“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