“What does not kill us gives us something to write about” ~ Julie Wright
As I have journeyed with Parkinson’s over a decade, I have learned the importance of maintaining a balance in my life. This includes maintaining an emotional, spiritual and physical equilibrium.
One way that has helped me to maintain overall well-being in my life despite living with a chronic progressive disease is writing and sharing my story with others. There is power in embracing your past and present. Through various ups and downs, keeping a journal has allowed me to stay socially engaged. This in turn has helped me remain physically and mentally active.
Maintaining a diary or journal is not only an inexpensive activity but lends itself wide open to individual expression of creativity from choosing the type of journal, pens, stickers’ and font to name a few. This is why I created the journal for women with Parkinson’s called ‘Hello Possibilities’ (can be found on line at amazon, Barnes & Noble’s) to help other women whether patients or caregivers to find a safe place to work through their feeling whether alone or in a group.
Furthermore, I have found that having difficulty writing because of tremors or dystonia should not be a reason NOT to journal. There are other ways of journaling like keeping a Mandala diary or using dictation. There are various software’s available like dragon voice recognition and dictation software even some of the smart tables have features that can help write.
I find that journaling also allows for a valuable tool to work on problem solving and gauge emotional well-being – sometimes for me the mere act of committing thoughts to pen and paper help alleviate the fears, anxieties and concerns I may be struggling with at the time. It serves to reassure me that I am still me and that I do HAVE control over my thoughts, attitudes and disease. Especially when I have difficulty sleeping, as most of us with chronic illnesses do, writing is a great way to calm the racing thoughts running through my head like a movie on fast forward. Once, I start writing even if it’s just a couple of sentences the thoughts stop. If there are real pressing issues this allows me to start thinking of solutions. If you live alone or sleep alone you can keep a diary by your bed but if you are like me that has a bed partner I get up and find my comfortable place to write. Once my thought are down on paper I can rest better and go back to bed. But don’t activate yourself too much by turning all the lights keep a quiet cool place in a corner like I have with a soft light. I have a stained red glass lamp which provides enough light for reading and writing. The red light also provides a very tranquil mood for introspection. If you really want to get in the mood use an essential oil diffuser with a scent like frankincense or lavender to help you relax.
The other thing I have discovered and I stress in my new journal, just released, is that writing can also serve as powerful tool to recognize patterns. If you keep track of easy to quantify behaviors like sleep, depression, anxiety activity levels (apathy), cognitive changes like irritability, pain, or obsessive behaviors.
For instance, for me when I start sleeping longer than I usually do – not fatigued or depressed merely sleepy is a sign of underlying infection typically a urine infection. The sleepiness for me always comes before other symptoms of infection like chills, rigors, burning, frequency and urgency. So if other people do not notice or you don’t notice otherwise that are sleeping too much if your writing suddenly changes from daily to none or sparsely – you have a clear indication of something amiss and time to take action. But for more sinister problems like falling into depression or loneliness- the content of the writing will also change from hopeful to helpless or darker in nature which can be a huge sign of needed help. So it’s important to glance over to recognize patterns or allow your physician (or someone you trust) to have a look to be able to help and make appropriate changes. With drawing as a form of journaling it is easier to note changes in the color or designs you choose.
Ultimately, maintaining a journal puts you in the driver’s seat by allowing you to notice patterns. – it allows you like it has done me to take ownership of treatment and be proactive in your own care by calling your doctor and ultimately doing things to alter behavior and prevent snowballing into something more serious
For me seeing the words on paper is empowering perhaps it could be the same for you-whether you are a patient or a caregiver. When I write I realize how much stronger I am because of what I have overcome – you too can realize your strengths and potential for living a full balanced life despite having PD.
Go ahead try it! You may want to start by writing your favorite verses or affirmations or a letter to God, your children or your future self.
ALL Rights Reserved by Maria De Leon MD
Parent’s are like glue even when you can’t see them or even when you don’t want them there – they will always be there holding on to their precious children no matter how grown they are or think they are.
When my daughter was a toddler, I used to read her favorite stories at bedtime. One of her favorite stories was the “Runaway Bunny” by Margaret Brown
She has always had an adventurous spirit, not unlike mine. she has always looked for any opportunity to go to new places and discover new things. I guess that’s why she is fascinated by the sea. However, she has always known that no matter how far she went or how sick I got I would be like that bunny’s mother- ever present in her life. Even now as she is spreading her wings in a new direction and flying away from home, she knows that I am never far away. she knows that I will be that tree, that cloud, that wind, that rope that she needs to feel loved and protected.
She has realized that although sometimes I look like nothing much is there as when we have gone to the movies in the middle of the night and I could not stop laughing uncontrollably forcing me to say
“I swear I am not drunk” to the movie clerk who was eyeing me suspiciously. Only to have my children hide from embarrassment or even act like a total ‘air-head‘ when at the last trip after moving my nephew out of his dorm I drove the entire clan to a hotel we had no reservations. There we were 2 cars full to the brim and completely exhausted with reservations to a place I had no earthly idea where with no one to call to ask because the number and confirmation and address I written down did not matching with the place we were at. My brain was fried from traveling all day, my medicines were wearing ‘off ‘and I had a less than helpful clerk who was telling me “sorry but we don’t have you in our system and we have no rooms for the night!”
I had promised the kids we would go swimming. But now, I was not even sure where we would be spending the night. I thought about driving home but seemed so much further in the middle of the night. I was in no condition to be driving home nor all over the city for that matter looking for a hotel. Keeping the cool as best I could, I took a deep breath and took an extra dose of levodopa. Maybe my brain would work better, I thought. I then began making phone calls to various hotels in the area and even to other states because the city we were in is also in North and South Carolina and perhaps I had called them by accident while I made the reservations. I was trying to keep the calm watching the gang who was tired of sitting in the cars and were now sprawled out all over the lobby.
After what seemed an eternity, I got a call from an unknown number. Usually I don’t answer numbers I don’t recognize but was desperate. I answered not knowing who was on the other side. to my surprise I heard a worried man’s voice. “Is this Mrs. De Leon?” he said. I answered in the affirmative. Before i had chance to ask who this was he chimed in “I was getting worried about your arrival, so I thought I call you and check on you.” Salvation had come. I was overwhelmed shouting kids get up we found our lodging or rather it has found us.
I have traveled all over the world, and not once did I have anyone from a hotel call me to see if i was still coming and believed me I have missed a few planes. I knew this was God’s angel looking out for us – his children. Like the runaway bunny, I too know that no matter where I go or even try to go God will be there to show his love and his everlasting presence.
Of course, when we finally got to the new hotel, which was quite nice, we finally got to devour the graduation cupcakes which had been delivered all the way from the famous Georgetown Cupcake bakery! Sprawled all over the nice beds and sofas, everyone poked fun for what had just transpired. finishing her cupcake and milk with sleepy eyes my daughter whispered “Thanks for being always being there mom even when you are too much!”
If you are a parent with PD like me, I know that you will do anything for your kids even if you can barely move or think. Don’t ever stop showing them that your love is bigger than the Parkinson’s. If you are a child whose parent has PD make sure and thank them for caring and loving you despite the fact that at times just caring for themselves is all the energy they have.
Remember, that in the end the “runaway bunny” discovered that happiness and safety are usually found at home with the people you love most despite any physical or mental limitations they might have.
all rights reserved by Maria De Leon MD
One of the most terrifying things for me is communicating with doctors. Over the years, I’ve heard enough pushback, belittling, and general unhelpfulness that I now suffer from increased anxiety whenever I need to ask the doctor a question.
Today, I emailed two of my daughter’s doctors, and I’m still a mess.
I’ve been through a number of medical professionals over the last few years, for myself, my husband, and our daughter, and not every communication has been productive.
Sometimes, it’s a clear sign that the particular doctor isn’t a good fit for our needs. Sometimes it’s a sign that my medical PTSD is taking hold of how I communicate, and I need to take a step back.
For me, I find a lot of the anxiety comes out in the form of arguing and rapid speech. I’m getting better about clear and professional communication, even now when diagnoses hang…
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When things go wrong, as they sometimes will,
When the road you’re trudging seems all uphill,
When the funds are low and the debts are high,
And you want to smile, but you have to sigh,
When care is pressing you down a bit-
Rest if you must, but don’t you quit. ~ John Greenleaf Whittier
Hello my dear friends, on this beautiful Sunday afternoon I like to remind everyone who is reading this missive to “not lose heart!” I know very well what it feels like to be in the trenches fighting day in and day out without seemingly moving an inch forward. I know the fatigue and frustration that accompanies the endless parade of doctor visits and having to take gobs of medications just to be able to brush our hair, put on our clothes or get out of bed much less having to face life with all of its challenges when all we feel like doing is curling up in bed and never coming out. I say again to you my friend: “Don’t lose heart!” and have COURAGE (from the French word coeur which means ‘heart’). Believe me it takes courage to do more than we feel or to change our habits when staying as we are where we are feels more comfortable.
Every day I wake up I have to summon inner strength to tend to my family’s needs when at times I am hardly able to tend to my own. The other week I had to take my daughter to orientation for college, feeling at times that my strength and my legs would not hold me after walking miles across the huge campus all I had to do was look upon the face of my beautiful daughter full of enthusiasm and apprehension for the journey ahead. My pain, and discomfort could not stand in the way of me being a supportive parent. As I walked across campus trying to infuse courage to my daughter I recalled the words of H.G Wells who once wrote “what on earth would man do with himself if something did not stand on his way?’ I told my daughter that it is the way of life to do battle, to fight for what we want, and to face challenges with head held high. I reminded her as well as myself that adversity can be our friend although it may not feel like such at the time we are going through problems like dealing with health issues. But, it is these challenges and obstacles which teaches us our strengths and weaknesses. These are the moments that shape our life and determine our character. The greatest people in history were those who faced the most difficult roads with courage and rose to the task.
So if you feel like you are on a slippery downwards slope – don’t let fear let you lose perspective. Gather your support team around you and refuel energy and get courage once more to stand up one more day- after all there are new treatments, medications, and life around the corner- and as a famous poem says ‘Rest, if you must, but don’t you quit!’
Believe you me, after week of traveling – I needed much rest!
all rights reserved By Maria De Leon MD
Hello friends …i have been busy with “life” (daughter going to college, taking care of ill family members, plus sealing with new diagnosis of lupus and recurrent pancreatitis on top of my PD); nonetheless not for one second have I forgotten about any of you nor have i stopped being the Parkinson’s Diva you all know who is passionate about bringing awareness to the world about PD .. and soon will be back to writing regularly about all the adventures and misadventures of the last several months including my new experience with Inbrija – i further wanted to thank everyone who follows my blogs for your support and to hear about the things that interest or concern you – so we may discuss. i am honored to have been nominated for #Wegohealth awards for best kept secret blog. if you feel that my blogs this one and defeatparkinsons.com have made a positive impact in your life please endorse my nomination and let others know about this blog by clicking on link above. Thank you.
Now, back to Inbrija, in my opinion -great drug awesome alternative method to bypass GI. However, I believe it is a poor delivery system for people who are off or are busy on the run and need a quick boost-
I have been looking at this Inbrija method of delivery …personally I don’t think is very patient friendly for what it needs to accomplish…first we are using when off…that little contraption that requires setting up opening pill packets, twisting and prepping pen that is used for inhaling drug is very practical for using when in an “off” state or when we are on the go…it is so much easier to pop a pill or to use Parcopa sublingual. You can’t just take out this product out of purse or bag and take. (Although i would be curious if we can prep pen and carry with us to us as needed? this would be a much more efficient way to use in my opinion). also i am not sure why we have to do 2capsules at each treatment and not provide a bigger space to do both simultaneously rather have to insert each one separately doing capsule placement maneuver twice. ( as i said before in my opinion as doctor and patient, i think this product delivery and use of medication would work best if larger pen to put both capsules at once or one large pill). but in reality would be better to have pre-filled pens to use quickly when on the go or experience a sudden “off”or simply need a boost as it happens to me quite often when I am traveling or speaking etc. plus it seems that it is a bit bulky to travel with if have to carry all pills separate from pen.
I am extremely curious to hear from anyone who has used or using drug currently? what you like or dislike and how is working for you?
P.s. Finally YES FINALLY the much awaited and anticipated PD women Journal : Parkinson’s Diva: Hello Possibilities is now being distributed.
all rights reserved by maria De Leon