Parkinson's, Eating, and Cyborgs

It's amazing how much we do during the day without thinking about it. Actually, it's a good thing we don't have to think about everything we do every day. If we did, we wouldn't have time for anything else. We'd need an entire crew to manage everything.

Captain:  Body - Report.

Data:  Heart - Currently at 74 beats per minute. Adjusting for emotional fluctuations and exercise levels, we should see an average of 69.327 beats per minute over the next 24 hrs. Blood pressure holding steady at 104 over 62. Lungs - respiration in the normal range.

Worf: Weapon systems operational, but only when startled. There seems to be some electrical malfunction. The limbs aren't receiving the proper signals. This indicates a weakness. Captain, are you sure this body is worth maintaining?

Captain: For now, yes. As long as critical operations hold, it's the only body we have until the 27th century. We need to keep it running. LaForge, what about the climate control?

Geordi:  There's something going on with the heating system; too many fluctuations. I'll see if I can make some adjustments.

I thought I was up on all the crazy symptoms of Parkinson's. I know we have to actually THINK about things like blinking, swinging our arms while walking, not looking and sounding like we are drunk when our meds wear off. I never thought I'd have to think about swallowing. 

I've been feeling sorry for myself since my neurologist and speech therapist agreed that I cannot eat unless there is someone close by who can do the Heimlich maneuver. This is when I learned about one more thing I do without thinking about it: eat. No more grabbing a few toasted almonds when I go through the kitchen. No meals when I'm alone. Makes me grumpy.

Scotty:  She canna take any more, Captain. She's gonna blow!

Until I remember some of my fellow Never Give Up Warriors who go through Gastroparesis. This is when one's stomach becomes paralyzed. I would try and explain, but I'd rather let Meg tell you herself. Meg Bernard is "Small Girl with Parkinson's".

In honour of Feeding tube awareness week, I'm reposting the story of when I got my feeding tube. I have moved on in my journey and now eat intravenously 'with my heart'; but my GJ tube is still a huge part of my world as I use the J portion for medication and the G portion to drain my stomach (yes, it's as nasty as it sounds). My central line, my GJ tube and my DBS are my miracles...AND they qualify me for the elite status of "Cyborg". You can't beat that!

                 It’s my Tube-iversary ~ Memories

DECEMBER 5, 2015 / MEG BERNARD

~ Meg Bernard; Small Girl with Parkinson’s

Happy “tube-iversay” everyone!
November 28, 2015 marked the one year anniversary of the absence of all things swallowed; the insertion of my Jejunostomy feeding tube (it bypasses my stomach feeding directly into the second part of my small intestines). It feels like only weeks ago, yet also a lifetime ago.

To read the entire article.... which you should... click here.

As much publicity Parkinson's has received because of celebrities such as Michael J Fox and Mohammed Ali, we still often get asked the question, "Parkinson's? That's the one where you shake, right?" Ah, if only that was all it did, most of us would say; not that shaking all the time is a walk in the park. I've been fortunate. While my biggest challenges are dystonic storms and choking, I can still eat and drink. Gastroparesis is one of those possibilities we don't hear about.  And Meg is an inspiration to all of us, even those of us who aren't Cyborgs... yet. It's all about being alive and ready to keep learning and discovering.

Captain: Now, do you have course and speed laid in?

Wesley:  Yes, sir, they are.

Captain: Very well, Mr. Crusher. Engage

  

A Word or Two for the New Year

I had just about decided not to even try making New Year's Resolutions. How many have I kept? Ever? Not many. All those good intentions of exercising daily, eating right, and accomplishing things which, never accomplished, now seem utterly ridiculous and unimportant.  There's enough to do to get through each day, why complicate matters with unrealistic goals?

Yet, it is a new year, a new beginning, and it's hard not to feel a deep urge to freshen up my life a little or give myself a kick in the butt (okay, that's actually not possible, but you get the idea) and decide to be a better person, in one way or another.

My inspiration came from Jeanne Nichols, owner of ModMood, a retro furniture store in Wheat Ridge. In her blog, Jeanne talks about how she chose single words as her resolutions. The first year, she chose one word, "Downsize", and kept it in mind in various aspects of her life throughout the year. It made me think. If I had to choose one word for a resolution, what would it be? I finally settled on this one...

SPACE

Make space in our home. Be aware of how much stuff is accumulating and give things away. Recycle. Most of all, be aware of what we don't need to buy. I want to only have as many things as we need or are important to us for some reason, but not more than we can care for. If something ends up in a box in a closet, it's not needed. Treasure the important things, those that can't be replaced. My treasures are old family photos and letters.

Make space in my doing. This is harder for me, especially now when I have so much to do, but I've made a start. I've decided to cut down on the number of different kinds of crafts I do. This will help with the stuff issue, too. I've gone back to knitting, my first craft, because I've done it so long, it's relaxing without having to think about it.

Make space for people. Be aware of how I listen - or don't listen to my family and friends. Oh, and get my hearing checked. Chris is going to insist, maybe because I asked him why he said he was going to vacuum the driveway (...back into... not vacuum..). Make space to spend time with people who are important to me. Write letters.

Make space in my friendships. People come and go in our lives all the time and there's so much we learn from each other. Let friends in, let them go, it's part of the natural flow of time. I value all my friends and tend to want to connect with more people more often than is practical, considering my time and energy, and I also feel guilty if someone tries to connect with me and I'm too busy to respond right away. Making space doesn't mean we don't care for each other. 

Make space in my thinking for new ideas, people, learning, and admitting when I'm wrong. I should get plenty of practice in the last one. Make sure there's plenty of space without computers and phones.

Make space to care, to be grateful, to give back. A lot of people have given us so much of their time, their resources, their loving care. 

Oh, and make time to watch a little Star Trek and Dr. Who now and then, just so I can have some perspective on SPACE. .... and time and relative dimensions ... and metal monsters.

What's your one word resolution?