Wednesday, July 31, 2013

Second visit to my new Neurologist

Today was my second visit to my new Neurologist.  He remembered me!  I am impressed.  The last Neurologist treated me for 18 months and acted each time I saw him like I was a NEW patient!  It was like that movie, "50 First Dates!"

I have been having issues with Sinemet.  It makes me drowsy, with uncontrolled yawning, nausea and even dry heaves.  My nose even runs when this hits me.  I can control the issues if I eat a massive meal before I take the Sinemet, but that has it's own growing issue.  SO I discussed this with my new Neurologist and he said; "You have Lewy Body Dementia and Sinemet does not help people with LBD.  It may even make your hallucinations worse!"  WOW!!  That is the first time I ever heard that!!  He is also taking me off another drug that is predominantly for Parkinson's!  I am impressed, someone who actually know how to treat Lewy Body Dementia.

Now I realize this is a journey and not a race.  But I am happy to have a neurologist that listens to me and seems to care about my well being.  My neurologist in Virginia was a "Bull Dog" when it came to diagnosing my disease.  She even used the University of Virginia Medical School to get a second opinion and verification of her diagnosis.  But after that, she was really done with me.  I had the disease,  it would probably lead to my demise, take your pills and shut up.   This Doctor is different.  He wants to help me find the best way to live with this disease in a manner that gives me the best quality of life!   Again, I am impressed and happy.

I don't see him again until late October.  By then, I will be off of one drug and another will be cut in half!  I believe we are on the right path!!

Friday, July 26, 2013

A week at the hospital

Our youngest Grandson had major back surgery this week.  The surgery was Tuesday and lasted 7 hours!  We arrived at the hospital at 0500 and did not depart until 8PM.  Then everyday at the hospital since then.  This evening was the turning point for good.  I believe he is now on the mend.

I was helping him walk down the hallway of the ward, a typical recovery exercise, but I was little help.  His grip for steadiness on my arm caused me to be off balance and stumble.  That surprised me but it should not have.   I have enough problems walking on my own.  A few days ago, I was helping a handyman work in my bathroom and I needed to step over his leg, I crashed into a wall and only the sink prevented my fall.  The toes on my right foot are all black and blue and hurt.  Balance is no longer my strong suit.  Considering I used to be a competitive figure skater, not having balance is a new issue in my life, at least new in the last couple of years.

A big hospital is an interesting place.  This hospital is large enough to have a children's wing.  The nursing staff is very pleasant and very professional.   The facility is modern and very impressive.  They even have a game room for the children with a Wii and other video games!!  They have free Wi Fi in each room!   But the reminders of the purpose of the facility are everywhere.  CODE BLUE gets called numerous times a day!  Sad parents walking around holding eh hands of children that are much sicker that they know.  Old people being pushed in wheel chairs with little life left in their eyes.  It's a hospital!  Sick people go there.

It reminds me of my condition.  I am not as strong, not as energetic, not as alert, and not as agile, as I used to be.  I was really surprised how much strength and stamina I have lost over the last two years.  But what really impacts me is that I don't care about those things.  I don't care.  I accept  how I feel, how my mind works,  how my balance works.  It is what it is.

We had to walk a good distance from the parking garage to the room my grandson is in.  That walking has really aggravated the pain in my legs.  The push and pull muscles are really fighting each other and I am in a fair amount of pain.  I refuse to let that deter me from being with my Grandson, but I pay for it at night.  A small price to pay to support him and his parents.

So, this week has been a series of lessons for me.  A lesson on life, a lesson on pain, a lesson on the progress of my disease, and a lesson in love.  I still have a good amount of experience and love to give.  It may cost em a bit of pain, frustration, and effort to offer that experience and love, but I still intend to be her to offer it!

Friday, July 19, 2013

The impact of large crowds

Yesterday, before the Baptism, we had lunch with the Pastor of the Church we attend here in Florida.  I enjoy Jon and his preaching and the meal was very enjoyable.   The topic of conversation settled on my disease and  Jon wanted to know more about the impact on me.  I was telling him various problems that I have discussed in this forum before and the topic of my loosing the ability to read came up.  He wanted to know how often those episodes happen.  My answer was not specific because I really did not know.  My wife chimed in with a very specific answer.

According to her, and she pays close attention to these things, I loose the ability to read, briefly, when I am in large groups, or where there is numerous voices reading in unison, like in Church during responsive reading,  or when I am reading Scripture for a group of people.  This information takes me back to something my Neurologist in Virginia told me.  She said, the "Executive Function"       portion of my brain no longer works correctly!

That theory makes sense.  My brain cannot sort out extraneous noise and there fore overloads and shuts down!  The same effect happened when I was under stress at work.   Early in this journey, I experienced a number of episodes where I would be driving home, and I would not know where I was, where I was going, and where I came from!  Very unnerving!  One time, I drove home to a place I had not lived in years!!  Again, under stress the "Executive Function" of my brain overloads and shuts down.

One on one, or alone, I can read, I can carry on a conversation, or even drive, for the most part.  But add a stressor and the train comes off the track!  This was a great revelation for me.  Sometimes doctors say thing that don't make sense to me.  But, now, with time, the "Executive Function" premise makes total sense.  Stress is a big negative for someone with any type of dementia.  And maybe, it is the first indicator of dementia.  That is, how does stress effect you?  Does it make your problem come into view?  Does stress cause you to become confused?  How do you perform in the absence of stress?  

It is no surprise that our caretakers have the best view of our disease.  If anyone really wants to know how I am doing or how a certain symptom manifests itself, ask Linda.   She know exactly what I am going through and she can give you a reasoned description of what effects me and how that impact is displayed.  And yes, she is the one who takes the car keys when she knows, many times before me, that I am too tired, upset, stressed, to drive.  And she keeps me out of crowds as much as she can, because she understands how they effect me.  I am a blessed man.

Thursday, July 18, 2013

Living with LBD

I was at the local Methodist Church, playing Ping Pong in their activity center, and I had an opportunity to talk with Andy, my partner in LBD.  Andy is a bit farther in his journey than I am.  He no longer drives, has more difficulty walking than I do, and has more difficulty carrying on a conversation.  Yet, he exercises, enjoys people, and is very well versed in the symptoms and treatments of LBD.   In all, Andy is enjoying his life while he deals with the limiting issues of LBD. So, he is content.

I also enjoy my life.  I do not let my medical issues dictate my happiness.  Yes, I get tired, sweaty, confused, and my muscles ache, but I still get up and go.  Like my Ping Pong outings.  I play Ping Pong with a fellow who has an advanced case of Parkinson's.  He has had the Deep Brain Stimulation surgery but his other side still shakes and he falls down sometimes because his feet get tangled.  Yet, he plays Ping Pong!  Yes, we spend plenty of time chasing the ball and picking it up is a challenge.  But, he and I play Ping Pong and have fun!!  We play three games and then rest, followed by another three games.  This goes on for two hours.  By then, we are both soaked in sweat, even though the place is air conditioned, and very tired.  But we benefit from the fellowship and exercise.

My wife and I also have a Ministry at the local Assisted Living Facility.  We lead a Bible study there every Thursday.  A few weeks ago, one of the men in the class asked me to Baptize him.  I agreed and the Pastor of the Church we attend made arrangements with the local First Baptist Church to use their Baptismal.  The activity Director from the ALF used the large, handicap equipped, van to transport 12 members of the Class to the Church for the Baptism.  It was a wonderful and meaningful time of worship.   This Ministry is yet another way of not giving in to the effects of LBD.

I learn a lot from Andy and I hope he and I set a good example for others on this LBD journey.  You can have a disease but not be HAD by the disease!   Yes there are limitations, but they can be managed if you want to.  It takes effort and changes to your routine.  But life can be very full and very rewarding if you choose that path.  I do.

Friday, July 5, 2013

My new chair

We bought me a new recliner that will lift me up when I have problems getting up from a chair.  It is very comfortable, and since it sits higher than most chairs, I can get up easier even without the lift function.  So, I already like it.

The chair is entirely electric!  Recline, decline, lift, everything.  It has a heated seat and back and three speed vibrating.  My constant companion, Marcel, thinks the vibrating function is the chair growling at him.  So, I don't use it.

The electric functions of the chair are slow!  If I am sitting down, with my legs up, and I need to get up, it takes a while!  There are no quick moves.  Someone at the door, they better have patience.  Telephone ringing, Voice mail will get there before me.  I now am in slow motion.

The chair does have an emergency back-up battery in case of a power outage.  Good thing.

There has been a unforeseen benefit.  I get up less so I drink less coffee and get less snacks.  My weight and waist line will appreciate that.  And, since my new GP has already told me I need to loose weight, the chair may be a blessing.

Going to the movies

Today, we decided to take in a matinee.  We watch the new Johnny Depp movie, "The Lone Ranger".  It is a well done movie, acted well, with some "Depp" humor and some action.  But, I am not a movie reviewer.  However, how the movie effected me or impacted me, is what I write about.

First, the movie uses SOME of the low light shots, scenes in the dark, flashes of light.  All of these cause me difficulty.  But most of the movie is action done in  day light.   But one emotion surprised me.  The villain, a railroad boss, was particularly foul.  The emotions impacted me very negatively.  At one point, I had all I could do the control my emotion to scream out loud!  I was angry, and ready for action.

I was able to calm myself down and I did not embarrass myself, but it was close and that surprised me.  I have written before about difficulty controlling my emotions, but this time was different.  I am not certain what it means or why it happened and I did discuss it with my wife.  It just bears watching, and we will.

The movie was good.  But it's impact on me was interesting.

Tuesday, July 2, 2013

A new Doctor!

As I have written before, my GP is being closed by Sacred Heart Medical for cost cutting issues.  It is what it is!  I also wrote about my Wile's telephone call with the folks at Sacred Heart.  well, they called back and set us up with an appointment with a doctor they thought would be a good match for me.  This doctor's practice was already full, but she made room for me after she was told about my condition.  We had a one hour appointment with the doctor this afternoon!!  That's one entire hour with her.  Not counting the time to do the paperwork, get my vitals, and wait for the doctor to see me.  I was very impressed with her.  She actually knew what Lewy Body Dementia was!!  Wow!

Now, this is not a fluke, or a coincidence.  God worked this out after much prayer from my wife and myself.  I just love it when God makes the bad that humans construct turn into good for those of us who believe.  This is a blessing.

SO, I feel better, my Wife feels better, and we have a wonderful new Family Doctor.  More to come.

The stress of the caretaker

I have told you before that the Sacred Heart Medical Group in Pensacola has decided, for financial reasons, to close my GP's office.   Since I moved to Florida, Dr. Atkinson has been wonderful.  He works well with me, takes his time, and displays a caring attitude.  But, I am loosing him and it has caused me great turmoil.

Today, my wonderful Wife spent some time on the telephone talking with Sacred Heart trying to explain to them the impact of their financial decision when it comes to my care.  She was explaining how this has effected me and she was describing my symptoms to the individual on the telephone.  She was crying as she talked!  I am so sorry that I am sick and causing her such grief.

I did not plan this, no one does.  I believe, and my neurologist in Virginia believes, that it is directly connected to my exposure to chemicals in the Navy.  That and at least three major concussions, one that was directly connected to my Navy service.  Again, I did not plan to be sick.  I always thought I was bullet proof!  I planned on working, even into retirement years.  And before you scream at your screen, yes, I had frustrations at work that made me say, I want to retire.  But I would get over those and be happy doing what I was meant to do, help Sailors and Navy ships.

Still, the love, frustration, and even desperation in my Wife's voice as she talked to the administrator at Sacred Heart overwhelmed me.  It is easy to love someone who is well, functioning, all there, and fully participating in life.  But that is not me, not now.  Yet, She displays even more love, more care, more compassion and understanding that ever before.  I love my Wife and I am blessed to have her by my side.