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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.

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Parkinson's Health, Parkinsons disease, parkinsons symptoms, parkinsons treatments

How to Deal with the 6 Common Causes of Leg pain in PD? : By Dr. De Leon

One of the biggest complaints I hear from people in PD support groups is a continuous relentless severe leg pain. Prior to a decade ago, I as all my fellow movement disorder specialist would have not thought leg pain to be a direct precursor of PD or an initial non-motor symptom. My grandmother often complained of pain and deep aches in her calves and in her legs which started before her tremors and shuffling were noticeable. But, I was unaware of the connection at the time and erroneously assumed her pain was neuropathic in nature due to her diabetes but was always somewhat surprised that she continue to complain of this pain on and off throughout her illness despite neuropathic medication. With hind sight what she was experiencing was central pain of PD. I too had severe pain first in one leg then the other which would come on suddenly without warning stopping me in my tracks throughout the day. I was constantly asking my husband to massage my legs just as my grandmother had asked of us time and time again.

So why do we have leg pain in PD and what can we do to relieve the discomfort?

First, some believe that lower limb pain is a specific non-motor phenotype variant of central pain in Parkinson’s disease. I, too, believe this; more importantly it can be one of the very first signs of PD as it was for me. This pain is usually bilateral.

Second, leg pain can also occur secondary to dystonia as an initial symptom or as a consequence of long term levodopa use (most common). When related to levodopa it usually occurs as a wearing off but can also occur at peak dose. In most cases this leg pain is unilateral and has direct correlation to medication intake.  When is due to dystonia pain is more common in early morning. This type of leg pain is usually accompanied by toes curling and foot abnormally posturing. dystonia in feet

Third, musculoskeletal pain due to rigidity, abnormal posturing and lack of mobility affects legs commonly causing pain in the legs, however this pain is usually more pronounced on the more affected side.

Fourth, pain in legs can also be caused by radiculopathy; nerves can become trapped or temporarily pinged in the spine or as they exit the spinal canal due to stiffness/rigidity of the muscles which exert an abnormal lordotic (curvature) of spine. Once again, this type of pain is usually confined to only on one side of the body and is positional meaning it is worst with standing and sitting and relieved by laying down. Pain usually radiates from back or hip down to leg and can also get worst with coughing or straining.

Fifth, pain in legs can also be due to medication effects or withdrawal from certain types of medicines like NEUPRO. In the latter, the pain which can be in both legs is more cramping.

Sixth, Let’s us not forget that we do not live in a vacuum and that just because we have PD does not make us immune to other common diseases such as peripheral vascular disease (PAD). Men are more likely to have this but women are not exempt. Risk factors include diabetes (remember PD may increase this risk), high blood pressure (again some PD meds may increase this risk), heart disease, high cholesterol, smoking, stroke, kidney disease.

The symptoms of this are:

– walking fast or uphill or for long periods to point of hurting immediately when walking

-Feet and legs feel numb at rest and skin is pale and cool to touch

Symptoms are worse with elevating legs and better with dangling over the bed.

Sometimes pain in legs can be a combination of all of the above.

Pain can be the most disability of all PD features interfering with all activities of living. Despite this fact it is often under treated and frequently overlooked. Any pain in PD should be promptly and effectively treated especially that of leg pain before the pain becomes chronic and your brain reorganizes itself completely to be able to handle the pain. I feel terrible because I did not fully understand the phenomena of central pain in PD at the time of caring for my grandmother. Fortunately, with adjustment of her levodopa meds her pain subsided for the most part. As I said before we have come a long way in understanding pain in PD, so there should be no reason why anyone should be subjected to dealing with pain on a daily basis when we have so many treatment options.


Treatments therefore depend on properly identifying the source of pain.

  • If bilateral always assume it is central pain- pain due to PD and treat accordingly. As I mentioned many times before, Azilect works great for this type of pain.
  • Massage therapy works for all types of leg pain-my favorite.
  • If having pain due to dystonia first find out if occurring at end of dose or at peak dose so meds can be adjusted. If medication adjustment don’t work consider DBS. Pain due to dystonia also responds well to Botox, Myobloc, or Dysport injections, baclofen, Dantrolene, and Klonopin work well alone or in combination with other treatment modalities. Physical therapy (PT) can go a long way to alleviating pain of this type.
  •   If having radicular pain try trigger point injections, epidurals, nerve block, surgery, DBS (deep brain stimulator) for pain in the spine, Botox, Lidoderm patches, muscle relaxants, anti-inflammatories and steroids and PT.
  • To avoid and alleviate pain caused by stiff muscles the best treatment is activity in the form of stretching exercises- any number of activities will do such as walking, tai-chi, water aerobics, swimming, dancing, bicycling, yoga; of course if needed can use a Tylenol plus a Motrin or Advil as needed. Sometimes may need to up levodopa if stiffness is persisting or add a centrally acting muscle relaxant like baclofen or Neurontin.
  • To avoid cramps stay well hydrated. Make sure your patches don’t fall off! Eat food high in potassium like avocados, bananas, and strawberries. When cramp hits quick remedy spoonful of mustard with warm water or take some pickle juice.
  • If you have symptoms of PAD or suspect consult your physician immediately this can be a life threatening problem!!
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I am Dizzy! Is It My Parkinson’s? : By Dr. De Leon


First, in order for you to get the proper treatment you must be able to communicate to your doctor exactly what you are feeling.

The way you do this is by learning the right terminology or the doctor “lingo” if you will.

Some people say they are ‘dizzy’ to mean they have ‘vertigo,’ they are ‘unsteady’ in their feet, have a ‘swimming’ sensation in their head, are ‘off-balanced’ when they walk, confused, or they feel ‘lightheaded.’ All these words imply different things for us neurologists. Some can be life threatening while others can be more of a nuisance. Therefore, depending on the cause the treatment will be different.

Meaning of words to doctors/neurologists:

Vertigo– spinning or whirling sensation

Lightheaded – implies feeling of sinking or near fainting or passing out.

Dizziness –  synonymous with unsteadiness of gait.

Off-balance– usually implies problem with equilibrium like being drunk and falling.

Confusion- means disorientation/ inability to get one’s bearings.

Swimming sensation – sometimes implies fogginess of thought or more commonly is the catch word for BPPV (Benign Paroxysmal Positional Vertigo).

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If you are having Vertigo and it comes on suddenly and you are nauseated can walk or sit and throwing up could be ear related or could be in your brain but if you have weakness, numbness, in -coordination in arms, slurring of speech, double vision then is most likely a stroke. If have latter go to ER ASAP. The former call ENT ASAP or go to ER ASAP. This is not caused by PD.

Lightheadedness- this is the most common side effect after nausea with dopamine and dopamine agonists because they tend to lower blood pressure. So you feel like you are going to pass out especially when you’re standing or arise from sitting or lying down quickly. This usually occurs within the time the medicine kicks in usually within 30 minutes to 1 ½.  One way to prevent this is to take medication on a full stomach- high protein. If taking Sinemet or one of its derivatives take lodosyn with it to decrease this side effect. Do not take at the same time as other medications with similar side effects or at same time as Blood pressure pills. Wait at least another. Your doctor can also prescribe medications like midrodine, florinef, salt tablets, or Northera. They may also recommend several maneuvers like wearing compression stockings, avoiding hot showers, drinking cold water during an episode and arising slowly from sitting or lying.

Off-balance- also common in Parkinson’s due to Parkinson’s itself but can be aggravated by B12 deficiency which causes loss of sensation in feet; if malnutrition exists other  neuropathies can occur from other vitamin deficiencies such as thiamine or vitamin B1. Plus don’t forget that PD does not exist in a vacuum so as we age we may develop neuropathies due to diabetes. Gait can also worsen due to poor eye sight and hearing. Regular check- ups with your primary care doctor as well as with ophthalmologists should help prevent these problems but more than anything doing regular exercises and physical and occupational therapy will prevent the great majority of these problems.


Confusion or fogginess can and is also a frequent PD symptom both as a side effect of medication as well as non-motor problem. Of course it can be cause by strokes if acute!!!

Medications can be adjusted to improve this.

Always call doctor ASAP if this occurs or go to the ER.

I hope this helps to guide you when having a ‘dizzy spell’ and think of when is occurring, onset, duration, activity bringing it on, daily? Is it sporadic? Is it positional? Are there other symptoms accompanying dizziness?

Not only will your doctor be impressed at your knowledge and for been able to advocate for yourself; but will be able to make the right diagnosis and recommendations a lot quicker so that you can get to feeling much better faster!

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Parkinson’s Disease: an Autoimmune DIsease? By Dr. De Leon


For some time me and others like myself have been toying with the idea could it be possible that Parkinson’s is yet another autoimmune disease like diabetes or thyroid disease or even pernicious anemia? Or even an inflammatory disorders like ulcerative colitis? Perhaps some genetic subtypes can more easily fall into this category than others. For instance, it is interesting that the majority of Parkinson’s Disease (PD) patients have B12 deficiency as a co morbidity. Or that the type of Gaucher patients that are most likely to develop and have an increase risk of developing PD are type I patients – those without central nervous system involvement.

Patients who posses Gaucher and are carriers of a GBA gene mutation have increased risk of developing Parkinson’s disease and parkinsonism. Gaucher patients carry a deficiency of the enzyme glucocerobrosidase.  This enzyme is typically acts on the glycolipid glucocerobroside. So, when the enzyme is defective, glucosylceramide aggregates and accumulates in white cells (which are responsible for mounting immune attack but particularly like to congregate in the macrophages. The macrophages are like “Pac Man” hungry white blood cells gobbling up invading bacteria. They are formed in response to an infection or accumulating damage or dead cells. Thus, they are unable to break down fatty acids and they have abnormal accumulation into the white cells and macrophages which are the ones responsible for being able to mount an appropriate immune response against a foreign attack like bacteria or virus. But, if these cells who are to destroy the offending viruses etc. are unable to take them up because already full with unwanted stored up material then more white cells, T cells and macrophages have to be created jamming up the system and thus indiscriminately attacking normal cells throughout the body and brain. Some evidence of this is present in the preliminary data in a study I am involved at the University Of Texas Houston Center. My friend and colleague has informed me that my blood levels of T cells and other inflammatory and immune markers have been measured and found to be elevated and have improved as my disease has been treated. Data hopefully will be released soon.(this is all preliminary and confidential).

The other subtype of PD which points to an inflammatory and autoimmune component is the LRRK2 gene phenotype. Many of these patients with this type of phenotype have a history of inflammatory bowel disease most often ulcerative colitis. Ulcerative colitis (UC) is another autoimmune disease characterized by T-cells infiltrating the colon. Although Crohn’s disease another inflammatory bowel disease which is much more extensive beyond the colon as compared to UC has also been seen in this group of PD patients, once again making a case for a possibility of our immune system going haywire and attacking the nervous system. In medicine, it is dogma to say that once a patient has one autoimmune disease they are at higher risk for contracting another and we frequently see this in our practices. But, until recently, no one had really dared to contradict the underlying notion that “neurons” were somehow protected from attacks from the immune system. Although, we have clear evidence of instances of where there is an autoimmune reaction in the central and peripheral nervous system after vaccine injections causing “Acute disseminated encephalomyelitis” and also MS but these have only targeted the connections not destroyed or actually damaged actual Neurons! Therefore, if it is true that Parkinson’s neuronal loss is a result of attack of the immune system itself it would revolutionize not only our thinking but our way of preventing and going after treatments for Parkinson’s.

So, recently researchers tested this hypothesis to see if indeed living neurons would display antigens (like bacteria or viruses) which then trigger an immune mediated response to neutralize this force. Drs. Sutzer and Cebrian from Columbia University used in vitro mouse and human neurons from embryonic stem cells. Their studies revealed that under certain circumstances- including those known to occur in PD. These neurons produced a special protein which presented an antigen which was recognized by the T cells and triggered an attack on these neurons. They prove an autoimmune process can happen and neurons can be attacked but is not known if this is the initial or final response or if all Parkinson’s is started this way or only those subtypes I alluded to previously. One thing is for sure future is bright and field is ripe for new and novel treatment options!

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Dr. M. De Leon is a movement disorder specialist on sabbatical, PPAC member and research advocate for PDF (Parkinson’s Disease Foundation); Texas State Assistant Director for PAN (Parkinson’s Action Network). You can learn more about her work at you can also learn more about Parkinson’s disease at or at;,

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