Tru here.  2016 Update here >>

https://truthfulkindness.com/2016/11/30/symptom-progression-strategies-2016-dec/

Update 2015-09/18:  My friend Brenda Avadian helped edit article I wrote regarding Mild Cognitive Impairment diagnosis issues.  Article can be found at http://thecaregiversvoice.com/voices-with-dementia/what-the-change-in-diagnosis-from-dementia-to-mci-means/

Update 2015-06/07:  Neurologist said we need to keep a close eye on me because with these symptoms I am at high risk for Lewy Body Dementia.  This week received clinical diagnosis of Mild Cognitive Impairment.  Not a huge surprise since according to “Archives of Neurology”  92% of the patients previously categorized as mild dementia would now be classified as “MCI” with the new definitions. http://healthland.time.com/2012/02/08/why-a-new-definition-of-cognitive-impairment-may-confuse-patients/   .  Several of my friends have been to the neurologist in the past month, and each has been re-classified with MCI (including one “with underlying LBD” and one “with underlying Alzheimers”).  Since my diagnosis issues were highlighted within this month on this blog entry, I am adding this addendum here instead of creating a new blog on the issue.

Update 2015-05/18:  Due to some recent events, my lack of confirmation for dementia diagnosis has become a current issue.
Thought I would re-post my previous blog on the subject, just to make sure there are no current misunderstandings (and for my many new friends).  Current status is STILL pending.  Have had two specialist appointments in past 4 months, and 2 more appointments are currently scheduled.  Yes this is uncomfortable. Part of the discomfort is worry that if I do not yet fit any of their nice neat boxes with CURRENTLY known information on dementia … worry that they might try to push me into some other diagnosis simply to feel good about having a label to put on my symptoms.

Further

If you want to check out some of the other blog items, I suggest the “Crucial” category at the bottom of the blog window.

Diagnosis and Expectations; Originally posted Oct 10, 2014.

Tru here.  Enough added people are following this blog that I thought I would clarify my diagnosis and share my thoughts for the next few months. LONG post!

:
Cognitive symptoms began Feb 1999, and by later that year I was let go at work due to (formally) “inability to meet doctor’s return to work criteria” (and informally; slow task completion).  My employer recommended applying for permanent disability and it was given almost immediately, on the condition that I have no control over the funds received.  (Hard to take within a few months of being Secretary to the Financial Controller of large facility.)  Driver’s License removed 2000, but I contested and after 60 minutes on-the-road driving test was able to get my license back in 2001.  2007 discovered Lyme disease, Babesia, and Celiac, so began intensive treatment which lasted until May 2012 (five years).  Muscular symptoms dramatically improved during this time; I was able to leave wheelchair and begin regular program of walking.  However, cognitive symptoms continued to intensify.  By 2012 my reading comprehension had dropped from University-level to barely sixth grade.  I was having trouble with repeating questions, and not remembering basics like whether I had fed animals or myself.

Doctor’s diagnosis 2012-Jul 23 at 10am: I mentioned my suspicion of permanent progressive dementia.  The doctor agreed.  He had already done appropriate blood tests and MRI, and today he said that whatever kind of dementia this is, it is still at an early stage because my brain is still within normal size range.  He has been my doc for 12 years.

Discussed diagnosis with family and “came out of closet”.  But wanted confirmation from neurologist so the following summer (2013) went to Stanford Dementia Center.  NeuroPsych scores still showed IQ 119, and they did not understand why I was having these symptoms (audio memory in most severe category of brain-damage scale, difficulty with reading comprehension, not recognizing husband’s face, etc.) so suggested I see a psychiatrist.  After 6 appointments in order to be absolutely certain, psychiatrist gave me a clean bill of mental health.  However, since Stanford did not respond to my doctor’s letters of concern, and seemed unwilling to share raw NeuroPsych scores to enable later comparisons, I am not returning to Stanford.

Several symptoms dramatically improved with Aricept in Jan 2014, but after six months mostly declined to pre-Aricept performance levels.  I asked for one of the top specialists for Lewy Body Dementia Association to give a second opinion, but after two months’ wait he turned me down.  I heard some facilities do not see dementia patients with history of Lyme.

Just a couple months ago it was pointed out that I am behind in mammograms.  My doctor gave me the choice of whether I wanted to discontinue these maintenance activities and I said yes.  I deeply appreciate being given this option.

During this year of 2014 I have become increasingly invested in “PWD Perspective”, making public the perspective of Persons With Dementia (PWD).  I have become over-extended in both time and abilities.  Most other aspects of life are being postponed for this goal.  Last night my reading comprehension was probably about 4th grade, and that is scary when so much of my analysis of life is thru writing.  I have not been able to understand my own writing (while I am writing it) for a few months now, so review for editing is impractical.

I must repeat:  I have really conflicting feelings about going thru the diagnostic process again.

Recently told 20-30% Britain autopsy shows improper dementia diagnosis.  Considering the huge value placed on diagnosis, that is a dramatic (forget the appropriate word but similar to …) difference, and I doubt if USA is much better.  Some brain autopsy shows evidence of clinical “dementia” despite no evidence of dementia symptoms before death.  And the opposite is also true with autopsy showing no clinical dementia for patient diagnosed with “dementia” and showing dramatic symptoms.  My theory is that, like many other fields of study, medical science has become very dogmatic about PIECES of fact, all too often seeing those pieces as the whole, which is mostly unknown.  As my husband told me, “No matter what the illness is, splintered opinions from specialists only make it more difficult to get a timely diagnosis.  Please do not let your confusion get caught up by theirs.”

Truly, like the diagnostic status of most of my PWD friends, “fact” of dementia diagnosis is fragile and temporary.  Subject to change if their particular doctor becomes unavailable.  Probably 50% of my PWD friends have at least one doctor who says they do not have dementia, and at least one doctor who says they do.  But I believe all of them have experienced the blood tests and brain scans to rule out other causes.  All that I have talked to have had NeuroPsych testing.  Most have not gone thru elimination for possible Psychiatric causes like I have, but when they need to see a new doctor each is vulnerable to the new assertion, “but you are too young for dementia” and start to revisit the diagnosis issue all over again.

I am currently fed up with the transitory nature of clinical dementia diagnosis.  Doctors don’t seem to recognize how re-evaluation of diagnosis throws patient world into greater chaos.  That is additional chaos thrown onto the already-scrambled symptoms of dementia, and can push some patients to the breaking point.  Both loved ones and doctors need to carefully consider factor that PWD has already been on this roller coaster for years.  It is exhausting.

Have you ever thought you saw a loved one after they were dead?  Your heart skipped a beat then rose on wings … only to crash in the dust.  Or vivid dream where their death was just a nightmare and you are so relieved that the nightmare is over, and enjoying them in your life again.  You wake and renew the grief process.

Each re-evaluation of dementia diagnosis does that to patient, because dementia diagnosis is notification of terminal illness with a certain “normal” route.  To maximize preparation for living well in those circumstances, you are spending both time and money on things that you would otherwise spend on completely different priorities for a “normal” life.  MAYBE I can get my life back, then I could do this.  I could do that.  The longer you are in limbo the more hopes are raised, despite conscious efforts to keep expectations within realm of reality.  Maybe I should not give this project away because if these dementia symptoms are temporary then I could finish writing it.  I could finish embroidering it.  I could finish sewing it.  I could go back to work and make money in order to maybe fulfill this other wish.  Oh … if so then …  And we are back on the roller-coaster again!

On the one side there is the wonderful opportunity to exploit this window of time when we can communicate with world and bring awareness that patient has life after “diagnosis” then window is slammed shut and we were inaccurate in premise of all communications.  … until later re-diagnosis is re-installed on the down-swing of roller coaster, after patient is unable to communicate and doctors discover they were correct in first diagnosis!

In my case I cannot continue these extroverted tasks of world-wide communication while going thru the added chaos.  Due to my increasing time investments with new project of making public the PWD Perspective, time investment doubles every few weeks.

I have been in “over-drive” for months and the last few days have been overwhelming.  I am drowning.  Even with my extra tools, last night’s reading comprehension was about 4th grade level and I am unable to participate in life.  My brain is extra scrambled but at same time trying to make arrangements for yet another series of appointments with new set of doctors, (and I have been thru so very many with my Lyme stuff and now this).

I very much enjoy turtles; the lovely placid creatures who carry secure covering and so easily pull themselves under cover for time of restoration and rejuvenation.  As an introvert my private time is crucial to my well-being and I think it is time for me to pull into my shell and you will not see me for a while.  If you want to check on me I will probably post my current “diagnosis” on the cover of my “shell” (blog at truthfulkindness.com).  After my next blog with pictures of projects from my friends, you won’t see me for a while.  My time will be spent on details of daily life with Creator, self, and loved ones.  Need to establish my new craft room, make curtains for all these windows, and other craft projects which have been put on hold for past 15 years.  My husband hopes there is enough room in my little turtle shell for all my plans.

If someone has spare time and would like to enable publication of PWD Perspective during these months, please contact me at truthfulkindness.com. Other than that, I will post as often as I am able to, while in hibernation.

Original posting on Dx is at https://truthfulkindness.com/2014/10/10/my-diagnosis-expectations/

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