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.

“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.