When the Doctor has the Personality of a Dead Rock...

 I some ways, Wednesday was a big day.  Pam had an appointment with the neurologist.  Until now, her official diagnosis was Unspecified Major Neurocognitive Disorder.   When the neurologist  added her notes to the patient file, under Assessment and Diagnosis, it now says Lewy Body Dementia, unspecified dementia severity.  It doesn't really help Pam in any way,  What it does is to validate how the family has felt for quite a while.  Not that we ever needed anyone to validate it anyway.

 The appointment was at 8 am in the morning!  Anyone that knows Pam knows that she is not a morning person.  But seeing the neurologist meant the early morning appointment or wait another six weeks.  So I opted for the early morning.  We had not seen the neurologist in over a year.  When Pam was fist diagnosed, the assumption was Alzheimer's.   We both felt much more comfortable with the psychiatrist than the neurologist.  I am sure that the neurologist is very good.  But her personality is right up there with that of a dead rock.  She is all business, not much congeniality, and talks at a speed that I am sure exceeds the posted limit.  

Courtney joined us for this visit.  She is the backup on Pam's Healthcare Power of Attorney (and primary on mine) and is listed as an authorized contact for both of us for HIPAA purposes.  Even Courtney agreed about the neurologist.  And Courtney has had lots of experience with neurologists.... but that is another story.

I had been preparing notes for this visit for a few weeks, reviewing all of the observed symptoms and in some cases the worsening of them and I outlined a few concerns.   I emailed my notes to the doctor's office the day before the visit, with the intent that we could make the best use of time we had with the doctor.   I even attached a copy of the Comprehensive Lewy Body Dementia Checklist.  Doing all of this proved very helpful.  Very little of the time with the doctor was spent with them asking about the symptoms.  I don't understand why doctors don't encourage this kind of preparation.  Granted, many people rely on the doctor and their expertise to sort out theses things.  Dementia caregivers tend to do extensive reading and research and come in to doctor appointments much more prepared.  And eventually, the patient will not be able to contribute in the conversation with the doctor. 

So what are the implications of this change in diagnosis?  There are no known biomarkers.   No known DNA mutations.  No known scans to help diagnose LBD.   Currently, the only way to verify, with certainty, is at autopsy and we have decided to forgo that for now.  😁   There are certain medications that are more helpful with Alzheimer's that are not so much with LBD.  And, in fact, there are certain drugs that should be avoided with LBD patients. But like Alzheimer's, there is no known cure for Lewy Body Dementia.

When the cognitive symptoms first appear, Alzheimer's and LBD are very similar.  But LBD patients start to exhibit Parkinson's-like symptoms.  We started seeing that with Pam about a year ago.  Her cognitive losses slowed down.    We noticed that her walk became more of a shuffle and she was having difficultly getting in or out of a car.   She began to have balance issues resulting in a couple of minor falls.  But when you research LBD, there are signs that appears very much earlier.  You just don't know that they are symptoms, until you actually start to suspect dementia.   More than a decade ago, Pam began acting out her dreams.  She was talking and had arm and leg movements while dreaming.  Today, we know that this is called REM Sleep Disorder.  It is an early sign of LBD.  She also had a couple of instances of hallucinations.  Another early symptom.  But there can be several other causes of those symptoms.  Once the cognitive issues start to rear their ugly head, that is when those early signs make more sense.

We will return to the neurologist in two months.  In the mean time, Pam will begin some physical therapy.   She is not too happy about it.   The family is hoping that this may help her regain some of her leg movement and strength.   And as if nine pills in the morning and eight in the evening is not enough, we have added at least one new drug.   Sinemet is often prescribed for Parkinson's patients in an effort to increase the dopamine levels in the brain.  Dopamine is a neurotransmitter.  The neurologist has also requested a DaTscan of Pam's brain.  This is similar to an MRI, except they use a drug that highlights the dopamine levels in the brain.

What is up next?  April is going to be a very busy month for us.  There are seven birthdays in April between the family and friends.  We have a couple of condo social events on the books for the month and I have a lot of small things to do to the RV to get it ready to move up north for the summer.  Pam and I are both anxious to get back into it.  In fact, the New Hampshire Camping & RV Show is going on in Milford this weekend.  We are planning to attend with two of our daughters and a couple of grandsons.  All of these things will take our minds off of the stark realities that go with the dementia journey.