The cost of Parkinson’s and other chronic illnesses…

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Although, fortunately the new health reform bill was turned down last night we as patients still face the uncertainty of what the future healthcare system will bring reform will bring. Thus, we strive to have members of congress understand what it means to live with a chronic illness and deal with the financial burden it places not just on the patients and families. More importantly, society as a whole can suffer if there is no assistance for the growing number of people living longer with chronic illnesses like Parkinson’s and Alzheimer’s, and cancer to mention a few. As I give thanks to God for the miracle of modern medicine and His Grace which has brought healing to my best friend, I reflect on the issues of healthcare. And as she begins her slow recovery from recurrent metastatic stage 4 cancer which was wide spread, I ponder not only on the toll the illness has left on her body, her family, the relationships but also the enormous financial burden it has placed on them after 8 months of hospitalization, numerous bone marrow transplants, labs, testing and the slew of chemotherapeutic agents not counting the number of specialists and other ancillary staff.  The toll that the cost of medicines takes on a family or individual can be insurmountable. Unfortunately, this is also a place where few people ever come back or recover from. Not only is the sudden realization that our health is not under our control but the daunting reality of having to live a progressive illness as many of us like myself lose their livelihoods and ability to continue working can be far too overwhelming.

The grave reality is that financial factors play a major role in patient’s use of medications and subsequently sadly the patient’s outcome with a disease process. I have seen this first hand as a patient, doctor and caregiver. Sometimes, we don’t think about the financial issues at the onset of illness since our priority is to get well; but as the disease progresses and the time from diagnosis extends, this is the most critical factor in a person’s long term outcome for which many of us are ill prepared and as physicians don’t provide adequate guidance and support. I summit that low incomes and poor finances along with lack of access to medicines and treatments is the number one cause for patients and families demise and dissatisfaction with disease rather than the lack of treatments. I have heard time and time again from both patients and doctors the frustration in their voices in regards to lack of coverage of much needed medications. Unfortunately because always have to revert to the “cheaper” treatments the options become quite limited and not always offer the best outcome.

As I prepared another talk about the 200 years of Parkinson’s and the latest discovery and treatments options I was reminded by the people in the audience to whom I have addressed in past conferences. Most elderly, Medicare on fixed incomes who cannot afford the luxury of paying  high premiums for newer medications even if they do promise  to be more effective, with fewer side effects or prolong quality of life decrease disability and so on.

Looking at other patients with chronic illnesses, especially cancer patients are at risk of filing for bankruptcy due to severe financial burden but what is most interesting is that those who file for bankruptcy in context of chronic illness are at greater risk for having an early demise. Un fortunately, I have seen it firsthand particularly those who are young and don’t have the financial stability that an older person might have from years of productive labor hence are more likely to forego treatments or seek alternate remedies as in the Hispanic communities because of lack of monetary resources and lack of access to health care because of poor or no insurance coverage.  And even when the chronically Ill are over 65 and on Medicare, the restrictions placed by an outside third party who does not understand the intricacies of a complex illness such as Parkinson’s can tie the hands of the healthcare practitioners. Forcing patients to use less effective treatments or older treatments or asking doctor to find the cheapest medication which in the case of Parkinson’s is levodopa/ carbidopa. Although it still remains the gold standard, 50 years’ experience has shown us that this medication alone is fraught with side effects when used as a sole treatment option increasing likelihood of dyskinesia’s and subsequent decline in quality of life.

We cannot allow our chronically Ill to continue to undergo increased financial toxicity due to lack of government support. We must stand up and ask our representatives to continue to provide support for those who are chronically ill and not remove benefits for those with preexisting conditions and improve access to healthcare especially much needed drug treatments.

Some of the questions you might want to have early on with doctor when diagnosed with a chronic illness is referral to social worker, and to lawyers  experts in chronic diseases for financial planning including long term care for spouses or caregivers.

When discussing medications ask the price but also price benefit ratio. Don’t simply ask for a cheaper drug which might result in more adverse effects causing more hospitalizations and more doctors’ visits or side effects than a more expensive medication which in the long run would be more cost effective to keep you stable and also avoid the inherent confusion many have by having different generic brands for same medicine. (In my experience, the varying colors and shapes of same medicine gets patients confused by making them believe they are different especially in the elderly).  Ask if there is a less expensive treatment option that is equally effective.

Are there any nonprofit organizations or community organizations that can aid with burden of Drug cost. Also inquire what about any drug programs from companies – different companies have different philosophies in regard to helping patients.

But also important to note that many drugs used in neurology to treat many non-motor symptoms are off label but widely accepted among the community physicians to treat certain causes but with the new restrictions of Medicare. Previously employed medicines maybe denied leaving you stranded …I am in a quandary at this point with one of my meds. Discuss with your physician have them appeal if denied or find other appropriate alternatives. Don’t just suffer because insurance denied or medicine is expensive.

Here is a foundation where some of you might find assistance Patient Advocate Copay relief -1-866-512-3861. Also look at NORD. http://www.patientassistanceprograms.com

 

@ July 2017 All rights reserved Maria De Leon MD

 

 

 

 

 

3 Rules to Avoid Confrontation with your Partner when Chronically ill: By Maria De Leon

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The good and the bad mix themselves so thoroughly in our thoughts, even in our aspirations, that we must look for excellence Anthony Trollope, He knew He was Right

Most of us marry someone who is our opposite which is what makes us work as a team by bringing different assets and points of views into the relationship. However, if 3 important rules are not established or discussed, as we get diagnosed with a chronic illness or as Parkinson’s progresses (in my case), there maybe a build up of resentment, quiet seething, and increasingly snide remarks along with looks that could kill if given half a chance.  So, instead of working as a team our contrasting ideas, and managerial styles can lead to friction which can pull us apart by making us feel alienated; as if we were working alone towards different goals.

I have seen this over and over in many patients and friends who both feel as if the other did not care when it fact both are committed to achieving the same goal- well being of the patient and stable, happy marriage. For instance, a wife after suffering a devastating illness in which she has practically been hospitalized for nearly 6 months has left her completely devoid of any will power physically, emotionally, and spiritually she is at the border of giving up from pure exhaustion. What she needs is complete rest and time to process everything she has gone though without anyone fussing over her. Yet, her fears are making her clingy and desperate putting her husband on edge. Husband recognizes depression and her need to talk to someone so he asks doctor for a counselor to help but she refuses the much needed intervention.  His managerial style is to find a solution to her beloved wife’s problem depression which is causing her to not eat and wither away more. After being by her side day in and day out through out the entire ordeal, he too is in desperate need of respite.

Sometimes because of different ways of approaching the situation it may appear instead to the other person that the partner has either given up or does not care. When these sentiments begin to build up inside of a relationship, especially one that has endured much already, is a sign that you are reaching a dangerous zone. A frustration like a patient refusal to adhere to doctor’s orders, or to loved ones wishes for their own well being as the case above, can spark a fire and unleash a fury causing at times a twenty year marriage to implode on itself. Then we are left alone to pick up the pieces  and deal with our illness at the same time through lenses of disillusion.

The epiphany– sometimes a feeling of neglect and betrayal we feel from our spouse is more about us than them. We have to start peeling the layers back one by one before we are confronted with our own insecurities and fears. This will lead to self discovery and understand what we are really upset about. Since, as Maya Angelou wrote “tragedy (chronic illness), no matter how sad, becomes boring to those not caught in its addictive caress.”  Thus, at some point in our lives we have to confront adversity all by ourselves. when you do, remember that Healing is a life long process which starts by being kind to yourself.  You must love yourself before you can love others fully. I pray that you discover this before you lose something more valuable. In our struggle to survive living with a disease or trauma which has greatly impacted our lives is to focus on the “cure” (be healed). Sometimes, sadly as it may occur with cancer patients or trauma victims, physical healing can take place only to expose our deepest darkest fears leaving us emotionally and spiritually devoid.

I have discovered that ironically the best way to heal completely and be free to live life to the fullest is to let go of the idea of finding a quick fix. The answers is not on the outside rather within us and it takes time. Many people go through therapies and treatments like yoga, bicycling, mindfulness, pharmaceuticals, acupuncture, etc. as if by partaking in these we will eventually reach a point where we can say I am finally – completely healthy and cured (from whatever ails us)!

Not so. This is not the end of the world or us for that matter. Not only is it okay to not be perfectly healed since it reflects life as it truly is- imperfect. We are a work in progress.

Instead on focusing on the bad- focus on the good and learn to compromise. Learn to let go of resentments and things that don’t nourish the soul, give you joy, or strength.

Remember, when dealing with an illness like in any relationship 3 rules apply:

#1 Neither one is going to be entirely comfortable all the time–  we are all unique individuals, thank goodness if everyone was like me it would be very chaotic. The pendulum is always swinging back and forth in any good relationship- is a give and take – if one person is always in control then there are bigger issues with poor boundaries that need to be addressed.

#2 Decide upon a philosophy to tackle the illness – this does not mean you are not free to make decision as the situation arises on the spare of the moment -simply means you have an agreed upon common goal-

#3 There can only be one driver at a time– I am sure you are all familiar with the saying “too many cooks spoils the broth.” But, in order to enjoy the drive whatever the scenic route may be, there must be trust that the person in charge of steering will get you to the right destination safe.

Now, you can start living life with the fullest not dwelling on the past, focusing on the future but living the here and now. embrace life do things because they nourish you, they make you a better person not because you are trying desperately to be healed. always be grateful for what you have and the people around you who are willing to stay by your side and support you and share your journey victories and defeats.

Have a blessed week everyone!Image result for Dancing Quotes About Life

Sources:

Spiegel Amy, “Letting go of Perfect: women expectations and authenticity.” Foreword Smith, Angie. B&H Publishing Group, Nashville,TN  2012

Harvey, Cig  (Aug. 2017): “Let it Go.” The Oprah Magazine, Vol 18 (8): 92-103

Copyright@2017

All Rights Reserved Maria De Leon

 

Fashion & Chronic Illness: Maria De Leon

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Fashion is a form of art. It is an outward expression of my inner self.  Just because  I have Parkinson’s and have had cancer, on more than one occasion,  does not mean that I  have to abandon my sense of style and neither should you!

Image result for images of quotes on art and fashionFashion is the most powerful art there is, it’s movement design, and architecture all in one. It shows the world who we are and who we would like to be.” Blair Waldorf

Just like Coco channel, ” I don’t do fashion …I am {and make my own} fashion.” however, when you live with a chronic illness like PD where sometimes there is not enough energy to even get dressed or get out of bed being stylish and fashionable can seem a bit trivial.

But, I say is not because when we feel the lowest that’s when we have to mustard all the strength in the world to paint our canvases that will shout without saying a word…I am still me and no matter how bad it seems I will not be defeated!

Ralph Laurence said it best, Fashion is something that comes from within. are we in the game or are we out? Will be surrender to live in a constant state of hopelessness and oblivion with our stretchy pants and pj tops or are going to be women who will find a way to rise pink boxing gloves in hand?

This does not mean you have to spend a fortune or dress up in formal apparel, it simply means that no matter what you will paint your own destiny with the things that make you who you are.

If you can’t do your lashes get fake ones cost very little to put on  and they last 4-5 days and you will feel fabulous. If eyeliner is hard to do, consider permanent eye liner. Get thick mascara brushes for lashes which can be applied easily in one stroke or vibrating brushes (Lancôme) which will help with the dystonia and tremors if fake lashes are not your thing.

God knows that taking a gazillion medications wreak havoc with our skin, hair and nails. when these look bad we tend to feel more self conscious and perhaps it might even aggravate our depression. But, doing our nails especially our toes can be more than a challenge. First, we can’t always easily bend to apply nail polish to our toes due to the stiffness.  If by some miracle we are able to, the tremors and dystonia make the paint brush strokes look like those of a 3 year old. Then if we manage to paint our beautiful little toes, removing the darn nail polish  can take an act of congress. My hands cramp and twist just trying to remove polish off one toe which is a work out in and of itself. Now that summer is here, we certainly don’t want to go out to the beach with our toes bear and poorly manicured, I know I don’t. Especially, given the fact that the medications can make our toe nails brittle and discolored on top of bendy twisty toes. I choose to put my best foot forward and splurge for a good pedi -cure with a good massage to the achy feet and legs. of course, you may choose traditional colors or even a bit of whimsy like I have this summer …going for some watermelon toes or a rainbow of pastels.Image result for watermelon toenails

But, if you prefer to do it yourself. There are a few options. You may wish to buy fast drying gel polishes which look great even if you mess up some plus they last longer ..but make sure to buy gel polish remover so you won’t struggle so much. Also because we are more susceptible to other illnesses when we have a chronic disease avoid using artificial nails which trap bacteria and can lead to fungal infections. Look  for water based polishes which are non toxic and  non- flammable-especially great if you will do some traveling this summer.  you may also wish to purchase those strip nail which may be fun to play with. you simply have to cut/ trim to fit your nail.Image result for strip nailsImage result for strip nailsImage result for strip nails

If you want to splurge a bit and have your nails look great for a longer time, consider doing shellac – comes in a rainbow of colors, which I love. But, under no circumstances should you file your nail bed before applying gel polish for shellac because it will destroy your nails for months. I just had mine done for the summer. Having manicured hands and toes makes me feel special and “normal” not like a chronic illness person.  This year I went for patriotic look -(sorry, a bit blurry)

nailsHowever, I would not recommend doing this method more than once a year. This requires the  use of UV light and those of us with Parkinson’s disease are more prone to having melanomas which does not exclude the nail beds. They do take more time to remove- but if you soak with non-toxic gel nail polish remover then place a cotton soaked in polish remover and wrap with foil for a few minutes, this will peel off easily. make sure you use vitamin e oil on your nail beds afterward and don’t forget to moisturize your hands nightly.

Now, that you are feeling almost human again having had a nice mani and pedi go out and frolic about and soak those sun rays which are full of vitamin D. But, while you are out there showing of your own personal style don’t forget the heat can be brutal for those of us with chronic illnesses. make sure you stay hydrated remember that even a tiny amount of liquor if you are craving for a margarita with a little umbrella can seriously interfere with your medications especially if you are tired,  and dehydrated as it did me the other day. Thank goodness for mom’s who are around to help out in times of need. A tiny mango margarita with barely a touch of alcohol did me, on my birthday, making me feel dizzy and putting me to sleep for the rest of the day. Although, the saltiness and coldness of it tasted good, the after effect was not worth the trouble. Guess no more celebrating for me. This 4th of July is water and sweet tea!

So as you enjoy your favorite activities of the summer – don’t forget to wear plenty of sunscreen, sun glasses and something red if cant think of anything else to wear and above all don’t forget to Image result for fashion quoteslove,

Parkinson’s Diva

Happy Fourth Everyone!!!!

copyright@2017

all rights reserved by Maria De Leon