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My Parkinson's Journey

In which Terri shares a humorous look at her journey with Parkinson's disease and Dystonia:

For me, illness and health are not opposites but exist together. Everyone has something that is challenging to them. Mine just simply has a recognizable name. My life will take a different path because of this but that's okay. Everyone has changes in their lives that create their path.  I'm learning how to enjoy whatever path I'm on.

Wisdom and Strength and Love Shall Grow

Terri Reinhart

Having a sympathetic young police officer NOT give me a speeding ticket is one of the perks of being an elder, but being an elder also means learning how to let go. We have to let go of bits of ourselves, what we used to do, who we used to be. With any progressive neurological disorder, letting go starts a lot sooner.  What happens when we get to the point where there are things we can't do anymore? 

Okay. Stop right here. I know what you're thinking. I've heard it before, many times. Please don't send me the quotes and memes saying, "Stay positive! Don't ever say you can't do something!"  I don't want to see the videos of 99-year-olds riding skateboards, climbing mountains, or running marathons or the videos of 99-year-olds with Parkinson's riding skateboards, climbing mountains, and running marathons. I get the point. If they can do it, so can I.

Right.  

The message in these memes and videos? Running marathons = awesome, walking with a walker = not cool.   Climbing mountains = awesome, needing help to climb stairs = not cool. Riding on a skateboard = awesome, riding a mobility scooter* = not cool. If we must have Parkinson's or if we must get old, be like the awesome ones. I know it's all meant to be inspiring, but too often it's discouraging. Nope. I obviously can't be awesome because, try as I might, I'm not going to climb mountains or run marathons or ride skateboards.

Stop again. Breathe out. All those memes and videos? Hit the delete button.

Now, a reality check. Giving up the awesomeness of climbing mountains, running marathons and skateboarding isn't difficult for me. I don't do those anyway and, if I'm truly honest, I don't want to. It's when I have to give up things I love to do, that's my true test.  

Because of fatigue issues, I've had to give up a few things - working full time or  even part time, volunteering regularly, doing more than one major activity per day and not more than three per week. I've been very lucky. What I've had to give up, I've been able to replace with other activities like naps...and, well, other things... like naps.. and... Okay, instead of felting intricate pictures and figures, I'm knitting little animals for my grandchildren.  I can join my husband on his daily walks if I adapt and use my cool scooter*. I can, occasionally, be in a clinical study and once in awhile, I even get paid for it.

We all respond differently when we are faced with chronic health challenges and the challenge of growing older. Some will choose to not go gentle into that good night, but will, as Dylan Thomas' poem advises, rage, rage against the dying of the light. Some will pretend their challenges don't exist and try to pass as a younger person in perfect health. Some will be convinced their challenges will go away if they are just positive enough. Some will climb mountains and ride skateboards till the day they die. 

I don't want to spend the rest of my life raging or feeling guilty because I'm not climbing mountains.

My mentor is Dr. Paul Zeiger, engineer, scientist, university professor, yoga teacher, poet, and PWP (person with Parkinson's). He says we are given many opportunities to reconfigure our lives according to the resources we have available to us. He knows. He and his wife, Carolyn, have had to do this time after time. Paul says that growing old is the most difficult work a person will ever do. For some of us, a marathon is also known as getting through each day.

There is a verse which is said by the first and second graders at the Waldorf school at the end of each day. It allows the children to put their academic work aside, let it rest.

All my doing now has ended.
What I have learned shall rest.
When I have done my very best,
wisdom and strength and love shall grow
and I will bless all those I know.

We tend to identify ourselves by what we do and when we lose the ability to do something, it can be like losing a part of ourselves. We have to reconfigure ourselves and find out what this new.... or older body can still do. If we get stuck trying to hold on to who we were once upon a time, we're not leaving room to discover who we are now. The time for doing some things may have ended, but we can let them rest and trust in what we have learned from our doing.

We have to grieve and maybe even rage a little. But what if we take Paul's advice? What if we could let go of those lost parts of ourselves and let them  go gentle into the good night? If Paul and Carolyn's lives are an example, we know if we can let go and let those things rest, our lives are not empty, but will include wisdom, strength, love, and the capacity to bless those around us.

Skateboarding is optional.

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*My mobility scooter IS cool. Some 12 year old boys told me so. It is a TravelScoot, the best little scooter ever. Thank you, Roger, again and again, for blessing me with this gift and the bigger gift of a connection with our family in Luxembourg.

 

 

 

The Privileges of Being An Elder

Terri Reinhart

Last night I drove our daughter to her play rehearsal. We made good time, but as we approached the turn into the parking lot, I glanced in my rear view mirror and saw flashing lights behind us. A police car. With flashing lights. Maybe he needed to get around us? I turned and he turned right behind me. I parked and he pulled up and stopped, blocking my car.

Emma got out, saying "Bye! Good luck!"

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Apparently, I had made better time than I'd thought and the nice young policeman seemed to think I could've gone a wee bit slower. He asked to see my ID, registration, and proof of insurance. I resisted the urge to give him my Medicare card. He took the info and disappeared into his patrol car, which was still blocking me from going anywhere. 

Several thoughts went through my mind. Would there, could there be any chance of getting off with just a warning?  Yeah, right. I told myself there was no way in hell I'd be that lucky. You see, I remember very well which friends got warnings and which of us got tickets. The ones who were let off the hook were almost always very attractive females. Never happened to me. I sat, waiting and wondering how I was going to tell my husband about this and how much mileage he'd get out of it. And how were we going to pay the fine? Another fine mess I've gotten myself into, Ollie. 

The policeman (did I tell you he was young?) eventually came back and, miracle of miracles! he gave me a warning! It was a very gentle warning, too. He understood. It was the hill. It was so easy to get going too fast. He said it knowingly as if he was admitting it had happened to him more than once. But, just be careful, he said, because the fine is pretty steep. 

I realized how privileged I was in that moment. Not only am I white, and female (occasionally it's a help), but I don't think he expected to see a grandmother when he pulled me over. All the way home, I basked in the wonder and privilege of being an elder. I didn't even have to be gorgeous. I just had to be grandma. 

And today, I went to the thrift store and got my senior discount, without even asking. Life is good!

 

 

 

 

Wetting Yourself and Other Fun Things to do with Parkinson's Disease

Terri Reinhart

..or How to have your tea and drink it, too.

I was trying not to panic this morning. I was out with a friend and had a large cup of spicy Chai tea as we sat outside and enjoyed a beautiful spring morning. Then the wind came. It wasn't a nice spring breeze, it was a Wyoming wind that had lost its way, found itself in the middle of Denver, and was pissed off. My knitting went flying off the table and as my friend bravely attempted to return our mugs to the kitchen, I wondered how far it was to Oz and whether the wizard would help us get home.

Soon after we left, a new problem arose. The wind had picked up every bit of pollen, dust, and other allergens it could find. Revenge. I don't know why this particular wind was out for revenge. I mean, really. It was its own fault if it took a wrong turn at Laramie and went South instead of North, but it was and it sandblasted us with the ingredients for a major allergy attack. I started to sneeze.

I started to sneeze and I couldn't stop. Problem number 3 - I spent the rest of the trip in the car trying to hold a pleasant conversation while sneezing every few seconds and praying frantically that I wouldn't pee in my friend's car. 

Any woman who has had babies knows the difficulty in controlling dribbles while sneezing or coughing. Parkinson's just makes it worse, much worse. I talked with my doctor about this a few years ago. She recommended exercises and a small dietary change.

"Are you drinking tea? Tea is a diuretic and it will make the problem worse. Don't drink tea."

Don't drink tea? Tea? I sat with my mouth open, totally baffled. Give up tea? That's like asking me to give up water... or air... or knitting. I have Chai running through my veins. Fortunately, there's another possible way of dealing with this which doesn't require giving up anything. Urinary incontinence pads. Like large menstrual pads, only much more absorbent. Sounds insulting, you say? YOU wouldn't want to admit to wearing these? Hey, if it's that or give up my tea, I'll do it. 

I'm done with being embarrassed about wearing pads. It's better than the embarrassment of soaking my pants, which I did last week when my husband had to do the Heimlich on me one more time. I changed clothes and put "Grandma diapers" on the grocery list. My husband does the shopping as I tend to wear out before making it to the produce section. He's very happy to purchase anything I might need, even if it comes from what some consider to be the embarrassing part of the store. 

Now we find another challenge. Where do you find incontinence pads and how do you tell the difference between those and menstrual pads? They're not labeled! Look at the boxes when you're at the store next time. Okay, some are, but it's in the small print. What you see are words like "overnight protection", "ultimate absorbency", or "thin and light". What you usually don't see are the words "menstrual" or "incontinence". It's not easy for most guys to know which is which and, trust me, menstrual pads aren't enough to cope with a large mug of chai tea and an allergy attack. 

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Okay, most women know these by the brand names, but our husbands might not, and of course, there are many men who also have Parkinson's and have problems with incontinence. Hey, companies, could you please label these products properly? I don't want to make it a guessing game for my husband when he goes shopping. "Menstrual" and "Incontinence" are not dirty words.

We're pretty weird in our culture about these things. If it's a normal bodily function, we invent ways of talking around them. I grew up learning to call my menstrual period, "my friend", as in, "my friend came today". Even that was said in a whisper and only to another female. One woman I knew described her period as "an angel of God coming down to say 'not this time, honey'".  We certainly don't want to admit we can't always control our bladders. Even though a lot of people go through this (though most would only admit to little dribbles) wetting ourselves is equated with getting old and senile. Nice words for getting old don't work when you're talking about peeing your pants. Senile, decrepit, doddery, feeble, in one's dotage. 

I made it through the morning without mishap, even though I had run out of incontinence pads and my husband had brought home the wrong ones from the store. Hopefully the wind will die down, too, or at least find its way back to Wyoming, where they're used to that sort of wind. 

I sneezed. I peed. I changed. All in a day's journey with Parkinson's and Dystonia.

 

 

 

 

Dentist Phobia

Terri Reinhart

My husband recently went to the dentist. He came home with instructions to get an electric toothbrush, a waterpik, special toothpaste, and a gel for dry mouth. He's taking care of his teeth, though he complains about how long the routine takes. "I'll see you in an hour or so," he moans as he closes the door and starts up the toothbrush. 

Now he's telling me I should go in for a dental check-up. 

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That's like gently suggesting I make a visit to the local torture chamber. "It'll be fine, honey, just think of the nice back stretch you'll get on the rack." Right. With Parkinson's and Dystonia (or vise versa), there's enough torture without adding to it. 

I do need to go in. I know I do. Dental health is important to our overall health. The other day I took my parents in to see the dentist. They both have dentures. Dad got his before he was 30. I don't exactly have good DNA when it comes to teeth. Seeing my parents struggling now with dentures that don't always fit properly (though that is probably due to using too much dental adhesive) and sores on their gums, I figured it's time for me to think about getting my teeth checked. First, however, I will talk with my neurologist.

There are a few things I know: 

~ I can use an electric toothbrush only if my meds are working well and my dystonia is not acting up. Otherwise I run the risk of forcefully cleaning out one of my nostrils.

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~ Some of us are at high risk for choking. While dentists have helpers who suction out the saliva from our mouths, they either can't get it all or they ask you to close your mouth around the suction tube. The latter will set off my dystonia quicker than just about anything. I get tired of having to explain this. They don't always believe me. One dental assistant physically closed my lips around the tube. I feel about suction machines like many dogs feel about vacuum cleaners.

~ Epinephrine, which is in most dental local anesthetics, can interact with our Parkinson's meds. What does this mean? At one visit, the dentist accidentally injected the local anesthesia into a vein. I started to shake uncontrollably. My heart was racing. I started going into a dystonic storm. A reaction like this should have prompted the staff to call 911, but they didn't. They let me shake and twist with a racing heart for what seemed like hours. I'm not sure how long it really was... maybe 20 minutes? It was terrifying.

~ Don't take Ibuprofen before a visit to the dentist. It can make your gums bleed, which then makes it easier for the dentist to inject into a vein. 

~ Don't go to a budget dentist. In all the articles I read about Parkinson's and dentistry, they all agree that our visits should be shorter so our medication doesn't wear off during the visit. It won't happen during the assembly line dental work at a budget clinic. 

Which brings me to another challenge. When people talk about Universal Health Care (Medicare for All, etc), there's never a mention about dentistry. Medicare does not pay for dentistry at all. You have to purchase a separate policy for dental coverage. I have a dental policy which covers basic check-ups and basic cleanings. Nothing else. The local dental college sees patients at about the same cost as the budget clinics. The dental college is on the other side of town, which means up to an hour to drive each way. Both the dental college and the budget dentists require either payment up front each visit or a contract with monthly payments. Dentists take one look inside my mouth and plan their next overseas holiday. There are programs to bring dental health care to children, but no programs for adults.

I know I'm not the only one out there with dentist-phobia, but before I embark on this adventure, I'm going to do some more research and talk to my neurologist. 

The Hare is Back

Terri Reinhart

My kitchen needs rearranging. Currently, the baking supplies can be found in any one of four different cupboards, the pantry down the hall, or on the shelves in the laundry room. Generally, I don't pay much attention to my lack of efficient organizing. It's like when my son learned how to type. He never caught on how to do it the right way, but he was still able to pass the speed test at school. I'm not trying to pass a speed test on baking or even on getting everything ready to bake, but I would have liked to be a wee bit more together when my friend came over to bake with me this morning. 

First of all, the reason she offered to come over and help bake is because I had to use up some of the 3 1/2 gallons of buttermilk in my refrigerator. I didn't want it to go to waste. Why did I have 3 1/2 gallons of buttermilk in my refrigerator? Because I didn't want it to go to waste. The community pantry had about 15 gallons of buttermilk and, at the end, workers told me, "Take it! Take it!" I should be commended for not taking all of it.

What was I talking about? Oh yeah, the kitchen. I'm ready to sit and ponder how I might redo the cupboards. While I ponder, I'll knit. Knitting is cool and it helps  me think. I wonder if I should make a sweater or a poncho for the little kitty I made. A sweater would look nice, but a poncho would be easier. Maybe I'll go look up a few patterns on the computer.

My desk is a mess. I need to reorganize this area, too. Since I watch movies on this computer and knit at the same time, I have my yarn basket under the desk. Brilliant move, methinks. The knitting needles I used on my last project are sticking out of the pencil holder and the pattern I'm working from is.. where? back in the dining room. My other knitting supplies are in my work room, which I have been rearranging and reorganizing. This is why there are boxes filled with odds and ends, piles of books, and dog toys all over the floor.

But I digress....

I should be making dinner. 

Leftovers. I'm cool. Pizza doesn't take long to warm up so I have time to get something else done first.

Distractible? Yeah, but I don't mind. It’s kind of nice for a change. For the last six months, I’d found myself dragging more and more. I thought I’d learned to appreciate the Way of the Tortoise, but the Tortoise wasn’t moving much anymore. I wasn’t ready to learn the Way of the Potted Plant.

The worst of it was, I didn’t care and I knew I didn’t care. I didn’t want to not care. It was depressing. I had gone four whole months without going to coffee with a friend. I hadn’t prepared for the holidays. No baking. No cards. No shopping for gifts. This was not acceptable. I figured it was related to my medication and decided I would definitely bring it up with my neurologist.

Then, right before Christmas, I realized I had run out of the drug which happened to be the one that had introduced me to the Way of the Tortoise. I ordered it, but I knew it would be a week or more before it would arrive. Unintentionally, I took on the experiment of going off this drug for a week. 

This is where I'm supposed to say we're really not supposed to do this and warn you all to not do what I did. It's still good advice. I probably should have called my doctor, but it wouldn't have gotten the meds to me any faster. No lectures, please, or if you must, at least don't shout. My startle reflex is drinking espressos again. I’m a wee bit jumpy. I'm back to the Way of the Hare.

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After a week off the drug, I wondered why the heck I was taking it. Granted, I was having a lot more dystonia. I also had a lot of nervous energy, but the upside was I got more sleep - good deep sleep - than I'd had in a long time. I had energy. I didn't care if I was a bit scattered. Dystonia can be painful, but as things go, I’d rather feel pain than not feel anything.

My neurologist agreed with me and said I could and should stay off the drug. She then explained something else. I am now 60 years old. I am no longer a young Parkinson's patient. We have to look at drugs differently now, she said. Because I'm old, I said. My doctor smiled. Older folks' bodies respond differently to medications. Usually, it means there's more of those non-marketable effects we're all so very not fond of. My body tends to respond to drugs in rather weird ways at the best of times.

I'll take that. I'm just happy to have some energy again... even if it means it means more dystonia. It's a matter of what's harder to put up with and, well... how normal do I have to be anyway? 

 

 

Was that a ....? Never mind.

Terri Reinhart

There are a lot of places where dogs are allowed to visit nowadays, but hospital infusion centers are not the likeliest places to see someone in a wheelchair with a poodle on their lap. It worried me. Had I really seen this? Sure, the poodle could have been a service dog, but .. well, how many service dog poodles have we seen? I turned to my daughter. Dare I ask? 

There's a new commercial out about Parkinson's disease. It's presented as an awareness ad; awareness of the lesser known symptoms of hallucinations and delusions in Parkinson's. The ad is very emotional, and I understand because these symptoms can be frightening, but it's also stirred up quite a lot of mixed feelings within the Parkinson's community. I mean, come on! It's hard enough to feel confident socially. Now you're going to blast it to the world that we're seeing things? The ad doesn't start explaining delusions, but just the word... it doesn't sound good. 

And that's part of the problem. As soon as we hear of the possible issues that can affect our thinking, we immediately want to say, "but that's really rare. It doesn't affect most people", and by that we mean, "not me". What we also mean is, "dear God, please not me". All sorts of our culture's worst insults come to mind, especially as they're being used often by and about people in politics these days: crazy, loony, lame, insane, idiot, screw loose, mad, demented, mental, or sad. The stigma of mental illness is often more damaging than the illness itself. When there is such shame attached to any health condition, it makes it much more difficult for people to ask for help.

Okay, with this in mind, having an awareness ad about hallucinations should be a good thing, right? By the way, this ad is put out by a drug company. Oddly enough (or perhaps not so oddly), the ad doesn't mention the fact that a lot of these symptoms can be caused by certain Parkinson's drugs. There's no suggestion to have your doctor evaluate the meds you are already taking. The patient in the ad is portrayed by an actor. The sound effects and music are eerie. The whole feeling is one of sadness and fear. But they tried. They are honestly trying to bring awareness to these symptoms, the symptoms we don't want to talk about. And sell drugs. Let's be honest. They're marketing their product.

So how can we bring awareness to this type of issue without portraying the person as sad and suffering and dependent? ... without portraying these issues as a tragedy? Could we provide a somewhat more positive picture? When my able bodied friends see a commercial like this, I brace myself and get ready to hear their condolences on having this horrible, tragic illness that has obviously robbed me of having any sort of a normal life. 

Would someone like to stand up and tell me what normal is? 

On the other hand, there are those typical drug company commercials which show beautiful, cheerful, active adults swimming, climbing mountains, taking their grandchildren to the park... and hey! They are beautiful, cheerful, and active because they take this drug! All the while, of course, you hear the narrator speaking as quickly as possible describing all the possible side (ie: non-marketable) effects of this drug and all the ways it can kill you. Let's not go there.

I hallucinated once - only once that I know of. I was in a restaurant with my grandson and I watched a family come in. Someone was pushing a stroller that had a doll in it and someone else was holding a chihuahua in their arms. A couple adults took turns holding the baby doll. Why would anyone bring a chihuahua into the restaurant? And, putting the dog in the high chair? I said something to my grandson and he looked at me and laughed and said, "Grandma, you're silly!" That was my first clue that just maybe my brain was playing a few tricks on me. Will it happen again? I was relieved when I finally asked Emma about the dog I saw at the infusion center. She had seen it, too. Someone really and truly had a service poodle.

What do I need to know about hallucinations? The one I had was right after starting on new medication that gave me insomnia. I've since talked to others who've had hallucinations when taking that particular drug. My experience with hallucinations was startling, not scary. All the same, it took awhile before I told anyone about it. Had I seen this ad right after my experience, I would have totally freaked out.  

While I don't have THE answer, perhaps it's time to let a group of people with Parkinson's create these ads.

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Clarity is Not Dumbing it Down

Terri Reinhart

Did you understand me?

The last time I was in the emergency room, I was a little taken aback by how one of the nurses spoke to me and I realized she was interpreting my self-advocacy combined with, what I considered to be a rational fear, as hysteria. The situation was this: I occasionally have dystonic storms. Most of the time I do okay and ride out the storm at home. Sometimes, as the article in the link describes, they get away from me. My rational fear is of medication reactions. I've had a number of times when medications have depressed my breathing and virtually paralyzed me, making it impossible to let someone know I'm in trouble. 

At this emergency visit, I was being pumped full of drugs. I made it clear they needed to monitor my breathing because of past reactions I've had. They assured me they would. A couple of hours later, in the room, I told the nurse again that my breathing needed to be monitored. She smiled and said, as though explaining to a 5 year old, "Don't worry, if you stop breathing, all sorts of bells and whistles go off at my desk." Her body language and tone of voice made me feel as though I was just being silly. I didn't know they really were monitoring me. As far as I could tell, I wasn't hooked up to any monitors and the monitors in the room were not on, but I was afraid to say anything more or ask any more questions. She made it very clear how they saw me as a patient. 

How could I have communicated my concerns in a better way? How could the doctors and nurses have communicated to me more effectively?

Patient engagement

I've been pondering this question for a long time, not just because of this one visit to the emergency department, but because of numerous experiences with medical professionals when I accompany my husband, my parents, or one of my kids to an appointment or the emergency room. One phrase I remember hearing (and using) any number of times is "Why should I go back? I know what they're going to say." How many people put off going to the doctor for this reason? 

Several years ago, I became involved with the wonderful organization called PCORI (Patient Centered Outcomes Research Institute). PCORI channels funding to various entities for clinical studies. The applications for funding for these studies go through a rigorous process, all of which include patient representatives in making the decision. I was one of those patient representatives during one funding cycle. It was a lot of work, especially as all four of the applications I read were chosen to be presented during the in-person review in Washington DC. It meant I had to attempt to speak about each one. It was exhausting and I don't know if I really have the stamina to do this, at least not often, but it was also amazing to be part of the process.

The Alan alda center for communicating science

I was also able to attend the first annual meeting of PCORI in 2015. This was truly an amazing experience. To hear first hand the direction we are going in the field of health care was awe inspiring. I wish I could go every year. I especially wished I could have gone this year because one of their keynote speakers was Alan Alda. Yes, the Alan Alda, aka Hawkeye Pierce from M.A.S.H. His presentation was titled, "Improving How We Talk to the Public about Science and Health". Fortunately, even though I couldn't attend in person, I was able to attend virtually through their webcast. Mr. Alda's talk was shown live and would not be archived, so this meant getting up at 6:00 am to be ready and somewhat awake when it started at 8:30 eastern time. It was worth the effort.

Few of us know about the work Mr. Alda has done in this area. Having had a life long interest in science, he hosted a PBS program called "Scientific American Frontiers". He discovered by asking questions of the scientists, he could help them to explain their work in such a way that he could understand it and become even more excited about it. This, of course, helped the audience to become engaged as well. Taking this idea even further, Mr. Alda, along with others at the Alan Alda Center for Communicating Science at Stony Brook University, have created training programs - workshops, online learning, and private coaching - all designed to help scientists and health professionals to communicate in such a way that others will understand and be engaged. 

I will let Mr. Alda explain it himself. This isn't his talk from this week, but a short video I found on youtube which contains a small nugget of the treasures he shared with us.

Good Communication 101 by Alan Alda

Real listening doesn't take place unless you're willing to let the other person change you ~Alan Alda

Considering what I learned from listening to Alan Alda speak, what could I have done to communicate my concerns better? What could the doctors and nurses have done? To be honest, I'm not sure I could have done anything more at that point. I was in pain. I was frightened. There's something about labeling someone with anxiety that irks me. It's the tone of voice that says "Oh, you're just anxious. Aren't you being silly!" Maybe I'm not anxious. I'm afraid. Fear is not an emotion you hear about a lot these days, but how do you go through an emergency health issue without having some fear? Had the nurse acknowledged my fear and addressed it, things might have been different. She could have explained how they were monitoring my breathing and heart rate. I would have understood. She could have asked if I would feel more comfortable if the monitors were on in the room as well so I could relax and know the monitors were working. 

On the other hand, I don't wonder why this is difficult for medical professionals. Caseloads are so high for all the doctors I see, I don't know how they can possibly get to know their patients. When they are rushing from one room to another, where's the space for any connection? Perhaps what I could do, if I'm in a situation like this again, is try to connect with the doctor or nurse. Ask them about their busy day. I could acknowledge their undoubted frustration with trying to effectively communicate with patients, often patients they only see once or twice a year, in the short time they are allowed for each appointment. How many hours do they work? How often do they have to miss things they'd like to do? How stressful must it be to work like this! 

It's very important for us to see that science is done by people, not just brains but whole human beings, and sometimes at great cost.
Alan Alda
 

 

 

 

Unplug

Terri Reinhart

Online support groups. Podcasts. Brain games. Websites about medications. Websites about exercise. Blogs. Reading blogs. Writing blogs. 

There are so many ways our modern technology can help with chronic health conditions.

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Reading email. Paying bills. Ordering birthday presents. Contacting doctors. Ordering prescriptions. Making appointments. Checking appointment schedule. Checking calendar. Reading more email. Keeping up with local, national and world news.

Obligations. Thankfully, computers make it easy to do this stuff online quickly. We don't even have to talk to real humans. 

Contacting friends. Planning social outings and family gatherings. Watching movies. Watching TV shows. Playing card games. Practicing language lessons. Listening to music. Reading comics and books online.

If the computer could cook meals and clean the house, we could sit in front of it all the time and not do anything.

AAUURRRGGHHH!

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I've been trying hard to limit my time on the computer. My eyes have been helping as they start to burn after about 10 minutes, but 10 minutes here and there add up. I know I won't be able to get away from it completely, and I don't want to, but I've decided I am taking one day each week to be offline completely. Totally and completely. If anyone needs me on Sundays, they can call or stop by. 

It's not like I'm on the computer all the time and don't do anything else. We have our grandchildren over, I watch over my parents and try to keep track of what they need, Chris and I go for walks, I dance, go out with friends, and go to the local thrift shops. I play with the pup. It's just too easy to get drawn into more and more screen time. After all, there's so much to see and read and hear. It's overwhelming. 

I'm not even talking about the negative stuff. We all know about divisive political stuff, the rumors, the supposed news sites that are promoting extremely biased or blatantly false information. Even if we stay completely away from all this (hard to do), there's too much GOOD stuff online. Too much of a good thing is not good anymore. It's mental indigestion.

But wait! Duolingo just emailed to remind me I'm on an 11 day learning streak - "You're killing it! Keep your streak going!" And Nanowrimo (National novel writing month) starts next week! I haven't posted any new blog articles on my other sites for awhile! I haven't connected with my caregiver's support group in weeks! I haven't even watched the latest episode of Brooklyn 99! 

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And we haven't made it over to Riverside cemetery to walk around and see the graves of historic people who are buried there. We haven't gone up to Golden and visited the little shops up there or driven anywhere to see the aspen leaves turning gold. I haven't finished building my patio outside and our free library needs a coat of paint. It's not just the computer holding us back, but the ease in which it pulls us in doesn't help.

Heck, I need at least two days a week totally offline. Will start with Sundays.

I will purposely break my "streak" of learning. Who needs that pressure? (I know, it's supposed to be encouraging.) The blogs will wait, as will Brooklyn 99... and The Orville... and Ghosted.

As for Nanowrimo, I will work on my writing every day (working on a ghost story), but I will use my handy dandy NEO writer, a portable word processor that is very low tech. It is so low tech, it is powered by AA batteries and those batteries last around 700 working hours. It's the perfect word processor for writers because it's hard to edit. I can pound out a first draft without having to overthink every word. It's a typewriter not a computer and I can take it outside with me.

Having a day offline will be a gift to myself. Being outside is pretty healthy, too.

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