Birthday to Remember

April 8th, My Birthday 2019

Do you remember any of your birthdays? How you celebrated? A special gift you received? Someone who surprised you with a visit or a greeting of some kind?

I try to have something memorable happen on my birthday most every year, and I’m willing to come up with it and do it alone if no one is available.  This year I didn’t have to do it alone. My mom and I did something together. We got sick.

Food poisoning, but we can’t figure out what it was for sure. I spent the day barely able to move without passing out.  In spite of being very dehydrated, neither of us wanted to risk putting food or drink into our unstable stomachs.  I spent the day crawling from the bed to the recliner and back again. I cancelled the one appointment for the day – the gym – since there was no energy available for training.  In short, it was not the memorable event I had in mind.  I get a rain check, right?

Today is better. We are both on our feet a little more, but still glad not to have a lot to do today. It is amazing how dependent we are on vital elements, like water. Take away ten pounds of water weight, and I’m barely able to function.  It definitely reminds me of my episode of dehydration on the Appalachian Trail and the recent D post I wrote on dehydration. 

It all makes me think of how we are designed, with enough flexibility to cover the usual ups and downs of life. Most of the time we don’t have to think about how much we’ve eaten or not eaten, or whether we’ve had enough to drink. Food and beverage are available to us on a pretty regular basis, leaving us free to worry about lesser things.

But there are places in this world where it is not so.  What must it feel like to live in a body that is little more than skin and bones, where there is no food or water to be had?  It happens in our own country, where being homeless or in poverty can make it so difficult to be fed with something nutritious.  I was overcome with weakness, loss of motivation, pain and the need to rest somewhere safe.  I can’t imagine being out on the street in a city, or out in a desert village in Africa and trying to survive under those conditions.

I am grateful that I was at home yesterday, recovering slowly as I watched birthday greetings come in on Facebook. I got a delivery of flowers, several cards and a book I had ordered in the mail, a visit from my brother and his kind delivery of some Pedialyte.  I have reasons to remember this birthday, just sayin’…

Dehydration!

Welcome to Day 4 of the A to Z Challenge. My theme for this year is the Grand Canyon, which I will be hiking this May. As I go through the alphabet I am educating myself about the canyon, the equipment I’ll need and the specific hike I’ll be going on, the Take A Load Off: Mule-Assisted Camping 0514

One day while hiking on the Appalachian Trail I started feeling a little light headed and maybe a little less certain of my footing, on a trail that was rocky and precarious. I was able to make it down to a place where the trail crossed a maintenance road, but couldn’t go any farther. Feeling worse by the minute, I had one of my hiking buddies flag down some rangers in a truck on their way to a campground a few miles further away.

They loaded me up, took me to the campground, helped me set up my tent and gave me some electrolyte tablets to put in my drinking water. That was the end of hiking for me that day. The rest of my group reached the campground before nightfall and joined me. This was my first experience with dehydration. I don’t want to repeat it.

The Grand Canyon, in May when I am going, could have some warm weather. There will often be places without shade. We will be moving and carrying light packs for hours. Dehydration is a serious possibility under these conditions and this is most certainly a place where I don’t want to lose my footing.  Water is scarce there and although there are places on the trail where it is available, we will carry what we need plus some extra. One of my guidebooks says this about the subject:

“Dehydration accounts for more fatalities in the Grand Canyon than any other single cause. Some victims have died with water in their canteens. It’s not enough just to carry water, you must drink it.”

p. 228 of A Field Guide to the Grand Canyon, Stephen Whitney

Great advice. Drink the water. Also, in my hike guidelines, marked as an important note, is the instruction to have sufficient sodium and fluids in the 72 hours before the hike commences. So, no low sodium diet, and make sure that travel time to the canyon does not keep me from drinking plenty of water (not coffee or alcohol).

Here are the symptoms of dehydration. You don’t want to experience these so be on guard: 

  • early on you may have thirst, malaise, irritability, fatigue, flushed skin, and increased pulse
  • leading, later on, to dizziness, headache, labored breathing, tingling, dry mouth, difficulty speaking and walking.
  • It gets worse and then you die.
  • You can recover from mild cases, like the one I had, by resting and drinking as much as possible. Advanced cases take medical intervention.

I will carry three liters of water each day of hiking and drink small amounts frequently, regularly. For me, the easiest way to do this is my water pouch, which I carry in my backpack, with its tubing that comes over my shoulder with a bite valve on the end. It is within inches of my mouth and so handy that I can’t ignore it. I do not plan to miss any of the hike being dehydrated this time. And I certainly don’t want to have to be hauled out in a helicopter, a not uncommon occurrence.

Yes, they standby for emergencies like dehydration.

The New Normal (Our Life with LBD)

I don’t really know if it can be called normal. Normal seems to mean that something stays the same over a period of time, long enough that you can grow used to it. We can’t seem to grow used to things that are changing all the time as we deal with the husband’s problems. “Normal” has come to mean regular frustration as he deals with less of almost everything he needs in every situation.

It snowed yesterday and was wet, slushy and slippery everywhere we went. The husband’s shoes were getting wet and were clearly not what he would need for winter, so today we shopped for boots. This is something we both remember him doing by himself, but since he no longer drives, I am with him everywhere he goes.

The first thing we had to do in the shoe department was find a place to sit down. Dennis can’t walk very far or stand very long without getting tired, and he always has to sit to put on his shoes. We struggled. Putting on boots can be such hard work. I fetched pair after pair from the shelves, opened them up and pulled and pushed until he could get his foot down inside. Each time he had to stand and test out the feel of the boot. Up and down, over and over. He was worried about the small bench he was on as it would start to tip as he pushed himself up. We finally found a pair. I think he would have liked to go home at that point, but he had also wanted to get a new watch.

After pointing him in the direction of the jewelry counter, I thought, briefly, that I would let him look over the options and choose. But no, I decided it would be easier if I helped him so we went together.  His vision is one area where “less” keeps happening. In order to see the time he decided the face of the watch had to be white, with dark hands and numbers that were easy to read. No shiny reflective surfaces would be suitable. The band had to be easy to close. He would have liked one that showed the date, but finally decided that he would do without since he couldn’t read those small letters anyway. It didn’t take us very long to pick one out but by then he was really tired. He went to the pharmacy where they have benches, and sat waiting while I got a few groceries.

And we are getting very good at finding restrooms in all the places we go. This was Walmart and he had to walk to the far end of the store for that before we could leave. He walks very carefully, and very slowly.

Often we think of dementia as robbing a person of their memory first. That is not a given with Lewy body dementia. Right now some of the husband’s most frustrating symptoms are motor related. He has less strength, less balance, less flexibility, less stamina. He will tell you that he is also forgetful but I find that he can make himself remember most anything he wants to, given enough time. He may get overwhelmed with thinking too hard, but he still thinks correctly. He remembers. And that is what is hard – remembering what he used to be able to do, but no longer can.

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We got the boots.

Quarry Hill

The husband and I are back at the clinic in Rochester, following up on a couple of medical recommendations. We get to stay in a motel and eat at restaurants every day so I’ve decided to call it a vacation. I’m much more familiar with parking, the traffic patterns, and the locations of our appointments, so everything is going well.

We have had opportunity to look around the city during our wait time. It’s been over 40 years since I went to nursing school here – long enough that most of the buildings I remember have been torn down and replaced.

One memory I had was of a strangely shaped hill where students would go to have picnics and hang out, relax… I looked at a list of parks and found Quarry Hill Nature Center. It sounded familiar and as we drove there, I remembered more and more.

It was a good place to wait, to see and learn about local wildlife. There are a lot of trails for walking, but since the husband is not a hiker anymore, we watched birds in a feeding area.

Quarry Hill was made into a park a couple years after I left school and I was glad to find it again. I wish I had kept in contact with my friends in nursing school because I’d love to have help remembering some of these places, places I never thought I would forget.

Mayo Clinic: A Diagnosis

20180915_2000445957117869457069032.jpgWe’re thinking it over.

We’ve had a little over 24 hours now to sit with the weight of the doctor’s words, process them, test how our involuntary reactions are stacking up. He didn’t tell us what we wanted to hear most – that the husband’s problems could be fixed with surgery. It wasn’t NPH, normal pressure hydrocephalus. It was, or is, a form of dementia called Lewy Body Dementia.

I won’t go into the details of the condition. You can find it in Wikipedia or by putting it in the Google search bar or by clicking this Lewy Body Dementia . It’s not high on the public awareness scale but it is the second most common form of dementia, right behind Alzheimer’s. It is progressive. Everything has an acronym, so LBD is what it’s called. There is research, there are educational resources, there are support groups, but no cure as of yet.

The doctor spent time explaining thoroughly how he arrived at the diagnosis. He told us exactly how he wanted to treat the symptoms and what things should be done as far as lifestyle changes. We were already doing many of them so life will not change greatly for us. There are a couple new medications, and a few new cautions. Not much is different except now we know.

We are going to be okay. The husband is okay. He likes telling people it hasn’t affected his sense of humor at all and I always agree – it is as bad as it always has been. He is still very much himself, as most of you know.  At Mayo, he did quite well on his cognitive tests, and he will discuss complex things at times and have no trouble at all.  I would say that he is more emotional, more compassionate and understanding of others, more grateful and aware than in the past, simply because life has given him a jolt that enables him to see pain and struggles in the lives of those around him.  I think he feels held and loved by God more because he needs it more.

He is looking for any way that God might be able to use him. You know how men are (well, a lot of them anyway), they want to feel useful and not dependent. He wants to share his story and encourage others. He wants to call himself the Demented Disciple (not my idea).  We’ll see how that works out.  It is however, going to be an experience that we go through together as a family so I know I will have to write about it as a caregiver in order to stay mentally, emotionally and spiritually healthy. I don’t think it’s going to be easy.

I missed a day in my September blogging challenge, but since I’m making my own rules I’m going to ignore that.  The tests yesterday at Mayo were interesting. I may write more about them when I feel more in the mood to inform. The ride home was pleasant and we were glad to get to Hayward around 9 pm.

That’s it for tonight.

Day 4 at Mayo Clinic

Day 4 at Mayo Clinic had its up and downs, but was also the day that was the most accomplished so far.

 The day started early – third day in a row that we were up, fed, and on the bus shortly after 7. Soon after arriving Dennis was met by the professional doing his testing and disappeared for a couple hours. He came out for a quick snack and then went back for another two hours. I thought for sure he would be exhausted by then. I was called back for a brief discussion with him and one of the testing doctors and then we rode the bus back to the motel.

 While the husband was getting tested this morning I made a trip to the business office to check on the infamous pre-authorization request for the PET scan (still pending) and then wandered around looking at all the stunning artwork and views of and from the various buildings. So much marble and granite, so many windows, visitors sitting down at the grand piano in the lobby and playing a tune, people of all ages and cultures walking past, and always a new tunnel in the subway and a decision to make to walk it or not – I could have spent hours. (Some photos at end of post.)

 To give Dennis time for a nap, we decided to take the car to the next test instead of riding the bus. The PET scan was scheduled for 4:50 and Dennis would be fasting until it was over. We knew he would need to eat soon after so Mom came along with us and we planned to go right to a restaurant afterwards.

 Every time I checked on the request for authorization, the answer was the same. T 4:30 it was still pending and no one could figure out the persistent problem or get satisfactory answers. It was the most expensive test but the most important, so we paid for it to make sure he was able to take it. Insurance will get billed but we have no clue whether or not they will pay anything on it. Oh well.

 Mom and I read our books and waited while the husband had his head scanned. The books we’re working on are both very riveting and we wouldn’t have minded waiting a little longer. As it was, the test was over quickly and we were off to have supper at “The Porch”, a converted railroad station family style restaurant.

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Mom wanted the “Bomb ass gravy”. I kind of favored the “cold mac and crack”. If nothing else they had cool names.

 

 Tomorrow will wind up the Mayo experience for this time. One test remains, the lumbar tap. I don’t know if I’m excited about this one or not. It’s the most invasive and has a bit more risk to it but is also one that the husband thinks could make a difference in some of his symptoms. It’s at 9 am. All that remains after that is the meeting with our primary specialist Dr. Jones at 3 pm. They expect he will have results from everything to discuss with us. I am so used to waiting a long time to get told of results so I will be surprised if it happens. We will drive home immediately after that.

 Something we all think about as we watch the crowds of people at the clinic, on the bus, in the waiting rooms – they are all living out their private battles with illnesses that have happened upon them and changed their lives. Things are not normal anymore for them. They all have stories. They all wonder what their future will hold. Just sayin’, we are not alone by any means.

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Sight that greets us each morning as we enter the Gonda Building.

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Marble everywhere, even on the walls as art.

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Glass sculptures hang over stairway to subway level.

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Atrium ceiling gives views of the older Mayo Hospital buildings.

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Wheelchairs ready in the entryway (like carts at the grocery), for anyone who needs to use one.

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Wall of glass in main lobby of Gonda Building.

Mayo Clinic Day 2

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Geese on the run at Silver Lake. Ok, they’re not all running.

It’s Day 2 and I”m beginning to know my way around, where the different buildings are, where to pick up the shuttle, where to go to eat. The husband is getting better at it too, but he doesn’t go anywhere alone and likes to have someone to follow.

Our appointments were not scheduled the way we would have wished but we were told it was possible to change some of them. The schedulers told us “Be a checker!” and wrote it on our instruction sheet. I had to ask what that meant. It’s their suggestion that you be on hand for the test you want to get, in case someone cancels. It’s like “standby” at the airport. We were on hand at 7am and 12 pm, the designated times, with no success.  But again, the people working here are all helpful and so good at what they do. It wasn’t a bad day.

After our morning wait, we went down to the business office and asked about our insurance authorization for the needed PET scan. It was not a busy place and a very competent person helped us right away. She made some calls and told me that Dr. Jones’s report had been sent to the insurance company. I will call tomorrow morning and see if it has had any effect. And again, no lines, prompt service, and people asking us what we needed before we had to ask them. Can this place be real?

Going back and forth as many times as we did gave us some good experience riding the shuttle. It is easier and cheaper than driving and will be our main mode of transportation.

We are finding ourselves very easy to entertain. Today we shopped at Walmart, took naps, read, watched TV and ate our snacks in the room. We’re doing one meal a day at a restaurant. Tonight’s choice was Outback.

I am trying to resurrect memories of my year in Rochester while in nursing school. It was so long ago that I’m afraid my dorm attached to Methodist Hospital, Clara Madsen Hall, has been torn down and replaced by some larger, imposing building. I couldn’t find it. Almost everything downtown around the Clinic itself looks unfamiliar to me, although the main street, Broadway, still had many older buildings. There are also some one way streets that I don’t remember being there (but that I will never forget again…).

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Ducks and geese abound. Watch where you step.

After dinner we drove around a bit and I was relieved to find one place was much the same. Silver Lake park was still there. The lake itself was part of the Zumbro River and there was a power plant connected in some way with it. Because the water was warmed by the power plant it didn’t ice over as quickly as other bodies of water in the area. It was home to great multitudes of Canadian geese all year round and quite a sight to see. I remember times when it was cold enough to warrant goose rescue attempts for those animals that were getting frozen into the ice. The geese are still there, along with a sign asking people not to feed them. A large goose produces 3 lbs. of poop per day (who knew?) and all that creates a significant bacteria problem for the lake.

Tomorrow we will be on standby for the neuro-psych evaluation again, and hopefully will get time to visit my Aunt Evelyn in the afternoon. The husband (and Mom and I) are worried about Julia. Hurricane Florence is heading toward North Carolina and Greensboro is in the center of the all important cone of possibility. We know what hurricanes are like… This world is full of things we can’t control. How plain that is. Just sayin’…

“Up North” Mayo Clinic

Right away, let me say that if you have to get sick, this is a really good place to go.

We left my brother’s home near LaCrosse early this morning and in a little over an hour we were in Rochester, MN. The clinic and its hospitals are the focal point of this small city and it is fairly easy to navigate. There are people waiting in every parking lot and in every lobby to answer questions for newcomers like us – they are used to doing it and because they have developed good systems things went smoothly for us.

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Campus map… a lifesaver, and, of course, my phone GPS.

I was amazed that we drove to the 9th floor (top) of the parking garage and were headed back down again before we found an empty spot, and at such an early hour. There were rows of sturdy wheel chairs at curbside for anyone not inclined to walk, good signage that was easy to follow. This stuff is so important! Knowing where to park, and where to go for appointments is one of my main concerns in going to a new place.

There were no long lines and no extended waiting periods! We might run into this later on but today was extraordinarily good in that respect. After check-in we were helped by a appointment specialist, Mr. Smith and put into an exam room to wait for our doctor, Dr. Jones. “Smith and Jones” jokes were exchanged.

Dr. Jones got a detailed report from Dennis. He seemed to be a good listener and made notes as we went along through the exam. He wasn’t a white lab coat doctor which I thought was interesting. He had a nice, expensive looking wool tweed suit, longish curly dark hair, and a trimmed beard. He gave Dennis quite a few tests as he talked with him and at the end announced that he had mild cognitive impairment, maybe borderline dementia. We knew that, but it was nice that someone else actually noticed it too. He is in favor of finding out why.

Not too long after the evaluation, the husband had his brain MRI, with and without scary sounding contrast medium. Very nice professionals conducted this testing with very little wait time. Mom and I had time to eat a light lunch while this was going on. We were done and on our way to the motel before 3 pm. The accommodations are clean, comfortable, adequate.

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They don’t have an extra chair anywhere in the facility for us to each have one, but they do fold the towels really well (cute).

We rested, had a “comfort” dinner at Olive Garden and are back in our motel ready to get to sleep early.

Dennis was supposed to have a PET scan tomorrow but because it was not yet authorized, they postponed it until Thursday afternoon. I’m hoping the insurance will cover it because Dr. Jones said it was probably the most definitive test and will show whether he has normal pressure hydrocephalus (NPH), Alzheimer’s disease (AD) or Lewy body dementia (LBD). We need to get authorized for this one and that is our prayer for this visit.

The lumbar puncture will take place on Thursday morning. The neuro-psych evaluation was scheduled for next Monday but we are going to be waiting for cancellations the next two days and hoping to get it done this week. It’s a nice enough motel but not where we want to live for that long.

Other appointments the doctor felt to be necessary were another sleep study and an ophthalmology work-up. Those can be done later in October – we will come back for them.

So far, so good. Thank you to all who have prayed for the success of our trip. It is going as well as can be hoped for.  We are in fairly good spirits.

Another Keto Breakfast

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Two slices of turkey bacon, half an avocado, two poached eggs and some wilted greens with garlic.

In addition to wanting to eat well and be healthy, I want to be frugal and not waste food. This morning I did both by trying a plate from this book, “Fat for Fuel Ketogenic Cookbook” and modifying it to use what was in my refrigerator.  The cookbook does not give calorie count and nutrients for each recipe but I actually found that refreshing. None of the recipes have empty calories and the serving sizes are moderate, so I can focus on enjoying good food instead of counting everything that can be counted.

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I’m a Sam’s Club shopper for many reasons – one being that they carry some good organic fruit, vegetable and salad ingredients.  The husband had shopped there too, right before I returned home from a five-week absence. He had bought their wonderful, but rather large box of spring mix and it was fairly screaming to be used before it died. I decided we would eat greens for breakfast.

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What we call greens is a mysterious bunch of leafy vegetables. They can be the leaves of lettuce, chard, or spinach, or the above ground part of root vegetables like beets or turnips. The mysterious part is that when you eat them fresh and uncooked as in a salad, a couple cups of them look like a lot of food. When you cook a couple cups of them, they wilt and look like a spoonful or two – big difference.  So, if you have a lot of greens to use up, get a recipe calling for wilted greens.

I also buy garlic at Sam’s club even though the bag is, again, rather large. It is a good price however, and having a lot of it makes me search for ways to use it. I know it is good for me. Today’s recipe had garlic and greens, which was perfect.

I wouldn’t ordinarily need instructions for poaching eggs but these instructions were interesting and made sense to me so I tried them. The recipe calls for boiling salted water in the pan, with the addition of 2 teaspoons of vinegar. Next came the interesting part which was to stir and get the water moving in a circular pattern before cracking the eggs into the center.  I’m not sure it made a lot of difference but it made me feel like a fancy cook.

I enjoyed the breakfast. The husband didn’t say anything. I think he is just glad I’m back cooking again.

I’m wondering, what does it take to make you feel like a “fancy cook”? 

The Keto Plate: Almost too Pretty

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Almost too pretty to eat, but no.  Almost too healthy to taste good, but again, no. It was delicious.

As part of my quest for better health for my husband and myself, we have been learning about the ketogenic diet, the Paleo diet, the Autoimmune Protocol, and food in general. We’ve been picking and choosing things that are easy to do, changes we can make gradually and, honestly, most of the changes are just common sense. It seems the less our food is tampered with, clean and unprocessed, the better it is for us.

The plates above held dinner for the husband and I one night. It is usually a light meal, eaten as early in the evening as we can manage, and is our last food for the day.  The greens, boiled egg and cauliflower are definite keto foods (on the “yes” list). The onion, bell pepper, tomato and cheese are on the “limit” list. A good dose of olive or avocado oil and a flavorful vinegar, a sprinkle of sea salt and pepper, add to the preparation ritual.

We also have a gratitude ritual before our meal. We pray and thank God for providing such blessings. We know not everyone has access to even simple meals like this.

We relax as we eat. I remind myself to chew slowly and put my fork down between bites. I look at the colors and shapes. These onions are so amazing to look at. They’re purple!

I love to taste the blends of flavors and see how many I can isolate, identify.

The more I know about food and the way my body interacts with it, the more I am conscious of its protective and restorative qualities.  At the same time, being able to identify food that is not good for me, and knowing why it isn’t, helps me avoid it without feeling deprived.

Eating keto, is not only a lifestyle that focuses on unprocessed, low net carb foods and healthy sources of fat,  but it’s actually kind of an attitude of wanting to protect the only body you’ve been given.  I’m glad it’s becoming more mainstream as the evidence mounts showing its effectiveness against cancer and chronic disease.

Today I am thankful that food is colorful, imaginative in structure, varied in it’s composition and taste. Food can be art. Chefs can be artists, and sitting down to a beautiful meal can be as satisfying as strolling through an art gallery.

Food is medicine, and eating the best food you can, every time you can, is how you be your own best health advocate.

Do you have a favorite mealtime ritual or practice?