Setting Appropriate Boundaries when Living with a Chronic Disease like PD- by Dr. De Leon

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Aside from spending time visiting my many physicians this last couple of months and sleeping incessantly, which could be misconstrued as a form of hibernation, I have begun a women’s class on boundaries. This class has been fun and challenging at the same time particularly in regards to the physical realm.

Of course, I am always thinking about the relation and interchange of one aspect of my life to another. As I have been preparing lessons for my students, I realized that these same rules of good boundary setting could be applied to those of us living with Parkinson’s disease.

If you lived long enough, you have undoubtedly understood the importance of having clear boundaries (limits, clear likes and dislikes etc.) in order to have a healthy, happy life. This means knowing exactly when to say yes to things and when to say no. For instance, many of you know how involved I am with the Parkinson’s community thus I had been looking forward with great anticipation to traveling to Portland for this past week’s World Parkinson’s Congress. I had my room and flight reservations all squared away since the early part of the year. Then my health took a bit of turn …as I began to feel better the question was “should I go or should I stay?” (With that little giggle running through my head). Needless to say that during the moments of feeling well, I was completely ready all for another great adventure which included meeting so many new and old friends.

Yet, I had to be realistic about my health. In the end the toll on my health, assuming I were better to fly such a long distance, would not be worth the experience. Learning to say ‘no’ to the seemingly good things that can potentially be harmful in the long run is an example of having clear defined boundaries. Plus had I gone, I would have missed all the drama and excitement of my daughter being asked out to her first homecoming dance. These moments are priceless.

Seeing the excitement and drama unfold throughout the week led me further to think about how we cope and live with PD particularly in the context of raising children and teaching them appropriate boundaries.

We all know that having kids is a difficult thing – each time you think you have mastered a particular situation there comes a curve ball. We all worry about raising well- balanced, happy, self- reliant individuals. Those of us with chronic illnesses like PD know that the job is even tougher when we don’t even have enough gumption to shower or get dressed some days.

What worries me is that sometimes especially because of our illness and fluctuating symptoms we give mixed signals to our children making them confused due to inconsistent limits. One minute we may require them to grow up faster act like adults, be the parent, the caregiver, and other times to simply be a loving child. I ponder about the influence we might exert on our kids as our mood see-saw according to our pain levels and other motor & non-motor fluctuations. Are we being loving and tolerable to their needs one minute and harsh or overly critical the next?

If the answer is yes- we may be guilty of inadvertently causing our children to grow up being guarded.

  • In addition, specific traumas like dealing with a debilitating illnesses such as PD may lead to a questioning of 2 basic principles needed for kids’ essential growth into healthy individuals.
  • One is that they have control over their lives
  • Two that the world around them is a relatively safe place.

If we are not careful, they may grow up feeling these essential foundations are distorted or shaky and thus feel that they have no say in their life’s or situations. The same thing can happen to some of us who live with chronic disease in context of being able to advocate for ourselves. This feeling of lack of control can lead to poor health care and a less than optimal quality of life.

There are two important rules to healthy boundaries that will help us experience our world differently especially when we seek care for our chronic diseases.

  1. -responsibility
  2. -respect

First, don’t put up with doctors or healthcare professionals who are jerks because they don’t offer respect to others while commanding it themselves; but remember that we as physicians are human too. In all honesty most of us are really trying our best and want to help. However, in these last few weeks as I became more frustrated after seeing several new physicians, I had to take responsibility for the way I was feeling. I had to revert to my role as a doctor to remind me how I it was that I felt and treated chronically ill patients (those of us who not only have an extensive medical history, long list of medications with an equally long list of physicians and specialists they have or are currently seeing).

Although, I considered myself to be better than most at dealing with patients with chronic diseases partly due to my own personal temperament- thriving on challenges and solving difficult puzzles. Yet, even I remember being extremely frustrated at some occasions with a couple of Parkinson’s patients whom I could not make better try as I might. This frustration and powerlessness sometimes related to patients as if I were angry or uncaring. At other times, it was difficult to convey to patients who wanted a quick response (for it’s our human nature as well as a natural expectation when you live with chronic pain or a disease permeating all aspects of life) for which I had none. I felt that same disappointment, as I am certain my own patient’s experienced at times, over the last few weeks.

Thus, I had to remind myself that it was their first time seeing me and they did not have the breadth and depth of knowledge I possess having lived with my disease for 10 years. It is important to keep in mind that even when we see doctors who are specialized in our own chronic disease such as PD – they have not lived in our shoes. They have the general understanding of the complexities of a disease like PD but have no insight into the daily intricacies of living with it as it happened to me – is like knowing everything about living on planet earth vs. actually living here. Such was my knowledge of PD until I became a patient of the same.

I determined that people like us because of our extensive knowledge are the knives easily tear the veil unmasking the illusion of physicians being in complete control and able to FIX things (people) and cure diseases. I know what being a doctor is and know how they feel because I am a doctor 100 % of the time even when I am trying to be a patient which has been more often as of late. I know that because of my knowledge, I too scare my doctors a lot of the times. Knowing that we scare health professionals is the first step to a successful patient -doctor relationship. This is the second rule- respect for the practice of medicine. This also means don’t get easily upset if they forget some important aspect of your life because they have thousand other patients to see. Plus, they may be tired from being up all night on call or simply forget because they are human too. Remind them gently if it is important otherwise let it go.

In order to forge a long lasting meaningful relationship with your physicians. Remember respect and take responsibility. Don’t come in the first visit too strong knowing everything and demanding things. This will surely break a relationship before it begins. Your knowledge is a great asset as you build the relationship but your knowledge and high expectations on the first visit is like showing a possible new mate all of your flaws on the first date. What do think are the chances of having a second date?

Finally, as I said before never have more than three complaints at a time otherwise it will diminish the effectiveness of your visit. Do assume responsibility and ask for more frequent appointments to have your problems answered. As any relationship it is a give and take and the longer it last the more familiar the doctor will be with you and be able to ask for your input more and acquiesce to your needs and give you freedom to ask reason when they seem frustrated (which the majority of time is not related to you but rather a feeling of inadequacy on our part).

Happy trailing and pass it on for better long term patient- doctor relations everywhere.

copyright-2016

all rights reserved – Maria De Leon MD

Finding Inspiration All Around Us: by Maria De Leon

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With the new day comes new strength and new thoughts.” Eleanor Roosevelt  

 We are all planned, planted and pruned for a purpose by God.

The last month, as all of you who have been following my blogs have discovered,  I had a small set back which has led to some decompensation due to having PD as a chronic underlying illness. This is not entirely uncommon especially for those of us who are as complex as I am. But, as  bad as I have felt most of you know that I am not one to give up or just sit around ….although I must admit I have been sleeping a lot more than usual. Nevertheless, I am determined to get back to my base line and able to continue traveling and speaking so besides having a ton of doctors appointments which have required someone else to drive me in one or two occasions, I have resumed water therapy.

We have a new instructor who is simply wonderful and understands well the complexity of the body especially for those of us who have neurological illnesses like Parkinson’s disease and incorporates techniques of tai-chi, yoga, and cardio all in water settings. while doing these exercises I have discovered two things. one, that I am weaker than I thought ant two that even though I feel great while doing these exercises afterwards I feel completely wasted due to severe nausea and vertigo it triggers. However, within this same setting I have encountered several of my patients who I was not only delighted to see but also glad to see they were engaging in therapy.

One particular patient has completely inspired me to continue despite the ill effects it has produced. because I know this too shall pass as I always say but recently I heard someone say that it would pass like a kidney stone. That is exactly how I feel, slow and at times down right excruciating. Yet, my discomfort no matter how painful is nothing comparable to what some of you have endured and what some of my patients have suffered. particularly, this courageous lady who has a most severe neurological disease which has now left her nearly paraplegic with severe upper extremity tremors. But having this illness has not stopped her one bit. You will see her around town frequently in her motorized wheelchair doing for herself and others. Similarly, she is there in the pool without fail trying her best to follow the instructor. Last session she nearly drowned a couple of times. somehow I doubt that this minor things in her mind will keep her from coming back. Knowing that she has endured  for a lot longer than I have and continuous to fight daily has given me the courage to persevere and deeply admire her inner fortitude. so, when Wednesday comes I will take some Zofran prior to my exercise therapy and I will be there working at getting myself well once again and encouraging her to continue while keeping a closer eye on her so no more incidents of near drowning occur like having life guards near by and having her wear a life vest.

So you see, all you have to do is look around and you are apt to find some inspiration in your life . No matter how bad we think we might be or have it there is always a reason to go on fighting. it may take a bit longer but I know I will be among you chatting and visiting once more very soon; because in the end we are always worth MORE than we feel and there are no strongholds greater than God.

Image By Andre Kohn

copyright-2016

all rights reserved – Maria De Leon MD