“However, difficult life may seem, there is ALWAYS something you can DO & Succeed at.” Stephen Hawking
I know that many people, including myself, often can get extremely frustrated with ourselves not only for having to deal with a myriad of symptoms which often times wreak havoc in our lives; but at times we feel betrayed by our own physicians who appear impervious to our own misgivings and difficulties.
As a former physician and now chronically ill patient, I have been thinking about these issues more often lately as my disease, rather general health, has seemed to spiral downward at a faster rate. I have been trying to reconcile my own feelings of disappointment with the turn of events in regards to the complexity of my own health problems which have been compounded recently by a feeling of disillusionment with some of my caregivers.
In order to come up with sensible explanations to my sudden disenchantment with my friends, colleagues, and care providers, I had to step back from myself and try to see things objectively not an easy thing to do – I assure you.
I am most objective when I am in physician mode, so I reverted to this role and considered how I as a doctor would treat me as a patient. The fact is that all my physicians are doing EXACTLY, for the most part, what I as a doctor would do!
So, why have I felt of late that they don’t seem to care or get what I am going through?
I have heard this over and over from many of you, doctors are just not spending time talking to us about the important issues which seem to be running our lives and robbing our happiness and drying our families joy?
I am certain that at times some of my patients might have felt this as well and might have sought other physician’s care. Yet, I assure you that every patient’s well-being was at top of my list.
So why the seeming disconnect? With them and now with me- as a patient?
Well, let’s take a look at this illness a bit. Although in existence for centuries, Parkinson’s as we know it was given a formal name only a century ago. However, it took another 60 years for scientists to discover the implication of a chemical known as dopamine. From that time on until very recently the main treatment consisted only in replacing this wonderful chemical without which we can’t move, function, or even think straight.
With the advent of levodopa, patients could again move, think, dream, and enjoy life for a while until dyskinesias (uncontrolled involuntary movements) began and/or finally they succumbed to a bedridden life unable to swallow or barely move. We as doctors had completely changed the course of the disease. This was a miracle! Then came the side effects. So, I recall spending the majority of our time trying to manage dyskenesias -breaking medication doses into 1/2; 1/4 and asking patients at times to take these medications every hour around the clock- pure insanity! All in hopes of provide smoother delivery to minimize ‘off’ states.
We had no time to notice anything else. Like in a battle field where there are thousands of wounded soldiers all clamoring to be saved, the foremost importance is making sure they survive even if it means amputating some parts to salvage the whole. So we have spent the last several decades making sure people live and survive by trying to prevent falls, being bed ridden, frozen, drowning on their own saliva or having pneumonia.
No one really complained since like the movie Awakenings everyone seemed happy to be able to move once more. But life was never perfect there were other problems we physicians as well as patients were aware of but with lack of treatments for these we managed the best we could. And in reality since the majority of patients we were treating at the time seemed to be elderly (the older I get this age distinction seems to become hazier), most in fact died of other medical causes because they never had time to go through all the stages, this being a slowly progressive disease developing over 30 years’ time.
So now that we have given patients a better quality of life with the myriad of new medications and surgical treatments available to us, we realize that the care is not perfect. This is compounded by the fact that we appear to be having increased incidence in younger onset PD (this still remains to be determined). Now that the life threatening issues have been controlled for the most part we have a grand task of getting people to not just survive but actually thrive once more.
This is where we currently stand, as physicians we are just beginning to grasp the challenge of giving a person back their wholeness while the patient (me and you) realizing the enormity of our deficits want to feel whole instantaneously.
Yet, none of us has a magic one and medicine is still one step at a time (moving at times at the pace of a snails crawl) following the creed of “do no harm” first.
So I realized that instead of being frustrated I should be grateful that 12 years into a disease I am fully independent and capable of having a full life and rather than thinking that our physicians are not caring or acting fast enough for our satisfaction we should find ways to help them help us.
So, now that the mud is beginning to settle, we are getting a clearer picture of the complexity that is PD. The good news is that the majority of non-motor symptoms actually have treatments. The bad news is that we can’t fix all at one time. This means picking your battles (the 3 most important at a time) and tackling one by one. Stay in constant communication with your physician, means regular appointments every 3 months- more often if needed. Write down your problems, look for patterns, ask questions, have a stake in your illness- this is a race not a sprint. This requires a change in life style. Just because we take some pills we can’t expect to be better without us putting some work as well- like stretching, moving, sleeping well, watching what we eat, and staying mentally active. Believe you me it’s a lot of work on a daily basis, but if you want to be around ‘til the next breakthrough in science this is what we have to do.
After pondering these things, I feel much better about my care and my life. I hope this helps you as well. There is a big bright future ahead don’t give up know – give your doctors a chance – most really do care but are simply overwhelmed at the scale of the iceberg ahead. Help them chip at it for your own well-being.
all rights reserved by Maria De Leon
“There is simply no medicine that will cure what happiness can’t cure.”
~ Gabriel Garcia Marquez
In a time when marriages end faster than we can say “I do” how to make a marriage work in the midst of living with a chronic illness is no easy feat.
Establishing a balance with your partner can be a daunting task. After living with a chronic illness for more than ½ of our marriage, I have learned a few tricks to make things work better and keep the flame going. This requires a great deal of love, patience, forgiveness, and mutual respect.
We must think first of marriage and romantic relationships as an empty treasure chest. Here we put for safe keeping all our goals, dreams, desires, expectations and most prized possessions that speak of our past and our future. But, we can only draw from it what we have made a point to store like congeniality, love, gratitude…
Every relationship is made of two people- keep that in mind as you try to navigate the muddy waters of keeping romance alive when you or your partner feel like you are drowning.
The expectations vary according not only to the stage of the relationship newlywed vs. veteran but equally or even more important (to finding ways to maintain the flame alive) is the stage of your disease.
Also remember that men and women handle bad news differently. In general men tend to want ‘to find a solution to the problem’ of PD even when there is none.
If you guys recall the movie ‘Love and other drugs’ in this story of a man who falls in love with a woman with young onset Parkinson’s ends up in medical school – his way of trying to control the situation. He also insists on enrolling her in every available trial. This type of thinking can lead to many problems down the road starting from the point that focusing all of the attention on a loved one and neglecting one’s self only leads to resentment and burn out. Plus, because every person is unique sometimes less is more as in my case. I have a very small threshold for maintaining my biological equilibrium sometimes even the slightest change can lead to severe disruption and drastic consequences. Hence both my husband and I as well as my physician have learned to be very cautious and not overly aggressive in my treatment.
Similarly, when we concentrate in a single aspect of a person’s life like their illness we reduce that person essentially to that characteristic – in this case a patient.
Once your partner equates you as a ‘patient’ or person who needs to be ‘cared for’ particularly if long term, the romance tends to go out the window and many times if there are minor problems these can be magnified leading to resentment on both sides and even separation.
To avoid falling into that trap, I suggest that both parties maintain their own independence, their own goals, and dreams as long as possible particularly in the early to mid-stages of the disease when a person with PD is more than capable of caring for themselves.
If self-care is needed try to incorporate and ask for outside help from friends, family, etc. I am not sure if any of you remember seeing a documentary on 20/20 a few months ago about a couple dealing with Alzheimer’s disease. The documentary involved following a woman who had been recently diagnosed with dementia. At the beginning of the piece a few months into diagnosis of the wife, the husband was 100% committed to taking care of her no matter what and refused any time of help. However, as the documentary went on over the course of the next 5 years (not very long), the husband became more and more distraught, depressed, bitter and utterly despondent. He wanted nothing to do with her care which ironically was now the time she needed him the most. She had reached a stage of complete dependency.
Don’t let this be you and your loved one. When you suffer so does your loved one. Their well-being is dependent on your own well-being so save your energy and strength for the right time and focus and making memories together and enjoying life together for as long as possible.
After, a decade of living with PD and many ups and downs, my husband and I have worked hard at keeping the romance as well as our own goals and independence by not allowing him to become my care giver or even care- partner in general. However, there are times he has to assume this role briefly when I am facing new serious issues when I am simply unable to care for myself such as when I was facing possibility of new cancer recurrence. He was with me every step of the way not necessarily as a care partner but as a supportive spouse.
The majority of the time, I go to doctor’s visits alone or with a close friend. I don’t ask him to come with me to PD conferences or support group meetings. I encourage him to have his own support group and spend time pursuing his own goals. As with all relationships, there must be a give and take; sometimes I take care of him and other times he takes care of me.
I try to maintain my role as wife, mother, friend and lover. I understand that it is impossible to continue seeing someone as sexually enticing after spending all day or week doing things that the other should be able to do on their own such as feeding or grooming.
However, that is not to say that with each stage intimacy can’t still exists. Not only do we require as couples physical, sexual but also emotional intimacy. It is important to spend time alone as a couple doing whatever brings joy and unites the couple. Intimacy must and should be maintained even in the absence of sexual bonding. In fact as a couple grows and develops particularly in the face of chronic illness is the emotional bond that sustains a marriage or a relationship. In the face of adversity we either crumble or we become stronger. I am glad to say that in many ways living with PD has made my relationship with my spouse much stronger.
The key to living well with a chronic illness is open communication!
• Start with breaking down barriers- sexual/emotional/physical: important to recognize that sexual intimacy does not only mean (vaginal) intercourse. This is of the utmost importance because many women with PD suffer from decrease libido, vaginal dryness, and trouble achieving orgasm while men have erectile dysfunction, and trouble with ejaculation. Talk to your doctors about these issues and communicate with one another to find ways to still enjoy each other.
• Find a way to reconnect (what did you like to do as a couple prior to PD?)
• Talk to your doctor about sexual issues and problems with performance as discussed previously- there are many treatments for these.
• As a partner in the care of a loved one – try to see things from their point of view and vice versa.
• Allow for personal time and personal growth- this is a life changing disease which you will have to learn to live with if you want to be happy
• Look for new ways of doing things
• Find pleasure in simple things like taking baths together
• Spend time simply touching – power of a touch is immense- a good hug can be just as rewarding
• Find outside help to do chores
• Don’t go at it alone (recall documentary), this is a sure way to burn out and become depressed, desolate and resentful.
Just like parenting one must learn to pick the battles when to step in and be concerned and when to let them handle their own problems and issues. Pace yourself this is a marathon not a sprint race.
All rights reserved By Maria De Leon
There are many devastating neurological illnesses for which there are no cures as of yet as is the case for PD. However, the future is bright since in the last 3 decades have seen many new discoveries in the field of neuroscience which have led us to a greater understanding of such complex illness as PD. Yet, despite all the advances there are nearly 2 million people living with PD in this country. Many of whom still face difficult challenges daily due to lack of specific treatments for various PD non-motor symptoms.
Part of the problem is difficulty recruiting appropriate patients to even fill clinical trials. It is believed that roughly 80% of trials are delayed due to being unfilled while 30% never even get off the ground. The result is that lack of participants in research trials only leads to slowing down the progress towards a possible cure. For those that do participate only one in four reach completion.
The great news is that you have the power to change the future of research. Subsequently, aiding in improvement of quality of life and discovering breakthroughs from which all could benefit.
So, how can you help?
…by playing a part in Parkinson’s research. Saying Yes! to becoming a volunteer.
You can participate in research as a patient or as a control…….
Now that you have decided to take control and become a research participant, you may be asking yourself the following questions:
I want to participate in a trial but, I am not sure if I qualify?
• First, you must know that there are different types of trials. Some are only interested in collecting data via surveys etc. these often times can be done from comfort of your home. Other studies are interested in evaluation of biomarkers, genetic abnormalities, or discovering other risk factors via laboratory. These do not require taking specific medications and maybe a onetime only test as well but may have a degree of invasion in order to draw blood, spinal fluid, tears, etc. There are also those which involve the evaluation of devices for instance to track tremors, gait instability and so on. Finally, there are the drug trials which everyone thinks about when speaking about participating in a clinical trial.
• Once you have understood the different types you can then actively seek out information regarding the various types you might be interested in.
• The best way to do this is talk to your physician. Other options is contact national organizations for referral to research centers or ask your peers at support groups and conferences.
How do I approach my doctor about participating?
• Begin by asking your physician if he or she thinks you might be a good candidate for participation in a trial. Ask the reasons why or why not? If he/she say yes, then ask if they have a particular trial in mind. If they are not actively doing research would they be willing to refer you to a center that does.
• If they are not the primary investigator would they work closely with researcher and would they still continue treating you or release care to another.
How do I choose the best one for me?
• Assuming you opted to volunteer in a drug trial you must find out the stage of the trial. Is this a drug that is in phase 3 awaiting to see efficacy vs. placebo or another treatment? Or is this an early stage trial where safety and tolerability is only being addressed. Expectations must be clear from the start on both ends in order to have the best outcome.
It is important to remember that by definition a clinical TRIAL is an EXPERIMENT in which the outcome (answer) is not yet known!!!!
As I stated previously, since there are different types of clinical drug trials it would serve you well to discuss in detail with your physician what your participation in a particular trial would mean for your disease state not just in the present but also in the future. This is crucial to remember because circumstances change and disease burden also changes over time (increases) which could impede continued participation in case of a long trial or may even preclude you from obtaining standard of care later on when disease advances, such as having DBS when participated in certain gene therapy studies. Furthermore, is also important to consider that in some instances future participation in other trials may be limited.
Therefore, before making a decision you must always take into account ALL of your current circumstances be it social, financial, physical, emotional, and other comorbidities (e.g. depression).
If your health is precarious like mine you can still participate in certain types of drug trials. For instance, participation in phase 4 drug trials in which drug results are already known but require further information or its being used for a different purpose than its intended original use could be something worthwhile.
In the end, the best way to maximize your success and achieve a positive outcome for you is to consider these things before you engage in any trial:
• Consider your goals and those of the studies, are they in sync?
• Are the expectations realistic?
• Never participate to please your doctor…that will only lead to heart break when results don’t yield what you hope for….
• Consider your physical limitations and capabilities along with those of your caregiver.
• MOST IMPORTANT- YOUR WELL BEING comes FIRST!
Don’t forget research is a TWO-WAY street OPEN communication is VITAL…..let your clinician know your concerns and also what interest and issues you have to better fit a study that suits your needs…..
all rights reserved by Maria De Leon
Given the fact that living with a chronic neurological disease like Parkinson’s for which there is no cure can make any of us in a moment of desperation turn to any form of treatments and therapies which promise a cure. I have recently noted an increase of talk about this subject on social media in our PD community. Unfortunately, many good people have been bamboozled into believing the hype on social media about stem cell therapy as a cure all! The people offering stem cell therapy as a cure have prayed upon the fears, and suffering of many in our community. However, it is important for me to outline the facts and discard the myths surrounding these so called new therapies that promise so much.
Let’s first look at what are stem cells and why are we so interested in stem cells as a possible treatment for Parkinson’s disease.
• They can continue to divide for a long time
• Can give rise to specialized cells
Back in the 1980’s, there were trials in which fetal dopaminergic neurons were transplanted into the brain of some patients some of who had long lasting effects. It was then proposed that in vitro dopamine cells derived from cells derived from embryonic cells and bone marrow could be harvested to produce same effect. However, as of today, there has been no evidence that in vitro cells injected/transplanted in to animals with experimental PD can then re-innervate the striatum with dopamine neurons in vivo and give rise to a considerable improvement and recovery from deficits resembling human Parkinson’s symptoms. Furthermore, in order for the recovery to be effective one must have a large quantities of dopamine neurons which has not been feasible due to extremely short survival after transplantation.
Since, there is still so much we don’t know about this extremely complex disease, finding ways to modify it has proven to be a daunting task. Nevertheless, back at the beginning of this decade there was a small study with stem cells which showed some modicum of promise. This study used adult stem cells (these can be obtain from same person -autologous or another individual-allogenic). Both have their advantages and disadvantages.
Types of cells
• Embryonic- An embryonic stem cell is one that can differentiate into any cell type of the body this is known as pluripotent these then give rise to multipotent stem cells which can the. Differentiate into specialized terminal cells e.g. nervous system giving rise to different type of neurons
• Adult …they do not regenerate as well and if place in different environment these may or may not develop that areas specialized cells which means these cells have to be placed in basal ganglia to even have a chance …
Studies involving stem cells have included embryonic cells and placed into brain via olfactory nerve tract
The main problem is that most of the people claiming to have the “cure” using stem cells are using adult stem cells from the skin which remain as skin cells especially since they are given back as an intramuscular injection. Many times these develop into scar tissue or lipomas (fat tumors)causing other problems. It is also important to note that when receiving cells from another individual these must be matched for ABO blood type, Rho factors as well as gender. If implanted outside of the nervous system having a mismatch can result in antibody production as well as decrease in longevity of cells. However, if implanted in the nervous system because of blood brain barrier this is not an issue necessarily. However, the effects of this is not known as of yet because the nervous system also possess cells like macrophages and glia which are the brains immune system which can potentially attack these new cells.
In the study, I mention previously autologous totipotent stem cells were used.
These cells are capable of differentiating into any cell and give rise to an entire human organism. The cells were uncommitted to a particular cell type when used therefore potentially much more likely to develop neurons if placed in nervous system. The reason autologous cells are preferred as I mentioned before we would eliminate the need for autoimmune suppressants necessary in all transplantations when foreign cells used.
Remember not all stem cells are alike…although stem cell research is actively evolving and is currently a very dynamic field. Scientists have discovered that hematopoietic cells can be harnessed to develop into nerve cells. These types of cells have already been used to treat other medical problems. However, cells have to be extracted from bone marrow (-autologous). Plus it need the right location …into the striatum of the brain. Placing outside of basal ganglia will NOt produce the appropriate dopamine producing neurons even if placed in the brain much less if placed outside of the central nervous system. Things like temporal lobe epilepsy could potentially result if cells are placed at random in the brain causing migration to other parts of the brain.
In conclusion, what we want is autologous adult totipotent stem cells not embryonic or fetal to be placed inside the brain cavity meeting all these requirements makes for a higher likelihood of success although yet to be proven. Unless, you are participating in a trial meeting these parameters then you are allowing yourself to be part of sham therapies which on top of being extremely expensive could be deleterious to your own health. Fortunately, because of so many scammers, the FDA recently announced back in march of this year that the “wild west of stem cell therapies” is coming to an end with the introduction of a new frame work and guidelines due to the national and international pandemic of providing treatment which are not only ineffective and costly but also proven harmful. I for one could not be happier about this! People need to be held accountable for their careless actions.
As an aside: An autologous bone marrow adult totipotent stem cell study is currently taking place at UT Houston under Dr. Mya Schiess- The coordinator number to get more information can be reached at 18326329 to see if you qualify.
All rights reserved by Maria De Leon
Lindvall O., Kokaia Z. Stem cells for the treatment of neurological disorder. Nature June 29, 2006 Vol. 441
Is the wild west of stem cell therapies coming to an end? American council on science and health http://acsh.org/news/2017/11/17/
“The future is shaped by our dreams so what are you waiting for and go to bed… START DREAMING!”
We have known for years that sleep is essential for our brains to function adequately. We also know that people with Parkinson’s have a very disruptive sleep wake cycle for many reasons, the primary being a disruption in sleep wake cycle which is mediated by serotonin. Many of you like me sleep only a few hours every 48-72 hours. This way of living is not only detrimental to our physical, emotional, and mental health; but actually as I have recently concluded, poor sleep architecture is one of the main if NOT the MAIN reason why we as individulas with chronic illness like PD feel so poorly. Perhaps even contributing to our eventual demise.
First, sleep is a way for our brains to encoding information into long term storage as well as discard the waste accumulated. This process needs to be done routinely otherwise trash accumulates and eventually can take over impeding the brains normal flow. this is a kin to not washing dishes day after day letting them accumulate in the sink and kitchen area, pretty soon you will run out of storage space, deal with toxic odors, over growing mold/bacteria, impede the flow of your cooking area and have no dishes left to cook or eat with. the constant tidying up keeps things not only neat but flowing and functioning at maximum capacity, likewise our brains.
Second, during sleep we strengthen/ boost our body’s immune system. This is important information considering new theory of PD that disease begins with the gut possibly by over wrought harmful bacteria which then makes its way to the brain. weakened immune system from poor sleep could also explain why people with PD are more suseptible to even minor infections like the common cold. I should know, I had about 6 months of down time due to upper respiratory infections.
I certainly, have become much more sickly since diagnosed with PD.
Third, sleep problems especially chronic insomnia can lead to changes in mood such as depression along with increased anxiety as well as decreased coping mechanisms for dealing with stress leading to increase irritability.
Fourth, sleep deprivation also causes widespread pain in joints and muscles by increasing inflammation. the constant pain imposed on our sensory system causes a centralization of pain making our brains much more sensitive to even the slightest discomfort. After all the brain cannot distinguish between physical and emotional pain. interesting thing, I can always tell my body not had enough sleep/ rest if my joints hurt, have swelling in hands, and stiffness of joints and muscles. I can almost feel the inflammation and pain of dystonia melting away as I sleep – the throbbing, aching pain in my arm which occurs with repeated use slowly vanishes with sleep.
Intuitively, I suppose that by ensuring best sleep practices via various medications and life style changes my patients overall did not seem to progress or have as many non -motor symptoms. the funny part was that I had been suffering like many of you with sleep deprivation which always made all my other symptoms worse ’til it dawn on me; why am I not taking sleep aids I used to prescribe for my patients?
I began taking one of my most commonly prescribed medications for sleep – in my case Lunesta and voila not only did I sleep well without being groggy the next day but having a constant refreshing sleep has allowed me to improve my quality of life dramatically. Once again, I feel energized both mentally and physically.
I think that we need to focus more on trying to regulate our sleep by whatever means possible in order to improve our quality of life and protect our brains from slow deterioration.
Sleep meds I often used in my patients which worked well and caused little to no daytime sedation nor interfered with other PD meds or symptoms.
- Lunesta : (I like because it has multiple dosages 1mg, 2mg, and 3mg- plus does not typically cause sleep walking or other such bizarre behaviors like Ambien. Plus it does not build tolerance quickly safe to use on a daily basis).
- Sonata: also very mild- much milder than Lunesta so I preferred to use in elderly patients.
- remeron ( which has added benefit of helping with tremors)
- elavil ( not goo din elderly because can worsen low blood pressure and memory loss, on the other hand it can help depression if present while aiding sleep)
- melatonin ( otc)
- klonopin ( great for tremors and dystonia but can cause short term memory loss if take chronically)
if you are still struggling with sleep issues talk to your physician today.
Pleasanr dreams everyone!
all rights reserved by Maria De Leon MD
“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.
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.
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.
all rights reserved by Maria De Leon
“LIFE GOES ON…”
Hello my friends! Happy Valentine’s Day to all my friends around the world!
As always, I appreciate each and everyone of you and thank you all for allowing me to be part of your PD journey either as a person with disease, caregiver, friend, spouse, partner, child, grandchild.
These last few weeks, I have been having a closer more personal intimate look at my old friend. Aside from having new exciting PD projects in the works ( another women’s book in the making among other things);nevertheless, my biggest challenge is adjusting myself to a new stage in my life. Not only will I be celebrating very special wedding anniversary and 50th birthday this year but my Parkinson’s is slowly inching its way into a more moderate stage. Perhaps is not so much that my Parkinson’s symptoms have gotten more drastic or severe, although I experience some wearing of more frequently than before in the form of dystonia. One of the reasons for which writing this blog has become more challenging. It is difficult to type and difficult to speak, so i rest my arm and voice like the famous opera singers and world class pitchers til is absolutely necessary to exert myself. besides waiting to try long acting drugs like 24 hour Opicapone ( comtan inhibitor) or extended delivery Goccovri ( extended amantadine)- I have had to resort to OT for construction of braces and scheduling ST to improve hypohonia because more and more my family is asking me to repeat myself or telling me that I never said anything which can drive someone mad. perhaps time for another round of botox in the works….but not till this bronchitis clears!
Further, with all these changes compounded with increasing age and disease progression, the use of multiple medications and multi-system involvement of PD is beginning to cause cautionary breaks, problems, concerns on my part, my family and of course starting to get many more puzzled looks from specialists as they try to offer me the best care possible given my long list of systemic complications and drug -drug interactions. This is precisely why I always recommend having a very close relationship with your MDS and more frequent visits to adjust the sails for the change in course. we can all get away with taking minimal doses at the beginning and not see a doctor perhaps once a year; but as we advance that time between visits gradually needs to shorten in order to ensure you are receiving the best care.
First stage of PD, biggest problem to over come is getting right diagnosis, dealing with consequences of diagnosis followed by learning to live successfully with new disease as we find the right medicine cocktail with least side effects and maximum efficacy. Not an easy feat which may take a number of years, lots of tears, frustration and redefining boundaries with ourselves and every relationship thereof.
Second stage, I am beginning to realize more and more why-my Parkinson’s patients and many other people with illness suffer from increased isolation and depression due to only having so much time and energy. thus, if we are not cautious we can easily over extend ourselves and become emotionally and physically exhausted. I swear I have never spend more time as a recluse as I seem to be more often these days. I don’t want to go out, get dressed and put up a happy face when I feel miserable inside from pain, fatigue, and constant coughing . Bu,t i like to think that me taking this necessary time for myself will allow me to heal faster physically as i recharge my batteries but make a very concerted effort to not give in to illness nor seclude myself completely. One way i maintain my mental sanity and avoid feeling emotionally lonely, sad, or depressed is through use of technology. I still do conferences via skype and communicate with friends via internet and go out when someone is able to drive me or the second i feel energized. It is extremely important that we redefine our goals at every stage, reevaluate or medications and also our support system. as our bodies change so does the effect of medicines. on average the dopamine medicines usually stop working at maximum capacity around 10 years- so I too am thinking of taking a bit of holiday but within 3-6 months they can be reintroduced and be good as new. with age our livers don’t function as well nor our kidneys compound this with beau coup medicines and our livers begin to have a harder time clearing things which can increase the side effects. Don’t assume that because you have been taking something for a long time without problems it will continue its same course. Simplify, Simplify!! Always always look at possible interactions particularly those that may cause more trouble .
With each passing day, I gain further insight and greater appreciation for those living with chronic illnesses and have a new found respect for my own patients. i empathize with those who frequently rescheduled. when you become chronically ill when we are in need of a physician the most we are often not able to go because we cant drive ourselves or dress ourselves cant sit for a long time etc. So we either don’t go or go to ER. I have cancelled appointments more times than I care to admit. I too am working on a strategy to make sure that when I have appointments I find a friend, relative, or my husband to take me and not be so concerned about my appearance in public for that moment or be concerned that you are needing to ask for help. Really doctors don’t care what you look like especially if you are ill they understand! Plus, your friends, family and loved ones want to help they just don’t know how unless you ask. yesterday when my husband accompanied me to see the specialist i had a revelation. I was portraying my own feelings of inadequacy and insecurities on him thinking that he was somehow bothered by having to take me and care of me. Since i have always been independent. but turns out he said after i thanked him for taking time to be with me, ” i like taking care of you and would do more often expect you don’t allow me.” so don’t isolate yourself thinking you are alone in this journey or have no support because all those who love you and care for you will step up if given the chance.
You can do this.. life is but a continual dance sometimes fast sometimes slow but as long as you keep dancing you will always have fun.
ALL rights reserved by Maria De Leon MD