defeatparkinsons

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

Tips to side step most common travel- related headaches in PD patients: By Dr. De Leon

As the country has been hit by numerous winter blizzard storms keeping a large portion of the population in the north indoors going stir crazy while the northwest is affected by the pineapple express, here in the south well is anybody’s guess what the weather is going to be like from one minute to the next. One minute we are wearing our best summer dresses mean while the next thing I know we are gearing up for a wintery mix pulling out my scarves, gloves and parka jackets. As you all know, extreme temperature and PD do not mix, particularly cold weather. It appears, at least in my experience that my Parkinson’s symptoms worsen dramatically. I have it on good authority that it does the same for many of you. So, I have started dreaming of an escape to a nice temperate climate to soak in the rays and get a chance to stretch my muscles outdoors without fear of falling, slipping in the ice, catching pneumonia or the flu. Perhaps you too are planning your romantic escape to whisk your loved one away for a couple of days to celebrate Valentine’s Day? Maybe we are just plain dreaming of leaving all the cold behind.

How do we manage our PD when we are away from home? How do we stay healthy and happy?

First before you travel or go anywhere you should always have a traveler’s medical kit ready.

Be sure to bring your Aware in Care Parkinson’s ID bracelet or wallet card with you. If you don’t have an Aware in Care kit, contact NPF’s free Helpline at 1-800-473-4636 while in the planning stages of your vacation.

Carry with you at all times all your medication including prescribing physician, should also carry snacks and water/juices
Make sure you continue to take medication at regular intervals despite time zone changes.
Pain medication – such as Tylenol or ibuprofen. I find that a Tylenol and a Motrin go a long way to cure most types of pain.
A mild laxative
An antacid
Medications for nausea
Medications for motion sickness
Hand sanitizer

Once you got your meds in place before considering your destination think about the logistics of getting there. Is it easy to do unassisted? Will you need help on the way? As most of us get past stage 1 of PD sitting for a long period of time can be problematic. Even early on RLS can be an early symptom and cause difficulty if sitting for a prolonged period of time. You know you can do it but still want to have a backup plan. Make sure there will be assistance at the airport, train station, bus station or cruise ship.

Finally you bypass all those hurdles and you are on your way to your dream vacation. However, this means being away from home, your doctors, your routine, your comfort foods so how do you manage to stay calm and enjoy your time away from home?

Well, first if you have a DBS you never have to go through the airport security machines again! This is a big plus. Have your doctor write letter and carry with you and inform them when you make reservations so they don’t give you hard time. Don’t forget your magnet at home. But since some of us PD patients may have a higher risk of certain cancers like breast or skin cancer do not worry that going through airport security will increase these risks by exposure to x-rays. Now they use millimeter wave scanners which use radio waves and are not believed to be a cancer risk!

Exercise to avoid rigidity and blood clots:

If you’re going to be on a plane or whatever mode of transportation of your choosing for a long time sitting make sure that you move around 1) to avoid blood clots and 2) to keep from freezing. One interesting fact: the risk of blood clots increases 2-4 fold by long distance air travel- same is true by other modes of transportation such as car etc. and if you choose the window seat as I often like to do, the risk doubles – this is presumably because people move less. So if you sit in a window seat make sure you still move around! Make sure that while you are sitting every hour or so do 5 minute of stretching. Flex and extend your feet like pressing on gas pedal and stretch arms and rotate neck. This will keep you limber, decrease pain and decrease blood clots and if possible walk down the aisle.

Constipation:

Constipation is the universal symptom that unites all of us Parkinson’s patients. We all know how uncomfortable it feels to be constipated. Now imagine that you are seating immobile for hours the body naturally goes into maintaining homeostasis which means every non essential organ shuts down. Constipation is both caused by our illness as well as aggravated by the medication and lack of activity can take it up a notch. In order to avoid this problem, I recommend that you drink at least four 8-ounce glasses of water daily. Take stool softeners before departing and on vacation. Carry some laxatives with you just in case. Try to maintain normal meal hours and carry high fiber snacks like nuts and fruits. I like carrying Nonni’s THIN Addictives which come individually wrapped; fruit and nut cracker snacks. They come in various flavors pistachio, cranberry are my favorite

Motion Sickness/Nausea/Vomiting:

We all know that Parkinson’s patients have our fair share of gi problems including a predisposition to nausea, vomiting and upset stomach particularly when we are traveling due to increase stress, decrease gut motility, poor nutrition during travel, and increased constipation subsequently. Prevention goes a long way to making your life and travel a lot happier. Best to take a nausea medication before departing (if possible carry sublingual nausea pills) it beats trying to find water, bags and air to cool off in the midst of your traveling. Of course along with these symptoms motion sickness can kick again particularly if blood pressure low, constipated, sleep deprived, or if you are prone to migraines. The condition usually occurs as a result of brain getting mixed messages from your eyes, ears and body. Motion sickness is a lot easier to prevent that to stop once in motion. If you know that you have migraines- take a migraine medicine before departing also the nausea medicine should keep this in check but just in case carry something like scopolamine patch to be placed behind the ear . it usually takes a few hours to work but can offer relief up to three days without the drowsiness that antihistamines would cause ( which also work).

Pain:

Traveling can exacerbate pain of all sorts because we don’t move as we should and we are cramped in small spaces for a long time, medicines may not be absorbed as well if we get constipated or we miss a dose because of schedule and we might even unwillingly injure ourselves carrying our belongings. Again, prevention is the best approach. Take your migraine medicine and muscle relaxants before departing. Consider getting a deep tissue massage before and after the trip it will go a long way to keeping muscles limber and by all means do not forgo your exercise routine just because you are on vacation. If need be consider carrying parcopa (sublingual levodopa/carbidopa) which will kick in fast if need it without having to find water or worry about the status of your gi tract.

If you follow these simple steps as I do you can travel to your destination with greater ease and comfort and be ready to enjoy your vacation upon arrival.

Happy Valentine’s Day every One!

***this advice is not intended to take place of your physician counsel and recommend discussing any and all changes to medications and above with them before instituting!

Sources: “7 ways to stay healthy on vacation.” Consumer Reports on Health June 2014

www.parkinson.org

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DAT Scan: Can it Really Tell Me I have PD? : By Dr. De Leon

Dat Scan (Ioflupane I 23 injection also known as phenyltropane) is a radio pharmaceutical agent injected into the veins of a patient known as SPECT nuclear medicine test. When this test was approved in was under the premise that it will be an added tool in the armamentarium of the neurologists/ movement disorder specialist to help decipher difficult cases.

So, the answer to the question…can it tell you have PD? – NO!

The test can’t confirm you have PD! – it can only tell if there is abnormality in the dopamine system which can include any and all of the Parkinson’s plus syndromes including Parkinson’s disease. If abnormal it means there is a problem in the dopamine system period.

Furthermore, like any test is user dependent. My husband who is a neuroradiologist in a small community who has extensive experience in reading PETs for lots of disease and specializes in the brain would not give an accurate reading of a DATSCAN as his colleagues up the road in Houston at the medical center who do hundreds of them. Since the only PET scans of the brain that have been FDA approved are for diagnosis of dementia- there are standard things that the radiologists look for by guidelines set by the Academy of Radiology who also mandate general training in reading of these tests across the border to all practicing radiologist to maintain their credentials. However, no such mandate has been given in the reading in SPECT or DAT scans for diagnosis of PD and only those that are in academic centers who have seen hundreds of these studies are actually the only ones qualified to give an expert opinion as to the “quantitative” measure of the uptake in the brain.

If you have received a diagnosis of PD from an expert specialists in movement disorders and are improving or responding to dopamine therapy there is no reason or gain by getting a Dat scan. Likewise, if someone suspects of Parkinsonism due to PSP, MSA etc. no added benefit will be obtained by getting this scan, you might in fact be wasting your money ($2500 to $5000) and time.

This test was only intended to be used as another diagnostic tool to help decipher between dopamine and non dopamine diseases which can mimic PD. Now it is over used unfortunately for the wrong reasons. The FDA only intended to be used to differentiate between essential tremors and PD. In my humble professional opinion, Dat scans are not required for treatment or diagnosis and only place for a Dat scan is in academics for studies or in rare cases where a procedure like DBS or Pallidotomy is being considered and physician is not sure if treating essential tremors vs. PD; which if this is the case, I would be reluctant to have a brain surgical procedure when clinical diagnosis is in question! This invariable will lead to poor outcome… many other treatments can be employed until diagnosis is certain.

Another thing because the trace used to measure dopamine activity is radioactive and expensive is not ordered till the day or night before the test. Thus, if you decide to cancel at the last minute because not feeling well you are causing the facility to lose a lot of money and some facilities may even charge you for it. If you have history of thyroid disease or take thyroid replacement you may not be able to do the test.

So short and long …Doing a DAT SCAN CAN NOT TELL ANYONE THEY HAVE PD – do not be fooled by those that claim otherwise!!! Parkinson’s unfortunately still remains primarily a clinical diagnosis and ONLY way to diagnosed with 100% certainty is brain biopsy or at autopsy. However, there is a caveat, with more studies being done in academic centers understanding and standardization of DAT scan reading is increasing slowly among those involved in the field. at the same time we are slowly gaining knowledge of PD and its varying presentations. Therefore, it is conceivable that in the near future, we might be able to combine the knowledge of two to predict and detect patients who will develop PD.

According to a new study, Danna Jennings, MD, Clinical Research Director at the Institute for Neurodegenerative Disorders in New Haven, and colleagues have attempted to do just this via the Parkinson Associated Risk Syndrome (PARS) study to identify a large-scale cohort of individuals at risk for Parkinson’s disease using olfactory testing and DAT imaging. What they have found is that although no one had PD symptoms at baseline despite abnormal DAT scans or reduced ability to smell ; 46% of individuals with loss of sense of smell combined with a deficit on the DAT scan have shown to develop clinical features of Parkinson’s disease within four years.

“The knowledge that comes from this study will have important implications for the recruitment of individuals for future neuroprotective trials,” stated Dr. Anthony Lang, Director of the Movement Disorders Clinic at Toronto Western Hospital. Remember, in a previous blog “Thinking Outside the Brain for a Parkinson’s Cure,” I commented that often trials fail or are doomed to fail from the start when it comes to finding neuroprotective agents because we often don’t even have the right diagnosis. If we are able to successfully predict who will develop PD from these early markers: 1) we can institute treatment a lot earlier in hopes of retarding or slowing progression and 2) trials may have a greater chance of success than previously; because we may no longer have to wait until a patient’s disease evolves to the motor stage causing obvious manifestations of Parkinson’s disease in order to include in “early –stage” trials which by definition is no longer early since by then these patients have lost at least 50% of their dopamine producing neurons.

Source: Olfactory Testing and DAT Imaging May Lead to Early Detection of Parkinson’s disease. Neurology Reviews. 2014 22(8):18-21.

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What If the Cure to Pain and Other Non-Motor PDSymptom was Sleep?: By Dr. De Leon

Those of us who have chronic illnesses like PD often experience chronic pain as well. This in turn leads to increased problems with sleep- falling asleep, staying asleep as I am experiencing radicular pain at this moment keeping me up! (fortunately, I have taken my medication and waiting for it to kick in so I can have a good night’s rest)

The lack of sleep causes those of us most in need of pain relief to have more pain by depriving our bodies of the healing effects produced by a good night’s rest. If we don’t allow ourselves to rest and have deep sleep, this can then lead to a vicious cycle of pain and sleep deprivation.

According to the director of Behavioral Sleep Medicine at John Hopkins, Buenaver says that “people often make their situation worst by dwelling on the problem, and worrying about their pain.” So, I often recommend taking a strong pain medication even if it is an occasional narcotic to break the cycle and prevent the brain from becoming sensitized to pain. Because once pain becomes chronic it is much more difficult to treat because our brains have accustomed themselves to thinking there is nothing to be done to make the symptoms better. You are defeated even before you have begun. This thinking is akin to an elephant who falsely believes it can be held captive or in place by a small chain not realizing its own potential because since they are small elephants in captivity are tied to trees which can hold them while young but not as they get stronger. The negative feelings that surge with dealing with chronic pain, the behavioral sleep director states, make those of us with chronic pain more sensitive to its effect.

His suggestion is to replace the negative thoughts, once they are identified, with a more balance positive train of thought which in turn is more likely to elicit greater sleep; since positive emotions not only cause relaxation but can actually ease pain by releasing chemicals like serotonin.

Next time you are bombarded with a negative thought or feeling, you have the power to STOP IT and replace it with a positive one…try it! We begin by adjusting our mind sets, resetting our nocturnal habits- turn off all electronics, lights and commence meditation (prayer) adding positive thoughts to your daily life; otherwise we are not just sleep deprived but we are also hurting ourselves in more ways than one by potentially exacerbating all of our other non-motor PD symptoms.

Sleep impacts our entire being from our brains to how our body performs. Michael Smith, director of John Hopkins Center for Behavioral Health states that” during sleep the space between the cells in our brains expand and allow fluid to flow through the entire brain and wipe away all the toxins of the day -that our brains put out.” We essentially clean house at night making for a more efficient and effective brain free of pollution. We all know what happens if we stopped cleaning our house? Soon it will be filled with garbage and uninhabitable.

Well, the same is true for our brain! We all know that when we are sleep deprived our minds operate less effectively and less efficiently. This is because it has to work extra hard to get over the trashed produced during the day’s activities. At night is when we sift through the waste and store what’s important. If not allowed to do this properly we become slower to recall and our reaction times increase…in a disease where we are already limited and experience slow recall and reaction time we do not need to increase this deficit by depriving our selves of sleep. Furthermore, sleep deprivation affects our prefrontal area – which is our decision making centers, also the area known for dealing with complex emotions and impulse control.

If we are hurting and sleepy we are at a total disadvantage to deal with primitive emotions like base needs and desires thus much more likely to succumb to impulse control effects of the PD medications. Lack of sleep can cause us to be anxious and emotionally become a train wreck which can even lead to severe depression if we allow ourselves to become chronically sleep deprived.

Remember, as I mentioned before, sleep helps with pain and healing. Sleep deprivation causes increase in inflammation which puts the neurons that fire up the pain signals on high alert ready to shoot at a moment’s notice. The neurons responsible for pain become extremely active -no wonder we are more pain sensitive when tired! From personal experience, I know that when I hurt the best remedy for me is to rest and sleep. Even my husband has become attuned to this- if I get enough sleep, I don’t hurt. The worst part is that researchers have discovered that disrupted sleep is even worse than sleeping for shorts amount of time…continuous arousals or interruptions in our nightly sleep cause greater inflammation and greater pain sensitivity…perhaps this is a reason why women and people with PD who have significant bladder issues or are wearing off at night tend to have greater pain? Even those of us who have REM behavior or severe RLS can be more likely to develop chronic pain if sleep continues to become disrupted.

As if being fuzzy minded, emotionally a wreck and sensitive to pain was not enough, sleep deprivation also increases our waistlines by making us eat more caloric foods, and increasing our food urges. Of course with all this topsy- turvy our bodies experiences when we don’t get enough sleep, we naturally become more fatigued. Perhaps, all of our Parkinson’s non motor symptoms would be much better off if we all took a concerted effort in making sure we not only got enough sleep (at least 6 hours a night) but, also a deep restful uninterrupted sleep.

Since, lack of sleep can lead to poor thinking, mood disorders, inhibit our abilities to deal with pain and actually increase our pain sensitivity while making it harder for us to metabolize food increasing our waistline- which by itself can put us at risk for other health issues. Therefore, it is imperative that if you are experiencing problems in any one of these areas, you speak with your doctor ASAP about adjusting medications for bladder, for “off “symptoms at night, RLS, and ReM behavior, pain and yes, perhaps asking them for a sleep medication to ensure a good night sleep.

However, things we can do to improve our lives and sleep are as follow:

1) Exercise in day time not night-preferably early in the morning @ least 3 times a week for at least 30minutes.

2) Limit caffeine intake- especially in the evening. No night caps-wine actually leads to rebound insomnia.

3) Control lights- turn off all electronics- do not read or watch TV in bed. Bed is only for sleep and sexual intimacy. Maintain your sleeping area cool and dark.

4) Relax. – have a ritual and a set time to go to bed and get up. Begin winding down and shutting off electronics at least an hour before bedtime.

I guarantee we will all be feeling much less pain, fatigue, forgetfulness, depression, and less likely to succumb to ICD’s (impulse control disorders).

Sources:

Richards, Sarah. (Fall 2014): “Cheating Sleep.” Johns Hopkins Health Review. Vol. 1(1):70-77.

“Hurt less, Sleep more.” (Psychology): (Fall 2014): Johns Hopkins Health Review. Vol. 1(1): 19.

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10 Ways to Go Red — Go Red For Women

10 Ways to Go Red — Go Red For Women.

Tips on Getting Disability Benefits Efficiently & Effictively: by Dr De Leon

Getting Disability Benefits: Is It Always Necessary to Hire a Lawyer? Part I : By Dr De Leon.

Tips on Getting Disability Benefits Efficiently & Effectively: By Dr De Leon

When confronted with a chronic illness like Parkinson’s disease, after the initial shock of diagnosis settles comes the question will I be able to continue to work and for how long? Studies show that one of the biggest factors of loss of employment is depression in PD and along with it goes a decrease in quality of life. Continuing to be productive in society and working has a higher rate of overall life satisfaction along with better life within those who are chronically ill according to a recent study on the mental health issues that lead Parkinson’s patients to lead the work force.

Thus, deciding to stop ones job is an extremely personal and emotionally charged decision one will ever have to make. If you are like me, your job has helped define who you are. Suddenly stopping ones employment can leave one feeling empty and striped of one’s own identity and wondering aimlessly if not careful. I thought that my identity was tied into my profession – being Dr. De Leon -was all I ever knew- it was hard to adjust to being just me away from my job. Finally, I realized that although my career was my vocation and passion it was only a part -albeit a huge part- of who I was and am as an individual but by no means the entire person, I am still a mom, wife, daughter, friend just as before.

For some not working has never been an acceptable alternative. It may be difficult separating the job from the person at first. However, at times we have no choice but to stop performing the “job” we once enjoyed or were good at. Our bodies demand that we take a time out and our physicians sometimes tell us that if we continue to work we are doing so at the cost of our mental and physical health. Then it is time to step back and make some hard decisions.

The question becomes: to work part time? Stop? Change jobs? Apply for disability?

In my case, for instance, at the time of my diagnosis the stress of my demanding profession was making my illness worst, I had already tried working part time- a difficult Thing to do when you are a solo practitioner with a thriving practice. I was unable to take all the medications that I needed to function physically and not feel that I was somehow going to be compromised mentally. So, it was decided with the help of my physician and my husband that I should take a time out to let myself heal.

This was not an easy decision to make, by any means, since like most who have worked for years in a profession have invested more than time and effort but actually invested their lives, sweat and dreams in a career; to then be asked to give it up or walk away can break your heart!

As a doctor and as a patient, I have experienced unfortunately the slowness and sometimes unfairness of the system in providing help and disability to those that truly needed it. I have had ALS and Cancer patients who even on their last stage of their illness were denied help despite the severity and finality of their disease. Other times help was delayed so long that they end up without benefits or received them as they were on their death bed. In these cases, having a lawyer to advocate for your rights would be most beneficial.

It is usually when patients are sickest and weakest that they have the least amount of energy to go through the system. Applying for disability I think is a little game of wills and persistence. In my experience it seems that almost 1/2 of the patients get denied right from the start and have to be persistent in reapplying. What happens initially, I think, as it did a close friend of mine and many others like her….is that most of us who suddenly become ill do not like to give in to the illness and will strive to make it work for as long as possible until we can no longer keep doing our jobs then apply for disability or assistance to be met with denial when there is financial and physical hardship. Therein lies the problem with the current system; it is as if they punish people who earnestly try to continue making a living despite the illness or physical disability or impediments. The current system rewards those that anticipate or somehow plan to be “disabled” and don’t really put much effort into continuing to work with an illness. This is a very difficult thing to grasp. The system is broken and in desperate need of repair! (but more on that topic another day) when applying for disability whether it be through private insurance or social security, they expect the person making application to show extensive documentation of gradual decline both on skills and in wages…

Therefore, the key to getting disability efficiently is documentation :

DOCUMENT! DOCUMENT!

This starts as soon as you are diagnosed! Even long before you think about applying for disability or ceasing work!! (You almost have to assume that you will need to stop working and will need assistance at some point.) Especially important to write down how ADL’s (activities of daily living) are impacted – as soon as you are diagnosed start writing down how your life is impacted. What you can’t and can do. Download a form from the www.parkinsonsaction.org website which will help you and your physician keep track and document important changes. This form is not admissible to SSI or other insurances but will serve as a guide. You may keep one for your records and have another put into your permanent record.

The form includes 4 parts: section I- motor impairments such as difficulty walking; section II-physical impairments such as having to urinate frequently or having double vision; section III-non-motor impairments like trouble concentrating, staying on task, memory problems fatigue and anxiety; section IV- additional physician comments as within all above sections physician can make comments.

Even when you think everything is settled and have professional insurance that’s no guarantee as it happened to a friend of mine because 1) most insurances expect a date of start of illness and a foreseeable date when illness resolves- they have a hard time or are unwilling to understand that chronic illness by definition have no date of improvement! 2) Some insurances may even try to argue that problem like PD is hereditary or familial problem. These cases may require a lawyer!

There are 4 disability benefit program that can help you will unable to work:

Short-term disability insurance

Long-term disability insurance

Social security disability insurance

Supplemental security home – designed for people with limited income and resources

Talk to your employer about changes in duties- doing repetitive or single task are best for pd patients. Don’t forget to document when and whom you talk to. It is important to understand application rules before applying. Don’t be afraid to ask questions of your employer or the human resources office of your work or even of your insurance company before you decide to apply for disability.

Be informed!! This will help avoid many headaches … Also, remember that usually by time you are in need of disability is usually because you have reached your limit of your physical and mental capabilities which may make the process that much more painful. Therefore, if you are not up to the challenge alone, make sure you take a friend or relative who can advocate for you or get a lawyer.

You can apply for SSDI- in 4 ways:

Online @ www.ssa.gov
In person at your local Social security office
By phone to your local Social security office
By phone @ (800)772-1213

http://www.ssa.gov/disability/disability_starter_kits.htm#sb=1

Science News (Nov 2014): study finds that mental health issues lead people with Parkinson’s to leave the workforce.” PDF http://www.pdf.org/en/science_news/release/pr_1415296989

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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

Excessive Sweating In Parkinson’s Patients: by Dr. De Leon

Excessive Sweating In Parkinson’s Patients: by Dr. De Leon.

Excessive Sweating In Parkinson’s Patients: by Dr. De Leon

While I was still in practice, patients often would complain of having increase sweating particularly at night. Patients would often say to me; “I have a very hard time sleeping at night because of the sweats… and even Harder time staying dry!” I often concentrated more on the ‘lack of sleep’ and did not fully grasp the significance or discomfort, for that matter, of the “sweating” which was the real culprit. The issue of “sweating” somehow did not seem to be such a big problem in the grand scheme of ALL the other Parkinson’s symptoms.

But in reality, “excessive sweating” can be a real problem and if significant enough it can truly put a big damper on someone’s lifestyle; this in light of the fact that PD is already an extremely public disease for most of us. Unfortunately, sometimes in society we are judged whether we like it or not, primarily on first impressions which usually are as superficial as an appearance. Now, imagine the pressure, us PD patients’ feel, at times, when we go about in public being stiff, unable to smile with tremors and involuntary movements (dyskenisias) which only serve to fuel our inner anxiety causing a rise in our temperatures making us perspire even more adding to the embarrassment of being seen in public. Worst, although sweat typically does not smell…sweat caused by stress or anxiety does!

This overall scenario would make anyone of us want to hide under a rock or never leave our homes. However, there are a few steps we can take so that at least we can minimize our perspiration and reduce any chance for any offensive odor which might make us more self aware.
First of all, normal sweating helps to keep the body temperature in check like in hot weather or during high temperatures such as fever, or during exercise. Excessive sweating (hyperhidrosis) means that you sweat more than normal even when you are not particularly hot, anxious or exercising. People with Parkinson’s suffer a number of changes in the skin one of which is increased perspiration. These changes can either result in under secretion (hypohidrosis) or over secretion presenting usually in the form of night sweats after starting on dopamine medications especially levodopa is very common. But, because sweat is a way for our bodies to regulate our internal temperature any changes can be potentially harmful plus can cause severe emotional distress to an individual homeostasis and their lifestyle. For now, we are concentrating in the increase of sweat production.

So, why does this happen and what can we do to decrease the excessive sweating that may be contributing to our reluctance to go out in public or interfere with our intimacy and sex life?

It is important to remember that all Parkinson’s people experience changes to their skin…skin is full of dopamine!

Over time Parkinson’s individuals lose sweating capabilities in the extremities like the hands and feet therefore increasing over the entire body as a compensatory mechanism! This process only worsens as the disease progresses. Plus, Parkinson’s medications also can cause generalized sweating or hyperhidrosis. Other causes of increased sweating are thyroid disease, anxiety disorder, cancers, and other hormonal problems to name a few as well as medications.

Anticholinergic medications can block sweat causing a dangerous rise in body temperatures especially in hot weather; hence it may be important to reconsider their use if you are an elderly patient or cut down on dose during the summer /hot months. This is because older people have a harder time regulating temperature especially during summer months if they live in very hot climates. Levodopa usually causes severe drenching especially during “off” states; but can also increase sweating at other times like night time. Therefore it is important to talk to your physician to adjust medication because if you are experiencing such severe sweating during the “off” state which usually means other motor and non-motor symptoms are uncontrolled during this time as well.

What can you do?

Have medicines adjusted by tour physician /especially levodopa
Take lukewarm showers/baths
Drink extra fluids particularly water, even Gatorade and pedia-lyte (which comes in popsicles- best for hot weather)-stay hydrated
Wear light cotton clothes
If sweating is severe talk to doctor about medications like propranolol

In order to avoid body odor due to excessive sweating:

1. Make sure you use antibacterial soap when bathing

2. Towel off completely

3. Use “industrial strength” antiperspirants/ deodorants – work best if you apply at night before bed time not after showering or will wash off; it takes 6 to 8 hours for antiperspirants to enter sweat ducts and properly clog pores plus body is cooler at night. But do reapply at least once during the day.

4. Keep clothes clean and use garments which do not lock in sweat or bacteria, like cotton. Cut out or decrease offensive foods and drinks-like onion, garlic, alcohol, and spicy foods which tend to increase temperature of the body and wear breathable shoes and clothes.

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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

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