Rantings of a Small girl with Parkinson’s ~ Hospital Edition

~ Meg Bernard; Small girl with Parkinson’s.

Allow me to set the stage for the telling of my ‘true life’ story ~ October 26, 2015; the early hours before dawn; a 4th floor room, on a Neurology unit, in a hospital; my hospital; BUT, it could, just as easily, be a hospital in your city….

~

It is 4 o’clock in the morning, I’m in the hospital…again. It’s impossible to doubt; this has been one of the most challenging experiences of my life; I can’t wait for it to end. This isn’t my first hospital stay; not by a long shot; but I’m determined it will be my last.

Today brought a new comer to the room I currently call home. She is 28 and living with MS, while I am 38 and living with YO Parkinson’s. Though our diseases are different, we have much in common; one thing being the frustration that comes from living with a disease that has so many invisible and ever changing pieces; easily overlooked and misunderstood by an uneducated observer; as well, our motor symptoms make us an easy target for those who live in ignorance of the world around them.

It was sad to discover that we have both experienced the largest degree of unkindness; judgement; criticism; disbelief and poor care; at the hands of people we thought we could trust the most…the nurses on the neurology units in the hospital.

** It is important that I immediately clarify that not all nurses and healthcare professionals fall into this category. I live in awe of the skill and empathy of so many in this profession. For those whom I owe my life; and for those who have; past, present and future; cared for myself and those I love, you have my eternal gratitude**

When admitted to a general neurology unit, it is common that I, at age 38, am the youngest patient. The majority of beds are filed with elderly stroke victims or those with serious head injuries; often making them incapable of being an advocate for their treatment, as well as their day to day needs .

ENTER MEG:  A young, cheerful, incurable optimist; who has a passion for life that cannot be dimmed. BUTshe is also a young woman trapped in a body that will not cooperate; living with a disease most expect to see in elderly people; a young woman who appears so small and harmless….

When suddenly, out of nowhere, WHOA! “JUMP BACK!” (shout out to ‘Footloose’)  

…”Are you telling me that this woman, with no medical background, actually expects; even demands; that she be an active participant in the ‘decision making process’ regarding her care? Who does she think she is?! It’s not like she has any experience”…

Oh, the stories I could tell you, my friends….

Pardon me? What’s that? You’re saying that you WANT me to share some of my “real life” with you? Well…since you asked so kindly…

My first story begins with something both mysterious and elusive; they call “Bedside rounds”. No no! It’s true! Just because you haven’t experienced it doesn’t mean it’s not there!

Legend tells us that “Bedside Rounds is a time for the nursing staff, coming on duty, AND for the patient to receive and share information regarding our care. Bedside Rounds can sometimes be a time for teaching residents and students. Bedside Rounds is a time of learning for everyone. And please be assured that your personal information will be kept strictly confidential.” So, you ask me, which part is elusive? BEDSIDE!! Please DO NOT stand outside my room, completely excluding me from the opportunity to learn and contribute to my care; which part is mysterious? Why are the rest of the patients on the unit hear all my private information while you discuss it in the hallway?…..B-E-D-S-I-D-E-!-! 

Now I will share with you the mythical tale of the “Parkinson ‘ON/OFF’ cycle”…apparently not proven and considered to be highly suspicious.

ON = meds working = improved control and mobility.

OFF = meds have reached the point of losing their effectiveness = loss of control over movement and often loss of independent mobility.

(yeah…right…)

As a person with Young Onset with PD, it disgusts me to have overheard this conversation between nurses in regard to me,”She was moving fine and didn’t need assistance getting to the bathroom half an hour ago, so why does she need help now? She must be faking it”. I sat with clenched teeth desperately wanting to dare someone to say that to my face. Yet I brush it off…I had been warned that people wouldn’t understand; I just hadn’t thought it would be these people. This is why I brought a cane, a walker and a wheelchair with me when I came to the hospital. As my mobility varies, my method of transportation varies.

Which leads me to the time honored tale of “PARKINSON’S MEDS ON TIME”  which, apparently, got lost in translation. WHY can’t you accept that when I say that I can’t wait an extra 30 minutes for my medication that I mean  it? WHY don’t you see that I know what I’m talking about? WHY when I ‘heaven forbid’ take my own medication; this being the medication that I brought from home, the medication you don’t want me to have control over, the medication you will have to pry from my cold dead fingers to get your hands on so don’t even bother trying because I tend to bite; do you get so upset?  Would you want your ability to either move, or become a living statue, left at the mercy of a pushing red button; a call for help so often ignored? I can’t imagine you would.

Five years into my diagnosis I have grown a thicker skin; not caring  what is thought or said about me by people in everyday settings. But it is incredibly disheartening when the cruelest remarks come from ‘health care professionals’ who, instead of criticizing what they do not understand, should instead take a few minutes to look in a book (or google it!) so that a patient can be properly treated.

Even better suggestion; ask me to tell you about my disease; learn a bit about me instead of standing, within earshot of my door, complaining. My message for those of you who feel threatened because I know more about the disease that I live with everyday then you do, “be prepared, because I will “rain on your parade”.

Now, onto the thank you’s….

Thank you for adding to my stress; thereby making my symptoms worse.

Thank you for making light of the disease I am forced to fight every day by treating me, on occasion actually telling me, that I am the least important person on the unit and you will do your best to ‘get around to helping me’.

Thank you for putting into question my value as a human being by not assisting me in having the shower that I have been requesting for 4 days, thereby making it necessary for me to find a friend who was willing to drive to the hospital, pay for parking and then do your job…

…your job…the job you chose…the one you get paid to do…

After four days of asking, not one of you showed enough respect, enough decency, enough empathy or compassion to give what is considered a basic necessity. How sad.

Thank you for explaining to me that dry heaving isn’t vomiting; which means that it doesn’t hurt, isn’t anything of interest, isn’t a sign of any problem and therefore isn’t necessary to record…pause…this feels like the appropriate time to throw out a reminder; I have a feeding tube that goes straight into my intestines, bypassing my stomach; one cannot throw up what is not there. As a potential point of interest, I would rather throw up something than nothing. Dry heaving is incredibly painful and does not give any relief afterward, as ‘traditional’ vomiting would.

Thank you for standing right outside my door, laughing and gossiping about patients…

… She is alone; on her bed; pain wracking through her body, like a silent scream, as she attempts to mask the sound of her sobs. A river of, what could only be, never ending tears pour from her eyes as the reality of the news slowly begins to seep through the cracks in her mind; the ones she couldn’t seal quickly enough. Words play over and over in her head; shredding her heart as she grieves the loss of herself…myself…

…shamefully forgetting that you are surrounded by silent suffering. Surely there is a more suitable place for your fun.

More than once I have imagined what would happen if you agreed to step into my body for a mere 5 minutes. I can assure you, with full confidence, that in under a minute you would be begging and pleading to be released from the cage…

…cage…this cage…this cage which is my body…this body which is mine…the one I live in…everyday.

It is because this; no vacation, no weekends off, no leaving work to go home at the end of each day; that we, people with Parkinson’s, have been forced to become resilient; often silent; warriors. We have also learned a kind of empathy and compassion that we wouldn’t have discovered in any other way. Please let us show you and teach you what we have had to fight to learn, in order to become who we are.

It is now 5 o’clock. I’m feeling thankful for a sense of humour which is quietly giggling with glee as it plans some mischief to leave in its wake…every flashlight on the unit being hidden in an obscure location…. I wish you could see me smiling as I lie here imagining the mayhem; while I close my eyes and pray for sleep to find me.

~

I suppose I could end the scene there; allow you to draw your own conclusions; but what kind of advocate would I be if I didn’t clearly point out the moral of my story; the hard facts of my reality.

What it comes down to is this; I’m here to get well, not to win the ‘miss congeniality’ award. If that means that, by insisting on proper care, the staff don’t like me; I am willing to accept this.

The moral of my, true life, story turns out to be the opposite of a frequently used phrase; one that I despise and will never use; so listen closely. When it comes down to my life or my death; to being your friend or getting the care that I need; remember this…

“It’s NOT just business, it IS personal”.

~ Meg

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12 thoughts on “Rantings of a Small girl with Parkinson’s ~ Hospital Edition

  1. Meg,
    You are strong and wise. I know PD and some of its friends that join in, because it’s my struggle as well. There truly is a no knowledge factor out there and we all need to be loud and clear and educate folks, including hospital staff. It’s very disturbing when those who are caring for us think things like they do. It is so wrong. Keep up the giggles! Thanks for sharing! We are going to warrior on !
    Be blessed,
    Laurie

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  2. I have early onset parkinsons and it took me a year to get a doctor to try me on the meds. How do you know when a feeding tube is necessary? I’m getting to where food just doesn’t taste right anymore.

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    • Hi Sandra;
      Sadly the decrease in sense of smell, which adds to food not tasting right, is another of the frustrating non motor symptoms that we’re stuck with.
      Another non motor symptom is difficulties with the digestive system (Google Parkinson’s and the vagus nerve if you’d like to know more) and it is different for everyone. With PD, very rarely, the vagus nerve is so damaged that it causes gastroparisis…
      “Gastroparesis is a condition in which the spontaneous movement of the muscles (motility) in your stomach does not function normally.

      Ordinarily, strong muscular contractions propel food through your digestive tract. But in gastroparesis, your stomach’s motility works poorly or not at all. This prevents your stomach from emptying properly. Gastroparesis can interfere with normal digestion, cause nausea and vomiting, and cause problems with blood sugar levels and nutrition” (Mayo Clinic)
      Unfortunately my case of gastroparesis was severe enough that it required the insertion of jejunostomy feeding tube
      (A feeding jejunostomy tube, also called a J-tube, is a tube inserted through the abdomen and into the jejunum (the second part of the small bowel) to assist with feeding and to provide nutrition.)
      This means I take nothing by mouth and it bypasses my stomach, which means that my nutrition, water and medication are all given through this tube.
      It is not something that I would wish upon anyone, BUT I am incredibly grateful for it because it allows me to continue being a mother to my children!!
      Definitely speak to your MDS or neurologist with any questions regarding digestion, swallowing or challenges with food in general.
      Thank you for your question!

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  3. Thank you for sharing your story. I am not only a nurse but the caretaker of my husband, now 54 with PD for 10 years. I not only am appalled at the behavior at some in my profession but the honest lack of complete understanding that PD is so so much more than just tremors. And the fact that hospitals tend to run on their schedule and not that of the patient, especially for the “on/off” cycles. I mean, if my husband could not take his medicine when he feels he needs it, and he can absolutely tell, it stresses him out to the max exacerbating his condition. I long for the day when more people understand that my husband is not drunk, or faking because one minute he needs a wheelchair and the next he can walk. Thank you again for sharing your story, you are not alone in this journey! Peace, A.C.

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    • Thank you for for sharing Aubrey. It is incredibly disheartened to simply be trying to pick up a pack of gum at the grocery store, and then be accused of being “stoned”. Educating and raising awareness really is the key isn’t it? Also finding others who have similar experiences!

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  4. Thank you for sharing your “real life” one so few can relate to or understand. I applaud your ability to embrace and overcome (psychologically) your diagnosis a diagnosis I share with you. Diagnosed at 36, am now 43 but it is by far not all I am. I am a mother of two amazing boys a friend to many, a wife, sister, daughter and the list goes on. I tell you this because your words helped to remind me of this and for that I want to thank you.

    Trudie

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  5. Can you email me? I’m a filmmaker with PD and I’m working on an education campaign to deal with exactly this issue and a few others! I was forcibly restrained by nurses when I came in with dyskinesia and was again ignored on another visit when I couldn’t breathe. When my friends said I had PD and was having a RX reaction the intake nurse said “really? Did you look that up on webMD?” I’m done with this bullshit. Time for some education. I’ve been filming myself and encounters for 5 years. Time to get it out there. Would Love to talk to you about using a couple of your quotes in my video are doing an interview. Email me at Jennilyn.leftturn@gmail.com or call 917.405.6850
    If you’re up for talking.

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  6. Pingback: THE SMALL GIRL WITH PARKINSON’S – Robinson vs. Parkinson's

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