"I AM"- are the two most powerful words in the dictionary because the ending determines your destiny….so join me in my fight against PD to make sure that everyone who suffers from this chronic progressive degenerative disease can develop the courage to shout to the wind- I AM Fierce and Courageous ….
“One person caring about another represents life’s greatest value.” Jim Rohn
It seems as if the whole last decade has been an unending parade of sick people with chronic illness revolving though my doors. So, I have become somewhat of a caregiver guru… I think that these events along with my own illness have been entrusted upon me to develop one single trait ….PATIENCE.
I was never a very patient person by nature as are most type A- personalities who like me thrive on being in charge, in control and being able to multi-task.
Being a caregiver has challenged all these notions and made me learn to prioritize things in life. Taking care of someone is difficult no matter the level of care you provide. But, as you already know the task becomes increasingly more difficult and challenging the older, more disabled, and more chronically ill the person you are providing for is; even simple things like brushing their teeth can be a shore if they have dyskenesias,or dystonias involving the head and neck. Been there done that! Electric tooth brushes work best at any rate for most Parkinson patients. And by the way, if they have dystonia helps to find their ‘geste antagoniste’ (a sensory trick applied by touch to another part of body to temporarily distract or interrupt the dystonia).
Dressing, feeding or helping someone ambulate is not so bad if you only have to perform once or twice a week. But, it is a different story when they are completely dependent on the caregiver to have their basic necessities met. Dressing someone who is completely immobile, rigid and unable to assist can make a weight of 100lbs feel like 300. This is when you realize you simply can’t have control of the situation all the time, especially when dealing with chronic illnesses that may be exacerbated by outside factors. You must learn to roll with the punches and take the good with the bad …patients WILL have good & bad days. Thus, you will have stressful days and not so stressful days! For instance, I have discovered that Parkinson patients tend to have increase in pain, & stiffness during cold weather. Take necessary measurements to avoid extreme temperatures, use sensory tricks, or discuss Botox injections or baclofen pumps if dressing is difficult because of rigidity despite adequate dopa levels or DBS with your health providers to help easy your stress and help care for your love one in a less disruptive way to all. Implementing some of these techniques will also keep you from pulling your back. Also, talk to your physician about a referral to the Physical Therapist and Occupational Therapist, they can help evaluate for the patients needs at home and lend/or rent you equipment to use at home to make your life easier.
You also, must learn like I have that in order to preserve your sanity and the peace of those around you must relinquish control to someone else from time to time…simply can’t be the savior all the time! Taking care of someone especially 24/7 – Is a team approach! Surround yourself with a group of good friends that are trustworthy and can lend a hand in the care of your loved one.
I would not have been able to survive until this point without my best friends support …when I had to take my dad to doctor when he was undergoing chemo and radiation or my grandmother who suffered from PD…..my friends would step up and pick up my daughter from school…care for her…drive her to where I was if needed. During, daytime when I still had to work; I engaged services of a close friend to sit with grandma until I got home.
Besides patience, the number one ingredient to persevering as a caregiver is LOVE! When the going gets tough the only way you will make yourself go even when you are spent, heartbroken, at your wits end is love for your spouse, partner, family member, or child for whom you provide care.
Love gives you courage, strength to go that extra mile, smile when you feel like weeping and ability to rise above your situation. In the end is the commitment that matters even if there is nothing to be done… Love is what gives us all staying power…think about it… As Dr. Arthur Kleinman quipped “I am with you in this [journey] ….right until the very end.”
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Parkinson’s can affect young and old in all walks of life, although it is typically more common in those over 55 (known as Idiopathic Parkinson’s Disease). But it can strike young people even in their 20’s (younger age prior to 40 is known as Young Onset Parkinson’s). In the United States there are nearly 1.5 million people living with this condition and countless others who dedicate their lives to their care. Many of these individuals reside right in your community where you live. The financial burden not to mention the social and emotional devastation which is ever increasing is leaving many of these patients and their families isolated and destitute. Therefore, this April as we celebrate Parkinson’s Awareness Month nationwide, I like to invite each and every one of you to join me in honoring someone with Parkinson’s disease by doing whatever it takes to find a cure and ease their burden.
One way of honoring these individuals is by staying informed so that together we can raise awareness.
The more you know, the better equipped you are at helping your friends and neighbors who have to struggle with a chronic progressive neurodegenerative disease to find ways of coping. Parkinson’s disease is characterized by loss of a black substance deep in the brain known as the basal ganglia. This chemical called dopamine is responsible for our fine motor movements, coordination, muscle control as well as responsible for playing a key role in the reward-pleasure seeking behaviors in our lives.
4 main motor Symptoms Of Parkinson’s are :
Slowness (of movements)
Other non-motor symptoms include:
Loss of smell
Sleep disorders/restless leg/ REM behavior
Memory loss/ cognitive problems
Decrease estrogen /early hysterectomy with ovary removal
Low Folate levels
Agricultural workers, well water consumption
Repeated head trauma or severe head injury
( others less known risk factors)
Family or personal history of essential tremors
Family history of Parkinson’s
History of restless leg or REM behavior
History of anxiety/mood disorders
History of chronic constipation
If you have any of these symptoms please make sure you seek advice of a healthcare provider immediately. Although, there are no blood test to confirm diagnosis under the care of a specialist ( neurologist / or movement disorder specialist ) the diagnosis can be nearly 95 % accurate. Similarly, in the hands of a specialist the quality of life of Parkinson’s patients has been shown to be improved in several studies despite the fact there is no cure.
By seeking treatment from a specialist early on, the many medications (Sinemet is still the goal standard) and surgeries including deep brain stimulation ( DBS) can be used with greater efficacy.
So, what can you do to help and support those that have Parkinson’s in your community?
You can find a Parkinson’s study nearby and volunteer – Most studies in this country and I imagine in other countries as well never fill; one of the reasons why it takes so long to get new drug treatments. Or you may volunteer to drive a friend to a study.
Share the Parkinson’s information you learned with others.
Find a friend with Parkinson’s and exercise, swim, cycle, or take dance or yoga classes together- these have shown to improve the quality of life in Parkinson’s patients and increase mobility.
Join a Parkinson’s support group or start a support group.
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 firstname.lastname@example.org
As I mentioned previously there are 4 common causes that lead to Parkinson’s bladder problems. The most common being improper processing of dopamine message from brain to bladder causing a mixed up response with increase frequency and urgency. ( when is contracting or too active is called –detrusor hyperactivity).
Second, urgency and frequency can be caused by blockage or pressure on urethra from chronic constipation and thirdly increase sphincter pressure not allowing urine to flow and fourth bladder does not contract (detrusor hypoactivity) causing urine to stay trapped and giving a constant sense of needing to void.
However, before you decide that the urinary problems are caused by Parkinson’s Disease and not some other medical problem like diabetes make sure that all other causes are excluded. Several medications can cause bladder problems. The tricyclics (e.g amytriptaline, nortryptyline) can cause urine retention- these are commonly used for depression, sleep problems, & some other derivatives may be used at times for tremors. Diuretics commonly prescribed for blood pressure of course can increase your urgency and frequency.
In men, an enlarged prostate can cause problems with starting urine, may have decrease flow, hesitation, dribbling, urgency and frequency.
In women, having an enlarged uterus or the fact that they had multiple children can cause them to have weak pelvic muscles and cause stress incontinence (loss of urine with coughing or laughing) and can lead at times to increase urgency. Women are also more prone to urine infections especially after menopause which can lead to symptoms of urgency, frequency, incontinence.
If all medical causes are excluded or even before, a Parkinson’s patient may need to be referred to specialist like urologist to evaluate prostate or stress incontinence. If patient is a woman, she may need to go to a gynecologist to make sure her uterus is not enlarged and or pelvis not weak. The specialist will do a urine analysis to make sure no infection, might do ultrasound to look at uterus and bladder, prostate exam and blood work and also Urodynamic Tests.
‘Urodynamic tests evaluate how your urine is stored within the bladder, as well as how urine flows out of the bladder through the urethra. These types of tests can measure the speed and volume of urination (uroflowmetry), the amount of urine remaining in your bladder after urination (postvoid residual) or the pressure within the bladder (cystometry).”
If problem is not clear the neurologist or Movement disorder specialist may recommend an EMG test along with the Urodynamics to evaluate the status of the muscles of the bladder and pelvic floor. If either the gynecologist, or urologist in your area are unable to perform these tests an “EMG” specialist might be consulted…A urodynamic test is NOT a FUN TEST especially when you add needles into your bladder and pelvic muscles! They have to insert many small needles in your bladder then watch you go Void into a large container in front of several people while they measure everything! It is Not the most pleasant test in the world- not really painful- it is more embarrassing than anything else…but you will get through it -not much different than giving birth!
Often times, your neurologist will try some treatments before referring to a specialist if it seems like common ordinary urinary problem of mixed signaling. But, if symptoms are not resolving or getting worst, getting frequent infections or seriously interfering with your personal life in any shape or form (sleep, sex or hygiene) you MUST be seen by specialist ASAP. Usually for those that have hard to control bladder problems or mixed typed which CAN happen in a single Parkinson patient more frequent than you might think (I recommend keeping diary). For those that have multiple causes or not responding to treatment, the best treatment is a team approach.
Tips: to help with Nocturia (bladder urgency at night)
Avoid drinking fluids after 6 pm – especially if you have worsening symptoms at night
Have medications adjusted –especially Sinemet if wearing off in middle of night and causing you to have urgency or not being able to make to bathroom on time or disrobe fast enough. Dismiss meds that are causing bladder dysfunction. Similarly if getting to touilet is a problem get a bed side commode.
If bladder medication not lasting consider using patch that maybe longer lasting –Oxytrol 24hour patch for instance.
Get a bed wetting alarm. Prices range from $49 to $179.
If being awake causes you to go to bathroom more –talk to doctor about prescribing a sleep aid.
Foods to Avoid:
Other treatments :
Biofeedback -which includes toilet retraining
Botox to bladder
Neuromodulation (2 types)
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 email@example.com
“Gotta go! Gotta Go!” I am sure all of you have seen or heard of this commercial. Unfortunately, for many of us living with PD this is more than a jingle….. IT IS A REALITY!
Every time you step into new place you have to scope it out to know where the nearest restroom is or have become afraid of traveling too far from home because of potential embarrassment.
This reminded me of the video submitted last year for the World Parkinson’s Conference at Montreal by that brave PD woman whose bladder symptoms were triggered by the mere mentioned of the sound of water running or the thought of water! And had to live by a neighbor with a running FOUNTAIN! TORTURE!!! I ABSOLUTELY SYMPATHIZE!
If any of you have ever had a bladder infection …you KNOW HOW MISERABLE it is to not be able to step 3 steps away from the restroom before having an urge …NOW imagine having these feelings ALL the time?!
Thus, today I thought I would write about a very frequent and common symptom of Parkinson which causes a lot of discomfort and disability but is often overlooked or underdiagnosed in my experience.
We know that urinary or bladder issues can be a problem for patients with Parkinson’s and in fact is very common in all stages. However, it tends to be worst in late stages of Parkinson’s . If it is more severe at the onset than most likely we are looking at a parkinsonism or Parkinson Plus syndrome ( like MSA). Bladder dysfunction occurs due to loss of dopamine. The message from the brain to the bladder can get mixed up and confuse bladder of when it should empty or retain urine. This is known as a non-motor symptom which although can cause a great deal of problems for the majority of individuals there IS a solution! However, in order to find an appropriate solution you and your doctor or team of physicians ( which is often required in most cases to have successful treatment of symptoms) must FIRST understand the cause or causes of the bladder problems!
Here are the 4 more common reasons for PD patients to experience bladder dysfunction.
Although, the majority of patients have usually one type – “we don’t all follow the medical texts”- as I like to say, Therefore, some of us may have a combination and worse may have a combination that fluctuates making it more challenging BUT NOT IMPOSSIBLE to TREAT!
Important thing to remember is that although bladder issues are part of non motor symptoms and can be present through out the history of PD they are not inevitable!
Remember, that if bladder problems worsens acutely or not improving to discuss with physician because other problems can arise like infections …having PD does not exclude common things.
In men, things like enlarged prostate or in women enlarged uterine can lead to going, going, going feeling. If you have a lot of bladder issues early on in disease may not be PD as I said earlier but Parkinsonism.
Parkinson’s disease causes both urinary incontinence and difficulty emptying both of which can be quite troublesome and lead to secondary infections as well.
Sometimes the urinary incontinence ( unable to control bladder) is not caused by dopamine loss effect on the bladder but rather its effect on rest of body. For instance, you might be in an “off” state or “under” medicated and having trouble moving fast enough to get to bathroom when urge hits…
so your bladder in this case works fine but your body does not respond fast enough!
Another issue outside of the bladder and independent of dopamine effect on the bladder is the Practicalities of using the toilet. The ability to USE the toilet can also stand in the way and cause incontinence..like not being able to sit down or pull your undergarments down, or unbutton clothing.
Having increase night time urgency ( nocturia) or wetting at night ( nocturnal enuresis) which can lead to trouble sleeping and increase fatigue and of course put a damper on sexual intimacy and personal hygiene. Also, if you have nocturia aside from putting a rift in intimacy and making hygiene a challenge cohabitating in the same room much less same bed can be a tremendous problem when you have to get up every 5 to 10 minutes to void neither you nor your bed partner get any rest! Lack of sleep as you know does nothing to help pain of PD and stiffness as well as tremors leading you to a catch 22 if already having trouble getting to bathroom this will only increase and worsen if you become slower, stiffer and shakier!
Therefore, it is imperative that you seek medical attention and treatment – which might require a visit to the urologist, gynecologist (if female ) and even at times a behavioral therapist along with regular visits to your neurologist. Remember, effective treatment often requires a multidisciplinary ( team ) approach. Most cases can be successfully treated. Please don’t suffer In Silence. Next blog I will discuss treatments and studies but first want to mention two other causes of frequent urination in PD.
So, as I said previously some PD patients have urgency & frequency and can have accidents because not fast enough to get to bathroom while a second group can experience the opposite difficulty voiding (trouble going) either because bladder fails to contract or sphincter does not relax and can’t let the flow start…this too can lead to infections much higher risk than above. These individuals also have urgency and frequency but from poor emptying, the bladder feels like wants to empty
Anticholinergics also cause difficulty with emptying.
Another cause of constant urgency and frequency feeling with trouble voiding is severe constipation which is common in PD. In this case, feces can accumulate in the rectum causing distention subsequently pressing on the urethra giving sensation of needing to void. The constipation can be so severe that the rectum can distend to the point it might even obstruct the opening of the urethra making it nearly impossible to void.
So, in conclusion if you are often feeling like ” where is the bathroom? where is the bathroom? there is NO WAY to hold it in! blame that DARN brain disease…”then I think is time to have a long talk with your neurologist. Fortunately, there is help and most of the non-motor symptoms have solutions….however, need to remember to keep diary of what’s causing problem. is it due to dopamine malfunction either too much pressure not allowing sphincter to open ( the urologist, gynecologist, EMG doctor will be able to tell by doing test on your bladder), or your bladder is not responding to dopamine getting mixed signals making it go more often and usually a trial of meds like Detrol will help..
or is it outside of the bladder like you are “off” or “under” medicated so cant get to bathroom fast or unbutton clothes to use potty?!
or finally is it a medical problem like chronic infections or enlarged prostate or diabetes causing frequency.
Remember the more you know…the better you will feel!
( note: urine output increases at night as we age!)
How many times do you think a normal person empties their bladder in a day?
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 firstname.lastname@example.org
“Be true to your teeth, or they will be false for you.” Soupy sales
It is true that Parkinson’s in rare instances has been diagnosed by very astute
dentists who saw tale tell signs and referred them to a specialist who confirmed
diagnosis but this is the exception rather than the rule. So, it is up to all of
us who suffer with or care for someone with Parkinson’s (PD) to educate other health
professionals about our symptoms including our dentists.
This education begins with a thorough medical review of medications, symptoms. Your dentist
should as a routine monitor your blood pressure and other vitals and always discuss
any medical issues and changes to your medical regimen which might impact your dental care
in any shape or form.
For you see, as many of you have already figured out, having Parkinson’s can present a very complex
and unique set of challenges to you and your dentist when it comes to providing routine and not so routine care.
Plus, the fact that you have PD alone can cause problems with your mouth, gums, and
teeth due to multiple factors.
Therefore, it is important that you are aware of what the issues are and how to
be proactive in preventing problems. By being knowledgeable, you can be
instrumental in helping your physician(s) and dentist to work together to
provide the best possible care for you in order to continue to maintain the best
quality of life for as long as possible which includes maintenance of your teeth for
a healthy dentition but also a pain free mouth.
It is estimated that about 25% of patients with PD experience a syndrome known as
“Burning Mouth Syndrome.” This problem can result due to multiple factors. The main cause is ultimately
the tissues in the mouth becoming dry. These occur as a result from things like vitamin D deficiencies (or insufficiencies)-which are extremely common in PD; multiple medication intake (especially PD meds like Artane -[trihexyphenidyl] or [amantadine]- Symmetrel which
cause dry mouth or decrease saliva input by blocking choline receptors). Other conditions which lead to mouth
dryness is known as Xerostomia (dry mouth from insufficient saliva production). Poor oral hygiene, poor nutrition and even infections can also be some of the reasons patients with PD have mouth and oral
mucosa dryness. The dryness can subsequently cause pain.
However, before a dentist gives you a diagnosis of ” Burning Mouth Syndrome” make sure you check with your
Neurologist to exclude other causes of pain and burning in face and mouth which are
unrelated to Parkinson’s like trigeminal neuralgia, shingles, atypical face
pain, bruxisim (grinding of teeth) and are much more common especially in older populations.
Once other causes of pain have been thoroughly excluded and pain is related to Parkinson’s due to multiple factors above
it is the job of the dentist to help sort out which is the main culprit in the pain -whether infections, or lack of saliva,
or poor nutrition or hygiene …thus make a formal treatment plan to alleviate symptoms. treatment plan can include things like:
Use of artificial saliva to help with dry mouth, for sailorrhea consider a
couple of alternatives sucking on hard candy of course sugar free…but don’t
want or increase cavities and increase diabetes so if drooling severe discuss
medication options like levsin or Botox Injections into salivary glands. Botox
injections are still the recommended treatment for bruxisim which causes severe
jaw pain ….this is most effective …guards do not worK! & are Expensive!
And usually break !
Also to prevent decay, make sure you brush regularly. It can be hard to brush
and maintain hygiene especially as Parkinson’s symptoms progress due to poor
dexterity, Loss of fine motor control, increase rigidity , tremors and
dyskenesias to name a few things so consider investing in a good electric tooth
brush. Also get a long handle for it to make it easier to maneuver.(I have had to switch because
my rigidity was preventing me to be able to brush properly my whole mouth …one side is stronger than another!)
This solved my problem and if you have trouble flossing use mouth rinse 3 times a day!
Some dentist have suggested putting a regular grip brush inside a bike handlebar grip or a
tennis ball for stability and dexterity.
Also, try a ” one handed” technique using the stronger side of your body. Brush
after every meal, if not able to do so at least rinse your mouth with water or
mouth rise. You should replace your brush at least every 3 months or if bristles
Also avoid irritating products like alcohol, tobacco, acidic and spicy foods.
Because Vitamin D is so compromised in PD patients, 1/2 showing Vitamin D insufficient, while a 1/4 have
clear deficiency, according to Archives of Neurology report. Therefore, I recommend, that all PD patients have their Vitamin D levels checked at least once a year by their
Neurologist or MDS. The Endocrine Society Recommends the following guidelines for blood levels in adults and children. Vitamin D deficiency-20ng/ml or less
Vitamin D insufficiency- 21-29ng/ml
Vitamin D sufficiency – 30ng/ml or greater (NL)
Of course when you have dryness and take a lot of meds you are more prone to
dental sensitivity and tooth decay….I know that since I was diagnosed With PD,
I have had lots of tooth sensitivity that fortunately
responds well to Proenamel Sendodyne.
Aside from the issues of dryness, pain and sensitivity there are many other reasons why it is difficult
for both patients and dentists alike to deal with oral hygiene.
First of all tremors have a tendency to increase during stressful
situations and what can be more stressful than going to the dentist! Tremors can
be present in the tongue and head (although head tremors are not typical of PD
but more pathogneumonic of ET but there may be some overlap in some patients).
These tremors are involuntary movements and can be present as dyskenesias or
dystonias of the neck which make a routine cleaning extremely difficult much less any other dental work.
Another big problem PD patients encounter is salivary control or excessive drooling (sailorrhea).
Patients can also have excessive neck rigidity or stiffness including that of the facial
muscles making it difficult to open their mouth and or weakness causing problems with
swallowing or biting down during X-rays or cleaning.
PD patients by nature are anxious and can become even more so increasing their levels of fatigue
during their visits to the dentists. These symptoms are both caused by the illness itself and can be a
consequence of the medications patients are on. The combination of anxiety, fatigue can at times make it
very difficult for them to tolerate being seated upright for long or awake to be cooperative.
Along the same lines, some patients, especially in moderate to advance stages may suffer from
orthostatic hypotension[OH] again making it extremely difficult to sit for any significant length of
time or tolerate change in position in body or neck movements without
causing them to feel faint, dizzy, or pass out.
One way to compensate for [OH]is follow some of the maneuvers I suggested in my blog on [OH]….wear Ted hoses,
make SLOW body movements and talk to doctor about medication changes consider new medication Northera …
Finally, Tips to help ease your anxiety and make your visit at your dentist easier :
1) Make appointments when you are at your best whether in am or in pm…. Most
Parkinson’s patients have trouble getting going early in am…
2) Ask your doctor to give a sedative like Xanax or Valium to relax you and stop
or decrease the tremors. ( have a driver)
3) If need to then schedule general anesthesia …if you do need general anesthesia…may
not be able to take your oral meds especially Azilect
or other MAO inhibitors. Avoid or limit meds like Demerol OTC cold / cough meds, dextromethorphan,
pseudo ephedrine, phenylephrine, nausea meds
Antidepressants -MAO -a , ssri’s , Snri, tricyclics- all of these have potential of making PD symptoms worse
Also minimize narcotics and pain medications.
But you can still take
NEUPRO patch and take oral dissolvable sinemet (Parcopa) your neurologist can
prescribe this….you can also have IV amantadine and can have scopolamine patch
to decrease nausea and vomiting but of course if you are going to have any kind
of procedure whether you have general anesthesia or mild sedatives ( conscious
sedation) like Xanax need to have someone accompany you because you will not be
able to drive on your own. For pain Tylenol plus an anti-inflammatory usually works well.
4) request to be seated more upright to reduce aspiration risks.
5) make more frequent appointments ( every -3 months if you have gum disease), and of smaller
duration to avoid fatigue, pain, dystonia …
(I know that my dystonia really kicks in if my cleaning lasts longer than 30
minutes then I have pain for few days which then triggers migraines…I avoid by
asking for 5 minute breaks…if you are not feeling well DO NOT be afraid to reschedule!)
if you need to have work done [Consider restoration of old fillings, ill filling dentures,
replace crowns and bridges if needed in early PD when things are a lot easier with a lot less need
more anesthetics or suspension or alteration of medications or risk of
complications because difficulty owning mouth etc. also consider dental implants
for over dentures before Parkinson’s gets severe].
Arthur H.Friedlander, DMD, Michael Mahler, MD, Keith M. Norman,BA, Ronald L.
Ettinger, BDS, MDS,DDSc,DABSCD, “Parkinson’s Disease, Systemic and Orofacial
Manifestations, Medical and Dental Management”, JADA, Vol.140, June 2009
Devere Ronald, MD FAAN, “Cognitive Consequences of Vitamin D Deficiency”, Practical Neurology,
Vol. 13, No.1,January/February2014.
James M. Noble, MD, MS, CPH. ” Dental Health and Parkinson’s Disease”,
Parkinson’s Disease Foundation, winter 2009
“Low Vitamin D levels Associated with Parkinson’s Disease’, Parkinson’s Disease Foundation News & Review, winter 2009
Michaell A. Huber, DDS. ” Parkinson’s Disease and Oral Health,” The American
Parkinson Disease Association, Inc. 2007
Satbir Grover, BDS, MS, Nelson L. Rhodus, DMD, MPH, Dental Implications of
Parkinson’s Disease, Northwest Dentistry Journal, 2000-2013.MN Dental Assoc.
“Everybody’s always asking me about my blood pressure. They did an interview once where they hooked me up to a blood pressure machine and they rile me. I’d yell and scream and then it would go back to normal in few minutes. Everything else probably rotting inside – but my BLOOD PRESSURE is spectacular.” Lewis Black
Today, I thought I would visit the topic which causes much distress and casualties in many people suffering from Parkinson’s disease and other Parkinsonian syndromes known as low blood pressure or orthostatic hypotension. Especially important is the fact that after more than 10years, there is finally a new drug approved in the states by the FDA for neurogenic orthostatic hypotension [OH] (abnormal low blood pressure with standing). [This is of significance because February is “Go Red“month to promote cerebrovascular and cardiovascular-heart and brain health- and having too low of a blood pressure like too high of a blood pressure can be a risk factor for stroke.] OH can be seen in many neurological diseases but is frequently present in all the Parkinson syndromes. Depending on the Parkinson type of syndrome, the low blood pressure can occur at the onset of disease or towards the middle or the end and the severity can vary accordingly.
In Parkinson’s disease, the symptoms of feeling faint, dizzy, lightheaded usually comes on mid to late stage in the disease and can be exacerbated by intake of Parkinson medication especially dopamine agonists . The symptoms can be so severe and alarming causing a person to fall, pass out, subsequently lead to repeated head traumas and other injuries and broken bones along with frequent emergency room or doctor visits. In an already frail or debilitated person this can be very devastating, lead to worsening Parkinson symptoms indirectly due to immobility or worsening cognitive problems from pain meds not to mention expensive!
Orthostatic Hypotension (OH) is define by physicians as a sharp drop in blood pressure of 20 millimeters of mercury (20mm Hg) or more in systolic pressure (top number) or 10 mm Hg in diastolic pressure (bottom number) with standing either from sitting or arising from bed or from a chair – this phenomena occurs within 3 minutes of standing.
Some of the symptoms of OH are balance loss, unsteadiness, weakness, headache, dizziness, nausea, tremors, fainting, poor concentration, lightheadedness, clammy hands and feet, chest pain.
Sometimes in order to be sure that we are dealing with orthostatic hypotension is to have your doctor measure your blood pressure…the doctor may need to check it in three different positions just to be sure…sitting, standing , and laying down and sometimes if not entirely sure they may refer you to have a tilt table test.
Risk factors include:
Age-elderly over 65 Pregnancy– uterus gets big press on large veins decreasing blood flow Medications-taking blood pressure meds, PD meds Central nervous system disease– I.e. Parkinson’s Dehydration– not drinking enough water, alcohol consumption, vigorous exercise, exposure to heat, fever, Prolonged bed rest/Changing body position/ prolonged standing Straining while going to bathroom
Normally with a healthy autonomic system when an individual arises from sitting or standing, the blood vessels constrict to adjust to the change in pressure and increase the blood flow to the brain. If you remember your Physics, since the vessels are smaller the pressure has to be higher and travel faster to get through a smaller diameter to reach its given destination. Therefore, the heart has to increase blood flow (rate). But, Parkinson’s patients and other parkinsonian individuals [as well as others with neurogenic diseases involving abnormal peripheral nervous system ] can not make heart pump faster so blood pressure drops and because blood is not getting to brain fast enough as it is required they pass out or feel faint.
For those of you who have OH or live with someone who ha sit know the devastation and the havoc it can wreak in someone’s life ….it can leave you stranded when and unable to cope or perform even the simplest of tasks when symptoms are severe. For those that don’t have severe Oh, there are several tricks to coping with OH as well as a number of medications. However, as in life nothing is a 100% foolproof or tolerable by everyone. Therefore, I am very grateful to have one more new drug added to the armamentarium of tools to which combat this complex and even potentially life threatening problem. The new comer is droxidopa or Northera ….was just approved by FDA for treatment of neurogenic OH. This is to be taken 100mg 3x a day to a maximum of 600mg 3x a day. Potential adverse effects are an unhealthy increase in blood pressure requiring immediate medical attention, stroke; other less serious side effects include: nausea, headache, high blood pressure, dizziness, and fatigue.
Other medications that we currently in the states to treat OH are salt tablets, Florinef, midrodine (Pro amantine).
Sometimes outside indications for medicines that have side effects of increase high blood pressure might be used by some physicians as last resort.
Aside from medical therapy there are some steps that you can take to prevent falls by decreasing symptoms of OH. 1) Drink lots of fluids
2) exercise regularly
3) periodic review of medications especially blood pressure and antidepressants like tricyclics examples of these…elavil)
4) wear compression stockings…can buy at any drug store
5) get up slowly from bed or from sitting
6) avoid alcohol consumption
7) make sure salting food …talk to doctor first
8) sleep with head of bed elevated 15 degrees…put a brick at head of bed.
9)eat small frequent meals
10) take 2 (8 ounce) cups of cold water if you will be standing for a long period of time or before you get out of bed…avoid hot beverages hot food
11) wear abdominal binder before getting up but make sure you remove prior to returning to bed.
12)when you stand up aside from standing up slowly do iso Eric exercises …stand on one leg for few minutes then bend knew continue standing then switch legs and repeat if unsteady don’t try unless you can hold on to someone or something and careful not to fall or hurt yourself.
13) avoid bending at the waist-always bend with your knees
14) if while standing start to feel dizzy- cross your legs in scissor fashion & squeeze or put one foot on a chair or ledge & lean forward as far as possible.
Just the other day, I wrote about the gender differences in Parkinson’s ….and today I open my mail and I get a whole journal about gender issues particularly that of neurology of pregnancy of various diseases which covered some of the movement disorders.
As I wrote previously, not a lot is known about pregnancy and Parkinson. In this huge journal less than one page was dedicated to this topic which tells me we still have a long way to go in understanding role pregnancy plays in Parkinson’s pathology and physiology.
As I mentioned in my blog on gender differences of PD , evidence of estrogen effects on PD is conflicting to say the least according to the experts. The opinions on whether is beneficial or detrimental are all over the spectrum depending on the different patients evaluated ranging from improvement, worsening and no change in motor symptoms. In a study of 36 pregnancies, 27 ( which was a total of 47% ) of them had either worsening which also included appearance of new symptoms of PD during or shortly after delivery. However, hard to say if this is true considering that this study involved only a very small group. Further studies are need to evaluate if indeed pregnancy tends to worsen symptoms or bring forth new symptoms. Good news, however, from this small study the patients often returned to baseline after delivery.
Only one report in literature has occurred of De novo onset of Parkinsonism at 11 weeks gestation of unclear etiology which resolved spontaneously after delivery!
On the other hand, unlike parkinson’ s, tremor may occur in pregnancy as a consequence of increased physiological tremor, from essential tremors or from drug induced tremor caused by agents that cause increase in adrenaline (sympathomimetics).
Essential tremor is the most common inherited movement disorder, characterized by action tremors usually affecting both hands but more common in one side. Tremors are worst with affeine and improve with alcohol (but I am not recommending you start drinking to self medicate!) [ as an aside, for people who are alcoholics and present with severe action tremors to the doctors office a big majority of them with proper questioning will tell you that they started drinking to mitigate their tremors subsequently becoming alcoholics! & thus tremors NOT caused by alcohol but essential].
Because most drugs used to treat tremors are a high risk during pregnancy particularly during first trimester and even throughout the duration of pregnancy. Only patients with disabling tremors should consider treatment.
Both groups [PD & ET] must discuss with their physicians if are at childbearing age especially if contemplating having children. But, MUST do so PRIOR to TRYING TO have children because in most or the majority of medications especially for tremors the damage can already be done by the time people find out they are pregnant in first trimester!
Also need to discuss if planning on breast feeding as most medications are also contraindicated!
Unfortunately, only Nebraska State has a pregnancy registry for Parkinson’s
As far as I know, there is no ET, pregnancy registry…
Here is a list of meds for PD and their FDA categories
Drug. FDA Pregnancy category Breast -Feeding
Levodopa. C. Do not use-no data on milk
Rotigotine. C. No human data
Amantadine C. Do not use
Artane. C. No data on excretion (milk)
Pramipexole C. Do not use
Ropinirole. C. Do not use -it is excreted in
According to US Food & Drug Administration – Assigned Pregnancy Categories as used in drug formularies
Category A, B, C,D, & X
C : means that animal reproduction studies have revealed an adverse effect on the fetus and there are no adequate and well controlled studies in humans but potential benefits may warrant use of the drugs in pregnant women despite risks.
For more information on this topic go to: Demirkian M, Aslan K, Bicakci S, et al. Transient parkinsonism: Induced by progesterone or pregnancy? Mov Disord 2004; 19(11):1382-1384.
Scott M, Chowdhury M. Pregnancy in Parkinson’s disease; unique case report and review of the literature. Mov Disord 2005; 20(8):1078-1079.
Morgan JC, Sethi KD, Drug-induced tremors. Lancet Neurol 2005; 4(12):866-876.
Zesiewicz TA, Elble RJ, Louis ED, et al. Evidence-based guideline update; treatment of essential tremor. neurology 2011;77919);1752-1755.
I sure have….
Most Frustrating thing for me was to discover that after being the QUEEN of MULTITASKING, I now was having trouble even carrying two things at once.
When, before NOT once did I need a calendar because I could keep everything in my head now even when I wrote things down I had trouble keeping track of things…..
Even spent hours pondering why some people could continue to keep working even years after Parkinson’s while others can’t do so for very long after diagnosis?
I have often thought about this…
and wondered if I was alone ?
Given the fact that I had to give up my one true passion in life …medicine… not long after Parkinson’s diagnosis while others like astronaut Rich Clifford were able to continue to remain viable in their careers for years…
I remember while I trained with Dr. Jankovic hearing about the astronaut (who was his patient) still working despite Parkinson’s disease and wondering how that was possible with such stress and difficult job requiring much meticulousness and concentration. Frankly, his feats were always admirable.
Especially, in light of the fact that stress CAN and DOES exacerbate Parkinson symptoms. We know that stress increases adrenaline and adrenaline also known as epinephrine is the end result in the pathway where dopamine is a precursor…so if you are producing a lot of epinepine it means you are using up more dopamine on the starting end. Therefore, your Parkinson symptoms can come on faster and may lead to fatigue quicker.
Of course, everyone is unique as is their Parkinson’s and aside from the obvious physical impediments of dyskenesias…tremors will also increase with increase adrenaline rush. But, tremors do not necessarily have to interfere with ones activities since Parkinson’s tremors by definition are at rest. These are not present during action…in fact they go away with purposeful movements.
A few years back, I read that patients with Parkinson’s did best with activities that required repetition, or very methodical tasks. I thought about this a while. At first, it seemed to me to be contra intuitive because I thought this would fatigue the individual and the muscles but this is only the case for those of us who have dystonia (The problem is in the muscle not being able to relax). It turn out that in fact, doing repetitive movements or actions is very advantageous in any individuals especially in Parkinson’s patients because you essentially are putting your brain in auto pilot taking the thinking part out and essentially bypassing the “bad” circuitry (finding new way to do same activity with same desired outcome). An example, perhaps some of you are artists, musicians or even athletes by profession and I am sure that all of your instructors, coaches and teachers have taught you one thing or you might have discovered on your own that mental rehearsal of a shot, or playing piano or even painting can be as valuable or even more valuable than actually performing the function because in your mind you will ALWAYS DO IT FLAWLESSLY EACH AND EVERYTIME. So, that when you go to perform you can perform action automatically without thinking! You are bypassing that relay station….This is akin to tricking the brain to being able to walk NORMAL with marching music, or by holding someone’s hand, or visualizing stripes or even able to paint or sculpt flawlessly when you cant even tie your own shoes-fooling the brain and a finding new route!
So, if you do something for 120 hours a week…something over and over, you can do second nature without thinking…Parkinson’s disease and symptoms should not come into play much. The key is PERSISTANCE! Don’t get frustrated because you can’t tie your shoes for instance find a new way to do it and do it a thousand times if necessary until it becomes second nature. We can’t dress ourselves the way we use to…make modifications..
Same thing goes for our jobs, careers and life opportunities in general. If your job or life demands that you are always having to change focus, your brain can not officially adapt …it has new challenges…
so, what can we do?
Increase our meds to be able to cope with the needed increases of Dopa required for one; two, try to find an alternative way to perform your job where you don’t have constant variation…seek for repetitive, methodical positions- your brain will thank you!
The constant need for higher and higher doses of dopamine is reason, I finally realized why I found it difficult to function as a physician. In fact, most people I know that are (were) in the medical field are (were) not able to do so very long after their diagnoses….
I asked what could be the reason?….
While, I was in practiced I often explained to patients that just like their bodies were slow to respond to the brains commands (bradykenesia) so was the mind at times with PD finding it difficult to shift from one task to another because the connections were “slow.”
But, I never realized how utterly TRUE this REALLY was and how CRUCIAL this ability was to be able to be an effective and productive physician or any person working under life and death situations!
My neurological skills did not diminished ….what changed was my capacity to work under pressure and make quick decision one after another, and another on and on…nonstop!
My capacity to focus and pay attention to detail did not changed…in fact I think they enhanced but shifting gears quickly to different tasks at current levels of medication caused me a great deal of frustration.
My brain could not adapt to the constant bombardment of the unexpected. Sure doing an exam is rote …is what comes next…everyone is different…plus the constant interruptions from someone falling in waiting room or a call from the ER can cause the dopamine to be used even faster. Perhaps there is something to the theory that there appears to be a higher risk of PD among health professionals and one theory for this has been cited as the rapid aging of the basal ganglia induced by stress (i.e. the dopaminergic system). This compounded with some genetic predisposition may be triggering symptoms sooner than they would have if stress level was less severe?
Which leads me to the question. What can we do with this information..? Perhaps, we should first recognize the fact that multitasking is a lot more challenging with PD albeit not impossible as I stated above. We need to recognize that we can retrain our brains to do any and all activities. We just might have to put in some extra time doing so along with some creativity which fortunately most Parkinson’s patients seem to already be endowed with this either as part of the disease or as a consequence of medication. This process then needs to be carried over into education of doctors (health staff), employers, family and caregivers regarding this…
A person with a job requiring lots of multitasking may need to need up their meds or consider changing to accommodate their own individual unique skills to continue to be productive in society without exacerbating their illness as much.. also if they choose or have to continue to work in a stressful environment, I suggest asking for or allowing themselves some down time for dopamine levels to reboot… at least 5 minutes every hour to 2 hours- again your body and brain will thank you!
I, too had to make a choice… I could function just as consultant or lecturer with someone else doing all the dictating and note taking and call backs and no unexpected calls at 3 am with some one crashing in the ICU because for me to be able to function at the level I used it requires 3x the amount of medication I currently take…(to be able to keep up with dopamine demands being rapidly converted to adrenaline) the choice is do I stress my body, increase my side effects, increase my risk of dyskenesias to be able to continue to work as before or do I modify my life style? Find things that use my knowledge and expertise without exacerbating my symptoms or needing increase in meds and still be able to multi task because I am not over whelming my nervous system! Finding a balance is also Key!
The choice is clearly an individual one….
But, you can still be an active member of society contributing with your talents as long as you and your caretakers have a clear sense of your capabilities and limitations. Explore your de novo artistic talents become an artist, writer, painter, the world has endless possibilities. A perfect example of a person with severe limitations which has not allowed his illness to defy him whom I greatly admire both as a person and as a scientist from an equal perspective of a neurologist and person with disability is Stephen Hawkins ….he has single handedly changed the face of science and physics forever despite being trapped in a body that no longer responds to a gifted and genius mind. We all can make a difference and have a destiny to fulfill… remember, “don’t just shoot for the sky because people have already landed on the moon!”
“Aim for the moon and even if you miss you will land among the stars!”
A month ago, I read that as the new year rung in several Parkinson’s patients chose to take their own life. I can only imagine the devastation one must feel to decide to go through with something like this….I was extremely saddened by these events ….wondering where the friends and family were and at what point does one loose all Hope?
So, I thought I would revisit the topic of stigma in PD that I touched upon a few months ago.
From my years of practice, I recall many patients becoming extremely more withdrawn from society due to the physical impediments like decrease mobility, excessive drooling, increase hypophonia ( low-soft voice ) causing individuals to become increasingly socially embarrassed. This reminded me of how PD can be both socially and emotionally isolating. A lot of people that I have met over the years have been afraid to say they had this illness fearing public scrutiny. So, they chose social isolation or minimal contact with others in potentially embarrassing or humiliating situations like dinner parties.
They were afraid of chocking, spilling food & drinks due to tremors or DYSKENESIAs.
People sometimes are afraid as being judged incompetent or drunk due to poor gait, slurred speech or questioning one’s handwriting each time due to micrographia or severe tremors.
What about struggling to get money or credit cards when they need to make a purchase or pay for dinner?
According, to Dr. Julio F Angulo: ” shame is embarrassment felt in private.”
So, no wonder our self esteem begins to erode if we do not surround ourselves with people that love us, support us, and understand our shortcomings…we live in constant dislike and loathing of ourselves and begin to hate and blame our condition and best way to get rid of this fear & shame is eliminate the culprit! Hence, there is an increase risk of suicide in Parkinson’s rarely ever talked about.
But, I say that this does not have to be the case…first of all we as individuals have to realize that all of us embarrass ourselves at one time or another whether ill or not. And that our biggest critic is our selves, other people don’t pay nearly as much attention to our faults and weakness as we might think…they are too busy worrying about their own faults, difficulties, challenges and own prejudices.
Although, is no doubt that having Parkinson’s presents daily opportunities for embarrassing situations, the negative feelings it conjures up should not be pushed down and suppressed but rather discussed with other Parkinson patients. But, primarily they should be discussed with ones own physician or healthcare provider. This needs to be done as soon as first negative feeling arises or sense of shame begins to take root or even when you notice a change in your behavior. For instance, although you might enjoy the company of others you might suddenly find yourself making excuses to avoid social situations.
Your doctor can help you find the right solution which involves a wide array of medical treatments like psychotherapy.
Antidepressants can also play a role in the treatment of these symptoms. Some methods which might be suggested include desensitization, thought stopping, role playing just to name a few.
But, although all these things can be helpful, the main thing that will keep someone from feeling sad, blue and at their wits end is friendship, love, connection to others like ourselves…and above all FAITH!
So, let us not forget to reach out to one another….
I leave you with these words of inspiration..
“dig deep.look within. it’s all there inside you.
Except sometimes…it is not.
Everybody has days when all
The digging deep only turns up mud.
And that’s when you hand over the shovel.
You reach out. You let somebody give you
What you can’t mine for yourself.”
WE ARE STRONGEST TOGETHER, HOLDING HANDS.
From BE Inspi(RED): words of hope and courage.