Parkinson's awereness, Parkinson's Diagnosis, parkinson's disease, Parkinson's Health, Parkinson's treatment

New Light On Parkinson’s! By Dr. De Leon

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“We are ALL a little Broken….

last time I checked Broken crayons still color the same.” Trent Shelton

I believe that we are all unique like the colors of my favorite coloring box of 152 Crayola Crayons; and even though Parkinson’s may strike each and everyone one of us differently we all share the same outer exterior like the rainbow of colors in the same crayon box! But let’s not forget that within that box are endless possibilities ….

all it requires is a bit of imagination.

By shedding light on Parkinson’s features motor and non-motor, I am hopping to bring a change in the way we are all perceived and treated.  Not as Broken ….

Rather as people who see, feel, think, smell, perceive, do, believe and experience things differently. Yet, no less useful, creative, bright, and uniquely gifted and colorful individuals striving to make our own mark in the world as any other.

As Gandhi would so eloquently quip,”Let us be the change we like to see in the world!”

Don’t be afraid to bend a little or brake a little with PD, you might just surprise yourself as I have …

So go ahead start living your life to the fullest and don’t be afraid to color outside the lines…

***********

For more information go to http://www.pdf.org

We will have follow up blog and questions to above feature article “What’s wrong with Me?” Family Circle Magazine (Sept. 2015)

 

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THE CHANGING FACE OF PARKINSON’S DISEASE : By Dr. De Leon

“Your spark can become a flame and change everything!”- E.D. Nixon

parkinson facesAs we commemorate one more year of Dr. Parkinson’s Birthday, we are reminded of the great accomplishments in the area of PD  and neuroscience since he was a prominent physician in London. Yet,  human kind has been battling a form of  ‘Parkinson’s’, if not the same illness, for centuries before Dr. Charcot put a name to it in honor of James, dating back to the times of  ancient India. From history we know that this disease does not discriminate against race, ethnicity, or social economic status. Currently, it is believed that there are approximately 10 million people world-wide suffering from this disease.

We have learned, however, that although mostly sporadic in nature there are some genetic predispositions to developing Parkinson’s disease which vary from one family to another and from one ethnic group to another.  Despite the genetic predisposition it seems that environment and outer influences such as exposure to toxins can hasten the development of this illness in an otherwise normal individual.

Here are the most common Risk factors:

  • Advancing age
  • Male gender
  • Decrease estrogen /early  hysterectomy with ovary removal
  • Environmental toxins
  • Low Folate levels
  • Agricultural workers
  • Well water consumption
  • History of essential tremors increases -depending on who you quote there is a 10-30%  increase
  • History of melanoma
  • History of  chronic constipation
  • History of mood disorders
  • History of sleep disorders such as RLS/REM behavior
  • Repeated head trauma or severe head injury
  • Family history of PD
  • Ethnicity- Hispanics twice as likely to develop
  • Occupation- those in medical field are also at greater risk presumably due to exposure of toxins and stress since the basal ganglia is overly sensitive to stress-may trigger faster aging process in the basal ganglia

Change is an inevitable part of life, without change there cannot be growth. The truth is that we are now in the middle of the PD pendulum swinging back. Since the name of Parkinson’s was ascribed to a disease that affects our motor system, causing slowness of movement, along with gait difficulty, rigidity of muscles and rest tremors that dissipate in sleep and when engaged in purposeful movement, was thought that PD was a disease of  middle to late age white men. No longer is it just a “movement” disease but an entire body system illness affecting our thinking, our personalities, and almost every system from head to toe excluding the lungs. Now it also appears that PD is encompassing a much younger population many of whom appear to be women. So, no longer are the young and ‘fairer’ sex protected but rather caught up in the midst of the storm.

Therefore, it is up to all of us to do what ever we can big or small in fight against PD. We can volunteer for research studies, write our congressmen http://www.parkinsonsaction.org about needing more doctors and funding to provide for day to day issues encountered by those of us who live with PD in our lives either as patients or caregivers.  we can offer our services to help those with PD, we can donate our monies to PD foundations such as http://www.pdf.org , you can purchase a ‘Parky Raccoon’ to help send someone to WPC next year or simply to raise awareness for a still obscure disease in many circles.

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

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

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

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

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

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

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

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

Therefore it is imperative that you prioritize your problems:

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

All of these will require different focus from your doctor.

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

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

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

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

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

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

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

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

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

*******

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

battling stigma in PD, bullying in PD, chronic illness, parkinson's disease, parkinsons health and beauty tips, stigma and PD

Changing the Tides of PD Stigma from Whispers and Staring to Support and Caring! By Dr. De Leon

Changing the Tides of PD Stigma from Whispers and Staring to Support and Caring! By Dr. De Leon.

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Tips for Getting Ready for Surgical Procedures When You have PD: By Dr. De Leon

“I  had plastic surgery last week. I cut up all my credit cards.” Henry Youngman

As I get ready to undergo yet another diagnostic procedure I am reminded about the possible perils of navigating conscious sedation and anesthesia with PD.

One of the hardest things is being asked to stop your medication the night before a procedure. Depending on your stage of disease this can range from a mildly uncomfortable feeling that can be endured with little discomfort to a downright painful and excruciatingly difficult experience to tolerate that may seem never ending because of the withdrawal symptoms. Then there is the stress of having to undergo a medical procedure to really kick up the use of dopamine in your brain making your Parkinson’s symptoms seem that much worst.

Until I had PD myself I never truly understood how hard it was for patients to be asked to stop their medications. I knew it was not a good idea to make someone stiffer, shakier, have more trouble swallowing and breathing when undergoing general anesthesia.  This is the time we want patients to be the strongest to not only make extubation easier but also decrease aspiration pneumonia around surgery and allow for faster recovery. So why would we want to stop all PD medications? Besides, we would not want increase in pain meds because they are off. When I am off my PD meds the biggest problem I experience is the severity of pain which is so severe it causes me to almost black out. Not a good feeling! Unfortunately, not all PD medications are compatible with anesthesia like MAO inhibitors so meds like Azilect do have to be stopped prior to surgery. And because aspiration and vomiting due to anesthesia need be minimized patients are asked to not eat, drink, or take medications.

But, sometimes surgeries can be delayed due to unforeseen problems as it happened to me with the last surgery. I was scheduled for surgery at 8 and did not actually go to OR until 1pm. So not only are you starving but the time without medication can be prolonged unexpectedly causing greater discomfort.

Things to do to avoid being caught in scenarios where you are stressed more than you have to.

1) If you take Sinemet ask for your physician to write an order for you to take Parcopa in its place throughout surgical procedure to avoid Gi tract. Since this is an orally disintegrating formulation fast acting? If surgery is delayed it can take another dose at your scheduled time. Of course if you are on IV pump this should be able to be continued unless they are working in area where pump is placed.

2) you can still continue with the dopamine patch agonist NEUPRO during surgery.

3) ask for scopolamine patch prior to survey to avoid nausea and upset stomach caused by anesthesia and being off your full regimen.

4) If being off or not eating for long time causes migraines again you can still receive treatment with orally disintegrating Triptans (e.g. Maxalt).

5) Try to be the first case of the morning.

6) If an elective procedure do when you are at your strongest and make sure your neurologist/MDS fine tunes your medications to ensure maximum outcome.  Do not put yourself at an unnecessary risk for an elective procedure (non –life threatening or emergent). As I had to postpone my father in law’s surgery because his breathing was too weak and did not want risk of having trouble coming off the vent after surgery.

These tips should help you ease your discomfort as you prepare for surgical procedures.

____________________________________________________________________________

Dr. M. De Leon is a movement disorder specialist on sabbatical, PPAC member and research advocate for PDF (Parkinson’s Disease Foundation); Texas State Assistant Director for PAN (Parkinson’s Action Network). You can learn more about her work at http://www.facebook.com/defeatparkinsons101 you can also learn more about Parkinson’s disease at www.pdf.org or at www.wemove.org; http://www.aan.org, http://www.defeatparkinsons.blogspot.com All materials here forth are property of Defeatparkinsons. without express written consent, these materials only may be used for viewers personal & non-commercial uses which do not harm the reputation of Defeatparkinsons organization or Dr. M. De Leon provided you do not remove any copyrights. To request permission to reproduce release of any part or whole of content, please contact me at deleonenterprises3@@yahoo.com contributor http://www.assisted-living-directory.com Contributor http://www.lavozbrazoriacounty.com

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

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.

_________________________________________________________

Dr. M. De Leon is a movement disorder specialist on sabbatical, PPAC member and research advocate for PDF (Parkinson’s Disease Foundation); Texas State Assistant Director for PAN (Parkinson’s Action Network). You can learn more about her work at http://www.facebook.com/defeatparkinsons101 you can also learn more about Parkinson’s disease at www.pdf.org or at www.wemove.org; http://www.aan.org, http://www.defeatparkinsons.blogspot.com All materials here forth are property of Defeatparkinsons. without express written consent, these materials only may be used for viewers personal & non-commercial uses which do not harm the reputation of Defeatparkinsons organization or Dr. M. De Leon provided you do not remove any copyrights. To request permission to reproduce release of any part or whole of content, please contact me at deleonenterprises3@@yahoo.com contributor http://www.assisted-living-directory.com Contributor http://www.lavozbrazoriacounty.com

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

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

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