Three things I wish someone had told me about PD : By Dr. De Leon

Not only is there still much to be learned about this extremely complex disease, as I mentioned in my article “What is wrong with me?” But, despite all the advances in the field there continues to be a great deal of speculation regarding life with Parkinson’s after the diagnosis. Today, I am exposing some of the truths you wish you had been told:

      1. It is difficult to maintain a traditional job once diagnosed with PD.

I realized that the old way of doing things was no longer going to work. This meant that my traditional job as a doctor was no longer going to fly simply because the level of mental acuity required would consume my dopamine stores faster than I could replenish them. Since it is difficult to maintain employment once diagnosed consider options such as a different venue/vocational rehabilitation. PD patients have been shown to perform well in creative roles, and doing repetitive tasks. Perhaps the new job lies in the use of the new found talent such as being an artist, photographer, writer.  But, most importantly need to start financial planning, including disability documentation if young onset and execution of will for long term care.

       2. It truly takes a village to care for a Parkinson’s patient.

Since Parkinson’s affects all of our insides, feelings and all, as well as our outside; living with PD while raising children, having a family, running a household, holding a job, and maintaining personal and interpersonal relationships is extremely difficult. Especially, as disease progresses you simply cannot go at it alone! You need others to help pick up the slack. Part of this network of support should include close friends, relatives, social workers, and PD support groups. Spread the wealth if you will with those willing to help out to avoid burn out in those closest to you like spouses.

     3. Prevention rather than reaction to symptoms is the key for a better quality of life with PD.

Intuitively, I surmised from treating my patients that indeed “an ounce of prevention is worth a pound of cure.” Yet, it took me a few years of living with PD myself before I fully comprehended the full ramifications of a proactive treatment for PD. As in the treatment of cancer patients, we first want the remaining dopamine cells to work more efficiently, and keep other cells from dying off. Hence, a cocktail of medicines works best. This treatment is maximized with constant surveillance for signs of new symptoms before problems arise. This requires a team of multidisciplinary experts including PT, OT, and ST. Remember the brain function’s like a see-saw, if you add too much of one thing on one side you are bound to get off kilter and go flying up in the air unwillingly and bounce back when that substance starts to wane.

WHAT are the things you WISH you had KNOWN in advance about living with PD?

Feel free to share.

#1 Cause of Cramping Toes & Legs In PD- By Dr. De Leon

“These cramps are crazy! But look on the bright side- at least is not a baby!” -unknown

 

In the past, I have written about the different causes of leg and toe cramping in Parkinson’s disease. However, the number one cause of cramping in those of us who have had Parkinson’s disease for many years is actually a metabolic cause indirectly related to PD Symptoms. What I mean is that we all have one singular symptom in common which is extremely trouble some for all of us despite our PD presentation. This horrible symptom which makes all of our lives particularly troublesome and even causes us to become moody, forgetful, and lethargic is no other than my friend and your friend-CONSTIPATION! Unfortunately, this is one of those symptoms that just wont go away! It often precedes the motor symptoms by up to 20 years and as the PD progresses not only does Gi motility slow down to a near halt due to PD but the medicines themselves are against us from the start.

So, how do we combat this pesky problem? throwing everything but the sink into our bodies sometimes just to be able to have a bowel movement. The thing we all forget is that with time the constant sloughing off the lining of the intestines by laxatives – especially those over the counter can cause severe Hypokalemia (low potassium) because it alters the function of the kidneys permanently!

To make matters worst, as we age many of us become hypertensive (high blood pressure) for which many receive treatment in the form of diuretics. This only compounds the problem and increases risk for cramps. Also, many of the medicines cause increase fluid retention again necessitating a type of diuretic.

 Therefore, I suggest that :

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1) Do not take laxatives on a daily basis – this only causes the body to become dependent and work even less unless higher amount (dosages) of laxatives are  consumed. I will suggest a cocktail solution for this which includes high water intake, increase natural juices, increase daily fiber in food and as supplement through over the counter fiber tablets, powder etc. increase exercise, increase vegetable and fruit intake along with stool softener. Then few times a week take prescription meds like lactulose, Miralax, Amitiza, or Linzess.

2) However, if above still not producing the desired effect – use over the counter laxatives –SPARINGLY! always alternate types such as enemas, mag citrate or other oral laxative brands-e.g. Ex-lax, Dulcolax… 

3) Have your doctor write you a prescription for potassium supplement 20mEq. EVERY TIME you take a laxative make it a point of taking a Potassium supplement pill along with it. Also increase consumption of potassium rich foods like white beans, lentil, raisins, pistachios, soy bean, avocados, and cocoa bean (my favorite)..

4) Have your doctor monitor your potassium routinely if staying low may need to be on a daily potassium supplement!

5) If possible avoid diuretics – try using naturally occurring diuretics like cucumbers, watermelon, tomatoes, green tea, asparagus, cranberries, and oats. This will also help to maintain regularity.

6) If you Must be on a diuretic if possible try potassium sparing medications -NOT LASIX.

7) Finally, if you do experience cramps quick remedy is a spoonful of mustard (keep packets handy especially when traveling) & drinking pickle juice- best when cold! If you are experiencing cramps multiple times a week and the other causes of pain and cramp have been ruled out then need to take daily potassium supplement and take extra dose when use laxatives!

References: (see prior blogs)

How to Deal with the 6 Common Causes of Leg pain in PD?

Tips to dealing with cramping toes

@copyright 2015 all rights reserved Maria De Leon

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:

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!!

Tips to dealing with Apathy : by Dr. De Leon

Scientists announced today that they have discovered a cure for apathy. However, they claim that no one has shown the slightest interest in it.” ~ George Carlin

I hear the word apathy tossed around all over the place from different places and people who use this term loosely to imply “lack of interest,” or ‘deep depression.’

However, as a neurologist the word apathy has not only a very special meaning but it also carries with it a specific diagnosis.

So, what does apathy really mean. Apathy as described by the Webster dictionary as  “a state of perfunctoriness.” I love that word.  It is a state of complete and total indifference in all realms of our being, emotional, spiritual, and social. People who suffer from apathy are completely and utterly devoid of concern, emotions, and feelings. Not because they don’t want to but because they are incapable of caring due to disconnect of fronto-cortical pathways.

Therefore, the term “apathy”  in neurology is always a harbinger of  brain illness particularly organic etiologies such as head injury, strokes, tumors, schizophrenia (although the latter usually considered a mental illness -I maintain it is an organic neurological disease because of involvement of dopamine- in this case too much) and of course the number one cause and almost synonymous with term of apathy is dementia – (e.g. Alzheimer’s, Parkinson’s, vascular, Lewy body, fronto temporal, etc.)

Therefore, giving someone a diagnosis of apathy in of itself is a poor prognosis which implies typically a rapid cognitive decline.

Having said this, one must always identify the cause and try to treat it as best as possible and prevent further cognitive decline.

Medications employed in the treatment of apathy:

1) [of course are] medications used to treat dementia – i.e the acetylcholinesterase inhibitors like Exelon (Rivastigmine), Aricept (Donezepil), Razadyne (Galantimine), and Namenda (Memantine) an NMDA inhibitor. Several of these compounds have extended release doses and come either in patch or liquid as well or both.

Other medications include:

2) Dopamine replacement– no better feel good drug than dopamine especially if deficiency is what is causing the apathy but it is not always as easy as that in dementia patients particularly those who have dementia of Parkinson’s disease or other dementias associated with parkinsonism because the addition of dopamine will increase visual hallucinations and other hallucinations and worsen confusion. therefore, this has to be measured in scale of risk and benefits but usually in the majority of cases in PD associated apathy combined with other medications like antichlolinerasterase and antipsychotics.

3) Stimulants like Provigil (Modafinil)/ Nuvigil – used in the treatment of Narcolepsy but also for hypersomnolance or increased sleepiness.  I prefer  this class as first line of treatment over amphetamines after dopamine replacement.  In my practice, I  had a moderate  to great success with them.  Other stimulants include amphetamine derivatives such as those employed in the treatment of attention deficit disorder (Methylphenidate-e.g. Concerta, Ritalin; Aderall; Straterra).

4) Antipsychotics are also a good source to combat apathy but best if use atypical drugs like Clozaril or Seroquel because of decrease potential for extrapyramidal side effects like tardive (late onset) dyskinesias and parkinsonism. This is especially crucial if already dealing with apathy related to Parkinson’s or Parkinson’s plus syndrome. We don’t want to make motor symptoms worse resulting in freezing and falls or increase dyskenesias.

5) Anti -depressantsSsri’s/SNri’s -E.g. Zoloft, Lexapro, Effexor, Cymbalta, etc.

6) ECT– electro convulsive therapy when all else fails -it works tremendously well despite all of the bad the media has given it based on past history and  portrayal of patient abuse in movies like One Flew Over the Cuckoo’s Nest. Currently, there are several state of the art centers in the country which provide these much needed services which can help patients  have a higher quality of life than the would otherwise -one may be near you. The alternative is earlier institutionalization.

As always early recognition of apathy is Key to improved quality of life by securing proper diagnosis followed by prolonged watchful supervision and treatment by a team of experts which include Neurologist, Neuropsychologist, counselors, social workers, therapist and loved ones to help with financial issues of caring for a chronically ill patient as well as help prolong nursing home admittance for as long as possible.