Wednesday, November 26, 2014

Our move to our retirement community

I have written before about our pending move to a Continuing Care Retirement Community (CCRC) in Pensacola.  We were offered and we accepted a two bedroom apartment in the Independent Living area of this CCRC.  We passed the medical and mental screening and worked with the facilities manager to make the changes and updates we wanted in the apartment.  For the last month or so, walls have been removed, bathrooms changed, flooring replaced, and ceiling fans installed.  We visited our apartment today and it is very close to being complete.

The other part of this journey was to sell our home in Florida.  That proved to be much more difficult than either of us imagined.  We were told by the media and the realtor that the market was moving and we would have no problem selling our home for what we were asking!  Boy did that opinion turn out to be wrong.  But, God had a plan and it was a good one.  Today, we signed a contract for the sale of our home, for less than we wanted, but still a fair price for us and the buyer.  God is good!!

So, now we can start to pack, move things, and get set for our move.  I expect we will move into our new apartment during the week of 8 December.  Of course, the facilities manager has not called me with that date yet, but, judging from what we saw today, it could only be earlier.  We are ready!!

This has been stressful for both of us.  I have been under a tremendous amount of tension and it has displayed itself in my mental ability.  I hope that I can now calm down and relax.  Any move is stressful for any person.  Add dementia to the mix and the tension and stress becomes almost disabling.  When we finally move in to our CCRC, I know I will have issues.  I did when we move here, and I was better then than I am now.  Where is my stuff!!  Security issues, and how does this work are all issues I will experience.  But, as long as I can find my coffee cup and the coffee pot, I will do fine!

I will keep you posted.

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!

How does it feel to have Dementia?

Good question!  How does it feel, what are the sensations, how do you see things, does it hurt?   All questions I bet you would like to have answers too.

First of all, only the Parkisonian issues related to LBD cause physical pain.  Now, the Lewy tangles impact parts of the brain that control bowel and urine issues and those can cause pain.  But you should already know what constipation feels like.

As for the mental issues related to the dementia part of LBD.  If you are a drinker of alcohol you may have an idea as to what I feel mentally.  For instance, today, I see the world around me at a distance.  My brain is responding very slowly.  My vision is fuzzy.  And my body movements are slow and clumsy.

You may have had those issues if you had a little typo much alcohol to drink.  But, drink more and your speech becomes slurred, you drool, maybe even wet your pants!  You loose control of what you say, and even babble!  Nothing looks right to you.

Then, when you wake up, you are confused.  You do not remember last night.  Maybe you don't even know where you are when you wake up!

All of this relates to how the dementia portion of LBD impacts me and I bet most LBD patients.  Right now, I feel like I have been drinking, steady, for a while!  Things look distant to me.  I am tired, lethargic, and disoriented.

So, that is my primer for those of you who ask the question on how we feel.  I hope this helped.

And while you are doing that, do this!?

Do you remember the time when you could tell your wife or husband; "While you are doing what you are doing, do this other thing."?  I guess in the computer age they call that multi tasking.  Well, I can no longer do two or more things at once.  And, if my wife tells me to do something when I an already dong something else, I drop the first task and do the second task!  You can see where that could lead to a catastrophe!  Like, when I am cooking!

I have informed her of this problem, but she still insists on tasking me when I am already engaged in something.  I guess old habits are hard to break.

I can't even follow a recipe anymore.  I only cook things I have in my memory.  Like, I can cook eggs.  I can cook a steak.  I can cook chicken.  Don't expect me to follow the recipe on the Campbell's soup label for a new chicken dish!  I will be totally confused by the second ingredient.

I am passion this along because many of you have lived with your spouse for 30, 40, 50 years.  Most of that time, he or she has been mentally alert and able to do many things, at once.  But now, tasking us with more than one thing at a time is overwhelming and can lead to anger, frustration, outbursts, and even crying!

We are not who we were and we cannot do what we used to do.  Save both of us the frustration and give us one task at a time!  We will both be better for it.

Monday, November 3, 2014

Does your LBD patient "Pretend" to be OK?

It is called "Show Time" in the LBD community when we put on the show of being OK or normal when company is around.   But, does your LBD patient pretend to be OK when the caregiver is around or at a doctor's visit?  I used to!

It was how I was raised up in the Navy.   As a leader, we were supposed to emphasize the positive!  So, for decades, she someone asked me how I was doing or how things were going, I always said; "Outstanding"!  I would go to a doctor's visit and tell them I was doing good or that I was dealing well with the disease.  I actually had a neurologist in Virginia tell me I was a liar!!  She said I had not yet dealt with my disease!  She was right.

Now, more and more, I am trying to be honest when someone asks me how I am doing.  But, that requires me to be retrained.   Honesty is required on my part for others to understand where I am.  So, if I want them to understand where I am, I have to tell them, honestly.

So, I challenge you to challenge your LBD patient to tell you exactly how they feel and what is happening in their view!  This will clear boundaries between the caregiver and the LBD patient.  No longer will there be a chasm between the caregiver and the patient.  Both of you will understand.  But this will not happen if the caregiver does not insist that the LBD patient be painfully honest!

Yes, there are embarrassing topics that require discussion.  But honesty will pave the road to understanding.

Feelings and emotions that I notice

I am sitting in my den, with my two faithful miniature poodles, Marcel and Shari.  I like to sit here in the quiet and look out the window.  It is sunny out and the wind is moving the trees just a little.  The sky is blue, cloud free, and it is relaxing to me to look at this scene.  It could easily be a painting or a photograph!

As I sit here, I think of my past, where I have gone and what I have done.  I think about my youth, my parents, old friends, successes and failures.

All of this makes me realize the finality of this disease.  Our pending move to the Retirement Community cements this.  Why, because it is the last move.  Regardless of how long I live or stay lucid, I will never leave Azalea Trace until I die.  Now that is a sobering thought.

The old statement; I don't remember getting old, when did they?  regarding our children and grand children is correct.  Life has gone by so fast!  So many things have happened that I remember like they were yesterday, how can this be the beginning of the end?

But, it is.  And I might as well embrace it.  After all, Azalea Trace is a beautiful place with much to do.  In the visits we have had there, we have been treated like old friends by the residents in Independent living.  And, I will not have the worries of maintenance.  Yet, we have moved so many times in our marriage, settling in one place, with no chance of moving is difficult for me to digest.

I know this entire situation is a tremendous stress on my wife.  I can see it in her emotions, reactions to issues, and the level of worry she carries.  I am not the helper I once was.   Heck, I don't even drive the car?  Oh, I still wax it, wash it, and keep it clean. But driving on the road is probably long gone for me.

I yearn for one more time with my family from Cleveland, one more time with old shipmates, one more tour of a Navy ship, one more underway time, one more Firearms competition.  But, those thing are difficult to make happen.  I do understand.

So, I sit here, alone, except for the two poodles that follow me everywhere, and I stir around in my memory, stopping to look at the things that I did well and not so well.  Thinking, what if...  And know that will never be again.

Dementia is a strange, difficult, sad, journey for me and my wife.  The hardest part is that no one really understands where I am mentally or emotionally.  The truth is, they will never know.  That is the most cruel part of this disease.

Hug your dementia patient.  That means the world to us.

Sunday, November 2, 2014

Speech difficulties

I have noticed, lately, that I am having difficulties speaking.  I cannot find the correct words, I studded, and mumble, trying to get a thought out.  Now, for those of you who know me, this must come as a complete surprise!  Most of the time, you probably wish I would shut up!

It is not related to being tired or even stressed.  This problem is not always with me either.  It seems to be intermittent.  But, when it happens, I am frustrated.  It seems as if my mind cannot fine the word I want to say.  Then, my mouth, lips, and tongue refuse to work together to make the word come out!

I realize this is a classic symptom of LBD, but I promised to report any and all issues related to my journey with LBD, and this is a problem.

Related to this, is my mind jumbles letters together, or drops them out of words that I am reading.  The result is, I see and read a different word or a word that does not make sense.  You can imaging what an issue this is when I am Preaching!  But, even singing in Church can be an issue.   I simply lose the ability to read.  Not all the time, just intermittently, like my speech issues.  Again, I cannot tie it to anything like being tired or stressed.

It seems those Lewy Body Protein Tangles have found another place in my brain to clog up!  Maybe I should have changed my filter regularly.  You know, the old oil filter commercial; "You can pay me now, or you can pay me latter!"