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, Uncategorized

Treatment for over active bladder in Parkinson’s (revisited) : by Dr. De Leon

 

 

Whenever somebody tells me, you go girl! I generally have to!” -unknown

As I mentioned before in a previous blog Parkinson’s patients as do patients that have various parkinsonian syndromes like MSA ( multi system atrophy) can have varying degrees of bladder issues ranging from increase urgency,frequency to outright incontinence!  Having bladder function problems can lead to severe psychosocial problems like depression and anxiety particularly among patients over 65 years of age, they can also lead to significant medical and economic burden.  This is by no means an easy task to solve since independent of neurological disease, over active bladder ( OAB ) affects up to 27% of men and 43 % of women of the global population. Now add a neurological condition atop of this and the problem becomes even more challenging for physicians.

Fist,we should review a few medications which make this problem worst, if possible should try to avoid:

  • Diuretics
  • antipsychotics
  • cold medicines
  • narcotics
  • sedatives
  • hypnotics
  • antidepressants
  • antihypertensives
  • analgesics
  • Over the counter sleep aids
  • herbal remedies

Proper management of patients with urinary problems like any other problem begins with a thorough and comprehensive evaluation, including a void diary, urine test to look for infections, diabetes and the such. Of note those of us who have chronic illnesses by definition are on multiple medications which tend to complicate evaluation and treatment but worsen by age. Physical exam is also extremely important since it can tell physicians for instance if there is enlarged prostate in men or enlarged uterus in women causing pressure on bladder or blocking sphincter. Your doctor may choose to do urodynamic studies which includes measuring pressures of pelvic muscles and urethra and voiding flow-this sometimes requires insertion of needles into bladder and abdomen to evaluate…can be uncomfortable and moderately painful at times especially if you are in mid to late stages of disease. Other tests may include cystoscopy which involves looking into bladder with a camera inserted through a long narrow tube via the urethra …similar to a colonoscopy except different organ! Other times, they may simply choose to do volumetrics…fill your bladder with fluids via an IV ( intravenous Cath) until they can reproduce symptoms.

Once all these studies are done, which usually are done either by a urologists or a gynecologists, and a cause of the urinary malfunction is ascertained then treatment can be instituted.

Aside from evaluating all medications which MUST always be done at the onset of any visit to make sure current medications are not the ones causing or aggravating the problem, an adjustment of dopamine medications is often necessary and should be done early on as well. This is because Parkinson’s and other parkinsonian syndromes commonly have bladder dysfunction as part of the disease spectrum. If however you are still having problems after going through above steps then the recommendations are as follow:

1) Behavioral modification:

This entails a strict commitment on the part of the patient in order to improve voiding…if done properly..it can be very effective. Insurance will pay for this however, must go to a trained professional experience in this type of therapy to have greater success rate.

I like this because this is treatment modality epitomizes “individualized medical care

This includes voiding diaries, timed voiding, pelvic floor muscle strengthening exercises, and urge suppression techniques (e.g distraction, self-assertions), biofeedback, electrical stimulation into sacral nerves or pelvic muscles, fluid management, caffeine, reduction, dietary changes ( I.e avoiding bladder irritants like caffeine, chocolate, spicy foods etc.), weight loss and other life style changes.

The beauty of this is that it can be combined with other treatment modalities.

2) Pharmacotherapy:

this includes a number of oral and transdermal( across skin) medications. These can be very effective and used after behavioral therapy failed or in combination. However, their efficacy is limited due to side effects although usually non life threatening. All medications come in extended release.

The medications in this class are primarily antimuscarinic- they include oxybutin (Ditropan, Oxytrol), tolterodine (Detrol), solifenacin (Vesicare), darifenacin (Enablex), **trospium (Sanctura- does not cross blood brain barrier), fesoterodine (Toviaz). **This latter may be best suited for treatment of elderly patients due to less side effects. Typical side effects of this class include dry mouth, constipation,dyspepsia, urinary retention, urine infections, impaired mental status, and dry and itchy eyes. Since a lot of these symptoms can already occur with PD or as side effect of other PD medications have to be extra vigilant when starting these meds and discuss any sudden changes with your physician ASAP!

The new comer is mirabegron ( Myrbetriq) for those that can’t tolerate antimuscarinic. Although may act as one it is a beta 3adrenoreceptor. I find this medicine to work very well especially for those patients that have mixed type urinary problems where they have over activity and increase sphincter control.

3) Botulinum toxin A:

Once patient had failed above treatments, your physician may suggest this treatment modality. However, not everyone is qualified to do this procedure…it requires operating room time and frequent visits…effects can last up to 9 months (on average 6 months). You Must always have an experienced physician doing this procedure. It is expensive and not all insurances cover costs.

4) Sacral neuromodulation:

This has become the leading treatment of choice for those that do not respond to normal treatments. This treatment was approved since 1997 by FDA . Reports have shown great efficacy and safety with gradual implant of electrodes into third sacral nerve foramen (aperture) initially during a test phase of 1-2 weeks followed then by implantation of pulse generator. The electrical impulses delivered to the root of the third sacral nerve has been shown to reduce urgency, frequency, and incontinence. Most common side effects include pain at stimulator site, pain at lead site, lead migration, electric shock, and revisions. However, as these procedures are done more frequently, they are becoming less invasive along with smaller devices which will lead to fewer adverse effects. Just like having DBS, you will need periodic adjustments and will not be able to do MRI’s and will require replacement of pulse generator.

5) Surgical Intervention:

This still remains as the last possible alternative for severe cases that are unresponsive to any of the above treatment modalities.

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References-Kim, Ja-Hong. Management of Overactive Bladder and Urge incontinence. Practical Neurology. Vol. 13, No.7, September 2014. 27-32.

 

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

cancer risk in parkinsons, chronic illness, parkinson's disease

The Golden Team Necessary for the Best Parkinson’s Care: By Dr. De Leon

The other day, I read something someone wrote about which ideal team members should engage when considering long term care of PD. I was a bit disappointed to find that whoever wrote that piece was missing a large part of what goes on with Parkinson’s patients behind the scenes and what their needs really are. Especially when we realize that this chronic illness not only affects dopamine but other neurotransmitters like serotonin in the brain; but more importantly their function or lack off has great implications for our entire body from our guts to our skin and everything in between.

Therefore, when choosing your fantasy team or ideal “golden” players to be in charge of your PD care is best to keep in mind that just as you would not take an expensive car like a Ferrari to just any local mechanic if there was a problem with it you should not trust the care of your complex Parkinson’s disease just to anyone!

An all-star team that you should pick to stand on your corner to help fight for your interests. Ideally, this should include the following members:

1.  Neurologist (at minimum if MDS are not readily available in your area/ preferably an MDS- no need to have both if MDS readily accessible). MDS/Neurologist needs to act like the quarter- back. He or she understand your disease intricately and know you the best therefore, should be the ones coordinating all the care when it comes to PD issues to ensure the BEST possible outcome with the most prolonged quality of life!!!

2.   GI (gastroenterologists) – because of decrease motility, increase constipation, increase reflux,    trouble swallowing and nausea both due to medications and subsequently due to poor gastric motility; therefore, it is imperative you have a good GI specialist you follow on a routine basis. They can provide alternative treatments that neurologists may not be aware of like new meds for constipation etc. (Linzess is the latest and it won’t interfere with PD meds or aggravate PD symptoms).

3.   Urologist- because of increased bladder problems with PD, erectile dysfunction in men due to medications and sometimes due to disease if have other Parkinsonian syndromes like MSA, also because there is a documented increase in prostate cancer in those men taking Stalevo. Therefore, they serve to screen for pathology as well as offer various treatments and surgical procedures like Botox injections into the bladder that the neurologists or MDS may not be able to do themselves.

4.   Gynecologist – for women with PD because medications can cause menstrual irregularities, sexual dysfunction can occur both as part of disease and due to medicines, bladder issues, and an increase in breast cancer in certain subtypes of Parkinson’s population like LLRK2. They can treat these diseases and screen as well as offer procedures to help. Newest medication for treatment of bladder dysfunction which I have found to work well in PD patients with over active bladder issues is Myrbetriq.

5.   Dermatologist-due to an increase incidence of melanoma in PD patients especially if you have a history of this disease already present in your family. They can screen and provide treatment and early cure should melanomas develop and safe your life!

All these specialists should be able to work well as part of a group of multiple specialists where the neurologist or MDS is in charge of the ultimate game plan (this is crucial for a good working relationship with everyone involved). They should also have good working knowledge of the entire body system as it relates to Parkinson’s disease not just their own specific area. (This is equally important if things are going to progress in the right direction to maintain and prevent issues down the road). It is important to bring these specialists on board as early on as possible and maintaining them on as a regular part of the team for the duration of the illness not just on as needed basis. ( you may not need to see them as often as the MDS/neurologists but at least once a year just to maintain contact and make sure that all preventive measures are being done and keeping up with new treatments; more often if you have risk factors in some of the cancer areas)

Finally, you MUST engage the services of ancillary staff: PT, ST,OT, perhaps even a dietician and social worker – the service of these professional will become more invaluable as time progresses and disease advances. They will be the backbone to guaranteeing you have the right tools for a successful journey with PD.  At very least they will offer valuable information and tools to help improve your quality of life and those around you for every stage of your illness. Find those that have training and expertise in dealing with Parkinson’s disease and preferably those that are certified in Lee Silverstein voice training (LSVT) and the equivalent of the voice program LOUD, the BIG program which activates the gross motor system!

I guarantee a brighter Parkinson’s journey with this “golden” all-star team guiding your disease forward.

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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

 

caregivers and chronic illness, chronic illness, depression and suicide, fall prevention in parkinsons, falls in parkinsons, parkinson's disease, parkinsons health and beauty tips

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Otherwise contact

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Keep a record of your problem :

1) Is the problem staying asleep

2) Falling asleep

3) Pain at night

4) Restless legs

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

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

7) Trouble breathing and snoring

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

9) Vivid dreaming and or hallucinations

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

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

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

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

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

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

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