“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
“stop focusing on what happened and start focusing on what’s going to move you forward.”
We have come a long way in the way we think about many neurological diseases since I first became a physician. 25 years ago we had a limited number of medications to treat Parkinson’s plus the thinking was that patients with this illness were doomed to a life fraught with physical limitations that were out of the control of the individual who simply had to accept his or her fate.
Now we know that although there is still no cure, there can be life after PD. We have the power to control our future to ensure the best possible outcome.
Although many of the tools and techniques of rehab to aid patients with PD are not entirely new and in fact been around for decades, the expectations of patients and doctors has shifted considerably. There is now a greater emphasis on recovery and maintaining function because contrary to previous beliefs… The brain is capable of remodeling itself – However this does not happen overnight nor without hard work and will power. The best outcomes for those living with PD come by from earlier rather than later treatment introduction as well as rehab. Even in early stage of PD when patients just begin to notice gait deficits studies show that there is a dramatic decrease in cadence and stride that can be improved and maintained if physical therapy begins early before real problems like falls occur. The more people with PD practice their therapy regimens (like cycling, walking, boxing, dancing, tai-chi, swimming) the stronger and smoother the new brain pathways developed will become. These therapies are not confined to traditional ones but also those which are non-traditional like singing and painting or sculpting. Also programs like BIG & Loud can be of great benefit.
Thus, as soon as one is diagnosed one should talk to their physician about referring to physical therapy, occupational and speech therapy. Part of the conversation should include discussing daily or weekly activities which will help to maintain and improve function. Even when wheelchair bound one can do tai-chi or laughter yoga to help guard against depression and decrease rigidity and pain. The goal is to stimulate new pathway development and strengthen the connections which are becoming loose. But the rehab should not only include physical activities but also mental ones since PD affects memory as well. Of course there is a belief that exercise can improve and delay memory loss but actively engaging in mental activities like learning new skills, playing games, solving puzzles, learning new languages, as well as socializing will be much more beneficial.
But, before you go begin to recovery, you must first address your own emotions. The reality is that until it happens, most of us take for granted all the little things we are able to do without giving it a second thought like multi-tasking, being able to get dress, able to tie our shoes, brush our teeth, feed our self, cut our food, etc. we don’t ever think what would happen if I were to lose our independence suddenly and unexpectedly. How would we react? What would we do? How will we cope? The notion can be extremely traumatic especially for an active independent person. When we get a diagnosis with PD is not uncommon to feel out of sorts, lost, depressed because we are grieving for loss of self-wondering what our next move will be, what our new place in the world, or role in our families will be? We wonder what the future holds for us. To make matters worse Parkinson’s also wreaks havoc with our emotions making us anxious, and depressed. If we don’t get a hold of our emotions and seek medical care which may include counseling, these can ruin our life leading to isolation, worsening depression, fatigue, sleep, and apathy. These emotions if unchecked and untreated can stand in the way of a recovery.
3 Sure ways to better outcomes and happier you:
First step is self-awareness of problem – one can’t solve a problem without first admitting there is one. Get diagnosed. Then work on what needs attention in your life at the time-ask yourself how I am going to do my job or fill my responsibilities if I am not well? So place yourself at top of to do list. This means accept diagnosis and start treatment.
Second, find a support group– people you can open up and also will be there when you need help, this includes looking for financial help if needed, plan for future.
Third, strengthen yourself by embracing the disease and putting a plan together to exercise, eat right, sleep right, go to counseling if needed, follow through with doctors and tailor your own therapy to fulfill your needs. An Avant guard way of approaching therapy is called progressive task related training. For instance, if having trouble using limb to eat work on ways to improve function and use of that limb getting right utensils, taking right meds, etc. The goal is to promote autonomy for as long as possible. This also includes educating yourself and others about your disease. Make short term, medium term and long term plans to accommodate for your new needs and life style. This includes preventing falls which frequently occur with PD -so should have some balance training like water therapy which I have found to be the best solution for this problem.
5 ways to achieve rewiring of your brain
- believe in yourself- “I think I can, I think I can…”
- embrace the positive attitude- say no to the bad!
- visualize getting better- walking better, shaking less, talking louder
- take steps towards your goal- monitor your symptoms and act on them quickly, start an exercise program, start a mentoring program..
- repeat, repeat, repeat….
soon you will be on your way to a new you!