Saturday, November 22, 2014

What did my Wife say about my realistic day dream?

I received a question regarding my Wife's reaction to my realistic day dream.  Good question!   The short answer is;  "Write it in your log and tell tour Psychologist!"   The long answer is a little more complicated.

My Wife approaches my disease and it's progress in a unique way.  She mental catalogs everything that happens.  She uses those data points to track my progress and mental plan her approach to me and my disease.  She never treats me with any difference because of my disease.  She keeps me involved in the everyday decisions even if I do not make them.   Her goal is to keep me as normal as possible regardless of the progress of my disease.

However, she let her emotional "Iron Curtain" down today.  We were talking about the stress of our home not selling yet.  I expressed that I had considered backing out of the Azalea Trace move and just staying in our home.  Linda said; "Then everyone will see me age, quickly!  When I have to find a place that will take you or try to find a way to take care of you at home, when you progress further."  That was a monumental statement from her.  Because it is the First time she has ever expressed her concern about the future.

Lewy Body Dementia is truly a journey for both of us.  What happens to me impacted Linda much more.  I need to always remember that fact.  And while some may see her as a stoic, strong, woman and wife.  I see the cracks in that "Iron Curtain" and I understand how deeply hurt she really is.

I hope that answers the question one of my readers took the time to ask.  I appreciate your replays and support.  We are all in this together.

Thursday, November 20, 2014

Day dreams

Yesterday, while I was home alone, I got involved in a "Day Dream".  Everything in this dream was realistic to me.  I could see the people and the equipment in my mind, and I was there.  I was speaking our loud, not in my "Dream Voice".

I have told you before that I spend the vast majority of my day thinking about m career in the Navy.  That time is comfortable and enjoyable for me.  I was young, strong, fit, and in charge.  I knew what I was doing and even though what I did was dangerous, I had no fear.

Yesterdays "Day Dream" had me reporting to a Cruiser.  The day I got aboard, we had a Gunnery exercise and the guns failed to fire.  As I started to investigate the reason for this failure.  I discovered the Gunner's Mates were failing to do proper Pre-Fire checks.  They had not tested the firing circuits as outlined on the Pre-Fire maintenance card.  Furthermore, they did not know where the test equipment was that was required to do these checks.  I was livid.

In my "Day Dream" I was using "Sailor" talk to get their attention and I was actually walking around the house talking and gesturing.  Now, I have dreams that are about my Navy career and that are very involved.  But this time, I was fully awake and fully engaged in this "Day Dream".

It does not frighten me.  As a matter of fact, I was comfortable and happy as I went about restoring professional discipline to my new division.  I actually felt like I was back in uniform and and back in my element!

As my disease progresses,  expect more of these episodes.  Right now, I come back to "Today"after my "Day Dream".  But, I know that these episodes will get longer in length and then, one day, I will not come back to reality.  But I know, when this happens, it is a comfortable time for me.

Monday, November 17, 2014

Riding with you wife!

Most of you know I have all but gave up driving.  I have kept my license but I choose not to drive.  My vision issues, hallucinations, and the legal ramifications of my disease have caused me to do this.  I am not happy about it because I am fundamentally a prisoner in my home.  I cannot even go get a haircut without someone taking me!

Think about that!!  When was the last time you had to ask someone to take you to get a haircut??  Then, add the fact that I live in Florida, have no friends here, and only have my wife to chauffeur me around.

So, MEN, how do you like riding with your wife?!  I am not casting dispersion on women drivers.  But, I am not a good passenger, even if another man is driving, and I am even worse when my wife is driving. There is s dent in the floor on the passenger's side of our new Subaru where I have REPEATEDLY tried to apply the brakes!!

There is another issue.  Travel.  I hate airplanes.  The airline industry has degraded into a cheap bus company.  Their planes are flown until they refuse to fly anymore.  Most airlines are flying aircraft that are 20+ years old!!  Couple that with the fact that the aircraft are maintained by contractors that were hired by the airlines for being the LOWEST bidder!!  Not to mention the aircraft are flown by people that drink too much, carouse with men or women when they are supposed to be resting, and are held to schedules by their employers with salary cuts and bonus reductions.  Oh, you may add most pilots are ex-military pilots that either washed out of the military with bad evals and would not qualify for command or only went in the military to get they wings and required hours and then left the military to get a job as a air born bus driver.  Then, there dis the way the airlines treat passengers.  I remember she flying was luxurious.  People actually dressed up to fly.  Meals were served on dishes!  There was cabin service.  Luggage was free. There was NO carry on baggage and only coats could be in the overhead bins.  Now, flying equates to ridding a bus in rural Mexico!   The only thing missing is chickens in the overhead bins!!   And then there is the cost of the torture of air travel!!

No I hate flying and will only do it in extreme emergencies.

But, this limits my trips because with only my wife driving, we are limited in any distance we drive.  Where I could drive until the tank was dry, stop for gas, coffee, and a Head stop, and drive until the next tank went dry, she is tired, exhausted, before the end of the first tank.  I once drove from Virginia Beach Virginia, to the Pennsylvania/New York state line on the northeast extension of the Pennsylvania Turnpike in one stretch!!  My wife's bladder was in danger of bursting and I was in trouble for the entire weekend!  But, those days are gone.

So, another sad effect of LBD is the imprisonment of the sufferer!  And trust me I AM imprisoned.   I dearly miss my friends in Virginia! My life is devoid of male companionship and friendship.   But, there is little any of us can do about that.  It is, the way it is.  Or, as Betsy Walsh, from NAVSES Philly says; "It is what it is!"

So, I ask the question once more; How do you like riding with your wife?  I thought so!

Wednesday, November 12, 2014

Robin Williams had Lewy Body Dementia!

We found out yesterday and FOX News reported on air today that Robin Williams had Lewy Body Dementia.  Now, everyone will assume that he committed suicide because of this disease.  They will speculate that his hallucinations were tool real, too frightening for him.  Or, the prospect of the diseases ravages were too much for him to live with.  Both or none of that speculation may be true.  Only he knows for sure.  

But the god thing that may come from his death is that Lewy Body Dementia may now get some attention and those of us who choose to LIVE with this disease may actually get some attention.

I have read on the web page from others with LBD that they are sick of being told they are not sick or they don't look sick!  LBD is a fatal, neuro-degenerative disease with no know cure.  We are not sick, we are dying!   The Lewy Body tangles will effect every part of our brains until our involuntary functions stop and we die of septicemia.  Of course, the most prevalent cause of death in LBD patents is aspiration.  But the end have been given a death sentence as sure as Stage Four Cancer of the pancreas!  It is time those in the day to day practice of medicine and the general public recognize that.

Mr. Williams chose to take his own life.  That is tragic for his family and for the LBD community.  But maybe his death will give Lewy Body Dementia the recognition that will drive the medical field to actually recognize our disease and then they will try to help us.  

It took Lou Gehrig to publicize ALS.  He put a face on that terrible disease.   Maybe the death of Mr. Williams will do the same for Lewy Body Dementia.

Monday, November 10, 2014

Neurologists that actually TREAT Dementia?

I have read numerous posts on the blog about their difficulty finding a Neurologist that actually understands Lewy Body Dementia, well enough treat the individual with LBD.  I have had my own issues with neurologists.  Today, I did a search for the Gulf Coast and found few neurologists that state that they deal with dementia patients, well enough LBD.

The fact is, many neurologists try to tell us we have something other than LBD.  Strokes, Parkinson's, Depression, or other diseases, are the favorite diagnosis.  Then when we aren ourselves with knowledge, the doctors get angry and tell us to go away.

Lewy Body Dementia is either the second or third most diagnosed dementia.  And, recent medical discoveries are connecting Lewy Bodies to Parkinson's and Alzheimer's!  If that bears out, LBD is the MAIN case of all dementia's and movement disorders!!

It is a shame, be we in the LBD community must be pro-active.  We must do research on this disease and keep a log of the symptoms our loved ones are experiencing.  What we do may help medical science and it will certainly help our loved ones.

I also read a study that stated that individuals with autonomic function failures have a high risk of early death.  The fluctuations in Blood Pressure, constipation, dizziness, all are functions that are negatively impacted by the Lewy Bodies impacting the Autonomic functions of the brain.  I wonder him many neurologists have read that study.  I intend to take a copy to my neurologist to educate him!

Keep reading the LBDA web site.  Keep looking for new studies.  Knowledge is our best weapon against Lewy Body Dementia.

Saturday, November 8, 2014

Feeling dizzy

I slept in this morning and woke up to a call from one of my Navy Buddies.   After an 80 minute telephone call, I got up and made plans to apply a new paint sealant to our 2015 Subaru Outback.  After brunch, I tackled the car.  The sealant and tire dressing went flawlessly!  After two hours, the job was complete and the care looks great.

However, all the physical activity, the up and down action required to wax a car, apply dressing to the tires, and buffing left me suffering from dizziness and a feeling of looking at things from a distance!

These feelings have continued into the evening.  I assume that it is caused by the LBD impact on my autonomic functions.  That is my guess!   If it gets worse, I may seek medical advice.   But, I think it is just the new normal.

I have written about this issue before and it is just getting worse.  I suppose I should watch what I do.  But, I enjoy waxing the car and keeping it looking nice.  It is one of the few things I still enjoy doing.  So, I will keep on taking care of the car until I fall down doing it!

Still, dizziness and seeing thing as if they are far away is an issue I need to deal with.  So, I thought I would report it to you.  Remember, LBD is a journey that changes everyday.   This was today's report of my journey.

Tuesday, November 4, 2014


Thank You!!  When we started this blog, with the encouragement from my neurologist and my wife's technical ability, we never thought so many of you would enjoy and benefit from my open discussion of Lewy Body Dementia.  No accolade or award is as sweet as the honest  comments from your peer group.  I deeply appreciate your comments, prayers, and readership.

I have said this before, you are my support group, my treatment team, my LBD family and I appreciate each one of you.  As I have said before, I will continue to write as long as I can.  And, I am sure you recognize that my journey is speeding up and gaining intensity.  No big deal!  I am still here.  Maybe a little more grouchy, fuzzy, unstable, or disoriented, but still here.  And, as long as spell check works, you will be able to figure out what I am typing for a while!

Again, I thank each one of you for being there for me!