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…
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:
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
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!
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.