“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
Those of us who have chronic illnesses like PD often experience chronic pain as well. This in turn leads to increased problems with sleep- falling asleep, staying asleep as I am experiencing radicular pain at this moment keeping me up! (fortunately, I have taken my medication and waiting for it to kick in so I can have a good night’s rest)
The lack of sleep causes those of us most in need of pain relief to have more pain by depriving our bodies of the healing effects produced by a good night’s rest. If we don’t allow ourselves to rest and have deep sleep, this can then lead to a vicious cycle of pain and sleep deprivation.
According to the director of Behavioral Sleep Medicine at John Hopkins, Buenaver says that “people often make their situation worst by dwelling on the problem, and worrying about their pain.” So, I often recommend taking a strong pain medication even if it is an occasional narcotic to break the cycle and prevent the brain from becoming sensitized to pain. Because once pain becomes chronic it is much more difficult to treat because our brains have accustomed themselves to thinking there is nothing to be done to make the symptoms better. You are defeated even before you have begun. This thinking is akin to an elephant who falsely believes it can be held captive or in place by a small chain not realizing its own potential because since they are small elephants in captivity are tied to trees which can hold them while young but not as they get stronger. The negative feelings that surge with dealing with chronic pain, the behavioral sleep director states, make those of us with chronic pain more sensitive to its effect.
His suggestion is to replace the negative thoughts, once they are identified, with a more balance positive train of thought which in turn is more likely to elicit greater sleep; since positive emotions not only cause relaxation but can actually ease pain by releasing chemicals like serotonin.
Next time you are bombarded with a negative thought or feeling, you have the power to STOP IT and replace it with a positive one…try it! We begin by adjusting our mind sets, resetting our nocturnal habits- turn off all electronics, lights and commence meditation (prayer) adding positive thoughts to your daily life; otherwise we are not just sleep deprived but we are also hurting ourselves in more ways than one by potentially exacerbating all of our other non-motor PD symptoms.
Sleep impacts our entire being from our brains to how our body performs. Michael Smith, director of John Hopkins Center for Behavioral Health states that” during sleep the space between the cells in our brains expand and allow fluid to flow through the entire brain and wipe away all the toxins of the day -that our brains put out.” We essentially clean house at night making for a more efficient and effective brain free of pollution. We all know what happens if we stopped cleaning our house? Soon it will be filled with garbage and uninhabitable.
Well, the same is true for our brain! We all know that when we are sleep deprived our minds operate less effectively and less efficiently. This is because it has to work extra hard to get over the trashed produced during the day’s activities. At night is when we sift through the waste and store what’s important. If not allowed to do this properly we become slower to recall and our reaction times increase…in a disease where we are already limited and experience slow recall and reaction time we do not need to increase this deficit by depriving our selves of sleep. Furthermore, sleep deprivation affects our prefrontal area – which is our decision making centers, also the area known for dealing with complex emotions and impulse control.
If we are hurting and sleepy we are at a total disadvantage to deal with primitive emotions like base needs and desires thus much more likely to succumb to impulse control effects of the PD medications. Lack of sleep can cause us to be anxious and emotionally become a train wreck which can even lead to severe depression if we allow ourselves to become chronically sleep deprived.
Remember, as I mentioned before, sleep helps with pain and healing. Sleep deprivation causes increase in inflammation which puts the neurons that fire up the pain signals on high alert ready to shoot at a moment’s notice. The neurons responsible for pain become extremely active -no wonder we are more pain sensitive when tired! From personal experience, I know that when I hurt the best remedy for me is to rest and sleep. Even my husband has become attuned to this- if I get enough sleep, I don’t hurt. The worst part is that researchers have discovered that disrupted sleep is even worse than sleeping for shorts amount of time…continuous arousals or interruptions in our nightly sleep cause greater inflammation and greater pain sensitivity…perhaps this is a reason why women and people with PD who have significant bladder issues or are wearing off at night tend to have greater pain? Even those of us who have REM behavior or severe RLS can be more likely to develop chronic pain if sleep continues to become disrupted.
As if being fuzzy minded, emotionally a wreck and sensitive to pain was not enough, sleep deprivation also increases our waistlines by making us eat more caloric foods, and increasing our food urges. Of course with all this topsy- turvy our bodies experiences when we don’t get enough sleep, we naturally become more fatigued. Perhaps, all of our Parkinson’s non motor symptoms would be much better off if we all took a concerted effort in making sure we not only got enough sleep (at least 6 hours a night) but, also a deep restful uninterrupted sleep.
Since, lack of sleep can lead to poor thinking, mood disorders, inhibit our abilities to deal with pain and actually increase our pain sensitivity while making it harder for us to metabolize food increasing our waistline- which by itself can put us at risk for other health issues. Therefore, it is imperative that if you are experiencing problems in any one of these areas, you speak with your doctor ASAP about adjusting medications for bladder, for “off “symptoms at night, RLS, and ReM behavior, pain and yes, perhaps asking them for a sleep medication to ensure a good night sleep.
However, things we can do to improve our lives and sleep are as follow:
1) Exercise in day time not night-preferably early in the morning @ least 3 times a week for at least 30minutes.
2) Limit caffeine intake- especially in the evening. No night caps-wine actually leads to rebound insomnia.
3) Control lights- turn off all electronics- do not read or watch TV in bed. Bed is only for sleep and sexual intimacy. Maintain your sleeping area cool and dark.
4) Relax. – have a ritual and a set time to go to bed and get up. Begin winding down and shutting off electronics at least an hour before bedtime.
I guarantee we will all be feeling much less pain, fatigue, forgetfulness, depression, and less likely to succumb to ICD’s (impulse control disorders).
Richards, Sarah. (Fall 2014): “Cheating Sleep.” Johns Hopkins Health Review. Vol. 1(1):70-77.
“Hurt less, Sleep more.” (Psychology): (Fall 2014): Johns Hopkins Health Review. Vol. 1(1): 19.
Dr. M. De Leon is a movement disorder specialist on sabbatical, PPAC member and research advocate for PDF (Parkinson’s Disease Foundation); Texas State Assistant Director for PAN (Parkinson’s Action Network). You can learn more about her work at http://www.facebook.com/defeatparkinsons101 you can also learn more about Parkinson’s disease at www.pdf.org or at www.wemove.org; http://www.aan.org, http://www.defeatparkinsons.blogspot.com All materials here forth are property of Defeatparkinsons. without express written consent, these materials only may be used for viewers personal & non-commercial uses which do not harm the reputation of Defeatparkinsons organization or Dr. M. De Leon provided you do not remove any copyrights. To request permission to reproduce release of any part or whole of content, please contact me at deleonenterprises3@@yahoo.com contributor http://www.assisted-living-directory.com Contributor http://www.lavozbrazoriacounty.com