Best way to Deal with AM (early morning) offs! By Dr. De Leon

” When the world careens out of control, we can rest in the fact that God spun this world with a simple word. Matter from emptiness. Beauty from void. Community from chaos.” Mary E. DeMuth

Today, I will talk to you about a subject that is so important for us with PD to know and understand. Many of us talk about ‘off’ periods but still have some confusion about what that really means. First, you should know that there are 4 ‘off’ periods we doctors focus on. These usually are in relation to levodopa.

#1 end of dosethis is known as the return of PD motor and non- motor symptoms which resurface once medication effect ends. For instance, if I have tremors which lessen or go away completely with intake of levodopa when the levels in the blood begin to fade before my next levodopa intake there may be a resurfacing of tremors. What we want is for symptoms to be continuously suppressed with little or no intervals between time one dose effect ends and the effect of next dose begins.

#2 peak dosethe levels of levodopa circulating in our blood stream fall into a bell curve shape. At the beginning, levels rise slowly and sustain within therapeutic range for several hours. However, as our disease advances we may experience a fast rise going above the therapeutic range and then drops faster in a shorter amount of time. So not only could you experience end of dose effects sooner than before but at peak level of dose because outside of therapeutic levels one may experience- side effects like dyskinesias. So a patient may feel good for a short period of time have dyskinesia’s at peak for 30 minutes then go back to normal.

#3 early amthis is when patients have gone a longer time without medication through the night and basically have worn off completely when they arise and essentially are experiencing an end of dose effect.

#4 sudden offwe know that when we first start taking levodopa, our brains are exquisitely sensitive to its effects, meaning that a low dose can go a long way. As time goes by the length of time it lasts in the system diminishes. But each dosage should last same or nearly same amount of time in system i.e. 6 hours every time. However, in some people the effect of medication in regards to time in which is effective becomes unpredictable sometimes it last 6 hours, others may last 4 hours while other times may not have an effect on motor symptoms. These episodes are called sudden wearing off.

The more you know the better you will be able to discuss changes and fluctuations with your physicians so they in turn can adjust your medication to fit your needs.

This I believe is one of the key reasons why so many of us are not as well controlled. Sometimes we erroneously assume what is disease, what is side effect and what is meant by being ‘off.’

I will discuss treatment for all these types in the next few weeks. Now that all of you are caught up in the terminology, I will focus on early am wearing off because I think this is a very common problem for most of us who live with PD. Plus, it is one of the easier things to treat.

Most of us who live with a chronic illness like Parkinson’s disease know how hard is to get going in the am – especially when suddenly awoken from sleep. imagine being confused disoriented stiff unable to move with ease or move at all – I know all of you have struggled to get out of bed, get dressed, shower, brush your teeth or even take your medications first thing in the morning. At times I had been unable to dress myself without falling / feeling like a woman made of tin and unable to find the oil to save my life – you might even awake not knowing where you are or how you got there.

Some people may fall out of bed or fall with first step because of orthostatic hypotension but more commonly due to freezing episodes.  Some of you may even experience shuffling while walking bouncing from side to side of corridor with fear of falling, unable to open bottles to even take first dose of medicine in the morning.

Sound familiar?

If this happens every single morning, then we are dealing with am off episodes.

First, you must look at the time you take your last medication.

Second, what time do you awake in am? Do you wake up in middle of the night to go to the bathroom or some other reason? Can you move with ease at that time? Or are you having dyskenesias?

Third, what is your last medication? Is it long acting or short acting? Do you take anything else to make it last longer?

untrompo

For me, I began waking up extremely rigid but was also noticing that I was not moving in bed at night – normally stuck in one position which was causing my arm to go to sleep. I go to bed late and wake up early. So I increased my medication by taking a dose close to bed time but also made sure that this dose would last till I awoke the next day. Often times we treat am off by increasing bedtime dose and prolonging it with comtan, amantadine, dopamine agonist. I prefer a comt inhibitor it provides a smoother release. Now that 24 hour comt inhibitor (opicapone) available in some countries plus extended release amantadine (gocovri) we should be able to diminish these morning periods with greater ease. Another way of improving am wearing off is by taking apomorphine which will kick in fast and cover you until your first am oral dose kicks in.

The main point is documenting and paying close attention to how your medication is working to allow doctors to adjust your medications as needed. Caution, many of us have severe constipation which interferes with absorption of medication in the small intestines- what this does is delay onset of medication effect – NOT a wearing off!! Plus, the doses can accumulate giving you more side effects when it kicks in like greater nausea, vomiting, dizziness, hypotension, and/ or not control symptoms to the degree they are usually controlled (blunted affect with every dose).

so lets get moving again in the am by following these tips.

@copyright 2018

all rights reserved by Maria De Leon

 

 

 

Demystifying Dyskinesias: By Dr. De Leon

Today, I though I would talk once more about the dreaded D- dyskenesias-

We have all seen patients and heard stories of the horrible life of having dyskenesias – many are so terrified that they avoid taking medications altogether.

Are all involuntary movements dyskenesias? No! some parkinson’s patients along with parkinson’s plus  and parkinsonism patients can have other types of movements like

  • chorea– irregular, spasmodic, involuntary movements of the limbs or facial muscles, often accompanied by hypotonia. This can occur as a result of stroke, tumor, infection, benign, part of Huntington’s chorea which may also develop parkinsonism after treatment.
  • myoclonus spasmodic jerky contraction of groups of muscles. this can be benign, can be seen occasionally in parkinson’s patients, also as a result of stroke or nerve damage. Seen in the palate with people with migraines sometimes.
  • alien -hand A clinical finding in which there is awkward asymmetrical involuntary movement of the hand or limb, which is interpreted by internal sensors as ‘alien’; the patient’s limb moves as if of its own volition. This is characteristic of CBGD- corticobasal ganglionic degeneration.
  • seizures- like focal seizures – which can be caused by strokes, tumors, mithochondrial diseases, other genetic disease like DRPLA
  • tardive dyskenesias– abnormal movements due to anti dopamine medicines or withdrawal of antidopaminergic meds, also seen with various medicines like lithium, depakote, reglan, phenergan long term intake
  • tics- not seen in PD
  • RLS– are part of parkinson’s and other parkinsons syndromes like MSA – these have more rem and periodic leg movement of sleep
  • -ataxia- wide base gait, slurred speech, incoordination of eye and hand movements. machado’s syndrome, strokes, cerebellar disease, ataxia syndromes, dentatorubropallidoluysian atropy (DRPLA)
  • hemifacial spasm- involuntary contractions on one side of the face
  • painful legs moving toe syndrome

As you can see there are several abnormal hyperkinetic (unwanted or excess) movements disorders some of which are symptoms and whole diseases by themselves. any of which can occur in any one given individual but the key is the timing and relation to other symptoms and medication intake. also important to note that only idiopathic Parkinson patients develop dyskinesias. dysk

If you have any of the above plus parkinsonism especially if not responding to medication, have more confusion at early stage, bladder problems or even balance issues especially if gait is wide – you are NOT dealing with idiopathic Parkinson’s disease and warrants further evaluation.  also of importance if it seems there is a strong family component or heredity to these movements most likely NOT Parkinson’s disease.

If Parkinson symptoms began after being on anti-psychotics, anti emetics (nausea medications), sleep aids, lithium, or depakote then you don’t have typical PD most likely.

Now let’s say you got diagnosed with PD and were responding well to treatment and then suddenly one day you just began having abnormal involuntary symptoms on one side of body or just one limb and is constant or lasts only a few minutes- this is NOT dyskenesia until proven otherwise need to rule out seizures, strokes and tumors. Especially if you have only been on levodopa a very short time.

So okay in the old days the majority of people got dyskenesias and they had to live with them most likely, that’s because we had a very limited number of treatments and the best medicine was levodopa so very soon after diagnosis EVERYONE was on levodopa. What happened when patients symptoms advanced? Since we did not have better treatments we simply kept increasing the dose…asking patients to take more and more often as the receptors got over saturated subsequently having fewer and fewer positive effect only increasing the side effects..dyskenesias among others.

At the beginning of my training it was not uncommon to ask  patients to take levodopa every 2-3 hours and asking them to take 1/2 and 1/4 tablets at a time- However because they have carbidopa we were never able to make the doses quite right. when all else failed before the pallidotomies, thallidotomies  and hospitalized people for “drug holidays”. But fortunately in the mid 90’s things started to turn around for people with parkinson’s with the addition of dopamine agonists, then came Comt inhibitors, DBS and mao inhibitors. When I was in practice, I only had a handful of patients who took levodopa every 3-4 hours – and that was because they were already on Comtan and could not take inhibitors, could not do DBS and also were already on MAO inhibitors. But when the neupro patch and Stalevo formulations came out so many of those patients who took levodopa more than  3 times a day were able to cut back hence reducing the occurrence of dyskinesias or ameliorating them completely. As i have said many times before there are so many drugs that most of us should be able to find the right combination without overdosing and the KEY to preventing and decreasing these is taking small doses of various medications – a cocktail, kind of like the mambo #5 song-  a little bit of  Mardi Gras.. a little bit of Rita, little bit Erica.. a little bit of you.. so a little bit of levodopa, a bit of dopamine agonist, a bit of mao inhibitor, a bit of amantadine, a bit of comt inhibitor and a lot of you. if you are unable to tolerate meds and that’s the reason you take more than 4 doses of levodopa or because of cost of the others ..first comtan and Stalevo generic – although, I hate generics..generic stalevo which comes in 75, 100, 175, 200, and 225mg could not only solve a lot of these problems but also make it easier on your wallet and stomach because would be taking fewer pills.

Even after 10 years of PD, I take Parkinson’s medicines only 3 times a day- only when i travel and give lectures do I sometimes take 4 times a day – because if i need more i can substitute the rytary or stalevo for a higher dose. The other option for people that have busy active lives or cant tolerate medicines or have to take more than 4 times a day is to discuss with physician about surgical procedures like DBS. You should not be intimidated about taking levodopa because unfortunately not only is it the gold standard but it is so for good reason- because dopamine is the center of our being! dopamine agonist can only go so far in producing dopamine in the brain we need the actual substance to help us feel like ourselves again. i have discovered through the years of having the illness myself that is the lack of this which makes us forgetful, feel like we don’t care, feel anxious and even depressed to a certain point because serotonin is also needed for the latter. so by shying away we are doing ourselves a huge  disservice. this is the reason people keep adding more and more dopamine (levodopa) when they start feeling anxious – increasing the dopamine level is the right track but NOT by adding more levodopa (sinemet) because what happens if you keep pouring water over a glass that is already full? the excess is simply going to spill over right!  but if you are still thirsty need more levodopa since you cant fill a glass more than when is already full you simply drink more glasses of water- in essence this is what we try to do replenish the dopamine by circumventing the saturated receptors so we block its degradation ( mao inhibitors and comtan) so it last longer, we add substrate at the beginning of pathway to increase the production so when that dopamine blocking receptor falls below level you have more on the way ( another glass coming).

I hope this helps illustrate the need for early treatment with levodopa and also to consider taking more than one type of medicine to help keep you active and with fewer side effects. The best way to help yourself when already having dyskenesias is sketching the pattern, (when, how long, predictable, times a day?); if there is one medications can be adjusted and/ or DBS can done. If not pattern to involuntary movements they are random and unpredictable usually only way to treat is with surgical procedures.

 

@July2017 ALL rights reserved- Maria L. De Leon

 

 

Intelligent Decision Making: by Dr. De Leon

Image result for the road not taken a quote

I regret less the road not taken than my all fired hurry along the road I took.” Robert Brault

Many years ago when I first began this journey with Parkinson’s disease as a young doctor there were very few choices in the treatment of PD. since then there has been an explosion of new treatments  and many are on the way. The news are a god sent like a much needed rain to a dry and hardened soil. However, they can also cause a lot of turmoil and stress for those of us living with the illness.

Knowing which medicine or treatment to choose and how to use it to get the most efficacy is still a challenge for both patients and physicians. but, in many ways this is a good problem to have rather than no choice at all. As new treatments become approved the possible combinations for treating a single individual increases exponentially. Which means that for us patients we not only have more options but also need to be more patient and willing to try many different medications and combinations to find the right one- this may take some doing and above all TIME! Plus, you and the treating physician need to well versed in these new treatments. In order to accomplish this feat now more than ever the presence of a specialist i.e. a movement disorder neurologist  at the helm is crucial.

Both as a patient and physician I have learned that 1) you must have intricate knowledge of a formulation in order to use most effectively plus 2) have intricate knowledge of the person we are dealing with in order to be able to match the two in a positive fusion. This means that sometimes you have to be willing to use a bit of unconventional treatments requiring multiple doses, frequencies and medications to achieve the best outcome possible. I am a primary example of this fine tweaking resulting in my Parkinson’s being extremely well controlled for someone who has lived with it for more than 10 years. The first step to achieving this is being well informed as a patient in order to make the best decision possible given what we know at present. I believe that being a neurologist whose field of interest is PD puts me at a greater advantage but this is something that can be achieved by everyone.

You must start with knowing yourself and your body function. For instance,  many people have asked why I have not head DBS especially since I am young and there is good data showing that early DBS is extremely beneficial decreasing disability. The earliest data indicates patients being stimulated after only 4 years of disease.  I say to you as I have said to those people- although data is great 1) I am doing great with medication- no need to risk brain surgery although minimal risk is still brain surgery. 2) I am not a good candidate for DBS- I am a terrible surgical patient for many factors and more importantly as far as my PD I believe that my quality of life would be worst certainly if I were to do bilateral. I already have swallowing issues and balance issues both of which are known to worsen with bilateral DBS. plus, not to mention I am already overweight due to meds; studies have shown that women have a higher tendency to put on weight on average 20-30 lbs. I certainly do not need this. Although, I firmly believe DBS is a great therapy and is the standard of care but reality is that not everyone will do well.  In order to maximize the benefits of this surgery patient selection is of the utmost importance. Always talk to your physician about the pros and cons and expectations prior to any surgical procedure.

The other thing is that it may take a year or two to find the right combination of medications and as disease progresses there may need to be another trial and error phase not as long but equally challenging for all involved and must be patient. This is not a race to the finish line rather a slow and steady way of life.  Do not discard a medication from your tool box because it ‘did not work,‘ it ‘gave you side effects,’ or because it ‘stopped working’. First, we have to ask what is the medicine treating? is it the tremors? the pain? the stiffness? once we know we are better able to access its function.  Most PD medications do not target all the symptoms motor or non-motor for sure. some are better than other at working a specific function. this is why most often in order to have the best outcome one must take a cocktail of pills as I do. also important to note that the Mao inhibitors like Azilect  in particular usually do not cause dramatic effects unless looking at two specific things- 1) gait – it improves balance and 2) pain and 3) visual problems  so if you have neither of these issues most likely not going to notice a difference. However, I and many of my colleagues believe there is a neuroprotective component to this drug making it more than worthwhile to take. further, it has been my experience that although it is a once a day drug  it does not typically last more than 12 -14 hours hence I recommend taking it twice  a day. we just got approval of a new MAO B inhibitor Xadago which also has glutamate reduction approved for off episodes. We will see how this medication plays out. but the fact that it targets two receptors is a better potential treatment.

All of the dopamine agonists Mirapex, Neupro, Requip  can cause sedation, impulse control, and increase sexual urges as well as hallucinations in those that are prone to dementia or have dementia. Mirapex has the most sedation, impulse control and sexual impetus followed by requip. So it is important that if you are already prone to daytime sleepiness or have gambling problems or are ultra sexual that you talk to your physician about not using Mirapex or Requip unless as last resort. Also note that these medicines usually loose efficacy around 10 years so may need to take a small hiatus ( 6months to a year) and return. I prefer Neupro because does not cause sedation, OCD, nor worsen dementia. but, it can cause water retention especially in women. I myself alternate the neupro patch 2mg with 4mg. work great so sometimes have to find the right dose and is not a conventional  same daily dose. these are fairly good for tremors, stiffness, and slowness as well as for restless legs, rem behavior, bladder control,  mood (some),

The dopamine where levodopa –Sinemet is the gold standard of treatment. We also have Stalevo, Rytary and Duopa. these compounds approximate the natural substance so much better hence the effect is the best particularly when it co0mes to mood, memory and cognition in general. when people have trouble concentration , focusing, multi-tasking, learning, enjoying thins this signifies a deficiency in this chemical. what I have discovered is that levodopa in what ever form is what is required to maintain these capabilities without it we may control, tremors, stiffness, walking but we are going to feel awful, moody, cranky, fatigued, uninterested, have poor concentration and memory in fact you wont feel like you any more even if you look good and are able to do everything. of course this is the one associated with dyskinesia so people are afraid to start and even doctors don’t want to start early sometimes because of this fear which in the old days was much more certain to occur and start sooner. However, with all the medications at our disposal there is no reason to delay taking medication and even small doses of levodopa so you won’t  feel like a zombie or sub-human. I started on regular Sinemet but caused lots of nausea then went to extended release which really did not last much longer but was last nauseating then because I needed higher doses and trying to keep risk of  dyskinesia I switched and I absolutely love this drug because so many doses and don’t have so many peaks and through and again less GI and orthostatic symptoms. as my symptoms have advanced I could not extend Stalevo to higher doses without causing daily migraines – not worth the pain.  thus when Rytary came out, I was first in line to try. I too love this drug and has a benefit unlike the others that I believe it mimics more the natural brain chemical release because for the first time since I got ill I felt like “me!” even my doctor who has known me since residency has stated that I was back!

A couple of side notes on Rytary which are my own personal observation and opinion but merit looking further into. First, I find that this drug is much more constipating than any of the others so have to be ware of maintaining regular bowel schedule. I had hear and read that some people experienced chest pain and arm pain with this drug. I was on it for over a year before I began to have lots of shortness of breath and chest pain with medication- turns out caused by severe hypertension. once we added more blood pressure medication I am able to tolerate Rytary once more. so, if there is family history of heart attacks, stroke especially since women seem to have higher risk of developing strokes after PD may want to talk to your doctor about concerns, monitor blood pressure regularly take prophylaxis for stroke and heart (these risks increase as we age as well). also follow with a cardiologist regularly I do. This medicine may be best suited for people with low blood pressure. nevertheless, if you have high blood pressure as I do does not mean you cant take it means more careful and precise control of PD meds and high blood pressure.  I find that taking the medicine staggered works best but I would not recommend doing this on your own without talking to your physician. what I mean is that the recommended dose is 2 tablets twice, three times a day etc.  but I discovered among my friends who were placed on this medication at the same time I was at similar doses having disease approximately same duration of time and they are my age, that after a year’s time all developed severe dyskinesia; only difference between them and me is gender ( 4 men; 1 woman). All these people have undergone or are waiting to have DBS. about 6 months ago I began experiencing mild dystonia/dyskinesia which I first attributed to having had decrease of meds due to blood pressure issues. however, once I restarted my previous regimen I quickly noticed that when Rytary wore off I was having the problem. so I began taking them in tandem 1 tablet then 4-6 hours later the second tablet and voila no more dyskinesia and I feel wonderful. prior to this I had consider adding Comtan with it to extend duration.

As you can see even for an expert like myself, there is a lot of trial and error and fine tuning. even addition of medication like amantadine which at one point I could not take because it triggered psychosis. however, our bodies are always changing, our disease is evolving and the illnesses we have at one point may improve or worsen interfering with PD treatments. For instance if you have H. pylori this will cause much more nausea and vomiting than usual plus will render Sinemet less effective – thus if something changes suddenly or dramatically from status quo need to speak to your physician.

In the end knowing your own body, being informed about medications, and having a good rapport with your physician will allow you to make the best informed decision about what treatments are best. Always knowing the end game helps plus another thing that Is a crucial or even more so than the treatment is having continuity of care with the same physician. Only then can they truly give you the best choices available based on your own uniqueness. Inadvertently, sometimes we sabotage ourselves by hoping from doctor to doctor which only creates confusion, unnecessary repeat testing and much disruption and frustration to your own life; because first you don’t allow enough time to build an appropriate patient physician rapport which would guide the specialist to making the best optimal decisions on your behalf . Second the constant change means a change in medications most of the time because each one of us is like an artist who sees the big picture and end result and we work in our own way to achieve that- but each physician like the artist has a different picture in mind- only leaving you the patient completely dumfounded and unwilling to try new things or see the one doctor who potentially could bring the masterpiece together with all the broken pieces discarded by everyone else.

Knowledge is power! Be informed!

Copyright-2017

All rights Reseved- Maria De Leon MD

 

Anxiety in PD: by Dr. De Leon

cation

anti-anxiety pills, I would take them but I am afraid …”

Anxiety also thought of as excessive worrying is something that I have had lots of experience in dealing with as a physician and caregiver but until my medications were reduced after last hospitalization, I myself had never felt this way. I am not a fan.

As it turns out nearly 20% of people with pd experience these symptoms during the life of the disease. Fortunately, this is one of those symptoms which is extremely treatable since we have a slew of med. unfortunately, it is often misdiagnosed or overlooked causing severe mental and physical anguish.

We have recognized anxiety  as a non-motor symptom of PD not simply a reaction to having disease. As we learn more about Parkinson’s we realize that anxiety can be a presenting symptom and even precede motor signs and symptoms by many years.

There are several presentations of anxiety. The most common is  general anxiety where a person becomes overly concerned with things around him or her like when is the next doctor appointment, or lunch meeting. You may feel like passing out, have gloom and doom feelings, shortness of breath, heart palpitations, sweating, dizziness, chest pain, numbness and tingling or pins and needles. They may even cause spontaneous crying, vomiting, or difficulty swallowing ..tightness in throat.

I must say that this is the form most often encountered by me in my patients. however, i now know that I failed at times to treat the underlying cause. I recall a sweet older patient who began having ‘on’ and ‘off’ periods would over dose on Sinemet each time she had an ‘off’ period due to the severe anxiety only to aggravate her dyskenisias. Not really understanding that what she needed was more dopa medication more evenly spread out to stop the ‘off and assuming this was  unrelated to her dopamine levels I prescribed Ativan ( anti-anxiety medication) but quickly she began popping these pills like candy in some ways making her anxiety worse by severely compromising her respiration.  Until I had this similar problem several months ago, I did not fully comprehend the severity of the problem, the incredibly overwhelming feeling of lack of control and feeling of being consumed by this emotion as well. I understand how people that take drugs are constantly after a next “fix.” You simply want to feel normal or at least that feeling of lack of control, and complete incapacitating nervousness to cease.

Since, I was placed on a much lower medication dosage than I was used to, the lower doses were not lasting as I was used to without feeling gaps. Now, I was experiencing on and off symptoms and found myself completely absorbed in my day to simply waiting for the next dose. This was completely foreign to me in the decade I have had pd I have never had to set my watch by my meds. Because I am well controlled and have several long acting meds, I don’t feel the gaps and certainly don’t go into panic mode if I am a bit late taking medicine or forget. I do however, get stiff, slower and stat having pain or visual problems if I forget completely. Yet, here I was like a drug addict counting hours and constantly looking at the clock to see if it was time to take my next pill. No way to live!

So, I decided to deal with the side effects of my meds from a different angle and stop this madness which lasted less than two weeks but felt like an eternity. I restarted my medications at previous doses and voila! No more anxiety. I could breath again normally and actually be productive once more. This of course, thought me a huge lesson, realizing that in my practice as well as many patients out there that complain of anxiety or difficulty breathing are actually undermedicated. They don’t need anti anxiety meds they simply need higher doses of dopa that is continuous and not fluctuating.

This is because the symptoms are extensive and can mimic many other illnesses including, thyroid disease, low blood sugar, heart attack, and asthma doctors may want to do other tests to rule out these more serious and potentially lethal diseases. However, the best way to properly diagnose and get the right treatment is to maintain a diary.

  • When symptoms start?
  • Are they Daily?
  • How long they last?
  • Do they occur multiple times a day ?
  • Are they following or preceding  medication intake? Food in take ?
  • Activity bring on?

Treatments:

Once source correctly identified a new regimen can be implemented. In most cases of anxiety in people with Parkinson’s are due to under medication in my experience – thus the solution is to increase levels of L- dopa either more frequent dosing, larger doses or both.

However, once all other possible causes are ruled out and not improving with higher dopa levels, anti -anxiety meds in the benzodiazepine class are implemented (e.g. Ativan or klonopin).  Also Ssri’s  anti-depressants like lexapro, Zoloft, or SnRI’s such as Effexor, Cymbalta, or Remeron can be prescribed. Even behavioral therapy might be considered if symptoms are not subsiding along with  antipsychotics preferably those like  Seroquel, Clozaril maybe given without worsening PD;  perhaps  even the new drug Nuplazid could be instituted although no data available at present time.

Don’t suffer in silence get help if you are having anxiety particularly if altering your life style or causing severe physical and emotional impediments. fortunately, I am back to myself not looking at watch every 5 minutes waiting to take next dose…so that I could regain some temporary sanity.

More info:

http://www.pdf.org/anxiety

 

Learning to heed our Bodies’ 10 Most Common Warning Signs- Pointing to Poorly controlled PD state: By Dr. De Leon

I have discovered over the years that a lot of us, like me, at times don’t pay close attention to what our bodies are telling us until it is blaring WARNING, WARNING, WARNING! Unfortunately, by the time it is so obvious something is wrong it may be too late. Because of many factors including personal responsibilities, we often tend to push through the pain, the discomfort, the malaise, the fatigue, as well as both physical and mental exhaustion thinking at times erroneously that we are stronger than our present discomforts. We quickly revert to rationalizing and minimizing present problems, convincing ourselves that if we muster enough will power and repeat the mantra “mind over matter,” we will be able to overcome any type of adversity physical or otherwise.

However, I have learned that avoiding or ignoring our instincts for self-preservation, more often than not, leads only to trouble as well as injury in the long run. I have been guilt of this many times. We don’t know how to say no to things that will cause us more harm than good some times because we are busy trying to prove how strong and independent we are. We have not learned to prioritize or to value ourselves above others. We have the impression that in so doing we might appear selfish, weak, needy, dependent, or that we have thrown in the towel and succumbed to our illness.

However, nothing could be further from the truth. I have been on both sides of the equation pushing myself trying to convince myself that PD does not permeate in many aspects of my life, as it does from time to time rather that I am still “healthy” and capable of willing my body to behave even when it does not feel like getting in line with the program. The outcome has been much more detrimental for failing to gauge my own limitations and heed the warnings along the road. Subsequently, I have in the past fallen many a times resulting in severely sprained ankles, bruised muscles and joints, as well as herniated discs. all because I ignored the signs and the soft voice telling me to STOP and take care of myself and the problem at hand which was anywhere from shoulder stiffness, knee and hip pain, trouble judging distances, mild shuffling, and soft voice with exertion to name a few. I have witnessed this same careless behavior in many of my patients and friends who have ended up being bed bound or hospitalized because they did not know how recognize or simply ignored the warning signs the body was sending to take note and make adjustments.

Over the years as my Parkinson’s has progressed, I have noticed my stamina and multitasking abilities to wane much quicker than previously requiring me to take larger doses if I am to stay engaged for longer than 3 hours. Whether it be physical, emotional or intellectual functioning if I don’t allow myself to rest along with an increase in levodopa, the consequences can be pretty dramatic like being so fatigued I can collapse. A few minutes of rest goes a long way sometimes much better than actually increasing dosages.

One of the biggest problems we, especially those of us with young onset PD and those of us with advanced disease, is the recurrence of pain. We have found that pain is one of the tall tale signs that PD is NOT controlled. Moreover this common recurrent symptom is of great concern to me as a doctor and woman with PD because of recent findings which suggest that women over the last 2-3 decades have experienced more deaths from pain prescription ‘non-intentional’ overdose compared to men. This is because women are diagnosed more frequently with pain (chronic) but in my experience is much more severe as well because have waited a long time to seek help. Furthermore, as we have learned over last few years is that us women with PD have greater number of negative symptoms such as depression and anxiety at its core just like other chronic disease such as MS, Migraines, and Lupus (SLE) to name but a few.

I have also talked in the past about the fact that women metabolize drugs differently and have more side effects to same dosages compared to men. Yet, the memo has not reached everyone in the medical field because most doctors (pain specialists particularly) continue to prescribe pain medications at higher doses than those prescribed to the male counterparts and used for a much longer time. One way of breaking this vicious cycle of dependence and abuse which is also putting us women at higher risk for overdosing but having greater chance for interaction with our other PD medicines leading to worse side effects such as hallucinations and delirium (confusion) throwing our PD control out the door. So, by recognizing pain early on and seeking immediate help, your neurologist/MDS will most likely be able to treat the problem without having to resort to heavy narcotics or use of pain specialist which often leads to pain meds which can be addicting and cause many cognitive problems as well, in light of our underlying PD. So let’s start by being proactive and recognizing our warning signs that we need to take it easy and nut put ourselves at greater risk of having pain.

Besides muscle Pain here are some of the more common warning signs-

One of the biggest warning signs that we are stressed or have poorly controlled PD symptoms is frequent tripping, and stumbling even if we don’t fall.

Treatment – increase PD medication dosages or frequency- But can not discard other reasons like B12 deficiency common in PD which can cause balance issues, -check b12 levels. Another reason may be difficulty seeing because of age and/or visual deficits caused by PD which can obscure objects and depth due to poor contrast visibility especially at night or low light- get prisms, walk in illuminated paths only and even terrains. Dystonia can also be a culprit either in feet or a lot of times in neck decreasing OUR RANGE OF MOTION AND LIMITING US FROM TRULY JUDGING DEPTH  because we don’t realize our heads are fixed when walking- Botox works great for torticollis (dystonia of neck). Finally, make sure you rest and take a break to avoid falls

Two- muscles cramping- This can be caused by multiple things from dehydration, to poor nutrition lacking potassium, or other  electrolyte abnormality such as low calcium as well as medical problems like thyroid and diabetes. (Need blood test to rule out these problems).These can be a side effect of medications such as Neupro patch when it wears off. Wearing inappropriate shoes like high heels or mules. cramps if sustained or prolonged can also be an early sign of dystonia.

Treatment – hydration, increased Medications like muscle relaxants, Botox, and dopamine. increase dietary intake of minerals like avocadoes, strawberries, popcorn etc. May want to look at some of my previous blogs on sources of different electrolytes. Make sure you wear proper fitting shoes with support & don’t walk bear footed or use flip-flops. May need custom braces along with Physical therapy and regular massages.

Three-night sweats– medications are usually the culprit in this case ( levodopa, amantadine as well as some antidepressants and blood pressure medications can cause these problems) along with other medical conditions like menopause, diabetes, thyroid disease and infections (but the latter usually have chills and fevers).

Treatment discuss medications with your physician and rule out other medical conditions. keep track of and time when sweats occur in relation to food and medication intake.Keep room temperature lower and /or use fans plus use moisture wicking sleepwear and sheets. I like things that are made of bamboo although expensive well worth the $$ since comfortable, breathable and best of all odor deterrent because a lot of the materials used in exercise wear absorb odors which are difficult to eliminate even after several washes.

Four– Abdominal pain- can be anywhere from constipation, excess gas, reflux and stomach ulcers and polyps to severe bowel blockage, twisting of bowels, and stool impaction.

Treatment– must have a bowel movement daily- use fiber, stool softener, miralax, amatiza or linzess. use of probiotics is controversial but consider taking yogurt a few times a week and if take probiotics alternate brands so as to not develop over colonization of one particular stand of bacteria which may prove more harmful for your constitution. See a gi specialist. exercise and drink plenty of fluids, if pain severe or positional seek immediate attention or if not had bowel movement in more than 2-3 days especially if taking laxatives or stool softener. Treat with antibiotics if have H. pylori and proton pump (Dexilant, Nexium, etc.) blockers if reflux.

Five- hurting jaw, popping jaw, dystonia of face. Cracking joints- joint pain especially in hands shoulder or hip can be part of PD but can also be arthritis

Treatment – Botox, anti-inflammatories, massage jaw and facial massage, increased dopamine, rule out arthritis, temporal mandibular Joint pain /disease and temporal arteritis- may need blood work, Sed rate (ESR) checked and even biopsy of temporal artery. if trigeminal neuralgia ( nerve pain of face ) treated with seizure medications and Botox.

Six– Weight gain. May be both a sign of under medication, too much stress, too much hormones-i.e. cortisol, and /or not sleeping well

Treatment-rule out sleep apnea, evaluate medications, check for thyroid and diabetes, and evaluate hormone level especially in women, treat with sleep aids if necessary or apnea with cpap/bipap. treat underlying cause.

Seven- itchy skin- not uncommon in PD

Treatment- seek dermatologist if continues but make sure liver and kidneys are working well because one of the first signs of  organ failure in liver and kidney is itchy skin from toxins spilling over. since we all take beaucoup amounts of medications we are more likely to develop fatty liver and liver disease especially if taking certain medications like antidepressants which can elevate liver enzymes. Further many of the dopamine agonists as well as the  Mao inhibitors  can cause kidney problems hence the edema  and increased blood pressure many of us experience. seek help from specialists like nephrologist gi doctor and neurologists.  Moisturize and hydrate all the time- drink lots and lots of water to flush out system and also to prevent dry scaly skin. may need treatment with prescription medication for skin.

Eight– chest pain can also be seen as a cause of poorly controlled Parkinson’s symptoms.

Treatment-can be as simple as heart burn, reflux which can be treated with meds as discussed above but more seriously need to rule out heart disease. some atypical Parkinson’s plus syndromes like MSA types can have more autoimmune dysfunction causing arrhythmias which can cause Chest pain. Plus some of the dopamine agonists, Mao inhibitors and levodopa formulations can cause chest pain as a side effect directly or indirectly by causing critically elevated high blood pressure. If having chest pain, seek immediate attention – may need cardiac work -up by a cardiologists as well as adjustment of PD meds and heart medications if required.

Nine- shortness of breath- Although asthmatics are more prone to have PD, I believe that PD patients can develop asthma more frequently.

Treatment- seek immediate attention, treat for asthma as well as heart disease, most likely require PD medication adjustment. can also be a sign of anxiety and wearing off which will require antianxiety meds and rescue meds like apokyn.

Ten – increased fatigue can be commonly seen in PD patients and due to a whole host of issues from vitamin deficiency both B and D, to poor sleep, asthma, heart disease, depression, constipation, and everything in between.

Treatment-it depends on underlying cause- sometimes is just another symptom of pd letting us know we are not well controlled requiring higher dosages of dopamine and sometimes use of amantadine can improve fatigue if purely caused by PD alone.

In the end, we must learn to, listen to our bodies…take breaks exercise and implement Resting times throughout the day at least 15 -30 minutes a day.

A Healthier you begins with 3 steps:

  • Self -awareness – First identify problem and be proactive about it don’t ignore!!!
  • Say no to things which exacerbate the symptoms and cause you to fell bad or lead to poorly controlled PD symptoms
  • Find support –always ask for help if not feeling well and have lists ready which can be easily accessed mentally with things you need help with. and don’t push your self to do things that you know are not good for you in the long run! 

Remember, you can’t take care of others or continue being independent if you are not well first.

HAPPY THANKSGIVING EVERYONE!!!!

 

 

 

 

 

Dealing with off Periods: HOT Topic @WPC 2016 -By Dr. De Leon

“The purpose of art is washing the dust of daily life off our souls.”~ Pablo Picasso

 

One of the hot topics to be covered next week at world Parkinson’s congress 2016 at Portland Oregon is that of dealing with motor fluctuations. I am very sad that I won’t be able to meet so many of you for the first time as well as looking forward to seeing again many of you whom I have a personal friendship thanks to PD. However, if you look closely, you might find my spirit permeating throughout portions of the congress since I have been involved in several committees especially those relating to the Spanish subcommittees.

In the meantime, as a member of the science subcommittee of the WPC, I will try to discuss with you before and after some of the topics of interest for this meeting.

Those of you who have lived with PD in your lives know from experience that treating the disease in its early stages is rather simple, once of course diagnosis has been ascertained and assuming that you tolerate medications. This is because at that stage, the brain is naive and exquisitely sensitive to replacement of dopamine in any form or dose. The reason being that our brains are still producing it (dopamine ~50-80%) just needs an extra kick start. So in essence a little goes a long way. Even a single dose of an agonist, MAO Inhibitor (e.g. Azilect), and especially levodopa can last for several days at a time. But, as the disease advances there is greater loss of dopamine producing neurons requiring greater amount of replacement and support from other chemicals in the brain. These other neurochemicals in turn begin to also become affected as dopamine levels decline in an attempt to maintain chemical equilibrium within the brain.

Unfortunately, many of us as well as many physicians believe erroneously that if a little is good more is BETTER. This could not be further from the truth. Yes, in some ways we do need increase amounts to function properly especially cognitively but if we flood our system with dopamine (levodopa) akin to trying to maintain our body’s energy levels with pure sugar- it will eventually CRASH. Yes, dopamine intake like sugar consumption will act quickly and give needed energy instantaneously. However, physically and mentally you will eventually burn out because our body’s needs cannot be sustained on sugars alone. Our systems need fats and proteins to provide us with necessary nutrients and energy storage to use for periods of intense activity, and stress. Our brains also need other neurochemicals like serotonin, acetylcholine, and glutamate among others to thrive.

Therefore, it becomes a matter of art and experience as much as it is a science to begin dealing and attempting to rectify anyone person’s off periods and fluctuations. Of course we must keep in mind that the challenge is greater for those treating disease since every one of us is unique, as Parkinson’s disease is not a homogeneous entity.

Nevertheless, there are certain general rules which apply. I will delineated here for your review.

First, in order to decrease off times and prolong effect of medication it is best to employ a polypharmacy approach- this is about one of the few times I would agree with this as a physician. Typically, in medicine the fewer drugs the better patients perform in regards to side effects, compliance, and complications. However, in order to maintain equilibrium in our brain this is essential from the start. I would definitely recommend introducing a small dose of levodopa at beginning of diagnosis.

Reasons: it helps confirm diagnosis with positive response. I firmly believe it can be neuroprotective according to some early studies on the subject.

Yet, I would not leave alone for long period of time ( >6 months) before adding another class and continue to add various classes as disease advances because the combination serves to potentiate effect of  each medication simultaneously. Furthermore, this strategy also ensures a decrease risk of developing dyskenesias because although you are technically increasing levels of levodopa you are not saturating one single receptor (dopamine) so there will be no need for up regulation (more receptors created). The latter results in faster wearing off because you are reaching threshold sooner and overwhelming system each time.it is sort of like trying to treat gastric reflux, you eat more frequent meals to avoid the burning but each time you eat you are stimulating the production of acid which only makes the problem worst.

As disease advances, it will become necessary to add and increase doses of levodopa but still can decrease incidence of fluctuations by adding medications like Comtan, Tasmar to levodopa and/ or different formulations of levodopa such as extended release (CR), intermediate release ( Rytary), fast absorption (Parcopa), Stalevo (sinemet +comtan). Plus, you Do Not have to stay with only one (single) formulation; in my experience as physician and patient it is actually best if you have varying formulations. Soon hope to have a couple of more formulations of levodopa like inhaled formulation.

Second, remember that all medications like agonist and amantadine can have an effect for up to 10 years then become less efficacious but after a withdrawal period of 6 months to a-year they can again be of service and function at maximum capacity (sometimes people wear off because medications have been stretched further than usually efficacious). Also just because you did not tolerate a particular formulation due to nausea, other Gi problems, or even low blood pressure they can still be reintroduced because our bodies change as we age. Sometimes we need our blood pressures (bp) to be lower because although low hood pressure is a more common effect a lot of people with PD, such as myself) have severe hypertension with levodopa and agonists.

Third, one of the considerations for treatment of off times is of course DBS- deep brain stimulation, but also adding medications such as amantadine, switching or adding a long acting dopamine agonist like Neupro patch, adding Zonegran, or Apomorphine sq, soon will have oral disentigrating formulation of apomorphine which is currently in trials at various institutes including BCM. Addition of Comtan or Tasmar may also be indicated at this time as well as change to various formulations (of release) of levodopa if not done already.

Fourth, Keep diary of times and dosages of medication, as well as when off periods occur. Important to note if this occurs at Peak dose or end of dose? Is it predictable or unpredictable?

  • If peak dose – may need to lower dose (say from 25/100 to ½ tab of 25/100) and perhaps take more frequently (usually at lower doses)
  • If end of dose require medication intake more frequently this can be accomplished by adding extended formulations such as CR, and/or Stalevo or taking more frequently

Finally, remember not to overlook simple and crucial factors for having fluctuations and off periods such as diet intake of protein (IT ONLY REALLY MATTERS IN ADVANCED DISEASE). This does not mean stop all protein intake – you will regret. Means take it an hour before meds or two after. However, the biggest problem with diet is now so much what we eat but when we eat. Small frequent meals are better and never later than 6 pm to improve digestion because the REAL culprit more often than not is constipation and poor motility and malabsorption. So making sure you are voiding every day or at most every other day is imperative for good health of gi-tract and good consistent absorption of medications. This includes exercise, drink lots of water and eat lots of fruit along with probiotics.

Best of luck for those traveling to Portland. Stay happy and healthy.Image result for yo-yo

 

Signs that your body is in trouble – especially in midst of living with PD: By Dr. De Leon

There are many subtle ways that our bodies tell us that something is not right. The body is a perfect organism always in balance. Have you suddenly had a craving for something sweet, sour or salty? I have – and is not just pregnant women that have cravings. Funny thing when I was pregnant I had only cravings for fruits. Then when I began to have cramps and pain, oh boy was I craving sour and salty things. All my pickles were dry in the refrigerator and even margaritas sounded delicious because of the ice, salt and lemon. Once my cramps got treated I had no more need for dill pickles at the movie theater.
One must learn to listen to our bodies and take note of the subtleties because they can be screaming at the top of their lungs for us to take heed and correct what is gone amiss.

When one lives with Parkinson’s disease, not only are we not immune to other illness, as I mentioned before according to a study only about 22% of patients with Parkinson’s have that as their only illness, Plus, Parkinson’s is a systemic disease which affects almost every major organ system. Thus, we need to be Elle to recognize silent or subtle symptoms to avoid further heartache.

We know that the gi system is one of the most commonly involved in Parkinson’s disease. Common symptoms can vary from constipation, paralysis or parestesis of the gut including reflux caused by both medications and disease itself. One of the common signs of having reflux is frequent coughing, unexplained wheezing and sometimes chocking a few minutes after finishing a meal or eating snacks. Sometimes only symptom of gi symptoms and severe reflux is not heartburn or pain but foul mouth smell/taste (halitosis) or wearing out of enamel of back of mouth. Untreated reflux can not only lead to tooth decay, motor fluctuations of Parkinson’s as well as esophageal cancer. Remember of the causes is H. Pylori

As I said previously one of the most common causes of pain and cramping in people with Parkinson’s is due to electrolyte imbalance brought on by repeated laxative use to relieve chronic constipation. Signs that you have electrolyte imbalances  is what I mentioned earlier cravings for sour and salty things – a good fix is a spoonful of mustard and going to see doctor about electrolyte imbalance, potassium, magnesium and calcium.

Some of us who have LRRk2 gene as a cause of our Parkinson’s, are also at risk of developing another autoimmune or inflammatory diseases. One of the common autoimmune diseases who are a frequent comorbidity with PD is inflammatory bowel disease (both ulcerative colitis and Chron’s disease). One of the subtle ways a recurrence of Chron’s disease is the presence of pseudo -hemorrhoids. Of course you may think we’ll I have chronic constipation so it’s not surprising. You should always should check with your doctor and visit a gi specialists. Chron’s can affect the anal area in the form of fleshy growths which may mimic hemorrhoids. This type of Chron’s is extremely painful and Has a worse prognosis especially if left untreated causing bowel obstruction, anal fissures, and even cancer of the colon. So make sure that one of your team players in the fight against PD includes a gi doctor whom I recommend seeing at least twice a year or more frequently if having other problems. And especially if already have a history of inflammatory bowel disease.

Another frequent not so subtle problem that indicates something might be wrong is change in bladder habit. In men with Parkinson’s especially those who take or have taken Stalevo for while are at a higher risk of developing prostate cancer. So if your stream changes or are making more frequent trips to the ‘john’ don’t assume is just age or PD; get in checked out. Another common cause of increase frequency and urgency is Diabetes which  usually results in increase trips as well as increase amounts of urine (frothy) due to body’s attempt to rid of excess sugar. A big sign is increased thirst which sometimes can be confused by the fact that so many PD meds also cause dry mouth but we must look out for changes especially when no new meds are added into the mix. another sign could be increase frequency at night, although it could be that you need a booster dose at bedtime or even a sign that we are simply getting older- if you experience this as a new or worsening symptom consider talking to your doctor ASAP. The best way to check is to get a HgA1C which measures your  blood sugar levels over a period of 3 months. this is extremely important because there is some evidence as I posted before that excess dopamine can lead to insulin resistant condition and hence diabetes. Finally, I  can’t discard the increase risk of urinary infection triggered by both bladder malfunction and medication effect. Two good meds which help with symptoms of urgency and frequency are phenazopyridine and UTA. The former turns urine dark yellow and the latter turns it slightly bluish hue.

You are here... ...Run!!!

You are here… …Run!!!