Friday, June 29, 2012

No more medical tests!

I have finally decided that I have reached the point that I no longer will take or tolerate anymore medical tests!  The last test where they shoved a garden hose down my nose to see if my swallower was working right was the final straw.  And believe me, the thing was much bigger than a straw, even a soda straw!!

But there are other tests I have decided not to have.  For instance, a colonoscopy.  No don't get me wrong.  I believe strongly in colonoscopies as a preventative test.  A tumor found early, polyps removed early, can extend your life.  Please get the base line colonoscopy when your doctor says to.  But, I have had half of my colon removed due to a tumor found in my baseline colonoscopy when I was 50.  And I have had a number of colonoscopies since then.  But no more.

It is just time to say, this far and no farther.  On the advice of my neurologist, only emergency surgery is recommended.  So why do these intrusive, uncomfortable tests.  Not to mention the money spent for the tests.  It is time for me to take charge of my medical issues and treatment.

I don't recommend my stance for anyone else.  But it is the right choice for me.

Tuesday, June 19, 2012

No elective surgery

I believe I have written about the possibility of me getting the surgery to solve my Gastro-Intestinal Reflux Disease (GERD).  I have taken Proton Pump Inhibitors for 30 years!  They work but I would and my wife would like me off of the meds.  They have some side effects.  I had the first test, and it was a doosey!  The ran some type of device through my nose and into my throat to test the closing of my esophagus valves.  I now know why they wanted my stomach empty!  I gaged, did the dry heaves, and in general spent 20 minutes in misery!!

Then, during a normally scheduled appointment with my neurologist, I asked him if having this surgery, which requires General Anesthesia, was advisable.  He said, NO.  He also said, all elective surgeries were out.  Emergency surgery is OK.  Nice to know.

So, today, I called the doctor's office that was planning other tests and the pending surgery and told them I would not be having the surgery or other tests.  They sounded disappointed!  I guess they had a new car or an extension on their homes planned!

The neurologist said that general anesthesia has a high possibility of making dementia worse.  In other words, it may speed the progression of the disease by a jump!  He said he had seen it numerous times and really recommended against it.  So, the moral of the story for us with Dementia is, emergency surgery only!


Friday, June 15, 2012

Anger, revisited

I have written about anger, especially my anger, in the past.   I wrote about the time I lost my temper, BIG, at our previous apartments.  NO, we DID NOT move to Florida at the request of the apartment management! (ha ha)  Just the same, anger out of frustration and self pity is a problem.

Now there is a revealing statement.  I am frustrated over the way I am treated by the medical world, the Veterans Administration, other people.  It frustrates me when people who do not know me and have no reference point as to where I was mentally or physically, tell me, I am fine or that I don't appear to be sick!  I do have a diminished self because I cannot do or remember the things I used to.  I feel less of a man because I fall of ladders, get exhausted mowing a small yard, or get completely incoherent in a store.

But most of all, I hurt, mentally, inside, continuously.  Some of the medical professionals call this depression, but that is not it.   It is more like self loathing.  An I angry, yes.  Do I show it outwardly, no.  Why, it is just not a good idea.  So, I hold my anger inside, control it, subdue it.  I have told you before, for some reason, I cannot cry.  I have had that issue since just before my diagnosis.  I believe it is related to LBD just like acting out my dreams is.

Another issue is communicating with others.  I find it increasingly difficult to discuss my symptoms and their progression with anyone.  The doctors don't care and others just glaze over and ignore me.  Some want to tell me they have the same symptoms!  That really aggravates me!  If you have these issues, go through the pain of getting a diagnosis of your own.  Other wise, quit diminishing my disease by telling me my symptoms are no worse that yours and you are normal!  I am not normal, I have Lewy Body Dementia, and I am tired of having to prove it all the time.

Since I was a small boy, I have known I was color blind.  Not totally, just what they call a color deficiency.  Every time I would tell some one that, they would give me a color test!  "What color is my shirt?"  They did not believe I was color blind even though the medical community said I was.  Their opinion was, you can walk, talk, function in society, you CAN'T be color blind!  It's the same invisibility I suffer with LBD!

However, my anger must be controlled for my well being and the well being of my wife.  Sh has been the one true supporter and cheerleader through all this.  Regardless of how the medical professionals treat me of better yet, ignore me, I must remain in control.  SO, since you are my only support group; is this an issue with any of you or those you care for?

I figured it out!!

I am sitting here at home, my wife is at her water aerobics workout and it's quiet.  Jut me and Marcel the wonder dog.  So, I was thinking, maybe even reflecting on my life since the diagnosis of LBD.  Not how I have progressed or how life itself has been.  But my frustration with both of my Neurologists.  And I have determined where my frustration is.  If someone has Cancer, a broken arm, fibermyalsia, their doctors treat the like they have what ever it is they were diagnosed with.  The patient is told of problems to come with the treatment and told how they are progressing.  The patient and the family even have resources to go to for support.  Groups of people and professionals that know the disease and may have even experienced it.

With LBD, at least my experience, it has been completely different.  My neurologist in Virginia doggedly attacked my earliest symptoms.  She ordered tests, did research, and even consulted with colleagues in her field to make sure she was correct.  She sent me for a second opinion at a research hospital that reconfirmed her diagnosis.  After that flurry of medical activity, she stopped treating me like I had a disease and treated me more like an appointment she had to suffer through.  The neurologist here is the same.

I get no interest from the doctor in recent changes and symptoms even if my wife brings them up.  I get a blank stare for 15 minutes, a few grunt of acknowledgement, and then I sent out of the door with an appointment in three or six months.  Sine my issues are inward and cannot be seen with the naked eye or even a MRI, the doctors tend to forget that I and my wife are suffering.  Both neurologists know where to find sympathy, it is in the dictionary between shit and syphilis!

So, my frustration is that I am treated as though I don't exist.  Either that or I am a annoyance that has to be suffered to get the insurance payment in order to pay for the new Mercedes!

Am I feeling sorry for myself?  Maybe!  But I think I am really tire of being invisible.  The LBD Association web sight has all sorts of statistics showing that this is a disease of considerable numbers.  Yet, there is no support groups, no telethon, and no Hollywood stars coming to our support.  So, I have come to the conclusion that we are ALL invisible.  I don't yet know what to do about this invisibility, but the next time I have some quiet time, I am going to think or reflect on it.  If I remember!!

Wednesday, June 13, 2012

Latest visit to the Neurologist

Yesterday, I had my latest visit to my new neurologist.  I am beginning to think that if the Neurologist did not diagnose you with LBD, they don't believe you are sick.  That coupled with his attitude of, the drugs work, sort of, so what are you complaining about, lead me to believe I would be better getting my drugs from a corner Unlicensed Pharmaceutical Salesman!  Honestly, do these people understand what compassion, care, and concern are as it applies to their patients?   I have honestly had my fill.

On another note, I did get some, offhand advice from this quack.  I was considering having the reflux disease surgery done.  I have been on Nexium and it's relatives for 30 years!  I really would like to stop taking that pill.  I seems that maybe the surgery has a good track record.  I have seen the surgeon that does this surgery here and I am undergoing the preliminary tests.  So, I asked my Neurologist if General Anesthesia is a good idea for me.  He acted like I was asking him the meaning of Life!!  But, with some prompting, he finally said, elective surgery is not a good idea because it MIGHT cause me to go further into dementia.  He actually said he has seen this in other patients.  His attitude was; "Other Patients that are really sick", but that's my read of his attitude.  So, in any case, I probably won't have the surgery.  However, my wife wants me to complete the testing, just in case it reveals that this is more than elective surgery.  I agree with her.

I had the first teat today.  They ran a tube with sensors in it down my nose, into my throat to measure the closing of my lower valve in my esophagus.  Boy, was that a terrible event! The tube, through my nose, down my throat, caused me to gag, dry heave, and choke, all at once.  I finally settled down and completed the test.  No wonder they wanted my stomach empty.  They knew what was going to happen.  In any case, that is a test I won't have again!

So, the medical profession continues to depress me.  All that schooling and they have the personality of a bent shit can!!

Wednesday, June 6, 2012

Being with others helps and hurts!

Today, my wife went to do water aerobics and left me at home.  I enjoy these brief periods alone.  Well, alone with my constant companion, my miniature poodle named Marcel.  I any case, I was thinking, reflecting, accessing, and in general, doing a mental inventory of where I am.  I quickly slipped into a quiet mood.  I was comfortable, not worried or threatened, and also not particularly connected to the world around me.  My mind was on my Navy days and I was happy.

When Marcel let me know that my wife was home, I was jarred back into the present.  I had to interact with her.  I had to answer and ask questions, pay attention to her replies, and help her with packages.  While it is an effort for me to be engaged with people, I believe it is good for me.  I believe that, without that human contact, I would quickly slip into a malaise that would overcome me.

Just the same, I enjoy the quiet of being alone and I enjoy being in that comfortable place in my mind.  So you see, it is my interface with people that keeps my dementia at bay.  That and all the drugs I take.  But, I did read an article on the Lewy Body Dementia website that the Alzheimer's drugs, Namenda and Arercept, taken early in the disease, have a great effect for a longer period of time.  So, people and medicines keep me going.  More to come.

Sunday, June 3, 2012

The LBD support group on the web.

My wonderful wife built my blogs for me and encouraged me to write about my experiences with Lewy Body Dementia and my Nay career.  My neurologist agreed that this was a good exercise for my brain.  I enjoy writing about what is going on in my brain.
I have also gained a large support group from other bloggers in the LBD community.  I read many of their posts and have learned that many of you are going through many of the things that I am going through.  I recently read a blog about the feelings of a husband with LBD as written from the wife/care giver's view point.  This blog is such a strength and help to me.  Recently, I read about her husbands feeling and fear of leaving or her getting rid of him.  As I read that blog, I thought, I have had those feelings too.  Not directly, my wife wanting to get rid of me.  But more the idea of being such a burden that I can't see anyone wanting to be around me.  Now, let me first say, logically, I know my wife will never feel that way.  But, in the hollows of my dementia, when I am not totally connected to reality, especially at night, I get lost in my own insecurities.   I really belie e that is what many of us experiencing the uncertainties of dementia go through.  We are insecure!  The way of life that we lived, built, dreamed of is now slipping from our fingers and we can't stop it!!

Like I wrote earlier about feeling lost in the gun store, a place I normally feel completely at home in, I am insecure in many situations in my life.  Driving is becoming a challenge.  I can't drive as long as I used to.  And as a man, I think it is my job to do the driving.  The reality is, I really need to let that go.

There are other issues too.  Again, I have written about my fear of dealing with the everyday budget issues.  When my wife starts to talk budget, I have a fight of flight reaction!  That's not normal for me, but it is what it is.  The fact is, I am so insecure in my own abilities that I retreat into my own  mental happy place.   When I can sleep, sleep is my friend.

So, while I am logically sure my world will remain as close to the same as it can, I am constantly reminded of the changes, my own mental and physical changes, and where all this will lead me and my wife.   This is a difficult topic for me to open up about.  Yet, that is what this blog is supposed to be about.  

So, thanks to my other blog support group members.  You are a great help.  And thanks to my wife and family.  I know you are going through even more grief and worry than I am.   But, with GOD's help, we will get through this.


Yesterday was a good day and a rough day all balled up into one.  We all went to the shooting range in Santa Rosa County.  It is a good facility that continues to improve.  We went with the entire extended family.  Of course, there were a few "New Shooters" that needed and wanted my instruction in safe fire arms operation.  They all did very well and I truly enjoyed the day.  It is good for me to get out and do things that I truly love and shooting is one of them.

After the shooting event, I decided I wanted to go to a local gun store that is relatively close to the range.  My wonderful wife agreed and we followed our GPS to the store.  When I got to the store, I was completely lost and did not know what I was there for.   We went into the store and I walked around, looked at some guns and accessories, but I really did not know what I was doing.  I had a disconnected conversation with one of the store employees.  Now this store has very friendly employees and they love to talk guns.  Well, I could not even remember the make of the new shotgun I bought!  I was truly lost and disconnected.

When we got home, my wife and I discussed the days events.  She told me she also noticed my memory issues.  No kidding, a blind man on a galloping horse could have seen that!  The store employee knew something was wrong.  But my wife brought out the highs and lows of the day in contrast.  She told me and I agreed, that I was on a high during the three hours at the range.  I was instructing very clearly and I was on point following safety rules.  I even did some marksmanship training that got the shooters on target.  Then, I ate an energy bar and I aspirated some of it.  I spent quite a few minutes coughing, choking, and having problems breathing.  We left right after that.  And that lead to the low of the gun store.  I spent the remainder of the day resting and recuperating.

The point is,  When I experience a good period of time that expends a lot of energy, I almost always drop off mentally to some very low lows.  Sine my wife understands that, she expects this to happen and she is ready for it. I forget it is the new norm and it upsets me.