Tuesday, May 28, 2013

Life is precious!

When my Father in Law was in the nursing home with Alzheimer's, in the late 1980's and early 1990's, I learned from observation that even in a deteriorating health condition, people find life precious.   I watched these people who lived in less than good conditions. clinging to any part of life. Just being able to sit in their chair, in the warmth of the sun was wonderful.  There were people always sitting near the front door just to greet someone new and have a brief conversation.  Meals were the highlight of the day and the simplest fare was savored!  They wanted to live life to the fullest!

Now, 22 years later, it is I who has Dementia and deals with life.  While I suffer from periods of grumpiness, depression, and rage, I still find great pleasure in doing this with and for others.  Relationships are very important.  I have written before about how much I enjoy talking with old friends and shipmates.  I enjoy utilizing email and Facebook to keep in touch with friends and family.  And, even though I am far away from my friends in the Tidewater area, they keep in touch with me and I appreciate that.

The last few days have been difficult for me.  My mood has been dark and I have had problems finding anything positive in my life!  Today, the sun rose on my mood!  I enjoyed an early telephone call from my best friend in Virginia Beach.  We spent 45 minutes on the telephone just being together!  Later in the day, I received an email from a very good Navy friend who will be coming to visit me the second week in June.  These two events set me up for a good emotional day.  I actually enjoyed completing a couple of chores around the house.

Then, this evening, my son called and needed my help repairing a bi-fold closet door.  Wow, I was really happy.  I had worth, if just for that moment.    We accomplished our task quickly with only ONE trip to the store and only ONE trip back to my house for tools!!  That was a very successful repair job.  Then, since things went so well, my son and I stopped and had an ice cream sundae!

Yes, today has been a good day and I needed one after the last few days.  It is times like these that I appreciate the up and down symptoms of LBD.  I was severely down for a couple of days, and then, as quick as I sank into my gloom, I was again engaged with people, using my skills, and being as active as I can be.  Yes, this has been a good day.

Thursday, May 23, 2013

Doctor's Visit, again!

I had a scheduled visit with my Neurologist today.  Instead of my wife and care giver going with me, my Son accompanied me.  The purpose of this change was to permit my son to experience my Neurologist's manner and also to have him get a little more familiar with my disease.

My Neurologist was his usual detached, scatterbrained self.   As usual, he treated me as if this was our first meeting!  He marveled at the pill chart my wife provides even though she give him one every visit.  He was even surprised at the typed page with all my issues over the last four months!  In all, he was not prepared and did not know who I was.  He also aggravated me by continually talking as if I had Parkinson's disease!  I finally got vocal and straightened him out on that.

He dd not address the fact that I have been having troubles eating, choking, and aspirating.  Nor did he address the fact that one of these events lead to a severe asthma attack!  I told him I almost passed out.  No reply!  He did run out of the room twice to check on things.  My son was not impressed.

Everyone in the medical field keeps telling me he is the best Neurologist in the Pensacola area.  Pensacola is in serious trouble!   He has NEVER looked at the records from my Virginia Beach Neurologist!  We asked him directly if he had reviewed those records and he said;  No, Why would I!?  That was the last visit.  I should have known then he was not the doctor for me.

My GP here read my records from my GP in Virginia Beach and told me he thought those were the best written medical records he had ever seen.  When I go see my GP, he is on track where I am and what I have gone through!  My wife has now moved to my GP!

So, with this as my basis for a decision, we are looking for a new Neurologist.  I am strongly considering going to the Naval Hospital or the VA for treatment.  They can't be any worse!

This is symptomatic of our move to Florida.  I always thought moving to Florida would expose me to doctors accustomed to older people.  I was mistaken.  The first dentist we went to was a lecher!   He told my wife she had good looking legs!  She does, but that is not what a dentist should be looking at!  My wife's GP was afraid to touch her as was the first dermatologist we went to.  And I am finally fed up with this Neurologist.  Trust me I am not hard to please.  But I would like to be treated like I was there before.

Friday, May 17, 2013

Routine is KING!

Our Grandsons are staying with us this week.  We both love having them here.  They are truly exceptional young men.  Of course, they are aware of my disease and the issues it causes.  Yet, they have not really been exposed to the effects of this disease.  They see me in the day tie, for a short period of time, when I am doing well.  But, as they learned last evening, nights are different.

I have addressed the "Sun Downer" issues before but they have become more dramatic in the last few months.  As I have also shared before, routine is very important to my mental well being.

I started this blog last Monday, I think.  Since then, I have been through the busiest and stressful week I have had in a very long time.  The Grandsons staying with us all week has been great.  I enjoy their company.  However, having two teenagers in the house at the same time is something I never experienced before.  Keeping up with them is a mental, emotional, and physical drain.  Don't get me wrong, they did nothing wrong.  They are just teenagers!

The other thing is my routine has been blown out the window!!  No naps, everyday busy, no down time, up late, up early, wow, I am beat.  No, I will be glad to have my routine back.

Thursday, May 9, 2013

Memory issues

As my LBD journey progresses, I have noticed a number of symptoms increasing.  One of them is my memory.   There are times that my mind is completely blank.  I have no thought on my mind at all.  Other times, I am focused on the past events of my life.  I still have very realistic dreams that run over into my waking hours.  Some of them have me believing that I am still working and have not retired from Civil Service.   In these dreams, I have been notified that I have been approved to retire, but I just can't seem to retire.  I have too much to do!  

Every night, when I lay down, I try to remember what I did during the day.  Most of the time, I don't remember the events of the day.   I can't remember if we went anywhere, of what we had to eat.  I don't remember names of people I meet now and I have problems remembering the names of the people I knew in the past.  Shipmates, folks I worked with, even family members.  This frustrates me and I often ask my wife the name of this person or that.

Of all the things I have lost, I miss my memory the most!  It's true!  It's bad enough I live some of my day in a dream world, but to forget the names of people I have known for years, old friends and shipmates, is difficult to deal with.

People with Dementia put on a "Show" to cover up their memory problems.  We pretend to know someone or pretend we remember a situation or event.  We smile, say "Yes" and agree with you.  But we really don't know what you are talking about!  It's the truth.  I watched my Father in Law do this when he had Alzheimer's and I do it now.  I never though I would be in this condition.

So, as this "Long Good By", as President Reagan called it, continues, I have become more and more frustrated with my memory loss.  It is the most difficult effect of LBD for me.

Wednesday, May 8, 2013

Physical capabilities are effected by LBD

I have noticed that I have lost strength and stamina.  I have written recently about difficulties getting off the sofa.  But I had noticed problems even before that with stamina and strength.  For instance, my wife and I used to walk for hours covering miles.   Now, I get very tired after a 20 or 30 minute walk.

My thought is that this is from the LBD.  All of the data I can find backs that up.  But I also wonder if my stamina and strength issues are from not wanting to walk or do much else.  I know inactivity causes muscle loss and lack of exercise will cause loss of stamina.  So, I intent to increase my physical activity.  Yes, I will start slow at first and I know I will never get back to where I was before LBD.  But, I still think I can be better than I am now.

The journey for someone with LBD is somewhat uncharted.  I find very little feedback from others with this disease even though the LBD Association say this is a very prominent disease.  But there seems to be very little first hand information from the patients.  That is one of the reasons I write this Blog.  

I will keep you postted on my progress.

Saturday, May 4, 2013

My first assisted lift chair

Today, we went looking for new living room furniture.  I know, I change couches like most people change socks.  Well, you could say the same thing about my automobile trades!  But this was different.  I can no longer get out of our couch easily.  It sets low and tilted back, so I have to slide to the edge and then get up.  On bad days, I need help.  So, we purchased one of those lift chairs.  It reclines, it vibrates, it heats, and it lifts me up when I need it.

Then, we found a chair that is equally comfortable for my wife.  It has power recline with infinite positioning and a power lumbar support!  She cannot wait until it is delivered.  She is excited as I am!

My chair is a concession to my condition.  A tool to help me do as much as I can.  That still is my goal, to be as active as I possibly can as long as I can.  Canes, Walkers, Lift Chairs, Power Chairs, anything to keep moving and doing!   That's why I take the fist full of prescription drugs that I do and that is why I will continue to be tough.

Wednesday, May 1, 2013

Asthma attack!

This morning, I was enjoying my typical toast and coffee when I aspirated some toast.   The choking and coughing brought on a serious Asthma attack.  How serious?  No air in!  I could not take a breath because my lungs were blocked by the tubes being in spasm.  I have not had an Asthma attack since I had Bronchitis last winter and ended up in the Emergency Room.  Luckily, my inhaler was close and a few shots of Albuteral and I was breathing again.

I bring this up because aspiration is the number one cause of death in LBD patients according to the LBD Association WEB site.  It is something I am aware of but I eat so fast, from habit, that I often aspirate and choke.  This is the first time that choking has lead to an asthma attack.  I will have to alter my eating habits.  But that will be hard.  The first ship I was on in the Navy had a Mess Decks that seated 45 men,  The Enlisted Crew was 350 and we had 45 minutes for any meal!  You learned to eat fast!

So, that is the latest problem related to the progression of my Lewy Body Dementia.  If you have LBD or are a caregiver for a LBD patient, be on the lookout for this problem.