if need a family intervention to discuss prognosis and long-term treatment plan and care, make appointment with you, family and doctor exclusively to discuss these issues. Let the doctor know ahead of time that this is purpose for visit so doctor and staff can be prepared for meeting as far as time so you won’t be rushed and also and most importantly so doctor can formulate plan ahead of time and bring ancillary services if needed such as social services or names of assisted living, nursing home, or rehabilitation places etc.

Third, know your insurance coverage of medications. This will expedite treatment and allow doctors to know which prescriptions to write. Unfortunately, due to recent changes in healthcare and medication coverage (at least in this country) it is becoming increasingly more common for doctors particularly specialists to prescribe medications base on a patient’s formulary rather than what they think should be first choice! Ask for samples, ask for assistant programs, and let them know if meds will require pre-authorization or paper work filled out. If you are new patient or established patient who will be on new drug- it is best to not have that medication sent to mail order pharmacies until required dose achieved and / or know if can tolerate otherwise will get stuck with a bunch of medicine can’t use.

Fourth, always bring a list of your medications better yet the medications themselves which should ALWAYS include name of over the counter medicines even if they are as needed because could possibly interact with new prescription.

Fifth, ask for side effects of new meds, what to expect, how fast will notice improvement, do they need to be titrated and how often? In this should also inquire if meds will affect women issues such as safe if planning to conceive or are breastfeeding, ask especially if risk of melanoma, breast cancer and prostate cancer in family to be referred to specialist for follow-up given that some medicines will increase these risk and others like melanoma simply by having PD make you at higher risk.

Finally, at least in this country know that if you require paperwork filled out there most likely be a fee and a few days to get paper back so plan ahead.

Ask for literature, support groups, as well as ancillary services such as speech therapy if needed.

If you follow these simple rules, I guarantee that you will have a much happier and successful journey with PD as you and your doctor work as a team.

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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 deleonenterprises3@@yahoo.com contributor http://www.assisted-living-directory.com Contributor http://www.lavozbrazoriacounty.com

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

Visual Hallucinations in PD: What do they look like? by Dr. De Leon

Someone asked not long ago if Parkinson’s hallucinations had a particular pattern or flavoring to them? The truth is that there are common trends seen in PD patients who experience hallucinations. First, a hallucination is a strong perception of something that is not real or does not exist. Any and all of the senses can be involved in a hallucination meaning that one can feel, taste, touch, see or hear something that is not real. Hallucinations are purely imaginary as opposed to illusions which are distortions of real things/ objects/ people/ and sounds. The second most common hallucination in my experience is olfactory (smell) hallucinations …I frequently think something is burning. other people have told me same thing. this may be related to olfactory neurons dying out.

It is estimated that at some point up to 75% of PD individuals will experience this phenomena of hallucinations particularly-visual.

It is also important to note that the timing of such events can be a huge diagnostic clue. In typical PD, these symptoms do not occur until more than 10 years into diagnosis and can be exacerbated by medications but are a part of the disease itself. So, if symptoms present at onset or within a few years of Parkinson’s symptoms then we are most likely NOT dealing with regular garden variety PD but rather a disease in the spectrum of Parkinson family like Lewy body dementia or CBGD ( corticobasalganglia degeneration) to name a few.

The most common type of hallucination in PD individuals is a visual one, as I stated earlier.  These can be either black and white or in full color and typically involve children or animals. The perceptions can last a brief period of time or hours. however, important to note that usually the images do not speak or make sounds and thus are not ordinarily distressing to the individual who for the most part remain aware that this is a hallucination (not real). In fact, a lot of my patients, as do many other PD individuals, rather enjoy seeing the children and find comfort in these images. However, although it is usually not the norm some patients can find the hallucinations distressing, anxiety provoking, and even frightening at times, these typically occur with more violent or frightening images- typically of demons and such.  When a person cannot distinguish reality from make- belief or if the images are too frightening or causing distress, this is the time for intervention.

What can you do to help?

1)  Make note as to when hallucinations are more likely to occur to try to prevent. Confusion, hallucinations and a full moon usually go hand in hand! So, keep those neuroleptic drugs handy just in case you may need during a full moon or lunar eclipse. In my experience, more patients were brought to ER because of psychosis during these days.  Typically, I would recommend pre-medicating a patient during those days if I knew they were prone to hallucinate and get distressed over the event.

2)  People that sleep a lot during the day seem to be more prone to visual hallucinations. Try to maintain normal sleep wake cycle as much as possible and prevent excess daytime sleep. On the other hand, sleep deprivation can also trigger these episodes. Therefore it is important  to discuss with your physician any sleep problems.

3)  Also be aware that certain medications like anti- cholinergics (e.g.amantadine), anti- histamines (Benadryl), anti- anxyolitics (e.g. klonopin)  even dopamine medications, more the agonists than levodopa, can induce hallucinations.

4) Other triggers for hallucinations are acute infections. In the elderly population urinary infection is the number one culprit. So maintain your loved ones well hydrated.

Even though, PD individuals may experience auditory hallucinations this is not the norm and if this is highly prevalent, one must consider other causes triggering these events, such as brain tumors, strokes, medications, etc.

Often, my grandmother who had Parkinson’s in her final stages would hallucinate. She frequently saw children playing and thought of them as the children she had lost when they were infants or toddlers. Seeing them made her happy. In this scenario I did not need to give her any type of medication for psychosis or hallucinations for its not always necessary to medicate a loved one just on the basis that they are having hallucinations. However,  there were times when she thought the house was being flooded and caused a great deal of distress thinking that she and we were going to drown especially my daughter who was only a toddler then.  At those times, I would have to give medication to decrease her anxiety.

How to handle patient when hallucinating?

1) You never want to be confrontational or argumentative or even try to change their belief about their hallucination; it would only escalate to violence.

2)  Also do not try to give medication when they are agitated or again will only cause you the caregiver increased heartache.

3) Best to walk away if they are not in imminent danger let them settle down then bring a medication best if it’s something quick acting like an orally disintegrating compound. Another good technique that works unless extremely agitated is distraction with books, pictures, coloring, games, etc.

Fortunately, we now have a new medication on the market just for PD psychosis from Acadia called Nuplazid (Pimavanserin). Medications which I frequently employed for this problem were atypical antipsychotics( neuroleptics) such as Seroquel and Clozaril since they would not interfere with motor symptoms of PD, there are other medications which can be given in smaller quantities but used because they are IV or orally disintegrating.

Finally, since rarely do hallucinations in PD occur in absence of dementia this needs to be treated.  Look for other underlying causes such as strokes, or vitamin B12 deficiency. Adjust dopamine levels and best to remove Amantadine and dopamine agonists which can exacerbate problem and start treatment with an anticholinesterase inhibitor, like Aricept. In my experience combination treatment with Namenda and Exelon or another one of its class went along way to curbing dementia and hence hallucinations.

Make sure you consult your physician regarding any changes in mental status including hallucinations.

Sources:

http://www.bioprocessonline.com/doc/acadia-s-nuplazid-receives-fda-breakthrough-therapy-designation-for-parkinson-s-psychosis-0001

http://www.epda.eu.com/en/parkinsons/in-depth/pdsymptoms/hallucinations-delusions/

 

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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 deleonenterprises3@@yahoo.com contributor http://www.assisted-living-directory.com Contributor http://www.lavozbrazoriacounty.com

caregivers and chronic illness, chronic illness, parkinson's disease, parkinsons dementia

Keeping Track of Doctors Bills : By Dr. De Leon

” I am not telling you is going to be easy, I am telling you is going to be worth it!”

As many of you may already know, November is caregivers’ month; thus, I will talk about an issue that affects caregivers and patients alike.

The care giver has many responsibilities and roles in making sure that their loved ones needs are met. Among one of the biggest responsibilities a care partner or giver may have is being responsible for the financial stability of the Patient fully or in part. But, even when the patient is able to care for him or herself financially he or she may still need an advocate to help decipher the ever complex and confusing world of doctor and hospital bills.

This becomes more pressing as the disease advances and dementia begins to set in. Those of you who have a chronic illness or care for someone with a progressive debilitating  illness like Parkinson’s know that as the disease advances the need for services ( PT, OT, Pain doctors etc.) increases exponentially. Subsequently, the amount of bills you receive also increases at an alarming rate. The rate can suddenly shift to ‘a warp speed’ if your loved one ends up having procedures or being hospitalized; especially if the hospitals stay is lengthy.

In which case, you can find yourself being inundated in bills and paper work. This can drive a person mad trying to make heads and tails especially when the person you are caring for needs 24 hour care or pretty constant supervision in all other aspects of care from grooming to ensuring they take their medications properly.

Here are a few tips that I have learned to help simplify life. These can be used whether you are a patient or a caregiver.

First, set a side a special box or place where you will place all the mail relating to this subject/away from all other mail so it can be easily accessed.

Second, make sure that you know what your insurance covers in and out of the hospital before you have tests, procedures; become hospitalized; so there are no surprises. If you have Medicare go to Medicare.gov. Otherwise get a copy of benefits/coverage from your insurers.

Third, designate an area and a time when you will dedicate exclusively to this. once a month is good if not so many bills but if having ongoing procedures, hospitalizations, and doctors evaluations, you will most likely start receiving bills weekly if not daily therefore be best to tackle once a week to avoid getting yourself overwhelmed.

Next…

1) Make a proper binder to place all the (EOB’s- extended office bills) and label yearly. Also if hospitalization extends several months put color dividers to delineate various months. The same can be done if patient had doctor’s appointment or procedures extending various months.

2) Do not pay a single bill until you receive an explanation of benefits from your insurance/ compare it with doctor’s bill and pay only after they have paid their part. If you have secondary insurance have to wait till both insurances have paid. Which usually means you should not have to pay anything unless at beginning of insurance cycle when you have to meet your deductibles. (the beginning for your calendar  year may vary slightly but usually around the last quarter of the year or first quarter of the new year). For Medicare the deductibles are due at the beginning of every year.

3) If you detect a problem- call your insurance company customer- service first and make sure you get names and dates of whom you speak to and if checks issued get amounts, to whom, dates issued and check numbers.

4) Once a certain bill is paid – make sure you check off ( and remove from your pile /box and file into binder in section labeled paid) so you don’t pay again or have to deal with it again because sometimes may get duplicate! Look at it carefully for services and dates!!! Use a red pen or marker to check off

5) If the problem is at doctor’s office or hospital, make sure you speak with billing person directly.

6) Always take good notes.

 7) Usually insurances give discounts so pay close attention and if doctors office or hospital tries to bill you for difference when you have received a discount, send them copy of EOB. If no discount listed in your invoice call your insurance to make sure whether one should be applied.

8) Always make sure that bills are sent to correct insurance with right policy number and that everyone has correct spelling of patients name to avoid claim errors.

 9) At times claims are kicked back due to coding errors, so always inquire if there were any problems with codes causing it to be denied which you could address with your doctors or hospital billing office.

If you remember these simple tips: you can avoid going mad when bills come in daily. Happy trailing’s!!

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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, 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

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

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

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

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

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

Tips on How to Maintain Dental Care & Oral Hygiene In Parkinson’s Patients: By Dr. De Leon

Be true to your teeth, or they will be false for you.” Soupy sales

It is true that Parkinson’s in rare instances has been diagnosed by very astute
dentists who saw tale tell signs and referred them to a specialist who confirmed
diagnosis but this is the exception rather than the rule. So, it is up to all of
us who suffer with or care for someone with Parkinson’s (PD) to educate other health
professionals about our symptoms including our dentists.

This education begins with a thorough medical review of medications, symptoms. Your dentist
should as a routine monitor your blood pressure and other vitals and always discuss
any medical issues and changes to your medical regimen which might impact your dental care
in any shape or form.

For you see, as many of you have already figured out, having Parkinson’s can present a very complex
and unique set of challenges to you and your dentist when it comes to providing routine and not so routine care.
Plus, the fact that you have PD alone can cause problems with your mouth, gums, and
teeth due to multiple factors.

Therefore, it is important that you are aware of what the issues are and how to
be proactive in preventing problems. By being knowledgeable, you can be
instrumental in helping your physician(s) and dentist to work together to
provide the best possible care for you in order to continue to maintain the best
quality of life for as long as possible which includes maintenance of your teeth for
a healthy dentition but also a pain free mouth.

It is estimated that about 25% of patients with PD experience a syndrome known as
Burning Mouth Syndrome.” This problem can result due to multiple factors. The main cause is ultimately
the tissues in the mouth becoming dry. These occur as a result from things like
vitamin D deficiencies (or insufficiencies)-which are extremely common in PD; multiple medication intake
(especially PD meds like Artane -[trihexyphenidyl] or [amantadine]- Symmetrel which
cause dry mouth or decrease saliva input by blocking choline receptors). Other conditions which lead to mouth
dryness is known as Xerostomia (dry mouth from insufficient saliva production). Poor oral hygiene,
poor nutrition and even infections can also be some of the reasons patients with PD have mouth and oral
mucosa dryness. The dryness can subsequently cause pain.

However, before a dentist gives you a diagnosis of ” Burning Mouth Syndrome” make sure you check with your
Neurologist to exclude other causes of pain and burning in face and mouth which are
unrelated to Parkinson’s like trigeminal neuralgia, shingles, atypical face
pain, bruxisim (grinding of teeth) and are much more common especially in older populations.

Once other causes of pain have been thoroughly excluded and pain is related to Parkinson’s due to multiple factors above
it is the job of the dentist to help sort out which is the main culprit in the pain -whether infections, or lack of saliva,
or poor nutrition or hygiene …thus make a formal treatment plan to alleviate symptoms.
treatment plan can include things like:
Use of artificial saliva to help with dry mouth, for sailorrhea consider a
couple of alternatives sucking on hard candy of course sugar free…but don’t
want or increase cavities and increase diabetes so if drooling severe discuss
medication options like levsin or Botox Injections into salivary glands. Botox
injections are still the recommended treatment for bruxisim which causes severe
jaw pain ….this is most effective …guards do not worK! & are Expensive!
And usually break !

Also to prevent decay, make sure you brush regularly. It can be hard to brush
and maintain hygiene especially as Parkinson’s symptoms progress due to poor
dexterity, Loss of fine motor control, increase rigidity , tremors and
dyskenesias to name a few things so consider investing in a good electric tooth
brush. Also get a long handle for it to make it easier to maneuver.(I have had to switch because
my rigidity was preventing me to be able to brush properly my whole mouth …one side is stronger than another!)
This solved my problem and if you have trouble flossing use mouth rinse 3 times a day!
Some dentist have suggested putting a regular grip brush inside a bike handlebar grip or a
tennis ball for stability and dexterity.
Also, try a ” one handed” technique using the stronger side of your body. Brush
after every meal, if not able to do so at least rinse your mouth with water or
mouth rise. You should replace your brush at least every 3 months or if bristles
are worn.
Also avoid irritating products like alcohol, tobacco, acidic and spicy foods.

Because Vitamin D is so compromised in PD patients, 1/2 showing Vitamin D insufficient, while a 1/4 have
clear deficiency, according to Archives of Neurology report.
Therefore, I recommend, that all PD patients have their Vitamin D levels checked at least once a year by their
Neurologist or MDS. The Endocrine Society Recommends the following guidelines for blood levels in adults and children.
Vitamin D deficiency-20ng/ml or less
Vitamin D insufficiency- 21-29ng/ml
Vitamin D sufficiency – 30ng/ml or greater (NL)

Of course when you have dryness and take a lot of meds you are more prone to
dental sensitivity and tooth decay….I know that since I was diagnosed With PD,
I have had lots of tooth sensitivity that fortunately
responds well to Proenamel Sendodyne.

Aside from the issues of dryness, pain and sensitivity there are many other reasons why it is difficult
for both patients and dentists alike to deal with oral hygiene.
First of all tremors have a tendency to increase during stressful
situations and what can be more stressful than going to the dentist! Tremors can
be present in the tongue and head (although head tremors are not typical of PD
but more pathogneumonic of ET but there may be some overlap in some patients).
These tremors are involuntary movements and can be present as dyskenesias or
dystonias of the neck which make a routine cleaning extremely difficult much less any other dental work.
Another big problem PD patients encounter is salivary control or excessive drooling (sailorrhea).
Patients can also have excessive neck rigidity or stiffness including that of the facial
muscles making it difficult to open their mouth and or weakness causing problems with
swallowing or biting down during X-rays or cleaning.
PD patients by nature are anxious and can become even more so increasing their levels of fatigue
during their visits to the dentists. These symptoms are both caused by the illness itself and can be a
consequence of the medications patients are on. The combination of anxiety, fatigue can at times make it
very difficult for them to tolerate being seated upright for long or awake to be cooperative.
Along the same lines, some patients, especially in moderate to advance stages may suffer from
orthostatic hypotension[OH] again making it extremely difficult to sit for any significant length of
time or tolerate change in position in body or neck movements without
causing them to feel faint, dizzy, or pass out.
One way to compensate for [OH]is follow some of the maneuvers I suggested in my blog on [OH]….wear Ted hoses,
make SLOW body movements and talk to doctor about medication changes consider new medication Northera …

Finally, Tips to help ease your anxiety and make your visit at your dentist easier :
1) Make appointments when you are at your best whether in am or in pm…. Most
Parkinson’s patients have trouble getting going early in am…
2) Ask your doctor to give a sedative like Xanax or Valium to relax you and stop
or decrease the tremors. ( have a driver)
3) If need to then schedule general anesthesia …if you do need general anesthesia…may
not be able to take your oral meds especially Azilect
or other MAO inhibitors. Avoid or limit meds like Demerol OTC cold / cough meds, dextromethorphan,
pseudo ephedrine, phenylephrine, nausea meds
Antidepressants -MAO -a , ssri’s , Snri, tricyclics- all of these have potential of making PD symptoms worse
Also minimize narcotics and pain medications.

But you can still take
NEUPRO patch and take oral dissolvable sinemet (Parcopa) your neurologist can
prescribe this….you can also have IV amantadine and can have scopolamine patch
to decrease nausea and vomiting but of course if you are going to have any kind
of procedure whether you have general anesthesia or mild sedatives ( conscious
sedation) like Xanax need to have someone accompany you because you will not be
able to drive on your own. For pain Tylenol plus an anti-inflammatory usually works well.
4) request to be seated more upright to reduce aspiration risks.
5) make more frequent appointments ( every -3 months if you have gum disease), and of smaller
duration to avoid fatigue, pain, dystonia

(I know that my dystonia really kicks in if my cleaning lasts longer than 30
minutes then I have pain for few days which then triggers migraines…I avoid by
asking for 5 minute breaks…if you are not feeling well DO NOT be afraid to reschedule!)

if you need to have work done [Consider restoration of old fillings, ill filling dentures,
replace crowns and bridges if needed in early PD when things are a lot easier with a lot less need
more anesthetics or suspension or alteration of medications or risk of
complications because difficulty owning mouth etc. also consider dental implants
for over dentures before Parkinson’s gets severe].

References:

Arthur H.Friedlander, DMD, Michael Mahler, MD, Keith M. Norman,BA, Ronald L.
Ettinger, BDS, MDS,DDSc,DABSCD, “Parkinson’s Disease, Systemic and Orofacial
Manifestations, Medical and Dental Management”, JADA, Vol.140, June 2009

Devere Ronald, MD FAAN, “Cognitive Consequences of Vitamin D Deficiency”, Practical Neurology,
Vol. 13, No.1,January/February2014.

James M. Noble, MD, MS, CPH. ” Dental Health and Parkinson’s Disease”,
Parkinson’s Disease Foundation, winter 2009

“Low Vitamin D levels Associated with Parkinson’s Disease’, Parkinson’s Disease Foundation News & Review, winter 2009

Michaell A. Huber, DDS. ” Parkinson’s Disease and Oral Health,” The American
Parkinson Disease Association, Inc. 2007

Satbir Grover, BDS, MS, Nelson L. Rhodus, DMD, MPH, Dental Implications of
Parkinson’s Disease, Northwest Dentistry Journal, 2000-2013.MN Dental Assoc.

————————————————————————–

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
may also contact me at
deleonenterprises3@yahoo.com

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

Health & Beauty Tip # 26: Parkinson’s & driving- when is it time to call it quits? By Dr. De Leon

Health & Beauty Tip # 26:  Parkinson's & driving- when is it time to call it quits? By Dr. De Leon

Drive carefully! Remember, it’s not only a car that can be recalled by it’s maker.”
– Anonymous

“Why is it that you always say go faster when we are driving but slow down when we are walking?” ponders my husband, frequently, out loud…..

Although, I did not get my drivers license until my mid-twenties and in fact purchased my first car without one ……
Once, I hit the roads of Houston…I never looked back…nothing like the freedom of driving in an open road pushing the speed …. and even now with my illness my greatest joy is driving; makes me feel normal! I can control how fast I can go unlike my walking…which seems to have a mind of its own!

In this country, driving is not only a rite of passage into adulthood but also a sign of independence and freedom….
So, its no wonder we react so violently and negatively to anyone threatening to take this right and privilege away….we feel as if our own independence and livelihood are being challenged.

As, a young healthy physician, who could do whatever and when ever, I did not quite grasp the impact of asking my patients to give up their licenses voluntarily or even worst forced to surrender….
My naïveté cost me a few patients in the beginning…even though they were completely unsafe to drive and it was my duty and professional responsibility to look out for their well being….

I soon realized that it was best to put responsibility back on their hands by challenging them to prove to themselves and the state of Texas they were competent and save drivers…. they could take a course with occupational therapist or retake their driving test administered by the DPS -Department of Public Safety….this way the family felt better if DPS said ok or not ok and so did patients….
Further, we spoke of “retiring” from driving as you would from a job, etc. This, I believe made it easier psychologically in as far it became another “milestone” in life for an individual to pass through.

Certainly, the consequences of giving up the freedom of being behind the wheel cannot be totally dismissed from both a psychological and practical view.
This is true at any age …. whether you have been driving for 10 or 50 years….

I recall when I was first diagnosed with my PD and battling cancer…
I was unable to drive for nearly a year due to medicines side effects and weakness….it was like being a prisoner although my friends were excellent at taking me places. But loosing my independence made me feel like a real invalid having to depend on others for basic things picking up my daughter from school and going to the store for house hold supplies even going to the doctor…the fear and panic intensified as my driver’s license renewal approached and I was still very weak. Fortunately, I was able to keep going because I and my doctor’s knew this was a temporary condition…

However, the decision to give up or maintain a license is not always clear cut…there are a number of factors to consider…
The Parkinson’s Disease Foundation (PDF) put it best in an excellent article they published on the subject, a year or so ago, about the 4C’s to consider and discuss with your physician regarding driving safety.
These are as follow:
Concern about safety- if you or your family is worried about your driving skills.
Condition– are you end stage, unable to turn head and neck, unable to quickly apply breaks, or falling asleep at lights or extremely tired and fatigued and sleepy through out the day.
Crashes-if you had a fender bender or accident caused by you or caused other people to have accident or multiple fender benders and near crashes.
Co-morbidities– if you have severe dementia or cognitive impairments, or other medical problems making driving unsafe like weakness, or sleep disorders.
Then it is time to talk with your physician if he or she have not already done so. (for more information on the subject, visit PDF website under driving recommendations and 4C’S-www.pdf.org).

The majority of PD patients can operate a vehicle safely until it is inevitable with the passing of time and advancing of disease that many patients reach an impasse in which driving is no longer safe….

However, you must know that not only are you liable for any injuries to others on the road if you are not safe but so is your physician if he/she fails to inform you or advise you on the risk of impaired driving performance.

Furthermore, some states like Pennsylvania are implementing mandatory reporting of impaired ability to operate a car or motorized vehicle. Your permission will be asked but keep in mind that if you refuse and doctor feels you are a threat , the physicians responsibility to protect you and others supersedes any HIPAA rules and supports breach of patient confidentiality.

Stay inform and know your rights…

The American Medical Association (AMA) offers a state -by -state summary in a section of its website (www.ama-assn.org) which is also devoted to counseling patients about driving. They also provide a patient self screening tool which may be helpful for Parkinson’s patients to recognize their deficiencies and increase the willingness of the person with PD to formally consider driving assessments. Further, it also provides individuals a test battery called the Assessment of Driving Related Skills which can help the doctor obtain some objective information but in the end the best measure of safety driving is what I recommended my patients – a formal assessment of driving skills with a simulator or in a controlled testing scenario.
Finally, they have a downloadable handout called “Getting by Without Driving.”
The National Parkinson Foundation maintains a similar list.
Together, patients, family, care givers and health professionals MUST work in unison to find solutions for those that have depended on a car for activities of daily living like grocery shopping, going to the post office, going to work etc.
It will certainly entail a substantial adjustment on everyone’s part especially for the patient which might include new living arrangements.
However, given the consequences of driving impaired although extremely difficult and heart wrenching for some, relinquishing your license is NOT an OPTION if PERFORMANCE is IMPAIRED!

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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
may also contact me at
deleonenterprises3@yahoo.com