Thursday, June 22, 2017

Quality of life vs Length of Life

I have suffered for over seven weeks as I withdraw from Effexor.  That journey has been documented on this site and is well documented on the Internet with academic papers from MAYO Clinic.  The reason I decided to get off Effexor was some very negative side effects that made my life worse than life without the drug.  The truth is, we have no control over the length of our life.  God determined the length of our life before we were formed in our Mother's womb! (Psalm 139)  But, we can have an impact on the quality of our life.

How, diet, exercise, following our Doctor's advice, not smoking, not abusing alcohol or drugs, and paying attention to our bodies reaction to the drugs we take!  Then, openly communicating the issues we face with our families and Doctors.  Every drug we take, has side effects.  Some are more important than others, but al side effects impact our quality of life.

For instance, I had a total emotional detachment while on Effexor.  Not emotional response to anything at all.  No tears, nothing!  I was also became completely impotent.  Now, after almost eight weeks of withdrawal issues, both of these sided effects are gone.  I am happy!

I would rather live well, enjoying life as it is presented to me, than be a zombie.  Yes, I suffer from some depression and yes, the withdrawal has been tough.  But, I am better off now and I have some other drugs I may try to delete from my treatment regimen also.  Of course, we will have to bounce those decisions off of my medical team.

Also, today was my MRI to determine if the brain damage from dementia has increased.  The Neurologist also wanted to see if I  had a stroke.  I am anxiously awaiting the results.

But now, I am going to relax and rest.  More later.

Tuesday, June 20, 2017

Appology

Recently, I have been a hot mess of negative emotions and anger.  Yes, there are reasons related to the progression of my LBD journey and the issues of withdrawal from Effexor.  That being said, there is no reason for me being as negative and mean as I have been on this blog and in my everyday life.  For this, I am sorry!!

Truthfully, I have just forgotten that Jesus walks with me and I am able to deal with anything in my life as long as I lean on Jesus!  I am human, and I just lost track of where I should be.  SO, I sincerely apologize to those of you who read this blog, the wonderful folks here at Azalea Trace, my Family, Friends, Shipmates and the poor strangers that have seen such a negative person.

I will say in my weak defense that this is a difficult journey that has increased in difficulty recently.  But, that truly is no excuse.  I trust the King of Kings and the Lord of Lords!  There is no other in Heaven or on Earth that I need to overcome anything in my life.

Jesus got my by the neck tonight and shook me!!    I am back on track, thanks to Jesus now, so I again plead for your forgiveness and I thank God for getting me back on track.  No matter what happens, I am Heaven bound!!  Praise God!!

The impact of my LBD on my wife

I am not an impartial observer when it comes to my Wife.  I love her with all my heart and I detest anything that causes her stress, emotional distress, or depression.   We have gone through numerous Navy Deployments, training times, yard periods out of home port, tech assist trips, and other times of forced separation over our almost 45 years of marriage.  She has had to deal with a number of surgeries including my colon surgery.  But, I have seen my LBD journey cause her more worry, depression, and distress than any other issue we have faced together.  Any other challenge we had to face, has an end date!  Each challenge always had a "Get Well" ending.  Even the removal of half of my colon because of a tumor had a prognosis of good health.  But, LBD only has a future of "Bad to Worse"!   And, we are now getting into the "Worse" stages of this disease.

I can see the stress in her face, in how she reacts to life, and how she tried to keep herself busy.  I know her coping skills and trust me, she is using everyone she has, all the time!   There is no help.  No support group and no one she chooses to confide in.  Instead, my Wife stoically suffers today and our future, on her own.   It is just he way.

Me, I am oblivious to the future.  LBD is taking away my ability to see any thing in the future.   Tomorrow is too far away for me to see or think of.   Tomorrow will just have to take care of itself.  I am too busy trying to deal with right now.

Just the same, the thing that pains me the most is how my LBD upsets the Lady I love.

Monday, June 19, 2017

Thanks for the advice. NO, I WILL NOT go back on Effexor

I have thought long and hard, or at least as long and hard as LBD will permit, about going back on Effexor.  Yes, I agree, stopping Effexor may have accelerated my LBD issues.   But that is a small price to pay for the misery Effexor caused me.   The side effects of Effexor are insidious.   But, after a long time on the drug, I realize I was an emotional zombie in every way!

No, I would rather live alone in a locked room than go back on Effexor.   And think about it;  I never heard anyone tell a Heroin addict to go back on Heroin!  And when I was a drunk, no one ever told me that I should not stop drinking.  Am I having issues.  Yes.  But some of these issues are being caused by self-centered, egotistical, morons that believe they are the only people with the ability to reason.

No thank you.  I will NEVER take an anti depressant again.   The rest of the world will just have to learn to deal with me.  Or, they can leave me alone.  

Sunday, June 18, 2017

Let me open up about something

I am totally unhappy living in Pensacola and at the CCRC I live in.   Yes, Azalea Trace is a wonderful, luxurious, high class facility.  Yes, I have family I love here in Pensacola.   But, I am not in an environment that meets my socialization needs.  Neither Pensacola or the CCRC I live in has people that I share anything in common with!  It is not their fault and I try not to think the are being jerks on purpose.  They are rich, college educated, silver spoon people that have never done anything close to what I have done.  They did not grow up poor.  They are not blue collar.   I clearly am!

My journey with LBD has caused me, in increasing amounts and occurrences, to talk, think, and even hallucinate about my Navy times.   My mind is comfortable with the 40 years of my Navy life.   Maybe even obsessed!  I have no one to discuss Navy times with.  No one that was a Ship owner, a Division Chief, who ever had a sea detail station, chipped paint, world 24 hours a day until they dropped to pass a material inspection, repair a gun mount, or shoot Naval Gun Fire Support to keep the Marines save in Beirut or other combat situations.  No one knows what a "Hot Gun, Foul Bore" is or how dangerous that is!!  Nobody cares that my friend GMG 1 Red Mills died in a gun mount explosion off the coast of Vietnam!  No one cares about me, what I did, or who I am.

But all of those thoughts, experienced, fantasies, hallucinations, and events are all that I think of!!  

The problem is, what do I do?  Where do I go?  Is this the beginning of the end?   Do I push to move to Assisted or Memory Care now?  And WHY is any of this on my mind or even my problem?  Shouldn't these issues be someone else's responsibility?   If so, who do I turn too?

Look, I do not want to sound too dramatic, or even crazy, but I need help and I do not see any help on the horizon.  It seems irresponsible to leave me to make my own decisions when I think I am still in the Navy more times than not!    But the truth is, I do not live or operate in the present.  Ask anyone who real knows me.  Like Bo, John, or Jim, all men I play billiards with.  Or Rick, a retired Psychologist who's dog I walk sometimes.

Trust me, I am opening up more than ever before because, for the first time in a very long time, I am frightened!   This week, I intend to find a direction for the future.  If I can.

Two other points;  One, this week I threw in the towel on ever living in the Armed Forces Retirement Home in Gulfport Mississippi  (The Navy Home).  We are here at Azalea.  Linda cannot live in The Navy Home.  I MUST provide for her future.  So, that dream is dead.

Second;  I have not resigned myself to the reality that here is where I will remain until I die.  I will never live or have communion with Surface Navy Enlisted Men again.  Who I was has died.  But, who am I now.  Do I even exist anymore?  I believe I am an empty shell of my former self, with a video of my previous self playing 24/7/365 for anyone to see, if they were interested.  Which they are not.

LBD has taken over me.  Replace me with someone I do not know.  The old me lives in thoughts and sea stories, told to an empty room.

Last though for this post.  I do not even know who I CAN turn too.   I feel alone, lost, and disconnected from life.  Yes, I know my wife, son, grandsons, Allie, my middle Grandson's wife, my Best Friend Jerry and his wife, all care about me.   But, they do not see what I am going through.  They see what the wish I was or what I once was.  Maybe I hide my issues well.  I hate to disappoint them.  They love me and I love them.  But, I need help with the direction of my future.

There, over the last couple of hours,and through at least three editions,  I have told you in detail where I am.  Honestly, openly, and truthfully.   It hurts me to be open like this.  I have tears in my eyes as I am admitting my weakness, my fear, my inability to run my life, my frailty.   I am ashamed of the power LBD has over me.  But, it it what it is.  Lewy Body Dementia.

And "I still have miles to go before I sleep."





The frustration caused by LBD

I am sorry, but I do write plenty about the frustration I deal with in my LBD journey.  Things that should not bother me, DO!  Yes, there are drugs that can help with the.  I know because I am in the sixth week of sheer torture trying to get off of those types of drugs.

Why do I write about these issues?  Because person frustration, anger, animosity, and depression are all part of the LBD journey.  And maybe, just maybe, someone who is related to someone on a LBD journey will better understand their emotional baggage if they read what I am going through.  I have been blessed with an ability to express my emotions and I see that as a strong suit.

Just the same, I realize that has been a common thread for my writing lately.  But, I am where I am and it is what it it!  I just pray it helps others to understand the emotional journey LBD and all other Dementia's cause.  More later.

Wednesday, June 14, 2017

Improving!! One step at a time

Yes, it is 12:30 here in Pensacola.  I took an nap tonight and then played pool.   When I went to sleep at 3 PM, I felt the effects of the Effexor withdrawal.  Extremely cold hands and feet. headache, body pains, electric zapping in my head, and a pressurized head.  I woke up at 5:15 and it took me a while to get fully awake.  I went to play pool and when I cam home at 8 PM, I was starting to feel better.  We had some scrambled eggs and toast at about 9 PM and that really picked me up.

More and more, I feel a little better everyday.  It seems I have turned the corner on this Effexor withdrawal.  Yes, I sill have times everyday when I feel terrible.  But even the level of terrible is getting less.   But, I am having increasing times of feeling better, maybe even good.

I have written before that I read a paper on the Internet from MAYO Clinic that stated  the withdrawal from Effexor was worse than the withdrawal from Cocaine or Heroin!  I never used any illegal drugs.  But I did drink gallons of Bourbon and Beer and I can tell you I never felt this bad.  But, it seems the "hangover" is subsiding.   I remember times when I thought I was going to die.  That was replaced by the feeling that I was NOT going to die!!  Now I think I am going to live.


Tuesday, June 13, 2017

Sorting old photographs

My withdrawal illness has brought about a burst of energy for my Wife to organize and sort decades of family photos.  Why, I am not sure since this has been on her list for a long time.  But, now, it seems to be the number one issue for her summer.  It may offer her an escape from my issues or it may be exactly what it is, an honest desire to get those photos identified and sorted.   Just the same, it keeps her busy and detached from my issues.  I believe that is good!

I have been doing some in-depth research about high blood pressure in LBD patients and autonomic dysfunction.  I cannot fine any connection between SSNRI withdrawal and high BP.   I have found some MAYO Clinic articles about Serotonin and autonomic dysfunction.  But, that was related to an increase in SSNRI drugs dosage not a decrease!!!   My next chase has been to see if SSNRI drugs help the autonomic portion of the brain control BP since my BP spiked after the Effexor drawdown.

But, the bottom line is, as I have stated before, I am a "lab rat".  Medical science has no earthly idea how any of the drugs prescribed for me have impacted me!!   Or, how the withdrawal will impact me in the future!

The truth is, my BP is somewhat better, but not back to normal and I am concerned it will never return to my 120/68 readings that I had before Effexor and the Effexor withdrawal.   Heck, I may not even live through this!  MAYO findings do connect autonomic dysfunction as it related to BP as an indicator of early death due to LBD.   We will see if my experiences track with MAYO's research.

Monday, June 12, 2017

You make me cry!!

We are approaching 350,000 views on this Blog!  It amazes me that you, the readers of my Blog, have found value in the things I have written about my journey with Lewy Body Dementia.   I knew from the beginning I was a "Lab Rat" and that my doctors were going to "Try" different things on me and do numerous tests to see what happened.  I have honestly, truthfully, and openly written about the effects of LBD on me and my family.   It has been an interesting and difficult journey.  But, it has been worthwhile because of those of you who read this Blog and reply to me about your journey or the journey of your loved one.

We are in this together and we can help each other through the trials and troubles of LBD.   I continue to write, even though it is difficult sometimes, because of you!!  Thanks!!

Sunday, June 11, 2017

Lost interest in things that used to interest me

One of our LBD family sent me a comment on loosing interest in things he used to love to do.  Now, he, like me, has lost interest in those activities.  It is somewhat unnerving in that things that once consumed our time, money, and our attention, are now little or no interest to us.   I loved shooting.  I was a big IDPA shooter and liked anything related to Defensive Pistol Shooting.   I was also active in the Friends of the NRA and Navy events.  I loved to cook out on the grill and have medium size groups over to enjoy time together.  Telling sea stories, discussing shooting disciplines, comparing trucks, all kept me involved.   Now, those things do not hold my interest.

Actually, few things hold my interest.  I do research LBD issues and Dementia issues in general including new trends in Dementia care.   But, that is about it.  I do not read, socialize, or play any games with the exception of 8-Ball once in a while.  Instead, I like solitude, quiet, and privacy.

I know other Dementia patients that have the same outlook, so while it is an issue we have to deal with, it is not something we should be concerned about.  Being introverted seems to be normal for those of us with Dementia in general.

On the other hand being alone all the time is not good for us.   We started a Dementia Support Group here at Azalea Trace that gives those of us with Dementia a weekly time to compare notes!!  I recommend all of us find a social out reach that meets our needs, based on where we are on our Dementia journey.

Thanks for the comments and inspiration!!

Saturday, June 10, 2017

New, old emotions

One of the reasons I wanted off of Effexor was that I had no emotional outlet!  I could not cry!!  I was like a zombie!   Well, I have been completely off Effexor for two weeks and in the entire drawdown for 5 weeks.  And boy do I have emotions now.  I can cry at the drop of a hat!  And while I am glad to have some emotional release back, I hope it becomes more controllable in the near future.

Friday, June 9, 2017

Dizzy, High BP, and some left side of my face and body feelings?

I have discussed many of the issues I have suffered during my Effexor withdrawal.   I also talked about my hands being very cold.  Today we rode the community bus to the Commissary and when we returned, I was very dizzy and I was cold and sweaty at the same time.   The left side of my face felt thick and a little numb.  We took a 5 hour nap after we got home and I woke up feeling better.  But, during the nap, it came into my mind;  When do I feel bad enough to push the HELP button?   The thought of going to the Emergency Room late in the evening does not appeal to me.  Needless to say, I DID NOT push the HELP button.  And I do feel pretty good after eating dinner.  My hands are warmer, I am not dizzy, and the strange feelings on the left side of my face and body have dissipated for the most part.   Just the same, I will watch my progress through the night.

Just the same, I am improving as the withdrawal issues subside.  Tomorrow is the end of the second week without and Effexor after a three week draw down.  This has been very difficult on me and while I am sure getting off Effexor is right for me, I have have asked myself WHY I ever started taking Effexor and why in the world the FDA permits this drug to be sold!!

I have been told by neurologists that I am a "Lab Rat".   I have been prescribed drugs where the Doctor said;  We will see what this does.  And some times, we stopped the drug quickly because of the side effects.  Other drugs required numerous increases in dosage that brought on the side effects slowly and in an invidious manner.  Now, after the end of Effexor, I will be on drugs I know help me with limited, manageable side effects.  Hopefully, if I live through this Effexor withdrawal syndrome, I will be on a staid course.  We will see.

Wednesday, June 7, 2017

Autonomic Dysfunction after Effexor

As you know, I went off Effexor in a Neurologist controlled withdrawal over 5 weeks ago.   The side effects of the withdrawal have been difficult at best.  The Brain Zapping, ear ringing, pressurized head, are all issues to be reckoned with.  But, there are some I am dealing with  I did not expect.  For instance, my Blood Pressure has gone up exponentially!!  Before I went off Effexor, my BP ran 120/68.  Now, it spikes at 162/110 and does not go lower that 140/80.  My cholesterol is 160 with a high "Good" HDL level and low bad cholesterol levels.  So, I do not believe that is the cause.  Instead, I believe it is a result of the increased Autonomic Dysfunction issues I have previously been DX with.

Another issue is the fact that Effexor med it so I had no emotional release.   Now, I have emotional reactions to any and every event.  And those emotions may be hyper elevated.  This is something I need to watch.

The Neurologist ordered some blood work to check for a stroke and had set up an MRI for the end of June, to check on the progression of my LBD and to check for strokes.   We will see what we will see.

One other topic;  I have done some research on the Internet about SSRI drugs.  Cleveland Clinic, Mayo Clinic, and others medical brain trusts have nothing but bad things to say about the side effects of SSRI drugs.  Yes, they help with depression and some people really need them.  I venture to say SSRI's give these folks better lives.  But, it was also evident to me that the SSRI class of drugs was over prescribed.  And since, Mayo now says getting off an SSRI is worse than the withdrawal from Cocaine and Heroine!!   In my case, I believe I was prescribes Effexor in effort or at least, had my prescription increased in error.    In any case, I am now dealing with the consequences of this drug and those issues may kill me!!  Oh well, I always knew I was a lab rat.

Sunday, June 4, 2017

Effexor withdrawal Update

Today makes one week since I have been TOTALLY OFF Effexor.  I am improving and the withdrawal symptoms are decreasing.  I still have ringing in my ears but it is not as loud as it was.  I can actually hear my Wife speak.  I still am experiencing the "Electric Zapping" at night.  But again, it is not as intense as it was even a week ago. I am still grouchy, especially at night.  And the loud screaming, asinine commercials on Television drive me to distraction!  Why they believe screaming at me will cause me to spend money, is lost on me.    I also still have issues with my social filters.  If  am aggravated by something I hate, everyone in a 10 square mile radius will know it!!

Tomorrow I have an appointment with my Psychologist,  That will be interesting!!  I bet he learns something about Effexor withdrawal!

The MRI is scheduled for 21 June.  Nothing happens fast in East Lower Alabama!

While I know I am suffering from agitation, some depression, and anger,  I still know getting off Effexor is the right decision!!

Thursday, June 1, 2017

Effexor withdrawal and my most recent visit to the Neurologist

Since I began the draw down of Effexor I have had numerous issues that are well documented on the Internet.    Electric Zaps in my brain, loud ringing in my ears, and head pressure have been the most prevalent issues and all of these are subsiding.  However, my Blood Pressure has gone way up.  162/102 was the highest recorded readings and it has not gone down much.  My Neurologist got me in quickly and my BP was still high, around 150/94.   A month ago it was 118/68 in my GP's office.  She believes it is related to the Effexor draw down.

She did a thorough exam and showed concern over my stability issues that have been progressing even before we decided to get off of Effexor.   She decided to order another MRI, to see if I may have suffered a small Stroke and to check on the Black spots and White spots in my previous MRI's.

I worked with a fellow in the Navy that used to say; "I don't know what's happening, but it is happening fast!"  He may have been right, related to my LBD journey.   So, next week, I will have another MRI and then I will await the results.  I am curious about the Black and White spots.  We will see what we will see.  More later.