fluctuations in parkinsons, parkinson's awareness month, parkinson's disease

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

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

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

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

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

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

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

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

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

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

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

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

Sound familiar?

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

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

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

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

untrompo

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

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

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

@copyright 2018

all rights reserved by Maria De Leon

 

 

 

medications in Parkinson's, parkinson's awareness month, parkinson's disease, Parkinson's Health

Curious Case of Maria De Leon

“Art is the “objectification of feeling” art is often hard to describe…one usually fumbles for words to express with the right words what we see….
But it isn’t hard at all to FEEL art, to look at images upon a canvas and sense the power, the anger, the love, and even the despair that inspired the work of arts….”Suzanne k. Langer 

 

I have not written much lately and there is a curious reason for this ..reminded me of Curious Case of Benjamin Button movie starring Brad Pitt. I thought I would share my musings with you and see what you guys think. As you may know, I have been a long time proponent of art therapy as an alternative treatment for Parkinson’s but more important than this for years as a neuroscientist I have discussed the notion of  creativity being somehow related to “brain pathology.”

In my Parkinson’s Diva  book I devoted a whole chapter to art therapy as a second chance (if you will) given to us by a Higher being (GOD)  as way to flourish and bring forth beauty.  Many have read the big debate regarding artistic expressions in PD. The question remains whether is a result of medications or an inherent part of PD. But perhaps there is a third option. Perhaps the artistic expression occurs as a result of chemical imbalances activating parts of the brain we usually don’t rely on for functioning.17039279_1050824945024177_4069118663995079579_o

First of all we have to look at the way we define “normal” (brain functioning). What is Normal? and who came up with this idea of setting specific parameters? could it be that what we term normal is actually just average? (after all statistically speaking normal is simply a term for the average in a bell curve)

I have devoted my adult life to the study of neurological behaviors and to understanding the great complexities of our brains.  After nearly 30 years, I must say that I understand its inner functioning even less than I did when I first began. I am not really surprised by this being that I believe that a superior God with infinite power and knowledge created us to His image with a 100 billion neurons with a trillion connections – are we so arrogant to pretend we understand how it works? We might have a better understanding I think of how space works -infinite less complex and smaller than our brains.

For years, i have treated patients with number of neurological illnesses such as epilepsy, dementia, Parkinson’s, bipolar disease etc. all of whom had expressed time and time again their desire to be untreated or under-treated in order to be able to feel themselves particularly to experience the creative flow weather it be writing, painting sculpting, etc.

I have always been an admirer of great artists and writers like Van Gogh, Picasso, Hemingway  many of whom interestingly have had severe neurological illnesses. some of whom created their masterpieces while being hospitalized in mental institutions. Scientists have been able to cause creativity in the form of art by stimulating certain parts of the brain while many individuals have suddenly gained artistic knowledge where once none existed after a traumatic brain injury. While some Alzheimer patients have become great sculptors and painters as their disease advanced.

Around the time I began to experience my first symptoms of Parkinson’s, I felt a sudden irresistible urge to write poetry, after years of not reading or writing poetry, which used to be one of my favorite past times as a young woman. The outpouring cleansed my soul and brought not only peace by putting into words my fears, frustrations etc. but also allow me to move forward with my life after the PD and cancer diagnosis by putting closure on things that were painful to me.

The creativity over the last decade of me dealing with PD increased exponentially on its own from increased interest in writing (poetry and other forms), art appreciation in all manner in my life from my teaching style, to fashion and decor, to developing an actual interest in painting (something I never even had a minimal desire in doing). I also noted that taking levodopa fueled that desired and increased an out-pour of artistic expression almost in a manic fashion.

However, the interesting and curious thing about this whole ordeal is that over the last several weeks as i have somehow found an equilibrium in my life with both alternative and traditional therapies feeling nearly “normal” being able to do things which I had not been able to carry out in years like tending house daily- doing laundry, cooking, cleaning, running with daughter, teaching etc. without feeling tired, weak, stiff, shaky and in pain; I have noted a sudden decrease (almost lacking completely) in creativity, in desire to write, paint, or express myself in an artistic fashion. It has been hard to come up with ideas for any of my projects which most nowadays depend on some sort of creative flow. i don’t want to write among other things.29542834_2022349857778686_1246047400348006539_n

Although, I am thrilled to be feeling this great physically – (hope it last) I am feeling a loss of that newly found creativity which was new,  foreign, and exciting especially for someone who always had a scientific mind.

For years, I have studied brain pathology and neurological diseases trying to infer what is normal but perhaps i have been wrong of what normal really is or rather what makes genius.  perhaps the phrase mad genius is not so far off…

One must be a bit off center to be able to express oneself in an artistic fashion what ever medium they choose. so should we be medicating all these people into mediocrity/normalcy?

Perhaps the greatest gift Parkinson’s disease had given me and many of us is that chance to be  closer to the mind of God; after all He is the greatest artist and creator as evidence by nature.  Plus, having lived with PD for more than a decade i can certainly agree with Edward de Bono who stated that ‘creativity involves breaking out of established patterns in order to look at things in a different way!” – Boy,  none more than us who live with PD have learned to break out of patterns/routines in our lives to look and find unique solutions to everyday way of living.

The question remains will i stay feeling healthy and physically ‘normal’ without much interest or desire for creative expression or will my creativity return should my Pd symptoms take hold of me once more? Having tasted the sweet feeling of being almost manic is easy to understand why no one would ever feel the desire to return to a state of  equilibrium especially if  you lose an integral part of your being – that of being an artist, a writer, a poet, etc.

@copyright 2018

all rights reserved by Maria De Leon

chronic illness, parkinson's awareness month, parkinson's disease

Quality of life considerations for Parkinson’s patients by Dr. De Leon

Life is all about quality Not quantity!

My husband’s first words to me upon arriving home this evening ‘was were you able to go see doctor?’ Before I had a chance to utter a word, he responded: ‘you canceled again did you not?’

I nodded, yes. ‘I was afraid of that. I was thinking all day about what the doctor had to say about your condition hoping you had been able to keep the appointment this time around’.

I am sure that this is a common scenario that gets played over and over again and again across the country and the world when living with a chronic illness; particularly if there is no one to help get you to the doctor’s office as it is my case. It is extremely frustrating to need to be evaluated by a healthcare provider yet being unable to get dressed or even show up because of physical impairments.  I worry that I will not be given appointments again if I cancel more than I keep; after all other patients who CAN show up would most likely be given preference. As a doctor I know that that’s what I would do. Another concern, at least here in this country is being charged a fee in many specialists office if there is a cancellation less than 24 hours which I understand as a professional but as a patient with daily fluctuations this is hard to deal with adding yet another stressor.

I am beginning to value the idea of walking’s at the doctor’s office even more now; something I always made room for in my practice. Unfortunately, aside from primary care clinics this practice is extremely uncommon in specialty practices. In other countries the wait to see a specialist may take months making it more difficult to get care if you miss an appointment. Hence the urgent need for telemedicine to begin branching out to meet the needs of a growing population of chronically ill neurological patients who are also getting older. As I get older and sicker, I really think I should be moving closer to the city where I can have easy access to my doctors; plus in some cities here in the States they are beginning to introduce the service of UBERHEALTH for those patients who cannot otherwise get to their doctor.

Of course, this brought me to a realization that we need to improve our assessment of PD patients beyond the UPDRS (unified parkinson’s disease rating scale) and Hoehn & Yahr scales. Sure the motor symptoms are a big component of our disease and are ever present. However, the non -motor issues and the emotional burden placed on by our disease is something we as physicians do not really take much into account.  For instance of medication, I might actually be considered normal on my UPDRS or stage 1 with H&Y scale making someone think there is no disability or need to change treatment. Yet, if you ask my friends and family what the impact of my disease is on my life I guarantee it won’t be trivial.

We don’t talk enough about how often we are missing things in our daily life!

We as physicians need to start asking open ended questions like in the past month have you not only missed work due to illness but did you miss out in other good things like spending time with friends, husband family? Were you able to do not only the things you are responsible for but what about the things that bring you joy like going shopping or to the movies, etc.?

I think perhaps is time we begin using Quality of life scales to personalize treatment and adjust treatment plan.  I think getting people on right regimen makes a huge impact on quality of life to make living with Parkinson’s much more manageable

For instance, someone may say they only experience 1-2 hours off (counting only severe offs yet not able to do normal things like keeping appointments); this person would require different treatments than someone else who can do everything they want when they want except for those two hours. We need to realize that although motor symptoms can be extremely tough and an obvious problem to contend with, it is the emotional burden which runs deeper than imagined for most of us and can impact the quality of life to a greater extent than the motor symptoms. Many people with chronic illnesses like Parkinson’s disease become withdrawn, isolated and avoid social settings for fear of what might happen in if suddenly they go off, become dizzy, nauseated, off balanced, fall, faint, lose control of bladder etc.

So besides talking to our physicians about the REAL needs, fears and limitations. How often did we self medicate? How often did we canceled or missed out on social activities? Besides getting our medications adjusted to help with the causes of why we are missing out on things (i.e. side effects of medications, dyskenesias, non-motor symptoms, generalized fatigue, etc.) we should also ask for counseling or behavioral therapy to help us and our families deal with and cope with our complex life style which often takes back seat to having and dealing with PD in its multifaceted presentation.

Keep a diary of the things you missed or had to cancel because of PD to show your doctor so he/she can discuss treatment options to get you feeling better and enjoying life anew!!

@copyright 2018

all rights reserved By Maria De Leon MD

caregivers and chronic illness, chronic illness, Dealing with Grief/ loss in PD, parkinson's awareness month, parkinson's disease

Dealing with end stage Parkinson’s disease- the long goodbye: By Dr. De Leon

“..Before the prospect of living less than everyone else, I have decided to live faster, more fully…” Alexander Dumas – la dame aux Camilles

 

Lately, I have been thinking about this subject quite a bit especially since one of my dearest friends has been diagnosed with terminal disease. For the first time this in my life, I have found myself to be at a loss for words. This is saying a lot for aside from being a physician who has delivered bad news a thousands of times, I have also cared for many loved ones with terminal illness. I think the reason I am having such inner turmoil is because she is my own age with a child who is my daughter’s age aside from being one of my best friends. I am not ready to let go. Especially since only two weeks prior to her diagnosis we had made so many wonderful plans. Of course visiting her at MD Anderson also conjured up a whole host of emotions. The smell and place reminded me of my first patient in this same hospital I had to pronounce dead in front of her family while I was an intern. What made it so difficult at the time was the fact that not only was she Hispanic but died of melanoma which runs in my family plus she was my very own age at the time 26.  My heart breaks even now remembering her and then thinking of my friend.

This situation made me think of everyone dealing with family members and patients themselves who are terminal. How do we deal with them? What do we say? How do we treat them?Image result for image of terminal illness

As far as Parkinson’s is concerned not much literature is available on the subject as some of you have inquired from me recently.

I decided to write some points on the subject. Although Parkinson’s is no longer considered a terminal illness as it was once 30 years ago. The new advents in treatments have greatly improved our quality of life yet; in many parts of the world where medicines are harder to come by it may still be considered a death sentence. Nevertheless, in most cases PD is a long goodbye. Subsequently, we are forced to learn to “live with death” in our lives for an extended period of time. Thus, the ways we deal with death and terminal illness in our society have changed dramatically since a great deal of people live with chronic progressive neurodegenerative illnesses. Unlike the cases when patient died suddenly – the patient him or herself also have to learn to grieve while still alive and fighting to hold on. This can cause a lot of stress in the family particularly because grief is a family matter.

Dealing with our own loss can be difficult enough as I am finding out. Moreover, thinking on how to comfort those experiencing grief first hand can be that much more daunting.

First, for the caregiver.

You might be experiencing trepidation in how to proceed with the relationship once a loved one has entered the end of stage of the disease. Try to remember that your loved one is still the same person even when they have dementia and can no longer communicate. Underneath they still are the ones you love. If they are still lucid try to focus your relationship on one another rather than on the disease. Don’t focus on unsolved issues. Focusing or bringing up these to light is not going to help the relationship any rather make it more challenging. Don’t underestimate the power of your presence. But never try to be a counselor. Be a listener only.

Secondly, the other thing I learned through the years but especially while taking care of my dad. Dyeing is NOT a science. There is no time frame nor right or wrong way to die. I so wanted my dad to talk about his life, what he liked and did not like. Plus wanted any advice, pearls of wisdom he could share with me; but he never could do this for me. I suppose it was too painful for him to express and I too incentive to his feelings being selfish wanting to know more about his life before he passed.

When it comes to dying, some people accept it and come to terms while others may choose to live in denial. Allow them the freedom to choose. Plus denial is a natural self-preservation mechanism because the alternative is too frightening to cope with. As long as the denial is not causing harm it should not be contested. They might be afraid of letting family down, losing control of independence, bodily function etc. Offer spiritual support but as I found out with my loved ones sometimes it is easier for them to seek support outside of the family. Offer to have spiritual counselors come by regularly like ministers, priest etc. My grandma really enjoyed this time even my dad to a certain degree especially when other congregational members came to sing.

Should we keep vigil by their side when time draws near? Get your cues from your loved one. Ask what their desires are. Being near a loved one as they are dying although painful can be a very beautiful sacred experience increasing your inner strength, even though at the time you may feel helpless and powerless. It also allows you to give your loved one permission to die if you sense resistance on their part because something seems to be holding them back. For instance, when my dad was in his last breaths (agonal state) I could sense his hesitation to let go because he was worried about mom. I told him it was ‘ok’ to let go. I emphasized the fact that we loved him very much and would see him soon and that mom was going to be fine with us. He passed away that evening.

But keeping vigil can be emotionally and physically exhausting.

Remember to take care of yourself as well. Take breaks and don’t forget to eat and drink fluids. You don’t want to end up in hospital yourself. You may choose to have love one die at home, hospital, hospice or nursing home. You and loved one should decide ahead of time. Both my dad and grandma wanted to die at home.

Third, is ok to allow yourself to grieve which usually comes in waves of emotions. Sometimes you may start grieving as soon as the end draws near other times may not occur till much later after their passing.

Guilt is a normal real part of grieving. I also experienced feelings of guilt after my grandmother’s passing, questioning if I had done enough. I would second guess my decisions wondering if she might have lived longer if I had kept her under my care the last couple of weeks. Remember that these feelings too shall pass. If the grief or the guilt is not seeming to go away make sure you avail yourself of a professional grief expert to help you heal.

So my advice is:

  • Laugh often
  • Really listen
  • Try to keep life as normal as possible
  • Provide genuine support
  • Make a wish list
  • Help maintain their dignity
  • Provide physical contact as much as possible
  • ask for specific needs which might require assistance

#Unite for Parkinson’s this coming month of April!pdftulip

 

sources:

http://www.nhs.uk/Planners/end-of-life-care/Pages/coping-with-a-terminal-illness.aspx

http://www.hospicenet.org/html/help_yourself.html

chronic illness, parkinson's awareness month, parkinson's disease

Parkinson’s Disease: Impact on Family-by Dr. De Leon

“Friends LOVE through all kinds of weather, and families stick TOGETHER in all kinds of trouble.” ~Proverbs 17:17

A Midst increasing focus on women’s issues in PD, I and others are beginning to realize the burden of living with and having a chronic illness like Parkinson’s can exact on the family nucleus. Sometimes the burden can extend to close friends, co-workers, and others in the circle around the nucleus.

How then, do we decrease the burden?

The first order of business for me as a neurologist and Parkinson’s patient is advocacy. Education is the single most important factor to decrease the load of the family and of society by raising awareness of the issues which require a not just a holistic approach; but a timely one as well.

First, we must understand the symptoms of the disease (sometimes the rest tremors may not be present from the get go; yet if there is family history of PD, or history of tremors in you, or have any number of symptoms including but not limited to constipation, loss of smell, depression, bladder issues, gait difficulty, stiffness seek advice of a physician asap)  in order to get an get early diagnosis followed by early treatment. This latter part cannot be underscored enough in my opinion. EARLY treatment DOES improve quality of life in the present as well as in the future!!!

Second, once diagnosis is establish and medication initiated it is important to evaluate patient in his or her natural surroundings. this means evaluating their role in the family as well as in society. understanding the impact of chronic illness in every individual is crucial to developing the right treatment plan. for instance, the plan is going to be entirely different if we are dealing with a young mom versus an older woman. also different from one that is employed especially if main provider versus someone that is retired. Single vs part of large family with good support system. Therefore, it is our duty as physicians to recognize the wide and variable effects of having PD to help you the patient build tools to best manage your situation and help you and your family cope with the illness.

Third, one way I recommend that you help your neurologists make the most informed decisions on your behalf is to have an open line of communication. after all, communication is a two-way street. Your physicians unless they have an illness themselves as I do or have had to deal with someone chronically ill in their family, they might not know the ins and outs. this does not mean they don’t care but rather lack of experience in the matter. Therefore, I suggest that at least once a year if not twice you make an appointment with your physician to discuss social needs only. This will go a long way in building a rapport with your doctor as well as getting the right treatment plan for a more fruitful life. understanding your social situation along with any co-morbidities like having migraines, high blood pressure, pre-existing depression are the pillars to a comprehensive approach to PD patient care.

The goal is to be present in your life living it fully. Sometimes we think we are coasting along just fine handling our own problems but we may not realize the impact on our family and our friends, etc. I am sure you have seen the commercial for asthma in which the woman says I rarely need inhaler rescue and they show her whizzing and being short of breath most of time. Same for us. I know that for me this true. 

How many times in the past month alone have you been unable to keep your plans expected because you were not feeling “right?” There was a time I became the most unreliable person because I cancelled more functions then I attended. How many times have you missed family functions or activities or cancelled the vacation you have been waiting on for months because you could not travel?

If this strikes a cord with you then it has been happening way to much. you need to sit with your family and alone and write down the reasons then take to your physician to work together on a solution. Is it because your depressed, in pain, fatigued,  embarrassed of being seen in public? Most issues have a solution, don’t wait.  if you live alone and cant afford to go out talk to your doctor about meals on wheels, help in the house, a nurses aid and so on.

it is always best to write down wishes early on which can always be amended than to have no plan and wait for crisis to arise and no one knows what to do and you are to sick to make any life decisions.

Remember, the better you and your close family understands the disease the better handle you will have on the situation.

As a colleague once said: “without education you can not achieve proper control,” referring to treatment of chronic migraneurs. However, the principle still applies for those of us with Parkinson’s disease. Case in point, I believe one of the biggest problems in Parkinson’s disease is medication overuse. This is one of the main reason, I think patients have increased dyskenisias  as well as increased side effects. this remains a huge barrier to break because I was trained at the cusp of new medications (dopa agonists and others that have followed subsequently) coming on board which means that physicians were accustomed to letting their patients take the medication when they ‘thought’ they needed it. even I at the beginning of my practice would tell patients it was ok to take extra.. However, I began realizing that when I asked how much med they took, how often, and for what symptoms? 1) they were overdosing and 2) often times they were taking medication unknowingly for side effects of medication NOT the disease which only worsened when took more like dyskenisias!

Therefore, my recommendation is keep a diary when you take extra medicine, the amount, the name, the reason, and what happens when you take it ..this will be a much better method of helping your physician track your symptoms and make appropriate adjustments. My philosophy is small amounts of various types (agonists, MAO inhibitors, COMT inhibitors, cholinergics, along with dopa) evenly spaced works so much better for control of side effects, mood control and decrease incidence of motor fluctuations which in turn will lead to a less burdensome life on others.

EVERY DAY IS A FIGHT. I am a Parkinson’s WARRIOR!

caregivers and chronic illness, chronic illness, parkinson's awareness month, parkinson's disease, Parkinson's Health

When Roles Change-By Dr. De Leon

As we continue to raise awareness for the nearly 10 million people suffering from Parkinson’s disease worldwide, we must not forget the unsung heroes who stand by our side day in and day out.

There is no doubt that caring for a Parkinson’s person takes an entire village…

The care partner who maybe a friend, spouse, or loved one is an integral and vital part of the team. However, as the days and years follow the diagnosis of a loved one with this progressive neurodegenerative disease, the caregiver him or her is faced with challenges of their own.

Often times these people have the task of adjusting to a new role of supporter which requires a lot of flexibility and is no easy feat. This shift in role or expectations can leave everyone especially new care taker to feel unsure of the future, expectations of others including patient leading at times to feelings of isolation and frustration.

So here are a few tips I have learned over the years in being a caregiver and watching many families struggle in the care of their loved ones with neurological chronic illnesses.

Important to recall that the shift in responsibilities can take many forms. For instance, I have known many couples in whom the primary bread winner was the one that got diagnosed with PD subsequently leading to disability and loss of employment which can put a significant amount of strain in an already tense situation. This may require the spouse to get an outside job or new career to be able to provide for family but now they are doubly tasked by not only having to provide financially but also emotionally.

It is important to engage the whole family to avoid burn out-children if they are adults can help to care for the sick parent while the other one works. They may help around the house with chores or providing meals. Close friends and siblings can also be engaged to help out in the care of a loved one.

The most important thing to remember as you navigate the uncertain waters of your new role as caregiver is to maintain your sense of self – and not get lost in the shuffle or chaos that may at times accompany living with someone that is chronically ill.

 

  1. Don’t expect perfection or to know everything. Allow room for errors- taking care of someone else it’s a learning curve just like being a new mom. Make sure to pace yourself. Be open to the experience even if you are not naturally inclined to being a caregiver. Remember, “All roads lead to Rome,” meaning there are many ways to accomplish the same goal. Find what works for you and embrace it.
  2. Find value in your new role. Don’t look upon the experience as an obligation. This is a sure way to fail. It’s all about the attitude. We may not be able t change our situation but we can certainly do a lot about how we tackle the challenge. Remember, to use your own brand of pizzazz to make caregiving your own forte. You have lots of talents and skills put them to good use. For instance, when I took care my grandma I could manage her medications best being a doctor and coordinate for her special needs to be filled by working with other ancillary health staff.
  3. Don’t go at it alone. No one is an island. Make sure to ask for help from your health staff, social workers, religious leader, friends. Try to connect with others undergoing similar situations to avoid isolation- attend support groups. There are many organizations that can help. Parkinson’s team, pdf.org, caregiveraction.org to name a few.
  4. Don’t forget to smile and be yourself. Smiling decreases stress levels and attracts others to you. Draw on your past experience as a source of strength along with prayer and faith.  Look this as a new opportunity for you to grow and develop as an individual. Don’t stop dreaming and making plans for the future. Even if the situation you are in now is not what you would have chosen, taking the new role wholeheartedly with reckless abandonment can prove to be a rewarding experience with lessons that will last a life time that can be passed on to younger generations. See this as an opportunity to get closer to the one you love.
  5. Most importantly, keep in mind that this too shall pass!!! Enjoy your loved one while you have the chance often times they leave us too soon.
chronic illness, parkinson's awareness month, Parkinson's Diagnosis, parkinson's disease, Parkinson's Health

Make the most out of your health team: by Dr. De Leon

As we continue to raise awareness for Parkinson’s and work together to #EndParkinsons, there are a few things I like to talk about. First, in order to have the best outcome with lower disability while living with PD is having a team of health professional to help guide you. The quaterback should be your neurologist preferably a movement disorder specialist or minimally someone who deals with Parkinson’s disease on a daily basis. However, having a great team at your disposal will be of no use if you don’t make most out of  your team. Yes, this means going to the doctor on a regular scheduled basis not just when we feel like it.

I know some people advocate patients having complete autonomous control of their health which includes choosing when they need to go or not to go to the doctor. We need to have both – we must be able to have accessible doctors when we need them as well as follow their scheduled appointments. I know having a chronic illness especially when not well controlled makes it extremely painful and tiring to continuously visit your physician and other health provides, to say the least. Yet, this is the time we need them the most.

As a physician and patient, I more than most understand both sides completely especially how expensive, time consuming, and down right difficult it is at times to see your physician. But, I also know that we even as a physician are not the best judges of what is going on with us and we need an objective opinion or set out of our situation to see the whole picture clearly. I think this is why sometimes we end up hospitalized, in the ER, or having more side effects than we should.

For instance, I am sitting here with walking pneumonia and unable to talk on a boat load of medications having thus far avoided hospitalization because serendipitously I was diagnosed in time, all because I am schedule to travel to be guest speaker. If I had not had commitment of speaking engagement I would not have been so forth coming in going to seek medical attention and probably I would have ended in hospital.

So, if you are like me and is having now problems but just had an appointment less than a week ago or not until 3 months down the road, what do you do?  A few years ago, you would just have left a message and wait patiently by the phone or perhaps had to go to ER if symptoms bad and no qui response from the physician/nurse practitioner etc.

however, we are living in a social media age. Email, Twitter, text messaging, FaceTime and patients portal are just a few of the methods available for prompt communication wih your providers. They can also help coordinate care and dispel concerns. Plus, you will have the benefit of having a permanent record of the exchange. However, using these methods requires some saviness on your part.

first, you must discuss with your providers what is their preferred method of communication. For instance, I can call or text my neurologist anytime I need. Some prefer to have their nurse or staff sort through messages.

next you need to be aware when or how often they check these messaging devices. If they only do once at the end of day- especially if they do less frequent you might need to still call the office as I do when I need something answered more promptly.

of great importance is knowning your providers emergency protol..which at least in this country usually involves dialing 911 first.

If you happen to live far away from your physician especially f in another state or country…discuss tele medicine or use of skype as communication.

Once, you decided on form of communication – the most important thing is sending a concise message focusing on a clear question or issue. Let them know if you need a response by a designated time and always put a subject line when sending email or text. If sending copies of other physician reports etc make sure your links are correct and go directly to subject  matter .

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

The perils of traveling when you have PD:by Dr. De Leon

As I have been traveling to promote my book and women in Parkinson’s issues, I am reminded of some of the perils of traveling which can make anyone a bit discombobulated but for those of us who suffer from a chronic illness like PD it can really throw us for a loop.

I absolutely love traveling and I am absolutely thrilled to be feeling so much better to be able to do this on my own after having to depend on someone for a while. However, I am reminded of my illness each time I leave my home by the number of medicines I have to pack in order to be able to enjoy my travels. It is sad that packing my medications takes me twice as long than actually packing my clothes.

The first thing  we have to keep in mind when we travel, especially if going across various time zones, is the time changes when we are trying to keep up with our medication schedule. I find it a lot easier to go west than east. What I do is I continue to take my medicines as scheduled through out the trip and when I arrive I switch to that time zone and then proceed to take my medications on the same schedule (meaning every 6 hours and so on) – however, we must be aware of the time it has actually passed ..make sure you maintain the same hours between dosage so if you just took a medicine and arrived and now is time to take another medicine because it is noon for instance don’t double the dose wait til next dosing time ..but if you took medicine 5 hours ago and now new time zone indicates that you will have to wait another 3 hours but you know you take your meds every 6 hours take the medicine within the hour and adjust schedule… Do not suffer …and always keep medicines handy in your personal belongings and within your immediate reach like in a purse and carry water with you to facilitate intake of pills. I always keep my medications in my purse in a pill  box. Within this box, I also carry prn medications..in other words medications I don’t take on a daily basis but might need especially when traveling or sitting for a long period of time such as nausea medications, pain meds- like Tylenol & Motrin, migraine pills, and muscle relaxants.

Try to get seating with extra leg room and do stretch exercises  while sitting every hour…stretch your neck, legs, back, and feet. You can do small circular motions of neck and limbs including hands and feet for five minutes…walk about if you can. Also, if you tend to swell, like I, do when sitting you might consider wearing Ted hose or support stockings to avoid deep vein thrombosis (DVT’s) as well as improving circulation and decreasing edema.  Conversely, don’t wear tight socks that only go to your ankle- this will only worsen swelling rather use diabetic socks.

Since it is hard to take diuretics when traveling to decrease swelling, we must try to eat naturally diuretic foods like cucumber, lemons, tomatoes, and drink plenty of water especially if you are going to be out on the sun -need double amount of fluids. Drinking lots of water can actually help flush  all the toxins out and is the most effective diuretic. Another way to eliminate fluid build up in your body naturally is to drink cranberry juice, or add cucumber  or lemon wedges to your drinking water..of course any caffeinated drink will help to get rid of fluids but these will only dehydrate you in the end so not as healthy and do not recommend if traveling  for long distances. Another food which has lots of natural diuretic effect is oats. Go ahead and have an oatmeal bowel before traveling or in the mornings while your traveling, not only will this help get excess fluids but will promote better digestion.

Drinking plenty of fluids also helps to improve digestion and decrease constipation which also makes us feel bloated and causes swelling. Because we sit so long when traveling, the natural peristalsis of our bowels decreases even further. Now compound that with medication intake  side effects and PD itself and we are one miserable uncomfortable person with bloating, gas, increase nausea and poor absorption of our medications making them less reliable when we need them the most. I recommend taking ‘gas- X‘ or some equivalent..try to eat light like yogurts and take a probiotic capsule to stimulate  proper digestion since I have found it extremely hard to take laxatives when traveling especially if have a packed schedule.

In flight or on your trip you can also drink Sprite, ginger ale (this also aids with Gi upset and nausea, plus ginger is a good diuretic). Eat dry fruits  and crackers ..I like  to carry with me ‘thin addictives‘ they make a great snack, easy & convenient to carry plus they have dry  fruit and nuts to give you energy. If you are completely bloated and feeling constipated do a light liquid diet the first day  when you arrive at your destination. Although, you will certainly need a nap after you arrive, if possible you should continue your exercise routine there- sometimes hard to do if are speaking or are sight- seeing, good thing is that usually sight seeing entails a lot of walking so you will have plenty of exercise). but don’t neglect your sleep..of course the sleep may be a bit messed up. in order to avoid jet lag carry melatonin 6mg – 1-2 tabs a night.  when you are on vacation especially if at a tropical island you will be tempted as I have to do as the locals do and enjoy some nice alcoholic beverages with a little umbrella. however, we must be mindful of our alcohol intake for several reasons.

1)  initially it can make you sleepy after a few hours it becomes a stimulant disrupting your sleep wake cycle further and making you more lethargic and fatigue.

2) it is extremely dehydrating.

3) can worsen REM behavior

4) can interfere with your medications

5) increases swelling

When you get to destination and en route eat plenty of vegetables like carrots, asparagus, tomatoes, beets and celery which also are natural diuretics. ( I emphasize the diuretics because all of the Mao inhibitors,  along with the amantadine and dopamine agonist cause a lot of fluid retention especially in us women). The above foods are also healthy and can cause some slimming effect especially oat consumption. Did not our mothers tell us we are what we eat? Seems like there is a lot of truth behind this saying…Even before trip should avoid salty foods and no high fatty meals in transit especially if crossing several time zones.

I have learned these perils the hard way  making me look like a 9 month pregnant woman while traveling because I am unable to take my Linzess, & my diuretic pills because I am on the go and don’t want to have an accident or be detained every few minutes looking for a bathroom worst sometimes is hard to keep a eating schedule as I would at home  one thing we must always remember is that WHEN we eat is as important for us living with PD as WHAT we eat. so next time you are packing your suitcase getting ready for a travel adventure keep some of these points in mind to avoid the perils and focus on the FUN & Joy of it all!