caregiver

Tips for Making Life Easier for Both Caregivers & Chronically Ill Alike : By Dr. De Leon

Last month I have been dealing with my dad’s terminal illness. I have had my moments of frustration as many of you have in taking care of loved ones with chronic illnesses like PD because sometimes what we think is best for them is not what they think is best for them. So how do you decide when to step in and when to watch from the side lines (cautiously holding your breath). This question is extremely complicated of when to override their needs and desires for safety sake?

For example my dad is very frail getting extremely weak and has fallen twice but still insists in using a walker instead of wheel chair which makes me cringe. It is important not to fall into a trap as a caregiver of assuming what the person with chronic illness or PD needs or wants. It would be best to ask that person what their wishes are. An honest and frequent dialogue can go a long way in maintaining the personal dignity of the care recipient or patient as well as that of the care partner who will not come across as a tyrant but rather truly caring individual.

Learn to compromise- avoid disputes and old issues from getting in the way! During chronic illness especially as a loved one reaches end of life; this is the time to stick together! So as to make him or her feel like he/she still has some independence …so instead of forcing wheelchair in the case of my dad, I explain my concern for him of falling again.

You must Reiterate your concerns in a compassionate manner – I explained to him that we had been lucky until now not to have broken any bones thus far. But, as his bones are frail and weak any small apparently insignificant injury even a simple bump from sliding off the bed can lead to a hip fracture or wrist fracture. However, if we are to not use wheelchair, then we must have a safe plan in place. So, he was instructed to call someone first prior to getting up either from bed or sitting to alert them of his intentions of wanting to be mobile. He then was to Sit at side of bed if reclining for few minutes rather than  jumping up from laying ( although  this is more theoretically purposes just so that he remembers to take it easy because in all honesty he is not jumping anywhere when movements are extremely slow, deliberate and  laborious); these recommendations are meant to safeguard him from getting orthostatic, dizzy and avoid subsequent falls. Furthermore, I again instructed him on appropriate safe use of walker and asked for him to carry safety belt around so if he does slip it would be easier for me or my mom to catch or lift him up.

Learn to coordinate: some of us are better at this than others. If you are good at delegating and seeing the big picture- this is your calling. Nothing is more important than having a game plan! For instance, I am good at this … While my mom tends to daily needs of my dad I can step back and see what needs to be done so I can guide my mother and assist her in getting things done. For instance dealing with matters of insurance, are documents in place?  Are Wills done?  Over see funeral arrangements if dealing with end stage disease and terminal as is my dad’s condition? Are other legal documents in order?

Because, as we know when we are dealing with the task of caring for someone 24/7, we can become so overwhelmed we sometimes can’t see the trees for the forest. This is especially the case when death is imminent, our judgment can become clouded and we may become paralyzed with grief! Be the one that initiates conversation and steers it in a positive direction to get things that need done taken care of.

Learn to facilitate: emotions tend to run ramped when dealing with a chronically ill loved one.  It is hard to step outside your situation and see things objectively. This is when a friend, pastor, social worker, healthcare professional or in my case a relative that does not live there all the time comes in handy. They will ( I-you can ) provide valuable insight into the situation, give impartial advice to diffuse a stressful situation by offering prayer and even referring to other counseling services, support groups and other resources on line and to other community organizations that may be able to assist with specific needs. (i.e. Help find a sitter)

Learn to listen: this is the most difficult task of all! Some of us hear but don’t really LISTEN. Listening takes special skills understanding and putting one in the other person’s shoes. When we are in a stressful situation we all desperately need to be heard so everyone talks but No one LISTENS! Often times no words need to be uttered to have truly listened and made the person you are caring for feel special, unburdened, understood and loved. The same rules apply for the caregiver … ask them to tell you their story. This simple act can allow them an outlet to relieve their stress and open the door of communication and a way for you to offer assistance in the area of their specific need. (E.g. My dad still wants to maintain some semblance of dignity and independence/ mom wants not to have  him break a bone and hurt herself in the process if he falls). So, we came up with specific compromises on how to do things like grooming in a manner that is safe and convenient for everyone.

Lastly but not least learn to socialize: again if you are a leader or a take charge kind of person or event planner, this would be right up your ally… After all we are social beings …most of us even the shyest of us (we) thrive when we are in bonding with others either individually or as a group. Therefore, it is important to plan social outlets to get the caregivers out of their stressful situation from time to time to avoid depression, loneliness, feelings of helplessness, spiritual exhaustion which might lead to suicidal ideation but also to remind them they are individuals that have unique talents and gifts. It is important to Do the same for the patient – (to avoid same type of feelings) the social activities can be done together or separately-best if done separately from time to time.  Help organize activities for family, individual etc. Put your imagination to work. Even if it means taking them out for an unexpected ” ice cream ” run or whatever their favorite activity may be like in my dad’s case fishing (even if it’s just in a pond, bucket, or fish tank because he is now too sick to go outdoors far away from home fishing as he would like) and my mom -shopping! (Of course don’t forget to get someone to watch patient while care giver goes out).

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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

memory loss

Tips on How to Maintain a Healthy Brain: By Dr. De Leon

I am sure everyone is familiar with the term “use it or lose it.”  Well, this has greater impact on our brains than you might imagine like our muscles in our body atrophy and become weak from disuse or lack of activity so does our brain “muscles” if you will, if we don’t challenge them on a routine basis.

In this day and age of increasing numbers of many of us living well into our 70’s and beyond the risk of developing dementia increases as we age.

However, this does not mean that we are doom to develop dementia (Alzheimer’s being the most common of all dementias but also things like Parkinson’s dementia which occurs in up to 50% of patients with PD). Yes, we all have experienced episodes of forgetfulness from time to time making us worry if this is simply part of aging or something more serious? How many times have you been looking for your glasses frantically only to discover that they have been on your face all along?

We all have experienced similar occurrences at one time or another usually because we are preoccupied with something else. But, how can we avoid such situations from becoming a frequent embarrassment or even leading to dementia?

You can prevent further unwarranted anxiety by following a few simple strategies.

Dementia implies not only memory loss but a loss of  previously acquired set of skills like speaking or being able to dress on self etc.

Here are some simple rules that might help you develop a stronger and healthier brain. It is never too late to start taking care of yourself.

First, it turns out that vitamins play a huge role in memory particularly B vitamins as well as D.  Both of which have been implicated in Parkinson’s disease. Many patients are deficient in these two crucial vitamins which could perhaps at least in part explain some of the high rates of dementia. (further studies in this area are warranted to see if there is a correlation) however, one thing is for certain that vitamins like B12 which are found primarily in dark greens, eggs, and red meat (which has the largest quantity) are essential for maintaining and improving memory, strength and balance. B12 deficiency (levels lower than 400 pg/ml) can lead not only to severe memory loss mimicking dementia but also paralysis.  So make sure you eat plenty of dark greens and meat at least once a week. Take B12 replacement if required by your physician. If levels are below the recommended 400 pg/ml, they need to be substituted intramuscularly or intranasal.

Second, we all love the sun, but lately seems like we are just not getting enough sunshine either because we are not spending as much time as we need to outdoors because of illnesses, too many indoor distractions like TV, social media, or the makeup we wear has such high UV light protection that the sunrays are not being absorbed through our bodies. But also because people over age 65 simply don’t convert sunlight to vitamin D as young people do; in fact they are 4 xs less capable of performing this activity.

Furthermore, dark skin individuals don’t absorb Vitamin D as well either. This is especially important since, recent research reveals that at least 30 minutes to an hour of outdoor activities is needed to not only improve our memories but also maintain our brain’s health. In an even more recent study released in Neurology on August 6,2014, scientists  noted that Vitamin D deficiency increased risk of all dementias if levels fell below 25ng/ml and improved over 50ng/ml (which is way above the norm). This again supports the notion that vitamin deficiencies especially in chronic illnesses like PD could be at least in part the culprit for so many of us developing dementia particularly when ½ of all PD patients are said to be insufficient, and ¼ to be deficient as per the Archives of Neurology. So, make sure you go and play outside, go for a walk. This also could be the reason why people with PD that exercise do better physically and cognitively because my moving and exercising we are stimulating production of vitamin D (this hypothesis needs to be tested as well). Also, be sure to increase dairy product intake if not contraindicated by your physician and have your levels tested at least once a year just like the B12.

I know many of us sometimes shy away from certain dietary foods because of poor GI motility from both the PD medications as well as the disease; but we may be doing ourselves a bigger disserves by not consuming enough of these products increasing our deficiencies-consult a dietician if not sure daily requirements or talk to your physician.  If Vitamin D levels are below <25 ng/ml (which is within the insufficiency level, deficiency is <20ng/ml, while normal is above 30ng/ml) as per the latest study, I suggest you talk to your doctor about replacement either with prescription or over the counter medication.

Third, most of us seem to be sleep deprived particularly those of us with PD due to pain, meds, etc. But it is important to recognize that poor sleep hygiene not only increase risk of obesity, but also leads to faulty memory. It can also lead indirectly to strokes, diabetes and high blood pressure. This is because it is through sleep that we sift through all the day’s activities and store memories and information from short term bank to long term. This of course cannot be achieved if we don’t have enough time to process all the information. Make sure you get enough sleep. If trouble sleeping talk to your physician and also may want to look at my blog http://www.defeatparkinsons.com/Tips for Dealing with Sleep Disorders in Parkinson’s.

Fourth, exercise your brain on a daily basis to keep fit. How do you do this? By doing mental exercises which can be done anywhere anytime. Learn a new language, make new friends, do cross word puzzles, read new books, learn new skills, take up painting, photography, sculpting, writing, anything that stimulates the brain- make sure to make it fun!

So remember, a healthy balanced diet full of greens, meat, proteins, plenty of sunshine, exercise both physical and mental along with a good night’s rest will not only prevent cognitive decline but release a new you with an  improved happier, healthier brain.

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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

The Art of Caring

Originally posted on Parkinson's Women Support:

3rysers-w

JUNE 14, 2013 | by Darcy Blake | Now that you have Parkinson’s Disease, thoughts of the quality of your care arise as you become less independent. You hear a patient’s stream of complaints that triggers a caregiver’s reaction delivered between clenched teeth and you shutter, “I hope I don’t become like that!” Understandably, both parties have reasons for their behaviour.

Of course, if you have a spouse, your caretaker is legally signed up and selected, unless they are more feeble or crankier than you. If you are single, you have to seek outside volunteers such as willing children, loving  friends or good paid help. Any way you look at it, the fact is some people seem to do a better job of caring than others. We all know people who are the super-talented giving types. They give their time to others without showing a sign of resentment, exasperation, or fatigue the…

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jorge la coste pic

High Risk of Prostate Cancer in Parkinson’s Patients Taking STALEVO : By Dr. De Leon

Painting by Jorge Jm Lacoste

This is the age of knowing….when a urine flow is more than just a flow.”

Aside from the fact that Parkinson’s disease is proving to be a systemic disease affecting mind and body certain treatments as well as carrying certain Parkinson’s genes like the LRRK2 and PARKIN gene which seem to predispose those who carry these mutations to have an increase in certain types of cancers like breast, prostate and melanoma.

As I have discussed previously in previous blogs- http://www.defeatparkinsons.wordpress.com  – concerning dopamine effects “Dopamine: Friend or Foe?” and “Parkinson’s disease and melanoma”, Parkinson’s patients have a higher risk of melanoma 2-4 x the risk which according to some studies appears to be higher in men. This effect is both due to medications as well as genetic predisposition by those who have PD. Concomitantly, men with PD also have an increase risk for prostate cancer (2.4 % vs.  .5%) This increase risk extended to first, second and third degree relatives. This came from the Stride PD (STALEVO reduction in dyskenesia evaluation) study (14 countries participated including France, Australia, & the U.S. with over 300,000 patients) which suggested an increase risk of prostate cancer in men among those taking STALEVO (carbidopa/levodopa/comtan) vs. those taking Sinemet (carbidopa/levodopa) alone.

Since Parkinson’s disease is associated with pain, stiffness along with bladder dysfunction along with urgency and frequency the signs and symptoms of prostate cancer may be difficult to distinguish unless you are aware of it and actively thinking about it. So make sure you discuss with your primary care doctor, neurologist, and/ or urologist about the increase risk if you are taking this medication so they can follow appropriate protocol and do more careful and frequent screening than otherwise recommended particularly since guidelines for screening have changed.

Symptoms of prostate cancer include:

  • Need to urinate frequently especially at nighttime
  • Difficulty starting or stopping urine
  • Weak or interrupted flow of urine
  • Painful or burning with urination
  • Difficulty with a erection
  •  Painful ejaculation
  • Blood injuring or semen
  • Frequent pain or stiffness in low back or  upper thighs or hips

At present there are no guidelines from Academy of Neurology, that I am aware; thus, my personal recommendations are to follow the Academy of Urology recommendations.

According to the urology guidelines, PSA (prostate specific antigen) is no longer necessary recommended for men under age 40, nor for ages 40 to 54 unless at high risk ( e.g. family history or in this case intake of Stalevo which gives a fivefold  increase in risk)-the mortality rate due to this cancer in this age group is 1:1000. Thus, the greatest screening benefit using the PSA test is in the age group of 59 to 65 years old according to Academy of Urology. Furthermore, in men over 70, screening is no longer recommended either unless life expectancy assumed to be greater than 15 years ( i.e. male is in extremely good health). Even when screening is done, recommendation is to do test every 2 years.

Keeping in mind the increase risk of prostate cancer particularly if you have family history of this disease if you are taking Stalevo make sure to discuss with your physician to ensure appropriate follow up particularly if you are a young man.

Remember, Prostate cancer is a treatable disease if caught early!

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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

robin williams

Depression in Neurological Diseases like Parkinson’s: By Dr. De Leon

You treat a disease, you win, you lose. You treat a person, I guarantee you, you’ll win, no matter what the outcome.” Hunter – Patch Adams ( one of the best performances by R. Williams)

In the advent of Robin Williams untimely demise, a great deal of spark and conversation has ensued around the topics of mental illness including depression anxiety and bipolar diseases well as their connection to Neurodegenerative diseases like Parkinson’s.

Let me begin by saying first that although there is news of Robin Williams’s early diagnosis with PD -we do not have any details on his actual neurological condition or whether he was on treatment or not?

Furthermore, we must recall that it has been said that he battled with bipolar disease most of his adult life. Bipolar disease is more likely to result in a higher suicide risk and suicidal ideation and behavior compared to Parkinson’s. Nevertheless, we should not underestimate the severity of depression in any patient no matter the cause. And anyone suffering any type of mental illness like depression, anxiety, bipolar disease, etc. should seek immediate attention and get under the care of a specialist.

But we do need to be aware of some of the facts.

Depression is found to be more common in certain diseases like Parkinson’s, Alzheimer’s, multiple sclerosis, epilepsy, migraine, and stroke.

This depression is not caused by the fact that patients are given chronic progressive mostly incurable diseases; although, certainly the notion of having these illnesses has sometimes a negative impact on an individual and can accelerate or worsen symptoms. Furthermore, some of the medications used in the treatment of these illnesses themselves can cause depression, anxiety and other mood disorders. (e.g. amantadine, L-dopa, baclofen, bromocriptine, etc. while some meds that are used to treat pain in PD like those in the seizure class-depakote, lamotrigine, carbamaepine, etc.; and of course SSRi’s-Cymbalta, Zoloft, Lexapro, Effexor, etc. can be beneficial)  in the majority of neurodegenerative diseases, the depression precedes the neurological deterioration as a harbinger of  things to common.

In the case of PD, and Alzheimer’s these can be the very first clues of something amiss especially when there has never been a prior history of mental illness, depression or family history of such problems. According to the National Institute of Mental health roughly 18 million Americans suffer from depression yearly with a 12 month period. Depression is characterized by loss of appetite, although sometimes can be the opposite, loss of interest In things that used to bring pleasure and happiness, poor sleep or too much sleep, lack of energy, suicidal thoughts, poor concentration, feelings of guilt, and low self esteem these symptoms last longer than 2 weeks and the key is that the interfere with activities of daily living.

Women are twice as likely to suffer from depression than men which already puts PD women at higher morbidity this compounding effect maybe one of the reasons are now finding out that women with PD have more negative effects (meaning non-motor symptoms) like depression as opposed to men with PD who have more tremors (positive symptoms)…roughly about 50 % to 60 % of all PD patients suffer depression at one point during their illness and about 1/3 of patients present with depression as an early symptom before diagnosis. Yet despite this knowledge, the overall risk of suicide in PD is somewhat controversial. One study, in 2001 in the U.S. including more than 144,000 people with PD found the rate of suicide in general population to be 10 times greater than in the Parkinson’s population while another study done in 2007 in Denmark found the rate of suicide among PD patients to be equal to those in the general population. Another in 2009 said PD patients although appearing to be at higher risk for depression, they truly were not at higher risk for suicide compared to general population of Denmark. Yet, one thing this study highlighted was the  increase in suicidal ideation (thoughts); this was found to be much greater among those with PD than in the general population. This last piece of information is vital to help us remember and keep in mind of the potential for a slip for those suffering from PD. The possibility of suicide is ALWAYS there and given the fact that some of the medications can trigger or worsen or even cause mood disorders, we have to be extra vigilant as patients, caregivers, and health care professionals to discuss this subject at every visit especially when there are concerns before symptoms get out of hand. There are many treatments for depression including medication. I have discovered that in PD patients, the first step is often a matter of adjusting medications if discussed early. In severe cases (ECT) electroconvulsive therapy has been instituted. Treatment of depression and other mood disorders often requires a team approach including a counselor, therapist (behavioral), psychiatrist, psychologist, and neurologist. (Don’t forget about caregivers too- they also have high rate of depression correlating with extent of care)

It is also extremely important to realize that the highest risk and higher than expected rate of suicide noted to date among PD patients has been among those that have undergone DBS particularly in those that had depression or were single. This is why is crucial if you are considering this treatment that you do not partake if you have no social support or have history of mood disorders like depression. (unless absolute last resort and are under strict supervision by a team of specialist as I described above throughout entire life-this is my opinion) Make sure that you seek opinion of an expert that has done thousands of DBS to get best outcome.

So, even though, we have lost a great entertainer and we mourn his loss, his passing although uncertain as to the cause which led him to his final acts of desperation has provided us with a stepping stone to a new beginning of discussions to remember to treat the person and NOT just the disease- no matter if its Parkinson’s, Alzheimer’s, Multiple sclerosis, Bipolar disease or another chronic illness.

Let us remember to keep in mind  all those that suffer mental illnesses like depression …..

If you have questions regarding your Parkinson’s or think that you might have Parkinson’s and depression

… I invite you to call the National HelpLine of the Parkinson’s Disease Foundation at (800) 457 6676 or email us at info@pdf.org.

Otherwise contact

www.Samaritans.org  or www.suicide.org/hotline/texas-suicide-hotlines.html or http://www.suicidepreventionlifeline.org/
http://www.Speakyourmindtexas.org

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Dr. M. De Leon is a movement disorder specialist on sabbatical, PPAC member and research advocate for PDF (Parkinson’s Disease Foundation); Texas State Assistant Director for PAN (Parkinson’s Action Network). You can learn more about her work at http://www.facebook.com/defeatparkinsons101 you can also learn more about Parkinson’s disease at www.pdf.org or at www.wemove.org; http://www.aan.org, http://www.defeatparkinsons.blogspot.com All materials here forth are property of Defeatparkinsons. without express written consent, these materials only may be used for viewers personal & non-commercial uses which do not harm the reputation of Defeatparkinsons organization or Dr. M. De Leon provided you do not remove any copyrights. To request permission to reproduce release of any part or whole of content, please contact me at defeatparkinsons101@yahoo.com contributor http://www.assisted-living-directory.com Contributor http://www.lavozbrazoriacounty.com

drooling

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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Dr. M. De Leon is a movement disorder specialist on sabbatical, PPAC member and research advocate for PDF (Parkinson’s Disease Foundation); Texas State Assistant Director for PAN (Parkinson’s Action Network). You can learn more about her work at http://www.facebook.com/defeatparkinsons101 you can also learn more about Parkinson’s disease at www.pdf.org or at www.wemove.org; http://www.aan.org, http://www.defeatparkinsons.blogspot.com All materials here forth are property of Defeatparkinsons. without express written consent, these materials only may be used for viewers personal & non-commercial uses which do not harm the reputation of Defeatparkinsons organization or Dr. M. De Leon provided you do not remove any copyrights. To request permission to reproduce release of any part or whole of content, please contact me at defeatparkinsons101@yahoo.com contributor http://www.assisted-living-directory.com

sleep

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

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

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

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

Keep a record of your problem :

1) Is the problem staying asleep

2) Falling asleep

3) Pain at night

4) Restless legs

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

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

7) Trouble breathing and snoring

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

9) Vivid dreaming and or hallucinations

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

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

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

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

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

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

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Dr. M. De Leon is a movement disorder specialist on sabbatical, PPAC member and research advocate for PDF (Parkinson’s Disease Foundation); Texas State Assistant Director for PAN (Parkinson’s Action Network). You can learn more about her work at http://www.facebook.com/defeatparkinsons101 you can also learn more about Parkinson’s disease at www.pdf.org or at www.wemove.org; http://www.aan.org, http://www.defeatparkinsons.blogspot.com All materials here forth are property of Defeatparkinsons. without express written consent, these materials only may be used for viewers personal & non-commercial uses which do not harm the reputation of Defeatparkinsons organization or Dr. M. De Leon provided you do not remove any copyrights. To request permission to reproduce release of any part or whole of content, please contact me at defeatparkinsons101@yahoo.com contributor http://www.assisted-living-directory.com