Mid September “Up North”

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This is a September sky in Wisconsin.

September is more than half over, wow.

As often happens when a large, mind-consuming task is done, I’m left wondering what to do next. All the things that I haven’t thought about while concentrating on our trip to Mayo Clinic, are probably still there needing to be attended to, but I’m not sure I’m remembering them all.  That is my most frequent prayer, that I would be reminded to do things at the right time – that nothing would fall through the cracks.  Things that do fall through the cracks unnoticed create bigger problems later.

We are becoming a little more devoted to our keto eating plan now that the husband is motivated to protect his brain cells, keep those mitochondria healthy, and all.  It is a good diet for neuro-degenerative conditions, as well as cancer, diabetes and heart issues. Since I wrote about his condition of Lewy Body Dementia I have received lots of suggestions of things to try and things to avoid. We already know about some of them but will probably try them all eventually – none are ridiculous, or lacking in a good success story.

Which brings me to the point of how different this disease can be from one person to the next. Each individual kind of paves their own way down this path. There are some common traits, but even those come and go.  While it is interesting and hope producing to read stories of cures and great improvements, it can be equally devastating to read about unsuccessful outcomes. I would rather think that the husband’s story is his own and it’s not been told yet. Let’s just live well and watch what unfolds.

We can do this.

Thank you to all our friends who have responded lovingly, given us encouraging words, and have let us know that you are praying for us. A health threat is a bad reason to be drawing attention, but because of it we are newly aware of people out there who care.  I think that we could relieve your fears for us if you could be around Dennis for a while. I think you would be reassured that he is still himself, and thinking well. Circumstances are troubling, but God pays no attention to circumstances since they do no control him in any way.  It only makes sense to us to trust God and try to think like he does.

Tomorrow we are making a fun trip to the nearest “big city” of Duluth, MN. We are seeing some friends and then going to my favorite department store, Sam’s Club (lame, but true). We are looking forward to it. This weekend is Fall Fest in Hayward. It’s also the start of the Feast of Tabernacles. We intend to enjoy both. Life is good. We are not downcast. But don’t any of you stop praying, okay? Just sayin’…

P.S. The husband, a.k.a. “the fan man”, got a work related call today.  His brain is in high gear when it comes to ventilation and fans. He was proud that his company still refers the “sticky” problems to  him – and he deals with them.

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 3

Please tear my hair out in clumps and put me in a straight jacket. I’ve been talking to my insurance company. For the purpose of this post, the numerous automated screenings and niceties have been left out of the conversations which took about an hour altogether. 

Me: Yes, hello. I’m calling to check on an authorization for a PET scan for my husband Dennis. Where do we stand on this request?

Insurance company: I can check on that for you, just a moment… I don’t see a request for a PET scan in the notes. I see four other authorizations, blah, blah, blah…

Me: Mayo Clinic sent our Dr.’s notes to you yesterday, and they were told the decision was pending. It’s an out of network issue and it’s complicated. Do you have someone who handles these cases that I can talk to? (I give them a case number and the history of the last five days phone calls.)

Insurance company: No, I can’t say that we do and the notes we have don’t mention a PET scan at all.  (She tries to find more information but comes back with the same answer.)

Me: (Calling Mayo Clinic business desk in a panic.) I’ve just called my insurance to check on the authorization, as you suggested, and they don’t know anything about a request for a PET scan. It’s supposed to happen tomorrow. What can I do?

Clinic rep: We called your insurance at 8 am this morning to see if the authorization was given. They did get our fax yesterday about the Dr.’s evaluation and the matter is still pending. We should know something today.

Me: Why are they not able to find this anywhere in his record? They have the other authorizations but nothing for the PET scan. They say they don’t even have case numbers like the one I was told to give them.

Clinic rep: (explains all kinds of stuff about a special review board for out of network authorizations) We gave them the Dr.’s recommendations and I’m sure they will be getting back to us. Don’t worry, we have all day today and most of tomorrow to work this out. It will get resolved.

So I called the insurance company again, got a different rep who said basically the same thing with the added information that she had never heard of a special review board and she would know if there was one (she said). I made sure she knew that this was getting very mysterious and confusing to get two completely conflicting stories about the status of the request. She assured me they did not have a request recorded – but I could get one started. She told me how.

I didn’t want to call the clinic again, but I did. No surprises there – the same report. At least everyone is consistent. I guessed it was up to me. Which story did I want to believe? So, I went with the clinic, and am praying that they were right.  I really did not want to make any more calls. Tomorrow, we will find out if that was a good decision.

A bright spot in the day came when the scheduler called mid-morning and told us we had an appointment  tomorrow, at 7 am, for the neuro-psych evaluation, the one we had been on standby for. We no longer had to keep showing up and waiting for a cancellation. The lumbar puncture was rescheduled for Friday morning and will be followed by an afternoon wrap up with Dr. Jones. We are going home on Friday!

But will probably be coming back in a month or so (sad emoji face). Whatever. Maybe by then we will have new insurance, the kind that’s not so special that no one knows about it. Just sayin’…

Many thanks to my Aunt Evelyn Boone for a calming, pleasant afternoon visit and a wonderful dinner at her residence. Best thing all day!

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.

On the way…

You may have heard of Mayo Clinic in Rochester MN. It’s rather famous for its careful medical analysis and care. We are on our way there, hoping to find help for the husband who feels somedays like he is losing his mind, and maybe a few other parts too.

We have set this up, correction, I have set this up and have concerns about whether all the bases are covered for a good appointment. We’ve had unpleasant, last minute surprises about insurance coverage. What I thought would be three days, maybe four, of testing is now stretching out over a week. We may go home for the weekend and back on Monday rather than live in a motel the whole time. I just have uncertainty about whether we are prepared. The husband has not been able to help much.

We are not fearful. We will do all we can think to do, but it is clear that we are not in control here and haven’t found anyone else who is either. That leaves God. I see some pretty crazy things he claims to have done, pointing to some measure of control. I’m going with whatever he sets up. Done it before and can’t say I’ve ever been sorry. Whatever happens, we’ll claim it’s good because he says it will be. He has a lot of skin in the game, and no reason to lie.

Pray for us if you will – me, the husband and Mom – on this trip. Thanks.

“Up North” People

Meet “The Sisters” who are part of my extended up north family. Michelle, Susie and Judith are three women who have been near and dear for years now. Susan and Judith started out life in Vietnam but were adopted by a kind lady who was in government service. Michelle was the lady’s biological child. These three sisters have lived in several parts of the globe growing up. They have a delightful accent which is hard to place because it’s from all over. Even they don’t know what to call it.

The sisters have resided in Hayward for about 20 years, running a child daycare business in their home and various other jobs. They happily participate in any community event they can manage to get to. They especially did not want to miss the upcoming annual hospital picnic.

Michelle was talking to Mom, planning our Saturday outing together and in addition to the picnic, she wanted us to spend time at her house and also go out for dinner. Mom tried to say no because she doesn’t like to plan more than one “event” per day.  But as Mom says,  Michelle, who is only 91 “has more energy” than she does so dinner ended up in the plan too. (Michelle is amazing. She wants to cruise the Panama Canal next year. She has more energy than I do!)

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Does this look like the perfect picnic. Yes.

Our first event, the hospital picnic, was a genuine, small town, delightful event. I’ve never lived anywhere else where hospitals had picnics. The hospital personnel were great hosts and were giving out free health information at the welcome tables (the colonoscopy pictures were “to die” for…). They had a raffle and I won a prize, which happens almost never!!!. The food was really good. Games, music, pie and ice cream. Perfect.

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Judith, Susan, the husband and Mom at the hospital picnic!

Keeping the Christian sabbath on Saturday is routine for the sisters and they love to spend it with family and friends. We joined them this Saturday after the picnic, at their house. The sisters are gift givers and our family has been blessed many times over with their generosity. Sometimes it’s a chocolate bar, sometimes it’s a basket full of delicious food, or a book. They always think of something and today was no exception. We came away with so much! But I will tell you the really remarkable thing. Like most people I am more comfortable with reciprocal gifting, but I would not be able to keep up with Michelle, Susan and Judith. They truly give without expecting things in return and they do it to make their love evident. Their joy in giving makes me feel loved.

We went out for dinner. We waited a few hours, hoping we wouldn’t still feel stuffed from the picnic (didn’t work), and went for Chinese food. I don’t know how we happen to have a Chinese restaurant in Hayward – somehow it always seems a little out of place in this land of lumberjacks and Nordic skiers – but it is a welcome break from McDonald’s. Michelle does not have dinner out without treating everyone to dessert as well. We finished off the evening with a trip to Dairy Queen.

An eventful sabbath day with the Madison sisters left me knowing that Hayward is blessed to have them. This is not the last time they will appear in stories here. Some people fit so gracefully into a small town, a town that still has hospital picnics and Dairy Queens, a town with three stop lights and a park with a giant Musky, a town “up north”. Just sayin’…

 

 

“Up North” Rain

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Heavy rain! The stream did an overflow on both sides of the newly fortified culvert. More water than expected!

This month I am joining with Five Minute Friday (FMF) Link-Up. It’s a group of writers who write for five minutes following a weekly prompt given Thursday night. This week’s prompt is RAIN, and I know a thing or two about that…

 This is Wisconsin. It rains here, and how! Last Sunday it was a downpour outside as we headed to church. As a car left from the early service we got their space right by the door, but in spite of that we got soaked going in. Everyone in church was wet and shivering.

This is a frequent occurrence in the northwest part of our state. You’ve heard that Washington state is cloudy and rainy and I think Wisconsin is equally so. The small streams and rivers in our town have flooded several times lately and washed out roads making them impassable. The stream flowing through the wetlands on the property where I live swelled and nearly covered the footbridges. Even though one bridge had recently been fortified, the stream rose high enough to make new paths on either side of the culvert. It is wet and has been for the last few years, killing trees that are close to the water.

In spite of it all, I like the rain. Wisconsin is usually green and cool because of it.

As the pastor said last week, “Look out the window at that rain. In three months it will be snow coming down like that!” We have that to look forward to. It’s Wisconsin… just sayin’.