“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 Yet, harmony can be an elusive word when family is concerned but even more so when the needs of the few superseded the demands of the many.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!
“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
I have decided that “stress does not go with my outfit. so, I am breaking up with it!” you should do the same….. after all is not the stress that kills us but our reaction to it.
I write to deal with my own stress although sometimes I just need time away from everything and everyone for a bit to recharge my body and mind… this is crucial part of dealing with life’s stresses.
We all know that living with a chronic progressive neurological disease like Parkinson’s can be quite cumbersome all on its own. but, this does not shelter us from other life stressors like dealing with family, financial burdens, ailing parents, teenage issues and so on.
I have found that the greatest stressor for me in living with an illness is the disruption in my routine weather is a positive force or not. This disruption, especially if extended, throws me into a frenzy from which it takes a few days to a week to recover. During this recovery time, like today, I can be a bit of a bear to those near me. When I am physically exhausted, worse if there is also an emotional component, I tend to feel out of sorts and extremely irritable. What makes it worse is knowing I need down time to recover but not finding the space/time to do so because there are family demands on hand which must be taken care of. I absolutely hate when my husband is off when I am in desperate need of respite because although he does his own thing and does not put too much pressure or demands on my time, there is that feeling of disappointment he gets because I don’t have my act together. then comes the guilt on my part for neglecting him when he gets such limited time to spend with me and my daughter doing family activities. Even though, I am absolutely exhausted and am in dire need of sleep, I feel obligated to get up after only 3 hours of sleep because he and my daughter have started morning early with a 6 a.m. run and are ready for breakfast by 7 a.m. And thus, the day begins with me barely functioning, stumbling, and feeling quite picked only to be made worse by my daughter asking me complex questions half an hour later even before my medicine has had a chance to kick in. so I loose it. Worse since she got up so early, she too is a bit irritable. I decide its time for everyone to go to their quiet place and recuperate.
But, why do we allow ourselves to get this way?
Surely, there are signs that warns us of impending melt down.
Failure to recognize the signs or ignore them as I do when I am in the midst of traveling to speak, finishing a book, dealing with mom’s car problems (I don’t even deal with my own) and other family drama can be extremely detrimental.
What are the signs that speak volumes of our need to calm down and regroup? the thing is that these same symptoms can be considered non-motor symptoms of PD which can cloud the picture even further. But, with a little common sense and careful observation of our symptoms we can learn to differentiate and change our course of action to diminish our stress levels.
First, increase of head aches: who does not have pain in the head especially when hungry, tired, sleepy, and with neck dystonia? massage your temples and your scalp and neck even use some mint oil extract and place in forehead and temples. This will sooth you. get facial and scalp massages. if cant afford this and hands too weak to massage yourself use a lemon and rub around your head, neck. plus citrus aroma will also be soothing.
Second, jaw pain: may not be related to dental problems or oromandibular dystonia but rather our involuntary clenching of our jaw when stressed. this also can trigger headaches. Relax your mouth and keep teeth apart when dealing with stressful activities – periodically check by stopping what you are doing and relaxing your jaw if it feels better -you are clenching and keeping it too tight. Give it a bit of massage at least a couple of times a day. Insert one finger/thumb inside your cheek and place your thumb/index finger on the outside and rub till you feel all the knots disappear. (don’t forget to wash hands first)
Third, skin irritation. Do you suddenly feel like your skin is itchy all over? is it breaking out? although we know that PD can cause skin dryness especially in scalp and also cause eczema. if you find yourself scratching a lot all of a sudden like I have been these last few days without having changed anything to your medical regimen, diet, water intake, or your hygienic products then most likely due to stress.
Fourth, Bizarre dreams. Once more, we know strange and vivid dreams are part of the disease. But, if these have been under control and nothing has changed in regards to other motor symptoms nor medications and not being consuming alcohol before bedtime, this can be another sign. usually these drams are nasty and disturbing.
Why should we care about controlling our stress?
It is important to deal with the stress because uncontrolled stress can lead to depression, we are already at risk with PD. Also, it can lead to increase weight gain by allowing our bodies to store more fat. It also increases our blood pressure. Lowers our libidos and increases insomnia both of which are already a problem. Plus, it decreases concentration and increases memory problems.
Ways to treat stress:
#1 make time for yourself– so after the melt downs – I excused myself and went to bed. nothing like a good refreshing nap to restore clarity. Do things that make you happy- I go to movies, shop, read, sing, and go out with my girlfriends.
#2 Eat well– do not skip meals or skim up on nutritious meals because these have the power to reduce the effects of stress and stir you away from sugary cravings. home cooked meals are the best- cook when you feel best and store the food. I cook at night often. Cooking lasagna in oven as I write this blog.
#3 Move about– find way to release some endorphins- shake, dance, jump, walk, exercise. I love dancing and singing best way to reenergize. Plus is a load of fun if you do with those you love like your children or spouse.
#4 Sleep- This is the second most crucial after making time for self. talk to your doctor if having problems may need sleep aid ( e.g. sonata, lunesta, melatonin), antidepressant ( e.g. Elavil, remeron), antianxiety (e.g. klonopin), or antipsychotic ( e.g. Seroquel). I personally take klonopin otherwise I could not have restorative sleep. You will feel so much better after a good night sleep and you other PD symptoms will also improve.
#5 Don’t forget to breath! when you find yourself getting completely overwhelmed, stop and close your eyes and focus on your respiration until is calm. I do this at least once a day. problem is remembering to do this when I am busy chauffeuring everyone around. working on it just like I do my stretching in the car even when driving- I must learn to quiet my breathing even when I find myself in a noisy crowd or driving.
So lets learn to stop reacting to the stressors in our lives rather become proactive in preventing and changing our attitudes by letting go of perfect and nonessential things which do not contribute to our well being.
all rights reserved Maria De Leon
Last month I have been dealing with my dad’s terminal illness. I have had my moments of frustration as many of you have in taking care of loved ones with chronic illnesses like PD because sometimes what we think is best for them is not what they think is best for them. So how do you decide when to step in and when to watch from the side lines (cautiously holding your breath). This question is extremely complicated of when to override their needs and desires for safety sake?
For example my dad is very frail getting extremely weak and has fallen twice but still insists in using a walker instead of wheel chair which makes me cringe. It is important not to fall into a trap as a caregiver of assuming what the person with chronic illness or PD needs or wants. It would be best to ask that person what their wishes are. An honest and frequent dialogue can go a long way in maintaining the personal dignity of the care recipient or patient as well as that of the care partner who will not come across as a tyrant but rather truly caring individual.
Learn to compromise– avoid disputes and old issues from getting in the way! During chronic illness especially as a loved one reaches end of life; this is the time to stick together! So as to make him or her feel like he/she still has some independence …so instead of forcing wheelchair in the case of my dad, I explain my concern for him of falling again.
You must Reiterate your concerns in a compassionate manner – I explained to him that we had been lucky until now not to have broken any bones thus far. But, as his bones are frail and weak any small apparently insignificant injury even a simple bump from sliding off the bed can lead to a hip fracture or wrist fracture. However, if we are to not use wheelchair, then we must have a safe plan in place. So, he was instructed to call someone first prior to getting up either from bed or sitting to alert them of his intentions of wanting to be mobile. He then was to Sit at side of bed if reclining for few minutes rather than jumping up from laying ( although this is more theoretically purposes just so that he remembers to take it easy because in all honesty he is not jumping anywhere when movements are extremely slow, deliberate and laborious); these recommendations are meant to safeguard him from getting orthostatic, dizzy and avoid subsequent falls. Furthermore, I again instructed him on appropriate safe use of walker and asked for him to carry safety belt around so if he does slip it would be easier for me or my mom to catch or lift him up.
Learn to coordinate: some of us are better at this than others. If you are good at delegating and seeing the big picture- this is your calling. Nothing is more important than having a game plan! For instance, I am good at this … While my mom tends to daily needs of my dad I can step back and see what needs to be done so I can guide my mother and assist her in getting things done. For instance dealing with matters of insurance, are documents in place? Are Wills done? Over see funeral arrangements if dealing with end stage disease and terminal as is my dad’s condition? Are other legal documents in order?
Because, as we know when we are dealing with the task of caring for someone 24/7, we can become so overwhelmed we sometimes can’t see the trees for the forest. This is especially the case when death is imminent, our judgment can become clouded and we may become paralyzed with grief! Be the one that initiates conversation and steers it in a positive direction to get things that need done taken care of.
Learn to facilitate: emotions tend to run ramped when dealing with a chronically ill loved one. It is hard to step outside your situation and see things objectively. This is when a friend, pastor, social worker, healthcare professional or in my case a relative that does not live there all the time comes in handy. They will ( I-you can ) provide valuable insight into the situation, give impartial advice to diffuse a stressful situation by offering prayer and even referring to other counseling services, support groups and other resources on line and to other community organizations that may be able to assist with specific needs. (i.e. Help find a sitter)
Learn to listen: this is the most difficult task of all! Some of us hear but don’t really LISTEN. Listening takes special skills understanding and putting one in the other person’s shoes. When we are in a stressful situation we all desperately need to be heard so everyone talks but No one LISTENS! Often times no words need to be uttered to have truly listened and made the person you are caring for feel special, unburdened, understood and loved. The same rules apply for the caregiver … ask them to tell you their story. This simple act can allow them an outlet to relieve their stress and open the door of communication and a way for you to offer assistance in the area of their specific need. (E.g. My dad still wants to maintain some semblance of dignity and independence/ mom wants not to have him break a bone and hurt herself in the process if he falls). So, we came up with specific compromises on how to do things like grooming in a manner that is safe and convenient for everyone.
Lastly but not least learn to socialize: again if you are a leader or a take charge kind of person or event planner, this would be right up your ally… After all we are social beings …most of us even the shyest of us (we) thrive when we are in bonding with others either individually or as a group. Therefore, it is important to plan social outlets to get the caregivers out of their stressful situation from time to time to avoid depression, loneliness, feelings of helplessness, spiritual exhaustion which might lead to suicidal ideation but also to remind them they are individuals that have unique talents and gifts. It is important to Do the same for the patient – (to avoid same type of feelings) the social activities can be done together or separately-best if done separately from time to time. Help organize activities for family, individual etc. Put your imagination to work. Even if it means taking them out for an unexpected ” ice cream ” run or whatever their favorite activity may be like in my dad’s case fishing (even if it’s just in a pond, bucket, or fish tank because he is now too sick to go outdoors far away from home fishing as he would like) and my mom -shopping! (Of course don’t forget to get someone to watch patient while care giver goes out).
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 firstname.lastname@example.org contributor http://www.assisted-living-directory.com Contributor http://www.lavozbrazoriacounty.com
A month ago, I read that as the new year rung in several Parkinson’s patients chose to take their own life. I can only imagine the devastation one must feel to decide to go through with something like this….I was extremely saddened by these events ….wondering where the friends and family were and at what point does one loose all Hope?
So, I thought I would revisit the topic of stigma in PD that I touched upon a few months ago.
From my years of practice, I recall many patients becoming extremely more withdrawn from society due to the physical impediments like decrease mobility, excessive drooling, increase hypophonia ( low-soft voice ) causing individuals to become increasingly socially embarrassed. This reminded me of how PD can be both socially and emotionally isolating. A lot of people that I have met over the years have been afraid to say they had this illness fearing public scrutiny. So, they chose social isolation or minimal contact with others in potentially embarrassing or humiliating situations like dinner parties.
They were afraid of chocking, spilling food & drinks due to tremors or DYSKENESIAs.
People sometimes are afraid as being judged incompetent or drunk due to poor gait, slurred speech or questioning one’s handwriting each time due to micrographia or severe tremors.
What about struggling to get money or credit cards when they need to make a purchase or pay for dinner?
According, to Dr. Julio F Angulo: ” shame is embarrassment felt in private.”
So, no wonder our self esteem begins to erode if we do not surround ourselves with people that love us, support us, and understand our shortcomings…we live in constant dislike and loathing of ourselves and begin to hate and blame our condition and best way to get rid of this fear & shame is eliminate the culprit! Hence, there is an increase risk of suicide in Parkinson’s rarely ever talked about.
But, I say that this does not have to be the case…first of all we as individuals have to realize that all of us embarrass ourselves at one time or another whether ill or not. And that our biggest critic is our selves, other people don’t pay nearly as much attention to our faults and weakness as we might think…they are too busy worrying about their own faults, difficulties, challenges and own prejudices.
Although, is no doubt that having Parkinson’s presents daily opportunities for embarrassing situations, the negative feelings it conjures up should not be pushed down and suppressed but rather discussed with other Parkinson patients. But, primarily they should be discussed with ones own physician or healthcare provider. This needs to be done as soon as first negative feeling arises or sense of shame begins to take root or even when you notice a change in your behavior. For instance, although you might enjoy the company of others you might suddenly find yourself making excuses to avoid social situations.
Your doctor can help you find the right solution which involves a wide array of medical treatments like psychotherapy.
Antidepressants can also play a role in the treatment of these symptoms. Some methods which might be suggested include desensitization, thought stopping, role playing just to name a few.
But, although all these things can be helpful, the main thing that will keep someone from feeling sad, blue and at their wits end is friendship, love, connection to others like ourselves…and above all FAITH!
So, let us not forget to reach out to one another….
I leave you with these words of inspiration..
“dig deep.look within. it’s all there inside you.
Except sometimes…it is not.
Everybody has days when all
The digging deep only turns up mud.
And that’s when you hand over the shovel.
You reach out. You let somebody give you
What you can’t mine for yourself.”
WE ARE STRONGEST TOGETHER, HOLDING HANDS.
From BE Inspi(RED): words of hope and courage.