Phases of Lewy Body Part II - The End of the Non-Scientific Foray (for now)

So, in the last post, I spoke of what have been the beginning phases through what we have at this moment with Mom.

Here, I will post from what I have read and heard from other sources what we will eventually expect.

Remember, from diagnosis to the final 'Hurrah', it can be from 3-7 years on average.  So, watching Mom decline as quickly as she has in the past several months has prompted me to brace for whatever will be.

So Here Goes:

PHASE  FOUR:
Mobility Issues -
As the dementia kicks in stronger, there will be more mobility issues which begin with a stiffness to the upper body and coursing downward through the limbs.  This will also affect balance.

What does this mean?  It means that as the disease progresses throughout the cerebral cortex, and moves its way through the other portions of the brain, that there will be more occasions where Mom will fall.  Eventually, she will begin needing a walker if not a wheelchair/scooter.

There is also the "Lewy Lean", which I've caught occurring with Mom, where she has troubles keeping her head held up.

PHASE FIVE:
The Lack of Lower Body Function/Control -
With the mobility issues, there will also be the onslaught of issues with the need for diapering.  This, I know, will be a humiliation for Mom.   However, she will need to keep her dignity in most settings, and use these as a barrier from what could be even worse.  I believe you can catch on to the idea I'm setting out there.

PHASE SIX:
Inability to swallow -
Eventually, the ability to swallow and to be able to eat normally could very well become a norm.  As the bodies move through the brain this dilemma will become more commonplace.  There was a time where it seemed Mom was having issues with swallowing, but then I saw the pills and understood her problem.  However, at times this does seem to creep in little by little.

PHASE SEVEN:
  Capgras (Caw-Graw) Syndrome.
This may occur as she dives deeper into the dementia.  This is where she recognizes people but has the suspicion they are imposters.  Nope.  Not happened yet - just forgets she's speaking to me about me.  Not sure who I'm supposed to be at the time - she won't tell me.

PHASE EIGHT:
Shut Down.
  This is the final stage.  This is where the bodies have taken over the brain and have begun their final stages of 'victory', where the cells can no longer function and the body systems go awry and then go dark.

As with all dementia, Phase Eight is the End of Life.

Lately, however, Mom has had a spark about her, even a bit of wit.  She doesn't seem as tired as before, and seems, too, to be on a better playing field.  However, this also tires her out.   But, the fatigue of not sleeping seems to have been held at bay.  How long this lasts, I've no idea.

To Be Frank - These stages are purely hypothetical for every patient.  They could occur at any time, sometimes simultaneously, or in tandem with others.

There are no scientific or longitudinal studies that demonstrate these phases, but it's simply from qualitative data I've gathered and observed.

Perhaps in the next 10 years there will be something that suggests a better and more definitive expectation; however, as this disease falls on a spectrum, somewhere between Parkinson's and Alzheimer's, and can take on signs of both depending on the patient, it's probably going to be quite sketchy.

I hope I did this right....

Phases of Lewy Body Dementia - According to a Very Knowledgeable Source....Me.

Doing much research on LBD and trying to figure out what lies ahead for our dear Mama has been eye-opening, but also a little frustrating.

You see, there is nothing definitive about the disease that really lets anyone know what to expect next.

At a recent support group someone mentioned that there was a doctor who had defined 'phases' of LBD.  I can't seem to locate anything remotely connected with this topic, so I've had to try to figure this out on my own.  Rats!  It's so much easier when there's someone who's already done the work....

So, here goes what I understand and what seems to fall into place with this disease:

PHASE ONE (According to me):

       Confusion, Mild Hallucinations, and Lapses of Memory.

    These can be seen as benign signs of the aging process.  Who doesn't have a story about their parent or loved one who gets 'dingy' at one point or another.  Yes, we all have those moments, but with the Dementia Patient, these seem to happen a bit too frequently and, many times, are forgotten (this could be seen as trying to forget the embarrassment).

      Mom took a nap one afternoon and slept rather well.  When she awoke she looked at the clock and outside.  It was mildly dusky but she mistook it for dawn.  She dressed herself quickly, ate some cereal and hopped into her car.  She believed she was late in picking up a friend, in the next town over, for a hiking expedition with their group.  She saw the darkness falling, but thought they might be rain clouds, so didn't give it much thought.  When she arrived at the friend's home she knocked.  Her friend answered the door and said, "Norma!  What are you doing here?"    Mom replied, "I'm here to pick you up for the hike."    Friend stated, "That's tomorrow morning.  It's 9:00 at night!"Mom, though embarrassed, excused herself laughing.  She drove home and tried to get her thoughts together.  She did call me and told me about it the next day, but was afraid someone might think she was losing her mind.  

There was also the concerned call of her best friend, as Mom had her mail all over the dining room table - which was terribly strange.  Mom opened her mail there, then tossed the odd parts out, and dealt with the meat of the mail at her desk.  But this was a jumble.  Mom had also phoned to tell me she was having issues and couldn't figure out why her mail was piling up.  This was definitely a sign. 

Hallucinations also camouflaged as confusion exists, as well.  It may seem a bit odd, and it truly is.  As Mom couldn't recall which house we were dining in one day (we were at her home in Port Angeles), and thought we were in her old home in Portland, and then in mine.  She laughed when I corrected her and she tried to cover it up.

PHASE TWO (According To Me):

   Heavier and less benign Hallucinations and Confusion. 

        Mom began calling in the mornings and during the day asking for Dad's phone number and for that of my grandmother's (her mom).  I recall one evening when she broke down sobbing because she was having an awful time reconciling herself to her mother's death.    This went on for some time, and she was phoning my brother just as often.   

She would also phone me several times with the same message.  Then I'd return the call and she'd tell me again.  

She also phoned one brother 13 times in 2 days, but never left a message, and, I believe, spoke to him at least once.  I spoke to her about this and she stopped.  

Then there was the call about my grandmother wandering off.  Mom wanted to phone the police, but I explained to her they would take her away, as her mother had died, and wasn't truly with her, but in spirit.  She seemed to calm down.

The next days she called to say she'd been kidnapped, but had escaped and was hiding out; she was being held hostage in a home not her own; she'd been moved to Portland overnight - and then back again; She had driven to Astoria in a little more than 15 minutes (now, she was a fast driver, but making that 3.5 - 4.5 hour drive in 15 minutes?  Blimey!).  The list continues.  

PHASE THREE  (According to Me):  

    Physical Rigidity and Symptoms of Parkinson's-like tremors, etc.

   Now, these can happen at any time during the course of the disease.  Some patients develop these earlier than others.  I believe that the Physical Therapy and Massage have helped stave these off for the time being, but Mom just let her Massage Therapist go, so it's a matter of time.  

    Mom has complained of stiffness on her right side, and I've seen her hands begin to tremor without warning.  She shuffles her feet, and with more walking this subsides, but after rest it begins again.  Also, her endurance is far from what it used to be - but this was waning in the past 5 years, 

       There are stories of those who, aware of their plight with this disease, do as much as possible while they still have the ability, and know what is to come.  For Mom and the family, this was not the case.  It was simply a slowing down over time, with some falls.  Mom fell a couple of times - the last she got her face and hands.  The time before she slipped on her driveway and damaged her hip.  

    According to one reliable source, Mom can go to something like a bull-in-a-china-shop, and hit things on the way (believe me, this is Mom).  There is also the ability to fall.  Eventually, there will be times when she will just fall over (or so they tell me) and won't be able to maintain her balance very well.  But, for now, Mom seems to be pretty aware of herself balance-wise, and takes my arm when she feels it necessary. 

So, there I leave you with this.  On Thursday I will have attempted to carry on with more information about the Phases.  It's not, actually, a door I wish to pry open (the later stuff, that is) but to be fore-warned is to be fore-armed.  

Till then!