behavioral problems and treatments in PD, chronic illness, parkinson's disease, Parkinson's treatment

Anger in Parkinson’s Disease? myth, reality or cop- out? By Dr. De Leon

” Anger is an acid that can do more harm to the vessel in which is stored than to that into which is poured…”

 

I thought I would write today about a very sensitive topic for all of us especially for me as of late. it seems that my docile, kind, friendly disposition has been taken over by a “she- Tasmanian devil” I am ashamed to say. As I try to patch and mend the path of wrath I have left in the wake of my anger outbursts this week, I am doing a lot of soul searching as to the cause of this sudden behavior. Surely, I have always been high strong ( and head strong) and known to get heated a time of two but lately it seems this is the norm rather than the exception.  Of course I recall since the onset of my illness the increase proneness to irritability which improved and settled with starting treatment and as my disease has progressed I notice increased bouts of irritability with tapering levels of medication right before the next one is due. So is this a biochemical manifestation possibly. However, what I am talking about here is right out uncontrolled anger outburst set off by the mildest of provocations or difficult situations.

Anger is a real thing in those of us with neurological disease and merits proper attention and treatment!

As a Parkinson expert I know that men are more likely to behavioral outburst and anger which often were attributed to poor boundaries or coping skills or even onset of dementia. However, looking at my own situation I am neither unhappy, lack boundaries, nor am I getting demented yet; I feel at times as if my anger button is suddenly pushed by an invisible fiend -perhaps more prayer is required but what if medication is contributing to these outbursts? I know I should not be bad the situation does not call for such exaggerated response of fight or flight yet, I am like an evil queen ready to defend her throne to the death! perhaps it has to do with the amount of epinephrine in our bodies or perhaps more likely the disruption of the brainstem-basal ganglia pathways involving serotonin and dopamine. for you see, the metabolism, synthesis and uptake of both dopamine and serotonin are intertwined. Both neurotransmitters are both metabolized by MAO  enzymes. Also they sometimes compete for this enzyme. thus, when we create a dysregulation by blocking one or taking more of one than another we are disrupting this fine balance.

After all we take gobs of dopamine and block its degradation in every fashion and form so it must follow its normal path of synthesis- ultimately leading to excess epinephrine and disruption of serotonin, dopamine connections. we are learning that mood disorders are very complex and require treatment with various monoamines because dopamine is just as important as serotonin. Although low levels of  serotonin are the ones implicated in “anger outburst.” These anger outburst seem to be correlated with higher intake of dopamine since I have been writing I need extra dopamine. (losing hours of manuscript did not help situation, I might add). The consequences and side effects however, could be too high a price to pay to be able to function mentally for a few hours. I don’t like myself and feel bad when I get mad but seems I don’t have  power to stop is like a horse once release from its standing place in a race it must run its course no matter how hard I try to stop. These feelings if untreated can potentially cause a vicious down fall with feelings of remorse and shame leading to depression thus increasing likelihood of anger. I knew that my brain was out of sorts and have increased my serotonin producing meds and I have felt normal again.

I have read several blogs and post of people experiencing this same phenomena, which I believe in the past as caregivers and health providers have been too quick to dismiss. I know that dealing with dementia patients this is a common problem even in their lucid states. So, perhaps the microscopic and macroscopic changes occurring in our brains are sufficient enough to disinhibit us especially since part of our primitive brains (entorhinal cortex- including the limbic system, amygdala) involved in emotion are at the core of this disease. I don’t believe that we are angry because we have an illness although, there may be a few out there who could fit into this category. I, for one, have fully embraced my Parkinson’s and have thoroughly enjoyed making a new life. Thus, this theory does not make sense plus this is a sudden uncontrolled behavior. These events have made me recall my own patients, of course all those whom I could conjure up having similar outburst of anger were all men.

This fact however, does not preclude us women from experiencing similar phenomena. I myself was attacked by a PD patient when he suddenly became angry at my medical recommendations. He went from a docile sweet gentlemen to a fierce tiger in less than a second a similar thing happened to a friend who actually suffered grave bodily injuries as a result of such unprovoked attack. Then there is the saddest story of all, one who actually shot his wife in a moment of rage which immediately regretted and  was attributed to medications. This is because we are seriously disrupting this system- many speculate that this disruption is the cause for schizophrenia not just excess dopamine (which in effect is what we are producing in our bodies by replacing massive quantities of dopamine without considering other chemical imbalances caused by this). This disruption in brainstem basal ganglia as a cause of psychosis and out burst of anger are supported by new treatment of PD psychosis with drug Nuplazid (pimavanserin) which acts on the serotonergic system.

I want all my readers to realize that this is a neurological problem that stems from unbalanced chemicals in brain due to both illness and unfortunately to medication effect. As I have often said, the brain is not only a complex intricate organism but is in constant balance and altering one chemical will have many repercussions because of its intricate connections. Thus we can’t simply disregard these and act in a vacuum when treating the many symptoms of Parkinson’s and must always think of what could possibly be affected to try to maintain order. Most common causes of explosive anger is brain injury (trauma, stroke, tumors, encephalitis) or neurological neurodegenerative disease, Parkinson’s, Alzheimer’s, etc.

I know that this is particularly a HUGE problem with those who have end-stage PD especially those with dementia.

Symptoms of Anger /rage outbursts: out of proportion to situation!!!

Things to watch out for preceding aggression:

  • irritability
  • increased energy
  • racing thoughts palpitations
  • chest tightness
  • mad
  • increased tremors
  • tingling

(myself the night before or day of episodes felt almost manic, irritable upon awakening, out of sorts, with increased heightened awareness and energy and racing thoughts)

of course if you have any of these is a sign YOU are out of control and NEED HELP ASAP! if reason has left the building and consequences don’t matter….

  • physical fights
  • property damage
  • threatening or assaulting people/animals

 

Recommendations: Being aware there is a problem is the first step to healing

  1.  Seek professional health ASAP –
  2. Get evaluation for thyroid disorder, metabolic abnormalities and diabetes ( remember that increased dopamine can increase sugar levels)
  3. Get neuropsychological evaluation to rule out depression and underlying dementia
  4. adjustment of Parkinson’s medication
  5. Treatment with SSri’s ( purely serotonin) or preferably compound drugs like those which have SSri’s and NRi’s  ( serotonin plus norepinephrine) like Cymbalta and venlafaxine (Effexor).
  6. anticonvulsants  like Tegretol, Lamictal, etc.
  7. antipsychotics in some cases or Nuplazid if dementia present.
  8. Counseling individual and family
  9. (treatments if persistent behavior should be in tandem with psychotherapy and family therapy)
  10. work on relaxation techniques- since all of us with PD and other chronic neurological disease have trouble dealing with multiple stressors at a time and get easily overwhelmed and flustered- do as I am attempting to do- cognitive restructuring- train my brain not to get excited in face of critical situations just like when I was a doctor  in practice -YOU got THIS! if you lived as long as I have I am pretty sure you have gone through some very harry situations and come out ahead – use that imagery to handle these stressors.
  11. propranalol- sometimes can be used to help with symptoms ( the fact this works shows that there is an increased epinephrine component to anger outbursts).

I should try practicing what I preached a thousand times as a neurologist- when we avoid acting on impulse we are actually rewiring our brains to be calmer and more loving!

Recommendations for caregivers:

  1. do not confront in moments of rage especially if someone demented – because you might incur injury to yourself or loved one.
  2. if destroying property or hurting self call 911- explain they have an illness and need medical care/ call their doctor ASAP
  3. wait till calm to confront and discuss situation if not demented and get treatment – if demented and cant reason get treatment asap as well.
  4. be supportive-
  5. jot down triggers- alcohol a BIG trigger, lack of sleep etc.
  6. what helps to calm them down
  7. create an escape plan
  8. keep all firearms locked away/hidden/safe
  9. call domestic hotline 1-800-799-SAFE (7233)
  10. confide in friends to help in emergency and have a code word or visual sign which means call police

Sources:

Serotonin involvement in the basal ganglia pathophysiology: could the 5-HT2C receptor be a new target for therapeutic strategies? Curr Med Chem. 2006;13(25):3069-81.

5-HT Modulation of Dopamine Release in Basal Ganglia in Psilocybin-Induced Psychosis in Man—A PET Study with [11C]raclopride Neuropsychopharmacology (1999) 20, 424–433. doi:10.1016/S0893-133X(98)00108-0

Imbalanced Dopaminergic Transmission Mediated by Serotonergic Neurons in L-DOPA-Induced Dyskinesia. Parkinsons Dis. 2012;2012:323686. doi: 10.1155/2012/323686. Epub 2011 Oct 11.

http://www.mayoclinic.org/diseases-conditions/intermittent-explosive-disorder/basics/definition/con-20024309

@2017 All rights reserved Maria De Leon MD

dementia, parkinson's disease, Parkinson's Health, Parkinson's symptoms, Parkinson's treatment

Apathy: How to Combat: By Dr. De Leon

“Science may have found a cure for most evils; but it has found no remedy for the worst of them all- the apathy of human beings.” Helen Keller

It has been a few weeks since I have written. Why? Pure apathy or is it indifference! In our vocabulary we tend to use the words apathy, indifference, and impassivity interchangeably. However, are they really the same thing and if so what does it mean for us in our living with Parkinson’s disease? Why do we feel this way? Is it normal? And is there anything we can do to combat this feelings of inertia that seem to take over us from time to time. if not addressed and treated properly can lead to severe disruption of life as well as to isolation and depression.

Thus, I have chosen this particular topic for discussion now that my inertia has passed away. This is also a subject which has generated much interest in our community as per the choice award topics of interest gather by the former PDF ( Parkinson’s Disease Foundation). perhaps before we spend countless hours and research money on the subject we need to define exactly what we mean. As I said earlier, most of us equate apathy to indifference but they are not the same thing particularly when it is defined in terms of a neurological illness.

Apathy and indifference both denote a lack of responsiveness and interest to things that may normally stimulate, excite or cause great emotions. apathy comes from the Greek root word pathos meaning emotion ( a=pathos) without feelings or emotions. this is a deep rooted neurological problem that involves the frontal lobe of the brain which deal with personality, and executive functions. Not only do you not have much feelings or interest but you DON’T CARE! in neurology as I stated before when we use the word apathy we are saying there is a neurological problem in the wiring of the brain that has gone awry. Usually more common than not when we as neurologists see this behavior outside of structural injuries in brain (e.g. head injury,  stroke, etc.) is primarily related to dementia.

What most of us in PD experience commonly however, is not apathy but indifference. The difference between the two is the personal behavior attached to this feeling.  People with true apathy simply don’t give a hoot about anything and don’t know they are apathetic. As opposed to being indifferent or having inertia or decrease in concern or emotions; we are completely aware of the problem we want to change it and don’t want to feel this way but we lack the fortitude to do anything about it. This is the state where I have found myself recently and I am sure many of you as well.  I want to go out and socialize, get showered, write, exercise but don’t have enough stamina to make myself do these things because the energy involved to achieve these tasks supersedes our reward. Remember that the basal ganglia is also a center for reward and pleasure and if you don’t have enough dopamine to think and do necessary activities to stay alive then you wont have any surplus to go in search of feel good activities. the reason I experienced this has been due to a decrease in my dopaminergic intake due to cardiac issues being evaluated. however, once I took my regular doses of medications my concern for things that are pleasurable like socializing and writing have returned.

So what does this mean for you? evaluate your feelings? is it you feeling like you don’t care and rather not invest energy in things you normally would love to do like read or go to movies or is it your loved one saying what is wrong with you? you don’t seem to care? and it makes no difference to you, you are content in your lack of participation. You could careless if you never brush your hair or shower again in your life.

Independent of which feeling is plaguing you most, I want you to know that there are treatments available for both.

Apathy vs. indifference?

Both require evaluation by your physician/neurologist/MDS

Apathy

  • evaluate for new brain abnormalities i.e. stroke ( just because you have PD does not mean you can have other diseases), rule out thyroid disease and other metabolic abnormalities.
  • Get new or follow up mini-mental status exam (MSE) or  CogTest
  • neurobehavioral evaluation (needed in some cases)
  • Treatments:
  1. medications for dementia if present -e.g. Exelon (Rivastigimine) – only drug approved for PD dementia, but can also use  Namenda (memantine), Aricept (Donepezil), and Razadyne (galantamine). in my experience combination of Namenda plus Exelon or one of the other works best in retarding dementia particularly if introduced early on. thus I suggest yearly screening for this especially if had had PD >10 years because dementia risk increases with age and disease process. 40-50% develop PD patients develop dementia eventually.
  2. anti-narcoleptics- Provigill, Nuvigil ( non-addictive- focus on alertness, no blood monitoring required, do not interfere with other PD meds.
  3.  stimulants- a whole host which are amphetamines and amphetamine derivatives like Adderall, Ritalin. These are controlled substances and usually require closer monitoring some may even require blood monitoring.
  4. increase dopamine – but if dementia present this may make cognition worst

Indifference

  • evaluate for depression
  • adjust PD medications (usually go up)
  • rule out thyroid disease/other metabolic issues
  • get neuropsych/behavioral evaluation if not sure if depression vs. dementia
  • Treatments
  1. if depression treat with antidepressants ( e.g. Zoloft, Lexapro, Effexor, Remeron, etc.)
  2. fatigue may also be a cause- treat with amantadine, and evaluate sleep.
  3. may also need sleeping meds.
  4. participation in activities like art, singing, exercise, dancing, biking etc. can increase natural dopamine, serotonin, and endorphins among other. these will in turn allow you break that indifference. So don’t give in to it get a buddy who can help out to over come these challenges but don’t forget to talk to physician first.

Now that you are an expert on the subject, you and your family can discuss more accurately with your physicians as to the cause of your lack of interest and participation in previous activities which brought you joy. Soon you will be on your way to finding your passion once more. Find one thing that bring you joy and pursue it …..

Carpe Diem!

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

Tips to Over come Communication Impairment in PD: By Dr. De Leon

 

As we near the WPC 2016 which will be held in Portland, Oregon this year..one of the topics of great interest being presented is one of communication impairment.

First, we must look at what is meant by communication. The word  “communication”  implies the usage of  a deeper and complex network of interconnected neurons in the brain actively working to conceive, send, receive, and interpret  auditory, written as well as verbal & non- verbal messages. A problem or disruption at any point in this chain and we have ineffective or impaired communication. And as we all know ineffective or poorly executed communication can lead to disastrous outcomes.

For instance, there is a well known story which highlights this problem, a message given by a British Army Commander which stated: “Send reinforcements, we’re going to advance,” was lost in translation.

However,  reinforcements NEVER arrived because message received at command center heard instead:

“Send three and four-pence, we’re going to a dance”

A very humorous statement in the middle of a war but also quite out of place!

Not all communication failure can be as disastrous as this; yet it can be extremely frustrating for both the messenger and receiver. Lately, since one of my biggest problems with PD is actual voice related, I too am finding out how difficult it is to get things accomplish when those around you don’t get a clear message from you.

Why is this important?

  • Communication problems can be equally frustrating for all involved.
  • Person with problem of hypophonia  (low voice) or aphonia may become angry, irritable and isolated worsening an already existing depression or cause depression to ensue.
  • Some communication problems, such as having a soft voice, may be temporary and reversible with higher doses of levodopa. While other  speech related problems may be more permanent or caused by things like DBS implant or DBS positioning and activation of leads; in many cases leads may need to be readjusted because active electrical impulse is getting into areas of speech and affecting swallowing as well.
  • Sometimes medications, infections, dehydration, or depression itself  can cause difficulty in communicating with others due to the creation of confusion in the patient or person having these problems. the confusion then leads to an inability to state concretely or clearly their needs, concerns, or wishes. It is important to always review all medication with new onset of speech impediment especially when there appears to be a globally impaired person- not able to understand, read, write, or communicate verbally- we must exclude structural problems such as strokes and tumors in these individuals.
  • Of course the presence of dementia can also make communicating extremely difficult. This is a problem as 40-50% of PD patients are said to develop PD dementia after 15 years of disease. Thus, we have to take great measures to decrease risk factors especially as women are at higher risk for stroke but men are at higher risk for dementia and behavioral problems with PD. I recommend early screening as well as routine screening to avoid rapid cognitive decline when possible.

Whatever the cause poor communication can lead to depression and further isolation which only leads to a vicious cycle of increased deficits in communication and further withdrawal.

Identifying and solving communication problems:

As with most other problems in PD,  voice issues will develop slowly and subtly overtime. For instance, I have noticed that my husband and daughter are frequently surprised when I mention we are doing some activity on a given day which I had already mentioned to them before. After several episodes of me thinking I clearly stated something, I realized that they were no longer hearing me because I am developing softer voice. When I am completely aphonic, the communication is not as bad in my family because they pay more attention to my needs and watch for other non-verbal cues. But is the daily goings on that can be frustrating. Of course, as we age we tend to develop communication changes due to aging such as having poor sight or hearing which in turn can limit us as well significantly and in fact also cause much irritability if not able to hear or understand those around you.

Most people will seek medical help when things become bothersome enough or begin interfering with activities of daily living such as speaking in loud crowds or in a group, speaking on the phone, which I am beginning to have some degree of difficulty. Also everyone’s degree of impairment in their social life may be different even if the deficit is the same. this depends on each persons social abilities and needs.  If a person is a lecturer like myself than having any degree of hypophonia is significant  compared to one that lives alone and rarely socializes. Same goes for understanding written word. This can be a major problem if the person having these issues is the one in charge of important document handling.

Communication is a TWO-WAY street:

 Both the speaker and listener play an integral role as such both can and may need to alter their behavior in order to maintain a successful form of communication. one may have to try to speak louder and the other to make more eye contact and listen more intently. conversation requires all parties involvement- so tell your friends you cant speak as loud or cant hear them in loud places adjust your gathering environments rather than stop trying all together.

Make sure you get hearing tested- getting this done tomorrow.

Do speech therapy – which may include the LSVT- LOUD program to improve quality of speech and volume of voice. I think I will be enrolling soon. the speech therapist can also help with other types of communication skills like doing cognitive training or offer assistive devices to help you be heard and understood. there are a great number of assistive devices to aid in communication some are quite simple and inexpensive while others are more complex and expensive. May even consider choir therapy as well – for fun and perhaps may turn out to have some value in improving voice quality and clarity of speech.

The other great treatment available is collagen injections into the vocal cords which helps with voice volume.

 Don’t delay help and suffer frustration and isolation- talk to your physician asap .

chronic illness, Parkinson's awereness, parkinson's disease, Parkinson's Health, Parkinson's treatment

Tips for dealing with Chronic Pain: by Dr. De Leon

 

As I have spent the last week or so dealing with one type of pain or another I thought it might be worthy to go over the different types of pain people with Parkinson’s disease can experience and discuss some of the ways we can treat such pains while maintaining a full life.

Living with chronic pain is another ball game entirely than dealing with acute pain. As a person who has experience both and treated many patients over the years with both, I think I have a pretty good understanding of the consequences and common pitfalls we as patients and we as doctors fall trapped to when treating pain.

Chronic pain is one that lasts more than 3 months to 6 months since onset. although, some theorists and researchers have placed the transition from acute to chronic pain at 12 months.  Acute pain on the other hand is usually one that lasts less than 30 days.  Another popular alternative definition of chronic pain, involving no arbitrarily fixed duration, is “pain that extends beyond the expected period of healing”.[1] Epidemiological studies have found that 10.1% to 55.2% of people in various countries have chronic pain.[2]

We know that living with Parkinson’s disease on a daily basis can be a source of frustration and even lead to depression and feelings of hopelessness, if not treated promptly. Just knowing that there is no end in site can create a sense of hopelessness. So people that have intermittent pain have much better coping skills than those with chronic intractable relentless pain. The one common denominator amongst all of us who live with PD is the fact that we will experience pain at some point in our disease usually many times because there is no one single pain type. in fact most of us experience different types of pain even in a single week just as I have this past week, this is because my pain like that of many is  caused both by the illness itself, and medications as well as those caused by normal living (wear & tear if you will). Charcot famous neurologist who suggested name of Dr. James Parkinson be used for pathology and clinical symptoms of what we now call PD, recognized more than a  100 years ago that ‘pain’ was a phenomena of PD.

When I was in practice I loved the medication Vioxx ( before it was taken off the market) and so did my PD patients. This medication seemed to do wonders for the majority of patients with PD independent of the source. I, unfortunately, have not come across another medication which has the same effect. my patients too suffered the consequences of not having this medication available.

So you can have pain caused by the disease:

  • musculoskeletal
  • central
  • radicular
  • dystonic
  • joint

We now know that pain can be a presenting symptom of disease but the incidence in pain increases as we get older and disease advances. the majority of PD patients report pain as a muscle cramp or tightness in the neck, back, paraspinal muscles and calf muscles. The majority of this pain can be alleviated with anti-parkinsonian medications, at least in the acute phase. however, when it becomes chronic it requires a great deal more effort to break cycle which has sensitized the brain to be hyperactive to even the smallest pain.

Pain etiology: (3)

  1. PD itself:
  • tremors
  • abnormal posture
  • akathesia
  • dyskinesia
  • dystonia
  • falls/trauma
  • motor fluctuation

2.  medications:

  •   increase risk of cancer- prostate, melanoma, breast, benign brain tumors
  •  increase risk of osteoporosis – increasing risk of fractures
  • increase migraines/headaches

3.common diseases: which may worsen or change as we age- also may be indirectly exacerbated by PD or PD meds.

  • Diabetic neuropathies
  • migraines
  • herpetic neuralgia- PD patients have increased risk

Therefore, for pain etiology brought on by disease as in #1- the treatment is managing and adjusting dopamine medications including treatment with DBS and ancillary services such as physical, occupational therapy as well as joining in exercises programs but must have doctors approval prior to starting any programs to avoid further damage or exacerbation of symptoms. Botox, muscle relaxants, spine stimulators, baclofen pump, Lidoderm patches, and other muscle relaxant/anti-inflammatories  patches, as well as anti- inflammatory medications like ketorolac (Toradol) can play an important role in maintaining patients pain free. The use of prophylactic medications may also play a role in this group but not as much as in the other two. the key is to ALWAYS seek treatment by your MDS and a neurologist. They will then refer you if you need certain procedures or treatments which they themselves cannot perform.

There is no need for narcotic use in most pain situations due to PD unless it has become chronic and ALL other modalities have been exhausted. I don’t mean morphine or Demerol  but rather Vicodin, Tylenol #3 etc. Narcotics work great for acute pain due to herniated disc, fractures, cancer pain, or acute radicular pain- this means only a short amount of time until problem is fixed or it becomes chronic because there is no other  treatment modality and by then prophylactic medications need to be instituted such as antidepressants and  anti-seizure meds (Keppra,Neurontin, Lyrica, Topamax,Tegretol, Lamictal).  this will prevent brain from becoming sensitized and will also require much lower doses of narcotics. We don’t want narcotics in PD patients because the potential for exacerbating PD symptoms as well as increasing likelihood of confusion/disorientation and possibly triggering psychosis.

For category two: if medications like Stalevo are causing headaches switch meds; if unable to do so then back to what I described above. monitor for risk of cancer; monitor and institute prophylactic measures for osteoporosis prevention- monitoring vitamin D levels, taking replacement as needed, get sun at least 3 times a week for 30 minutes. Exercise to strengthen bones which will also improve mobility which will decrease likelihood of pain in axial muscles. get regular bone density scans.

For category three: treat diabetic neuropathies with anti seizure meds or antidepressants, take b1 (thiamine) daily, monitor thyroid, and B12 levels which can also cause neuropathies and monitor blood sugars (hga1c- better predictor) since there may be an increase in insulin resistance due to effects of dopamine.

If you are an elderly person and had chicken pox maybe at higher risk of herpetic neuralgia (shingles) should talk to doctor about getting vaccine.

As for me and all my pains which have to do with spine tumors and chronic migraines treatment of choice is botox which I plan on getting in next few days! meantime taking prophylactic meds along with anti-inflammatories (nsaid’s like Mobic, Celebrex, arthrotec,motrin, toradol or steroids) and muscle relaxants ( such as flexeril, tizanidine, Relafen, robaxin, klonopin, baclofen, dantrolene) to ease pain.

Finally, the best  way to deal with chronic pain is getting a good nights rest!  (at least 8 hours) and listening to your body when it is tired and stressed- make sure you plan ahead some down time each day at least 15-30 minutes. This for me is the best way to deal and avoid pain. Pain starts usually when I don’t sleep well and I am so busy I don’t allote time for myself. This includes time for inner quietness…meditation / praying . When you feel pain coming on – lay down in quiet dark cool place and calm down your breathing and your heart rate …with practice you can achieve this easily.

also distract yourself with activities that will bring joy like spending time with kids/ grandkids/friends but don’t overdue. Other activities which can bring joy and relaxation are painting/coloring /listening to music.  Don’t forget to hydrate, eat a balanced meal and exercise at least 3 times a week – this goes a long way in decreasing and warding off pain. Each time I deviate from my routine which includes above pain starts to pop up! Something to think about I your daily life – what triggers your pain?  Stress? Lack of sleep?

Go ahead and prioritize time for your yourself – self love goes – includes spiritual well being ( join a bible group) along way towards maintaining health and happiness.

 

Sources:

  1. Turk, D.C.; Okifuji, A. (2001). “Pain terms and taxonomies”. In Loeser, D.; Butler, S. H.; Chapman, J.J.; Turk, D. C. Bonica’s Management of Pain (3rd ed.). Lippincott Williams & Wilkins. pp. 18–25. ISBN 0-683-30462-3.
  2.  Harstall C, Ospina M. How Prevalent Is Chronic Pain? June 2003 volume XI issue2 Pain Clinical Updates, International Association for the Study of Pain. pages=1–4 [1]

3.  Broetz, et al., 2007; Bunting-Perry et al., 2010; Carr et al., 2003; Carroll et al., 2004; Ford, 1998; Loher, et al., 2002; Stacy et al., 2005; Wielinski et al., 2005

 

chronic illness, medications in Parkinson's, parkinson's awareness month, Parkinson's Diagnosis, parkinson's disease, Parkinson's Health, Parkinson's symptoms, Parkinson's tratamientos, Parkinson's treatment

An Overview of Common Skin & Wound Challenges Encountered In Parkinson’s Disease:By Dr. De Leon

Parkinson’s affects our insides and outsides and although commonly labeled as a movement disorder it has many more non -motor manifestations which can wreak havoc in our daily life’s . Some are cumbersome and embarrassing while others can be downright difficult to bear and live with.

Since dopamine, the major neurotransmitter involved in PD abounds outside of the brain it is expected and of no big surprise to see problem areas arise outside of the nervous system, particularly when it comes to control of the autonomic nervous system which regulates temperature, pain, glandular secretions, and controls all involuntary functions of our bodies like bladder emptying, sexual function, and peristalsis (bowel movement).

Many people outside the neurological community may not be aware of the severity and impact of having an autonomic system which has gone haywire. Thus, presenting some of the greatest management problems to date due to lack of disease modifying treatments. The autonomic dysfunction in PD can be manifested in a number of ways presenting with various signs and symptoms involving the skin and appendages such as our hair and nails. For instance, when I first began to have symptoms of Parkinson I noticed a change both in my skin and nails which at first I assumed were due to my thyroid cancer. However, as my thyroid problems got treated and under control, I still experienced dry patches of Skin in the most unusual places- behind my ears, fortunately no one could see but I knew it was there.

Try as I might to moisturize, wash with shampoos containing Zinc and selenium, the patches remained stuck unable to be peeled away. To my amazement and surprise when I recently switched to Rytary I noticed that the patch of dry scaly skin had disappeared completely from one side and significantly diminished on the other. Such insignificant small victories that can make someone happy. But, much to my dismay about a week ago I began noticing a large scaly patch smack in the middle of my forehead – resembling a sunburn that is peeling away, I rather go back to the patches no one could see. Of course I have already discussed elsewhere the increase sweating, I like others have experienced. So I began thinking about all the changes that we experience with Parkinson’s some visible while others not so much and decided that a visit into skin changes( alterations) caused by PD, it’s medications, as well as those caused inadvertently by drug delivery methods and immobility merited my attention and a bit of discussion. Skin alterations are not commonly recognized by those outside of neurology field as I mentioned earlier yet; it appears that autonomic dysfunction affecting the eccrine sweat glands are involved early on in the disease process when compared to controls. There appears to be decrease innervation of blood vessels and to erector Pilli muscles (important in regulating temperature).

Common skin conditions:

  • Sialorrhea– increased drooling
  • Hyperhidrosis– increased sweating
  • Malignant skin lesions– most common is increased melanoma but other skin cancers can occur.
  • Seborrhea-greasy skin with limp oily hair

Seborrhea dermatitis – accumulation of sebum (oil) is the cause of seborrhea usually seen in hair, and in the forehead as well as in folds of the nose. When this becomes chronic it leads to dermatitis (inflammation of the skin- red, itchy, flaky). Skin and hair need to be washed routinely and use anti dandruff shampoos; however once dermatitis sets you may need to consult a dermatologist to treat with topical steroids. This dermatitis can affect the eyes as well causing small patches that get into the eyes and eyelashes. Inner parts of eyebrows eyelids and ears can be affected as well as chest area, under skin folds like in groin, breast and axilla. Solution to face and scalp seborrhea is to let the dandruff shampoo run over your eyes closed and wash away gently. Seborrhea is more pronounced when disease is most active.

Ways to prevent & Treat Seborrhea Dermatitis:

  • Wash face and skin with warm water using a mild soap (e.g. unscented glycerin soap) and rinse with cold water
  • Avoid cosmetic products which contain alcohol
  • Increase hair washing especially using a dandruff shampoo containing selenium (selenium sulphide), zinc, or shampoos containing 5% tea tree oil, and olive oil shampoos
  • For males who made be bald- use mild soap or sorbolene cream in scalp
  • If you have severe crusts or scales in your scalp try rubbing a mineral or olive oil several hours prior to washing hair
  • Medicated eardrops to treat ear canal flakiness
  • May need a short term steroid based cream or ointment if itching and redness is severe. (a home remedy I often tried on my patients before steroids is application of Crisco lard on scaly patches- just don’t go sit out in sun or get near fire)

Drug Therapy & Skin Changes:

Melanoma – increased risk in PD population with all dopamine and dopamine agonist especially with levodopa. Constant vigilance is of the utmost importance. See elsewhere in my blogs as to risks and diagnosis of these.

Skin sensitivity– this is something that is important to note as well since all of us with PD appear to have hypersensitivity to the sun specially when taking Mao-inhibitors like Azilect. Make sure that you protect your skin, wear cool clothes and hats and stay in the shade if possible do not go out in extreme heat particularly if you are elderly because as we age we tend to have increased skin sensitivity and fragility.

Drug side effects

Amantadine– an oral anti flu medication used for Parkinson’s treatment particularly for tremors. However, this medication can cause skin changes known as Livedo reticularis (purple stria) in the lower extremities, it can affect the trunk as well as arms but less commonly seen. This rash is asymptomatic and usually comes up anywhere from a month to 4 years later on average. The good news is that this discoloration of skin resolves completely with cessation of drug intake.

Apomorphine– is a dopamine agonist used for treatment of acute and intermittent ‘off ‘episodes with long standing drug therapy treatment for PD. This medication can be given IV infusion or by subcutaneous injections these can lead to skin necrosis (dying out skin ulcers) at site of injection; also can occur years after use. Make sure always clean area before and after and have a nurse from pharmaceutical company train you on how to use properly to decrease potential for side effects.

Transdermal drug delivery– Neupro patch, Exelon patch, Selegeline patch. These reactions can range from mild irritation to severe inflammation, pain, whelping, itchiness, and burning. One way to decrease this sensitivity is washing area thoroughly before use and drying it well; also rotate sites recommending using same site no less frequent than every 3-4 days.

Steven Johnson reaction/syndrome– serious idiopathic life threatening skin rash which can be lethal fortunately extremely rare. It is usually to a medication or an infection- begins with flu-like symptoms followed by a painful red or purplish rash that spreads and blisters. Go to ER ASAP if have this…but in all honesty not seen this with PD.

Pressure sores- As, PD advances many of us become immobilized forced to sit in wheel chair or in bed 24 hours a day. This along with the already decreased mobility of disease and increased rigidity along with moisture of chronic sweating and of urine incontinence can lead to pressure ulcers particularly in the heels and buttock areas due to pressure, shear, moisture and friction of skin and blood vessels. Need air mattresses, heel booties, constant supervision and turning by a caregiver, changing sheets and clothing, dressing in cool garments, maintaining room temperature cool and if going to maintain in disposable undergarments need to change every 2 hours at the most and wipe are clean from sweat and dirt, bathe in bed frequently (daily). If urine incontinent consider placing a catheter less risk of infection. This is what I did for my grandmother and never developed any sores or ulcers because these can get supra-infected with ordinary common organisms easily like staph infections. At the first sign of skin break down begin treatment with medicated gauzes and talk to nurses and doctors caring for patient ASAP to avoid progression, hospitalization or death.

Fungal infections-Risk of fungal infections increase in patients with PD who are incontinent of urine. These infections look like rashes in the perineal area and groin. They are moist, itchy, red and looks like satellite as infection spreads outward, sometimes they are white like babies ‘cotton-mouth/thrush’ this risk may increase with diagnosis of diabetes ( which we as Pd patients are at higher risk). Treatment consists of anti-fungal medication topically like mycostatin ointment. One way to prevent is as I said above maintaining dry are but also apply 1-2 times a week some Desitin (or other baby rash ointment with zinc) to groin area to help with moisture and decrease this type of infection.

Addendum: Eltamd UV Clear SPF 46, 48-Gram 1.7 oz.

2 possible treatments are:

Elta MD sunblock- can find at amazon

Over the counter Cerave skin cleanser & lotion helps with eczema

 

Sources:

http://www.parkinsonsvic.org.au/parkinsons-and-you/skin-scalp-and-sweating/

http://www.o-wm.com/article/skin-and-wound-issues-patients-parkinson%E2%80%99s-disease-overview-common-disorders

Parkinson's awereness, Parkinson's Diagnosis, parkinson's disease, Parkinson's Health, Parkinson's symptoms, Parkinson's tratamientos, Parkinson's treatment, Parkinsons disease, parkinsons health and beauty tips

Camino al Mundial 2016 (Congreso del Parkinson -WPC 2016):Dra. De Leon

Estoy muy entusiasmada y agradecida de poder formar parte del comité encargado de los preparativos para un evento tan especial e importante como es el congreso mundial del Parkinson. Este evento se lleva acabo cada 3 años. El último se llevó acabo en Montreal. Este año se celebrará el cuarto Congreso Mundial en la ciudad de Portland, Oregón  en septiembre 20 al 23 de 2016. Los invito a todos ustedes a que consideren asistir a este gran evento.

¿Pero Porque asistir se preguntarán? Primero un poco de historia – en el 2002 el ex director del Instituto Nacional de la Salud (NIH) Dr. Elías Zerhouni hizo la pregunta ¿Porque no había una conferencia donde todos pudieran asistir al mismo tiempo en el área del párkinson? Esto creo la iniciativa del primer mundial del Parkinson e se llevó acabo en Washington del Distrito de Columbia en febrero del 2006. Esta fue una idea innovadora para juntar a la toda comunidad nacional e internacional del Parkinson  incluyendo pacientes, familiares, doctores y científicos.

Desde la primera conferencia a la cual asistieron 3 mil personas ha crecido enormemente. Este año, se espera que participen delgados de más de 60 países. Pero en los últimos congresos ha habido poca participación por la comunidad hispana. ¿Pueda que tal vez sean las barreras del idioma el que nos separe de tales eventos o tal vez el costo o la misma distancia? Pero aunque todas estas razones son muy legítimas especialmente acudir a algo que no vamos a entender puede ser problemático.  A la vez si no ponemos interés de ir y participar en algo de tan gran importancia que podría dejar grandes beneficios para nuestra comunidad damos la apariencia de que no nos interesa este tipo de evento. Es imperativo que las puertas se nos habrán a nosotros los latinos para tener voz en las fundaciones principales del país porque aquí en los Estados Unidos los Hispanos formamos la minoría más grande y también entre los hispanos tenemos dos veces más riesgos de ser afectados por esta enfermedad llamada Parkinson que afecta más de 7 millones mundialmente (con casi dos millones aquí en nuestro país). Pero a pesar de esto no somos representados igualmente en los estudios científicos ni recibimos los mismos tratamientos médicos ni quirúrgicos.

Hoy más que nunca necesitamos unir nuestras voces para poder hacer cambios en el tratamiento en nuestras comunidades para poder lograr mejor calidad de vida. Solamente con asistiendo a programas como este podemos empezar a dejar nuestras voces resonar en aquellos que tienen la capacidad de hacer verdaderos cambios en la ciencia. Para poder encontrar cura es importante entender la cultura y la genética que nos separa. Y nosotros necesitamos encontrar apoyo en nuestra comunidad aquí dentro y fuera del país. Porque como dice la antigua canción de Roberto Carlos “yo quisiera tener un millón de amigos y así poder cantar mejor” porque en la unión esta la fuerza. Además también es importante como saber encontrar los recursos necesarios para nuestras familias y para nosotros para participar en estudios científicos y para obtener beneficios algo de lo que pueden aprender más allá en la conferencia. Allí conocerán a otras personas como ustedes de aquí y otros países que les servirán de guías y mentores en su jornada con esta enfermedad. O tal vez alguna de ustedes que ya tienen muchos más años viviendo con la misma pueden ser embajadores o partidarios de otros que apenas comienzan esta larga trayectoria.

Por ultimo allá podrán asistir a conferencias donde aprenderán cosas prácticas para el diario vivir como nuevos tratamientos al igual que los últimos avances en la ciencia que ustedes después pueden desimanar en sus comunidades médicas y con sus otros amigos que también padecen del párkinson. Si tienen bajos recursos pueden aplicar para becas de viaje y ayuntamiento. También si dirigen a médicos o científicos a esta conferencia se les garlaran premios y puntos para viajar. Entre más refieran más ganan (tienen que ser gente nueva que nunca ha ido). Y si usted tiene algo científico o clínico de interés que presentar a la comunidad por favor sometan un cartoncillo (poster) de presentación. Allí estaré yo, y Claudia directora del centro de  Parkinson de Mohammed  Ali (MACP) (que trabaja con la comunidad Hispana de Phoenix en  Julio uno de los bloggers del congreso, Israel embajador y partidario activo de la comunidad del párkinson al igual que Fulvio que es también embajador del congreso y  estuvó en Glasgow en 2010 cuando se presentó  la cobija  ( Quilt Project del PDF) representando a todos los del párkinson mundialmente (ahí tuve yo un pedazito también- en honor de mi abuela) y asistio al congreso en el 2013 en Montreal. También por medido de Julio, Claudia,  yo, y otro les mantendremos informados de los nuevos avances y temas de importancia que se presentaran por allá. Esperamos verlos en la ciudad de Portland en Septiembre a todos ustedes.

Para más información acerca de los temas: Www.wpc2016.org/program

www.wpc2016.org

O para inscribirse o seguir a Julio:http://www.movingforwardwithpd.com/

  Fulvio Capitanio (Spain) is an economist and ITC manager. He was diagnosed with Parkinson’s in 2007 and retired from his job in 2009. In January of 2008, with a group of PD friends he met over the Internet, he started an online organization called “Unidos contra el Parkinson” (together against Parkinson’s disease) at http://portal.unidoscontraelparkinson.com

Israel Robledo Claudia Martinez Claudia Martinez

 

fall prevention in parkinsons, falls in parkinsons, medications in Parkinson's, parkinson's disease, Parkinson's Health, Parkinson's symptoms, Parkinson's tratamientos, Parkinson's treatment

Common Causes & Treatments of Dizziness in PD: By Dr. De Leon

 

Parkinson’s disease (PD) is a progressive neurological illness affecting the basal ganglia causing neuronal cell death of the dopamine producing cells within the substancia nigra as well as neuronal death in other parts of the brain including the brainstem. Rest tremors, rigidity, gait impediments, and marked slowness of movements (commonly referred as motor symptoms) are the hallmark of this disease. However, there are also many other non-motor symptoms involving sleep, cognition, behavioral problems, and autonomic dysfunction. Among these dizziness is a common complaint among people living with PD making up to 30% of those over the age of 65.

So what is dizziness?

Because the term dizziness is so imprecise due to the fact that it can refer to vertigo, syncope, disequilibrium, general weakness, or a non- specific feeling such as giddiness; It is often dismissed by healthcare providers as trivial if one complains of ‘dizziness’ purely as a non-specific symptom. First, we have to understand what we mean by feeling dizzy- some people think of this as the room spinning or a sense of self spinning- this is actually known as vertigo and implies a different cause (etiology). While a feeling of unsteady in your feet when walking and actually veering or falling to one side as opposed to just falling all over the place implies more than loss of balance but rather a structural abnormality within the brain or ear canal. Some people feel lightheaded instead- feeling faint, and may complain of feeling a sensation of swimmy headed/ water inside the head.

So as you can see there are a multitude of causes of ‘dizziness’ and in order to get the right treatment you must learn to be specific with your problem.

The Medical definition of dizziness is- either someone who is mentally confused or is having a feeling of whirling in the head with a tendency to fall.

In order for someone to walk normally without unsteadiness or loss of balance, one must have intact sensory input (eyes, ears, nerves in feet referred to proprioception as well as intact cerebellum; extrapyramidal system-one involved in PD; and cerebral cortex). As you can see there are a lot of places where we can have a deficit causing us to feel ‘unsteady’ and ‘dizzy’ making us prone to fall or become confused.

Causes of Dizziness in PD:

  • Neuro-otological- meaning inner ear problems
  • Cardiovascular disease
  • Drugs
  • Multisensory dizziness syndrome- meaning poor input from various sources i.e. eyes, ears, nerves, etc.
  • Cervical vertigo
  • Postural hypotension
  • Postural instability due to tremors/dyskenisias
  • Pisa syndrome- antero-flexion of the trunk leading to loss of balance by shifting gravity forward- treat with brace, botox and medication adjustment.
  • Migraines- occipital (basilar migraines) may present only as dizziness and nausea without headache- common change in people who had migraines all of their lives. Stalevo and levodopa compounds are more likely to trigger. treatmnent migraine medications – e.g. maxalt, imitrex & preventive meds such as Topamax or keppra
  • BPPV-Benign Positional Vertigo- treated with vestibular therapy

Treatments of dizziness:

The most important thing to discovering and treating the cause of your problem is a good detail history. This includes:

  • What do you mean by dizziness? Is it vertigo or light-headedness or swimming sensation in head or a feeling of confusion, etc.?
  • Are you falling? Or simply unsteady?
  • When does it occur? (After medication, before medication?)
  • How long does it last?
  • What makes it better? What makes it worse?
  • Other symptoms? Ringing in ears? Hearing loss? Numbness in feet? Weakness? Headaches?
  • Chest pain?
  • Only when you stand still? Or walking?
  1. Neuro-otological– it is important to have yearly check- ups of hearing and sight especially as we age. This is the number one cause of falls and unsteadiness in older people because the sensory input from these areas are no longer functioning as well as we would like. Especially in PD we already have vision problems including loss of contrast and difficulty moving eyes more so if you have PSP – vision is extremely limited in the vertical plane resulting in frequent falls because people are not able to see changes in sidewalks, like small steps. The other group who might have had essential tremor initially and then developed PD may suffer from significant hearing loss which is one of the hall marks of ET- which may then contribute to poor equilibrium.
    1. Get hearing aids and/ or prisms to help with these types of problems that lead to disequilibrium. This means seeing an ENT doctor and possibly getting an MRI brain, an electronystagmogram (ENG)- this test helps distinguishes between abnormalities in the vestibular system, brainstem, and cerebellum, and having a hearing test done. Also may need to see a specialist called neuro-opthalmologist if your regular eye doctor is not able to detect any eye abnormalities but have trouble seeing resulting in falls.
  2. Cardiovascular-of as we age we also have tendency to develop heart disease, women are not excluded from this- after menopause we have same risk as men. Furthermore, although it is still controversial and not well publicized most of the dopamine agonists do increase the risk for arrhythmias (this risk increases with age in my opinion and needs to be monitored especially if already have risks for heart disease or family history of such). I myself have developed a secondary heart degree block since I have been on my medications. This type of problem usually presents in the middle of the night but can occur anytime a person goes to the bathroom to void, they may experience near fainting or actual fainting- this is extremely serious and need to seek medical attention ASAP from cardiologist!
  3. Drugs-most of the drugs used for PD because they work on the neurochemicals can potentially alter cognitive status especially if have underlying dementia or a Parkinson’s plus syndrome. But in PD patients these medicines can often cause sleepiness making one feel somewhat unsteady and dizzy particularly when in a moving vehicle it may trigger actual spinning sensation even when the vehicle comes to a sudden stop. This feeling is more common with benzodiazepines (e.g. klonopin, valium, etc.) The dopamine agonists are more likely to cause sedation, the one least likely is Neupro patch. One way of counteracting is taking medications like Provigil & Nuvigil (narcolepsy drugs often used in PD to help maintain alertness). However, one simple solution is when you feel this way lay down and take a small nap- problem solved. If unable to function because feeling unsteady, and spinning talk to your doctor about adjusting your medication especially if you are actually experiencing outright confusion and disorientation.
  4. Multisensory dizziness syndrome– the biggest thing here is loss of proprioception- feeling or sensory input from the ground due to peripheral neuropathies. This is common from B12 deficiency, a common problem in PD easily corrected by checking blood work- levels should be in the 1000’s replaced only via IM B12 injections or nasal spray. Other common causes is diabetes – this is a risk that increases as we age plus as I mentioned in other blogs PD patients may be at higher risk of developing Diabetes due to insulin resistance cause by dopamine intake since it shuts down the pancreas. I suggest close monitoring of your sugars especially if had PD for a long period of time and/or have family history. * see how to tell if you are at risk of diabetes. Take B1- thiamine 100mg a day to protect against neuropathies. Another reason people may have sensory loss in their limbs is due to stenosis/herniated discs in neck and lumbar spine – frequent problems in PD. In order to avoid this from becoming chronic irreversible problem seek immediate medical attention if have pain, weakness or numbness shooting down a limb.
  5. Cervical vertigo- as I said above cervical stenosis can cause problems of proprioception- since head and neck move together any compromise of the neck disrupts the input into the brain- this may be one of the biggest problems in PD since so many of us as we advance in our disease experience problems in our neck due to dystonia/ dyskenisias/ and increased rigidity. Not only will this affect sensory input coming in as well as going out but may also disrupt blood flow into the brain by compromising the vertebral arteries if there is abnormal positioning of the neck. Hence it is extremely important that if you are experiencing neck issues especially in light of dizziness, vertigo or unsteadiness- seek immediate medical attention to adjust medications, get Botox, DBS or neck surgery and even take a blood thinner in form of aspirin to maintain blood flow if not contraindicated. The advantage is that an aspirin a day may also be beneficial (possibly neuro- protective) in PD.
  6. Postural hypotension –the #1 cause of dizziness and falls in PD patients. Most medications can cause low blood pressure upon arising quickly leading to loss of balance or falls as you first get up from sitting or lying down. Sometimes can be severe that it lasts several hours making gait difficult. When hypotension is medication related you will notice this symptom an hour -2 after medication intake and will improve as medication wears off. Usually most severe within first hour. Some patients if they have Parkinson’s plus syndromes like Shy dragger, LBD, or PSP may have symptoms from the beginning even before medication intake. These patients need to be on hypotension precautions like wearing support hose (ted hose, compression hose that go to their thighs), sleep with head of bed elevated at 45 degree angle (can get a bed tempurpedic mattress, or put a few bricks at head of bed), do not shower with hot water- only warm, drink cold water during an episode, and take medications like salt tablets, Northera, Midrodine, Fludrocortisone, and others like Remeron (because of increased BP potential). If you have advanced PD, you also may have this problem and may need to resort to similar symptoms. However, if you have early onset PD and are experiencing this type of side effects- one try adjusting medications or switching to another type. Sometimes taking meds on a full stomach helps decrease this side effects or taking meds early in am and going back to bed and sleeping symptoms off are some of the possible strategies to dealing with this issue. Talk to your doctor as soon as possible if you are experiencing light-headedness, dizziness, and disequilibrium and faint feeling upon arising. Also remember to get up slowly from sitting or lying down.

Sources:

http://www.webmd.com/heart/understanding-low-blood-pressure-treatment

http://www.healthcommunities.com/ear-nose-throat-tests/balance-tests.shtml

http://file.scirp.org/Html/6-2100581_47042.htm

@copyright 2015 all rights reserved Maria De Leon

cancer risk in parkinsons, chronic illness, fluctuations in parkinsons, parkinson's disease, Parkinson's Health, Parkinson's symptoms, Parkinson's tratamientos, Parkinson's treatment

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!!!

 

 

 

 

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

Taking a Closer Look at DBS: By Dr. De Leon

Recently, there has been a spur of interest in the surgical treatment known as deep brain stimulation (DBS) among the Parkinson’s community. Although, this procedure is by no means a ‘novel’ or ‘new’ treatment being approved by FDA back in the late 1990’s for tremor and 2002 for PD has begun to reach general stream awareness due to postings in the media by concert master R. Frisch playing the “fiddle,” during brain procedure (DBS). Of course, who can forget the recent nationally televised event which took place at University Hospitals Case medical Center in Cleveland, OH on October 25th on a YOPD patient began another debate of when and who should be having this procedure done?

Despite some reservations which include non-disclosure of funding by Medtronic’s to hospital and surgeons performing operation as well as an increased risk of possible complications due to outside factors usually not-present in the operating room; I believe that educational broadcasts such as this one play a very crucial role in validating DBS as a viable and effective treatment while raising awareness and promoting its use.

Even though, DBS is the standard of care in the treatment of Parkinson’s disease, since its approval only roughly 5% of all PD patients have had this procedure done, according to Dr. Allison Willis, Assistant professor of Neurology & Biostatistics and Epidemiology at The University of Pennsylvania school of Medicine. This is a great travesty considering that nearly $100 billion were invested by Medtronic’s to bring this technology forth. However, the worst part in my opinion is the huge discrepancy seen in those implanted, at least here in this country, which tend to be white males (95%). Even when women and other minorities are seeing and being followed by the same specialist as the men implanted, these groups seldom even get the option of DBS as a potential treatment.

So how do we decrease these discrepancies?

First, by being aware of its existence and coverage by insurance including Medicare (other assistance programs available through Medtronic’s). Now we also have a new competitor on the market known as the Brio Neurostimulation System. This unlike the Medtronic constant voltage device- it has a “constant current” delivery system allowing it to react to brain wave changes over time, thus potentially decreasing number of reprogramming visits.

Second, knowing that there is a specific type of person that benefits most from this procedure as well as a time window for obtaining best results.

Third, although usually offered or reserved for those who have clear cut tremors, dyskinesias, or intolerability to medications due to side effects of the same in the presence of good and clear cut symptom control with levodopa; some physicians are opting to perform this procedure in YOPD patients early in the disease in hopes it might alter the disease process. This is not yet known. At present DBS is not a cure nor does it alter disease progression however, it does buy the individual with Parkinson’s time for other advances to occur as well as decrease both the doses and medication side effects.

The one reservation I have in performing the procedure too soon is knowing when is best time to do? Since we still don’t have a biomarker or blood test or other objective testing to say a person has PD unequivocally besides a brain biopsy, I worry that for those that have other slower progressive parkinsonian symptoms – an implant maybe done unnecessarily.  However, I will venture to say that at 10 years one should have a clear indication of disease and whether or not it conforms to typical PD progression and if a patient would be a good candidate.

As I find myself in the process of weighing in the benefits of having a DBS for the sole purpose of reversing medication intolerability; I am again revisiting the top reasons why a patient can or does poorly with this procedure.

TOP REASONS for Less than Optimal outcome once RIGHT candidate chosen.

1.Neurosurgeon technique– find one with experience- one that has done many- ask names of people that have had done.

  1. Programmer’s experience is the most crucial in my opinion!!!! Best if the programmer is the SAME MDS/neurologist adjusting your medications. As voltage goes up medications MUST come down! Second best option is seeing programmer at same time in same office as neurologist. Find out about the programmer you will be seeing beforehand…how good are they? Bedside manner? Patient satisfaction?
  2. Patient’s lack of support from inner circle of family and friends. This is crucial if care partners are not on board with procedure – it won’t be successful. Or frail elder caregivers.
  3. Patients sometimes fail to fully grasp their own disease stage as well as their own age in regards to having risk for other medical issues. Unfortunately, as we age not only might we develop other problems like high blood pressure, diabetes, etc. but PD will continue to progress so distance to programmer is very important. Think about fact that you will make several trips a year especially at the beginning of DBS to make adjustments; thus traveling 5 hours may not be such a big deal at first but can get old and more difficult to do as time passes. If this is a problem and still a good candidate consider pallidotomy surgery instead or hopefully in next couple of years Focused ultrasound. I have had several patients who have undergone procedure only to not benefit from it because they could no longer travel to centers where programming was being done. Fortunately, now we also have two choices of devices both by Medtronic’s and Brio which produce constant current.

Now that you are aware of this new technology my esteemed reader, I recommend that you bring up the topic with your physician yourself but do in a separate visit to discuss this thoroughly.

Questions to ask?  

  • Am I a candidate?
  • Who and where will the surgery be done?
  • Who will do programming?
  • How many steps are involved in procedure because it seems to me like every teaching institution has different protocols-ranging from bilateral implants as an outpatient with no general anesthesia or sedation other than the part when battery is implanted in the chest wall to a 5 step procedure as is being done at Vanderbilt in which I believe also like to have patients asleep during surgery. Other concerns although purely for vanity purposes but also one that might cause more or less possible skin infections in scalp is the manner in which patient is prepped –total head shave or only minimal plus will they be using titanium halo for stereotactic mapping or a lighter frame?
  • Most importantly how long will you have to be off medications for the procedure? Some people have such severe pain or dystonia’s off medication that will make procedure much more difficult.

Now we are ready to embark on a life changing journey with the knowledge at our finger tips to help us and our doctors make the right decision of whether DBS is right for us or not? For me the idea of taking much fewer meds is extremely appealing but having to drive 6 hours round trip to get adjusted every few months is somewhat of a draw back since I will have to do this on my own most of the time. keep you posted!

Good luck to all of us!

Sources:

https://www.facebook.com/parkinsonsdiseasefoundation/photos/a.442545474003.246436.34178524003/10153629275519004/?type=3&theater

http://blog.pdf.org/2015/10/23/dbs-in-primetime-natgeo-to-air-brain-surgery-live-this-sunday/

https://www.michaeljfox.org/foundation/news-detail.php?fda-approves-new-deep-brain-stimulation-device http://www.uphs.upenn.edu/news/News_Releases/2014/01/willis/
go to http://www.pdf.org for more information on topic