“Half of joy of life is in the little things taken on the run..so let us keep our hearts young and our eyes open that nothing worth our while shall escape us.”
Here we are again, like in olden days, gearing up once more for a busy and stressful season especially for those of us who live with chronic illness. Ironically, this is the time of year where peace, joy and harmony are frequently spoken and shouted from churches and corners alike. Yet, harmony can be an elusive word when family is concerned but even more so when the needs of the few superseded the demands of the many.
Every family has some sort of tradition for celebrating the holidays. Whether elaborate or not if it involves traveling, preparing meals for larger than usual group, shopping, sharing space, socializing in loud environments it will require some planning ahead to make the best of your time with family without letting illness interfere too much robbing you and loved ones of quality time.
In order to avoid losing heart and feeling like you might just want to skip holidays all together, I have devised a few tips to help you retain your joy and have a good time with faithful family and friends once more.
Have a plan
This means you have to be realistic about your health and family situation. If traveling is difficult ask members of family to come over to your place instead. If this causes too much chaos or is not feasible for others to travel either then consider gathering with close friends or a smaller gathering with loved ones. If you must travel allot enough time to travel and take breaks or break trip into segments to make it easier.
Growing up Hispanic, I certainly know the value of a good nap. I find that laying down for half an hour to an hour especially when traveling or have packed days serve to reboot and re energize the body and mind even if you don’t fall asleep. Find a nice cool and dark place. Helps if you bring your own pillow and blanket preferably a heavy one (I love my faux fur blanket- the weight of it tricks the nervous system into thinking that you are being hugged thus releasing feel good chemicals and relieving stress). Let family know that you need to be excused for a while so that you can have strength for the remainder of the day. This means no electronics! Pretend you are far away from civilization and have no access to any gadgets. Allow your mind to drift.
As most of us that live with chronic illnesses will attest to the fact that mornings are usually not our best time. So don’t kill yourself trying to do everything in the few good hours of the day. Ask others to chip in either by helping to prepare meals, help with shopping or wrapping, being in charge of itinerary.
Do things that make you Happy
If having too many people around give you anxiety, go for smaller gatherings and have furniture rearranged as I just did so there are various cozy sitting areas for intimate conversations around the house so you don’t strain to hear and company does not strain to listen to what you are saying either. Play games together (fun entertaining game that also stimulates mind is Skategories, cards, etc.), bake together or decorate Christmas cookies like in an assembly line or siting around the table so you don’t have to do everything alone but still participating. Open up a dance floor if the whim arises and make up your own moves even if still wheelchair bound. Instead of going out to the movies gather around friends and family for at home movie night.
Rethink the Big Picture
Before you commit to anything, ask yourself what are the pros and cons of doing whatever it is you are attempting to accomplish? Are there shorter ways to accomplish same thing like buying on line rather than having to drive all over the place. Will these activities give you joy or cause you to be more worn out? Having a clear purpose in mind can be extremely gratifying as well as help you reduce stress and burden brought on by PD leaving more room for the memories…
So I say to you, “Have yourself a little Merry Christmas now…”
Feliz Navidad Joyeux Noel God Jul
Merry Christmas Feliz Natal
Meri-kurisumasu Buon Natale Frohe Weihnachten
For another wonderful joy filled year together….
Love to hear how you keep your joy through the holidays….
All rights reserved by Maria L. De Leon
song by Nancy Lamott- Have yourself a merry little christmas!
There are a few things that I have learned over the years living with and treating patients with Parkinson’s disease which are bigger predictors of prognosis and over all well –being, in my opinion. We as physicians tend to ask general questions that often times elicit a ‘yes/ no’ answer but does not give insight into the challenges a person living with Parkinson’s or any other chronic illness really experience on a day to day life. In fact, how we cope and what changes we have make in our lives to continue performing independently, maintaining our social circles and living a full life speaks volumes of what ids truly ailing us.
Here I will discuss two issues that have high impact on our daily lives as well as are big indicators of our future well-being if we pay attention to them carefully and discuss with your physician in a timely matter to correct the problems.
1. Have you had to start driving differently like I have?
For instance, our doctors may inquire if we are still driving? In my case, I may say ‘yes’. But that’s not the end of the story. My driving habits have been severely altered as of late not being able to drive outside of town. For day to day activities, I have no problems. Yet, I can’t be relied upon for long distance traveling. Further, I tend to only drive on left lane because it’s much easier for me to turn my neck to the right than to the left due to dystonia (torticollis) and nuchal rigidity. Moreover if I need to look left, I have to turn my entire body to left (hard to do when sitting still much less going upwards of 60 miles per hour). The reality is that even with turning my entire body I still have moderate limitation in range of motion of neck which can be extremely dangerous. Now, I also rely heavily on my mirror sensors – best investment yet! These provide me with an extra cautionary measure as well as security in my driving
2. Have you had a change in dietary habits?
Many people including myself can eat most consistency foods. However, many like me are also finding themselves slowly changing their preferences because it’s easier on their daily lives. These change in preference although not necessarily mandated by swallowing difficulties may improve greater well- being and quality of life by avoiding troublesome foods. Whether it be in the food consistency or in the types of foods preferred or avoided. Many of you will attest that is darn nearly impossible to eat with chopsticks when one is dystonic or shaky. Sometimes can be even more challenging to pull a lobster or crab from its shell. So although I thoroughly enjoy these foods whole, I often get them out of their shell unless someone else is willing and able to remove the exoskeleton. In my experience, these apparently insignificant alterations to consumption of food is by far the most common and most significant tall tell sign that something is amiss. If left untreated these small compromises can lead to a downward spiral rather quickly.
Another issues with food is alteration in food texture. Are you like me, a while ago when I was deteriorating, I found myself changing my diet to soft purée foods like ground beef, mash potatoes, casseroles, and thick soups to avoid choking. Even though I was not choking all the time nor daily. Yet, the times I did were so exhausting that it became easier to avoid all together along with the concern of ending up with aspiration pneumonia to add to my already extensive medical problems. (There are two reasons for choking with solids either not enough lubrication (dry mouth) or weakness of chewing muscles). Choking with liquids is a more ominous sign because you are at higher risk for aspiration.
On the other hand if you still are able to eat all types of food yet still losing weight because it takes 3-4 times longer than normal to consume a single bite without choking – or takes double the time to bring a single bite of food to your mouth-due to tremors, dystonia or slowness so that you either have to stop going out to eat with others or begin serving yourself smaller portions to avoid being last one at the table or last one to finish in a group- there is a huge problem that needs to be addressed. Sometimes you may compensate by only eating / ordering things that are easy to keep on a fork like Mexican food which is finger friendly or wrapped in cheese making hard to fall from a fork despite severe shakes.
The end result is either weight loss from poor nutrition, not enough food intake, or recurrent pneumonia’s causing secondary weight loss from illness.
As I mentioned before because these can be indicators of not only something amiss but usually portend bad outcomes. We must be constantly vigilant about our coping mechanism and discuss with our physicians, specially if it is in relation to dropping weight without meaning to.
Always Beware of weight loss. Two common causes in PD patients as i said before 1) poor food intake because of mechanical difficulties with chewing/ swallowing or 2)because of motor difficulties in cutting, preparing and bringing food to mouth.
Similarly, even if you are still driving if you had to make special adjustments /modifications to your vehicle to compensate for shortcoming or if only traveling short distances or only when accompanied by another, as I have had to do many times in past, you must notify your health care provider to make necessary changes to improve your quality of life especially as we near busy traveling season of much eating!!!
keep in mind that in my journey i have discovered that coping is a way
for me to embrace life not escape it ..so we MUST make sure our coping strategies helps us achieve a fuller life.
I would not want you to miss out!!!
all rights reserved by Maria De Leon