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Executive function...where did it go?


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#1 New normal

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Posted 11 April 2014 - 05:40 PM

It's tax time...just days to go...and I CANNOT finish the tax prep necessary to get the info to my accountant. I am sure I am not alone...there are a LOT of people who file for extensions.

However, I have a Masters degree in global economics, been a business owner, and an executive assistant to state political leaders....my inability to meet deadlines is uncharacteristic....and also scary. I hate to think procrastination and a lack of discipline are my "new normal".

It wd be convenient for me to blame my lack of executive function on PD or it's accompanying rx.

I do not want to accept that thinking. Yet, I struggle ....and struggle....to fulfill my obligations when it comes to business, paperwork, and in some cases, even responding to phone calls.

What do you all think? Cd it just be depression? Is it part of the aging process to welcome the easy chair and forego the necessary requirements of daily responsibilities? I literally can feel a weight...a fog like feeling ...come over my thinking...I get very tired..numb like ... after an hour of office work or "thinking." I find it difficult to face even the simplest of tasks ... Or to interact with people.

At my last appt I asked my neuro if I cd do some cognitive testing to establish a baseline ...and to address what I feel is a rapid deterioration of my mental processes. He said I shd wait...that I do not appear to have any problems.."now if you told me you frequently get lost or you cannot perform your routine tasks..." My husband actually laughed..I DO get lost..I CAN'T perform routine tasks !! I cannot follow recipes , find conversations on TV are too fast...which I related to the dr. He seemed to think I have no problems.. "U seem very intelligent...u have no problems now." (Other than I cannot communicate my frustration to my doctor.)

Have you...or do you...experience any of these things since your diagnosis? Can any of you relate? Did you find as PD advanced you cd feel a palpable decline in your thinking? what is the timeline u experienced?....Have you delegated your usual responsibilities to others? Have you developed tricks and tips to help with your challenges? Uhhhh, can you make yourself open the mail? :) or as in my case, even pick up the mail from the mail box?

I wd like to hear from you.
Dx'd 6/13 @ 66. Symptoms 10 years prior.
carbidopa/l dopa 50/200 5x daily
Normal DaT scan '13, normal MRI, '13 Dx'd w/l dopa challenge in office by MDS
Second DaT scan, 10/14, normal.
Symptoms: tremors rt & lft side, rt leg drag whn tired, balance, cognitive/ speech issues, apathy
Live, laugh, and be happy.

#2 MrFritz

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Posted 11 April 2014 - 06:01 PM

Hi New,

 

One of my fellow "phantom" experimenters had a similar issue. It was related to his PD. If you want to hear more about it, send me a private.

 

Fred


70 year old married Caucasian male. PD symptoms first expressed approximately 1995. First dx'ed with PD 2012. Cause of PD believed to be exposure to TCE 1964-1968

 

                           MY LIST OF DAILY MEDICATIONS *

         1200mg  URSODIOL since 10/16/2013 to Halt PD's Progression [ It's still working!!! ]

                        http://forum.parkins...for-pd/?p=78570

               1mg  Azilect because it may slow down PD's Progression [ Doesn't seem to work for me ]

6 tabs 25/100  Sinemet to control PD's tremors

           400mg  Ibuprofen to relieve Back Ache, Nocturia and minimize RBD [ Don't know why, but it works ]

           100mg  Losartan for High Blood Pressure

              5 mg  Amlodipine for High Blood Pressure
         1000mg  Vitamin D3 because my wife thinks I should take it

*  All medication are taken after meals, not by the clock, without experiencing any "downtime."

 

 

 


#3 Ken_S

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Posted 11 April 2014 - 06:54 PM

New normal:

 

Doing my best Bill Clinton impersonation “I Feel Your Pain”

I don’t think its age, depression or necessarily a symptom of PD. I think it’s the long term accumulation of just not feeling well, day after day after day. I think of it as the symptom of chronic crappy. My workday consists of a constant state of either tremor or dyskinesia punctuated by an alarm every 1 ½ hours reminding me to take my drugs—or it will get worse. Everything from talking on the phone to writing a memo is 10 times more difficult than it should be and that takes a lot out of me. I remember during my Navy cold weather training the instructor telling us “Doing something in the cold takes three times longer than it would in warm weather so plan accordingly” Fast forward to today and replace “In the cold” with “With Parkinson’s” and replace “Three times longer” with “Ten times longer” and you have my 2014 reality.  I’ve actually quit my job three times based on my lack of productivity; each time it only resulted with my Boss telling me that he is happy with my performance and talking me into sticking with it. I’ve resorted to a covert process of simplifying some of the things I do—so almost anybody could do them—and overtly training people who are willing to learn how to do the more complicated or difficult tasks. I figure I can’t go wrong: If I’m still there a year from now the company will be better off due to all the cross training; on the other hand, if my Boss finds out: what’s he gunna do, fire me? It’s a win win situation and I get the satisfaction of knowing that my efforts will be paying off long after I’m gone. I’ve kind of adopted the attitude of doing what I can during the day—concerning work load—and focusing on my legacy.  So, after all those words, I think I just said improvise, adapt and overcome.

 

So far, it’s working for me.

 

Good luck

  Ken


Improvise, Adapt and Overcome


#4 Annikin

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Posted 11 April 2014 - 07:03 PM

I am having the same issue finishing my dissertation- I use to be able to push myself much harder until I finished. However, I  did do my taxes well in advance. Maybe this change affects things that cause us stress but not everything that has a deadline? 



#5 Trying hard

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Posted 11 April 2014 - 09:07 PM

My DH had apathy, fatigue, and struggled with the slowness of thought, he had to change the way he did things, adapting at each stage. We learned very early that stress was something that had to be avoided at all costs as it seemed to make everything worse.  I would tell your neuro again that you want to be tested, need to be tested, in the long run it will be much better if you do have it done now. 

Good luck!



#6 RNwithPD

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Posted 12 April 2014 - 04:45 PM

I have these problems as well.  I think, as others have stated, that it is a combination of apathy, depression, and "chronic crappy."  (I love that!)  I was having significant cognitive problems leading into the end of last year, but after being off of work for several weeks for surgery due to a compressed nerve I noticed that my fatigue lessened and the cognitive issues got much better.  During that time period I had cognitive testing which showed no deficits. But about two weeks after returning to work the fatigue came back in full force and I'm once again starting to slowly deteriorate cognitively.  

 

Kevin


Currently age 42.  Symptomatic at age 36.  Diagnosed at age 39.  Sinemet  25/100 mg 2-tabs every 4 hrs (800-1000mg levodopa daily); carbidopa/levodopa 50/200 mg CR at bedtime; entacapone 200 mg every 4 hrs; Amantadine 100 mg 3 times/dayy; gabapentin 200 mg 2 times/day; gabapentin 400 mg at bedtime; Klonopin 0.5 mg at bedtime; Seroquel 50 mg at bedtime; Effexor 75 mg daily; Vit-D3 5000 IU daily;Vit-B Complex daily; Melatonin 3 mg at bedtime


#7 Gardener

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Posted 12 April 2014 - 05:47 PM

Hello New Normal,

 

I have done my taxes every year (similar background as you described) but was unable to get it done this year and filed for an extension yesterday.  All of my financial duties have suffered because of apathy and slowness.  I can add the same set of figures three times and get three different answers.  I've never missed a bill payment or overdrawn my checking acct. until last year.  It's a struggle to keep up but I'm trying - it just takes much more time.  Best of luck and know that there is nothing unusual about your circumstances.  Gardener


Gardener, female, 59, diagnosed at 55, 600 mg of Sinemet daily, 1 mg Azilect


#8 New normal

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Posted 20 April 2014 - 12:53 PM

Thanks to everyone who replied. It has taken me a bit to process all u hv said....and I have bn digesting the thought that my cognitive decline is real and that a pro active plan is in order.

Ken: "chronic crappy" is now part of my language as it so well describes my symptoms. Your post showed me you truly relate to what I was saying. "Improvise, adapt, and conquer " is now my mantra. Doing simple things is no longer simple...but not impossible. I have to lower the bar, but I do not need to throw the bar away. Thanx for sharing about your work...in our language you were sharing your grief of a time past ..and I can relate. Yet, you motivated me by sharing your method of coping...to be able to continue your work, albeit in a different fashion....and that is part of your legacy. My legacy is more important to me than anything...and you showed how one can walk thru the valley of crappiness with dignity and retention of your spirit...you are a hero.

Anniken: the very fact you have a dissertation project says so much about you...it requires such a degree of discipline to stay the course, when doing a dissertation...SELF discipline...amid the doom of chronic crappiness...wow, you among the others, pursuing the norm regardless of the present...you, too, are a hero.

Trying hard: YOU are a hero with a cape! To provide the care, support, and love alongside someone's journey thru this chronic crappiness is a marvel...YOU are what the scriptures talk about...you are service in the raw...with little reward, if any, you think outside your self...give your energy to others...even taking the time to comment in this thread, when your time is precious. Thank you for exemplifying all what we shd strive for..some of us talk the talk...people like you walk the walk..I am humbled to know you and the other care givers here in the forum... Thanx for yr post.

And gardener...we are very parallel ..I have seen your posts and your symptoms are much like what I experience.We all doubt our own analysis...especially us newbies...so it is valuable for us to hear the symptoms of others to determine their relevance to PD. It helps also to know what is ahead around the corner from you folks a bit further on the path...I appreciate your candor.

Yep, I am learning a lot about this condition...and seem to be deteriorating pretty quickly...the cognitive being the most scary. But, taxes? I now have until October...and in the whole scheme of things, are they worth the stress they have caused? You folks all have helped crystallize the reality facing me...improvise, adapt, and conquer.....and preserve my legacy.

Thanks everyone...
Dx'd 6/13 @ 66. Symptoms 10 years prior.
carbidopa/l dopa 50/200 5x daily
Normal DaT scan '13, normal MRI, '13 Dx'd w/l dopa challenge in office by MDS
Second DaT scan, 10/14, normal.
Symptoms: tremors rt & lft side, rt leg drag whn tired, balance, cognitive/ speech issues, apathy
Live, laugh, and be happy.

#9 Annikin

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Posted 20 April 2014 - 06:36 PM

Thanks New Normal- I was having a particularly low week and your kind words of encouragement made me feel a bit better. Funny, your ID- New normal- are kind of the words that run through my head each day as I adjust to all that is changing, my new normal. I really miss my old normal though.

 

Just a thought- do you do your taxes by hand or have you tried something like Turbo Tax? I found it easy ( and I do the long form for deductions) and fast and a friend of min who is a CPA said most accountants use some computer program anyway. Plsu it is quaranteed and does not cost too much.


Edited by Annikin, 20 April 2014 - 06:40 PM.


#10 New normal

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Posted 20 April 2014 - 07:28 PM

Anniken,

"Taxes" is in a way just a metaphor for ALL the things I leave undone or cannot face in a timely manner. But, specifically, I am just trying to collate the tax info necessary to take to my accountant . In this last year, there were two deaths of family members for whom I was their power of attorney, I became an executor to two estates, I started a business, I have numerous deductions and depreciation schedules, I have inheritance, etc etc etc. I have seven different checking accounts....sigh....

At one time, this would not have been a challenge. I am accustomed to multi tasking, having several "irons in the fire" heating at once. I have been the "responsible" one to whom everyone turns when in trouble...and now, I cannot face paper. I have piles of paper on the floor in my office with info that was not entered into the computer, so organizing it all must be done manually...I have let a monster reside under my roof...and it is growing faster every day.

It is one thing to battle against my muscles tightening to the point of losing mobility in my arms...selling my motorcycle for lack of balance...but this cognitive thing has really been hard to manage. I can exercise to combat the rigidity....I can adopt new recreation outlets...but my very thinking???? How can my thinking change my thinking?????

Back to the reality of taxes..haha..IF I can get it finished a little at a time...then, I will never get into this situation again for I have learned I no longer have the ability to "cram" for any exam nor whip it together at the last minute. I really only have about two hours a day that is productive. My priority is exercise first, and second, being a companion to my husband...and whatever energy I have left I try to take care of what is necessary.

My new normal is one of limited focus, limited initiative, and extreme limited energy. SOOOOO, I am trying to adjust..but again, and I am not being flippant...how in the heck do I adjust my thinking when apathy and fatigue ...and pry depression.. take control?

That is why I appreciate the responses here..Ken , RN, Gardener are men and at the risk of sounding gender biased, I think it is harder for men to make this cognitive adjustment...not that they are less capable...the dynamics are just different...when I hear of their challenges and know THEY are succeeding in adapting and overcoming, it gives me hope...makes me want to stop whining and move on....

The PWP who are walking ahead on the path are very important to me and my journey...they are plugging along..and yet taking the time to give counsel to us newbies.

You and the others are good people...good people...who can still think of others and move out of a state of self absorption ...that is my goal. I want to be just like you guys when I grow up. :)

Thanks for posting. And, good luck on your dissertation. :)n(apologies for length)
Dx'd 6/13 @ 66. Symptoms 10 years prior.
carbidopa/l dopa 50/200 5x daily
Normal DaT scan '13, normal MRI, '13 Dx'd w/l dopa challenge in office by MDS
Second DaT scan, 10/14, normal.
Symptoms: tremors rt & lft side, rt leg drag whn tired, balance, cognitive/ speech issues, apathy
Live, laugh, and be happy.

#11 Trying hard

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Posted 20 April 2014 - 09:22 PM

New normal;

Hardly a hero with a cape, (just take my marriage vows very seriously)  but thank you for that, it was very sweet.  This is why you should get the testing done, because you may find out that it is not cognitive, that it's more the apathy, lack of motivation, etc.  Once the testing is done you have answers, then you move forward.  Take it a step at a time.  You said it best; adapt, improvise, and conquer. 

Hang in there.



#12 Annikin

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Posted 21 April 2014 - 07:32 PM

I hear you New Normal- the "paper in the wrong place monster" is living under my roof. I use to be so organized and had so much more energy.



#13 New normal

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Posted 22 April 2014 - 12:54 AM

Ditto, Annikin, ditto.

Yet, both of us, while we grieve for the past...at least we have had that experience..we know what we have done, now we will see what we can do when the rules change. I guess anyone can continue to accomplish with the winds at their back, but, Anniken, the winds have changed...we now are facing the head winds...and how we set our sail will determine our legacy.

We both have been blessed with success based on talents given to us...the cards dealt in the beginning of our lives....whether it be our Innate intelligence, life experience, unique mentoring...things not always provided to others.....and I know it was not easy for me, and doubt if it was easy for you...but we have proven our metal in one life...and we are now challenged to prove ourselves again in a new environment..a "new normal" every day...variables that are not predictable....a crap shoot...

Are we different from anyone else? No one is immune to tribulation...this is ours to face...and somehow, Anniken, as little as I have known you, I feel you are up to the task....actually, a part of me believes all PWP are chosen to face this trial for a distinct purpose...which will be revealed to each of us at some point.

I wish you well with your studies, and hope you continue to work toward your goals. PD will accompany you in your journey, but instead of distracting you, it just may prove to heighten your determination. I have always told my children that the process is more important than the product..HOW we accomplish speaks more loudly than WHAT we accomplish...

Thank you for posting...I feel a connection with you.....
Dx'd 6/13 @ 66. Symptoms 10 years prior.
carbidopa/l dopa 50/200 5x daily
Normal DaT scan '13, normal MRI, '13 Dx'd w/l dopa challenge in office by MDS
Second DaT scan, 10/14, normal.
Symptoms: tremors rt & lft side, rt leg drag whn tired, balance, cognitive/ speech issues, apathy
Live, laugh, and be happy.

#14 marycarolyn

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Posted 22 April 2014 - 12:17 PM

New Normal…. I have similar experiences starting, and I do not like it. I am in the process of trying to figure out what is going on with me (I have not been diagnosed), however my primary Dr. wants me to have more thorough neuro work up than I did over a year ago, including cognitive testing (yikes!). My routine tasks are getting more difficult and more frustrating and tiring to manage; I'm making mistakes that I am not aware of until later, and that frightens me. I am a bit nervous about the cognitive testing, but I guess it gives a baseline where I am at this point in time, and some more info to send along to the MDS when I see her. Not sure I really want to know, but at the same time, I know something already, or am I making it all up? I

don't feel depressed. Just not "right".. as you say… what I used to feel, is different now. A "new normal", although I don't know what it is yet.



#15 New normal

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Posted 22 April 2014 - 05:17 PM

Marycarolyn:

Awwww, that state of limbo when you know something is wrong, yet cannot define it, and doctors cannot diagnose it. Most people with neuro diagnoses have been there. For decades, I had "atypical" symptoms. Always perceived as over stress by physicians. Then. probable MS. Finally, a conclusive dx by a MDS of PD.

I think the limbo period is harder than the knowing. Limbo means a question of your credibility . You do not feel others believe you, and soon you cannot rely on yourself. Self doubt enters, and soon reality no longer has a name.

When I was finally diagnosed, there was a certain relief. Yet with a PD dx, comes such a broad spectrum of symptoms...treatment...theories...it is overwhelming. Finally, I have come to terms with it.

I hope the same for you. I wish you peace within you, and confidence in your own assessment. The truth will eventually come. So be patient. In the whole scheme of things, had I known a definite diagnosis a decade ago, I doubt if things would have been much different. Perhaps, worse in some ways.

I really have accepted that this journey will be what it is...the stress of wanting to control any part of it harms me more than the disease itself. Often we become so self absorbed that our symptoms that could be from a normal aging process seem to overtake us.

My intent is not to diminish your anxiety, but to instead make you aware that your insecurities and fear are real...we all have felt them....try to not let them own you. Try hard to deal only with the "knowns" and let the "unknowns" evolve on their own. Focus on the process...and dismiss the images of the outcomes...for the outcomes in any of these processes are totally different and unique to each individual Believe in yourself...and most of all, believe in your creator.

Good luck to you. Please continue to post and let us know how you r doing.
Dx'd 6/13 @ 66. Symptoms 10 years prior.
carbidopa/l dopa 50/200 5x daily
Normal DaT scan '13, normal MRI, '13 Dx'd w/l dopa challenge in office by MDS
Second DaT scan, 10/14, normal.
Symptoms: tremors rt & lft side, rt leg drag whn tired, balance, cognitive/ speech issues, apathy
Live, laugh, and be happy.

#16 marycarolyn

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Posted 22 April 2014 - 08:10 PM

Marycarolyn:

Awwww, that state of limbo when you know something is wrong, yet cannot define it, and doctors cannot diagnose it. Most people with neuro diagnoses have been there. For decades, I had "atypical" symptoms. Always perceived as over stress by physicians. Then. probable MS. Finally, a conclusive dx by a MDS of PD.

I think the limbo period is harder than the knowing. Limbo means a question of your credibility . You do not feel others believe you, and soon you cannot rely on yourself. Self doubt enters, and soon reality no longer has a name.

When I was finally diagnosed, there was a certain relief. Yet with a PD dx, comes such a broad spectrum of symptoms...treatment...theories...it is overwhelming. Finally, I have come to terms with it.

I hope the same for you. I wish you peace within you, and confidence in your own assessment. The truth will eventually come. So be patient. In the whole scheme of things, had I known a definite diagnosis a decade ago, I doubt if things would have been much different. Perhaps, worse in some ways.

I really have accepted that this journey will be what it is...the stress of wanting to control any part of it harms me more than the disease itself. Often we become so self absorbed that our symptoms that could be from a normal aging process seem to overtake us.

My intent is not to diminish your anxiety, but to instead make you aware that your insecurities and fear are real...we all have felt them....try to not let them own you. Try hard to deal only with the "knowns" and let the "unknowns" evolve on their own. Focus on the process...and dismiss the images of the outcomes...for the outcomes in any of these processes are totally different and unique to each individual Believe in yourself...and most of all, believe in your creator.

Good luck to you. Please continue to post and let us know how you r doing.

Thank you New Normal. Those are all very thoughtful words and things to think about, and I will… And yes, what you said about being in limbo and credibility, and self doubt, those things cause me more anxiety than the unknowns. But I am actually more calm about it all, and do believe in myself (although I am not a believer in a creator)… I am a strong person, honest, and of high integrity, endure many things in my life; thanks again for your words and advise.



#17 Rogerstar1

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Posted 22 April 2014 - 09:04 PM

New normal wrote:   "...and most of all, believe in your creator".

 

You were doing great up to the next to last paragraph.   Prayers to a 'grand creator' - what a fraud.   



#18 Rogerstar1

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Posted 22 April 2014 - 09:17 PM

Consider this New normal:

 

 

Susan Jacoby writes:

The Myth of Redemptive Suffering

There are a great many real questions about the ethics of atheism. Foremost among them is, "If you don't believe in God or an afterlife, what is the meaning of suffering in this life?" I will always be pleased to answer that question, and my answer is that suffering has absolutely no positive meaning in an ethical sense. Since suffering, in nature and civilization, is an inevitable part of life, the manifold ways in which we respond certainly do have personal meaning for each of us and for those whose lives we touch. If a child has been brutalized by a parent and grows up to become a good parent, that is a moral triumph for the child--but it does not endow the original suffering with positive meaning or with any meaning. Good may emerge from evil, but evil and suffering are more likely to breed more evil and suffering. 
The theodicy problem is the rock upon which all monotheism founders. How can the existence of an omnipotent, loving God be reconciled with the horrors he allows to be inflicted on his creations? Since there can be no material justification for the wounds and deaths inflicted by the lash, the crematorium, or impersonal forces such as earthquakes, the only possible answer for the monotheist is that suffering is necessary to build character--that we would all be worse human beings if we never had to worry about being whipped, herded into concentration camps, or swallowed by a fissure in the earth's crust. Christianity, of course, is based on the concept of redemptive suffering exemplified by the death of Jesus on the cross. For if suffering has no meaning, God is either a monster or a myth. To this, the atheist replies that God is indeed a myth. To the redemptive rationale for suffering, the atheist says no. 
The distribution of suffering, like the distribution of good fortune, is unequal--and members of our species confront both in a wide variety of admirable and despicable ways. One man may inherit a million dollars and blow the money on gambling and drugs, while another may use his legacy to enrich not only his own life but the lives of others. The inheritance itself has no moral meaning. Nor does the cruelty or mercy of nature. Human-authored suffering has a moral meaning--an entirely negative one--attached to those who inflict it, but not to those who must bear it. 
When I was a cub reporter for The Washington Post in 1965, I was, like all cub reporters in those days, assigned to night duty on the obituary desk. The theologian Paul Tillich died just a half hour before the paper's first edition closed at 10 p.m., so it was his indifferent fate (definitely not an act of God) to have his life summed up by a 20-year-old on deadline. I used a quote from his 1952 book, The Courage To Be, in which Tillich cites courage as the ultimate in Christian meaning--"Not the courage of the soldier, but the courage of the man who feels all the riddles and all the meaninglessness of life and is nevertheless able to say 'yes' to life." It occurred to me at the time that this was an even better definition of an atheist's ethical approach, and that is one reason why Tillich has often been called a Christian existentialist philosopher.
Atheists have only their own, ongoing concept of decent behavior to get them through the hard times: Suffering need have no cosmic meaning for a decent person to know that the only proper moral response is to try to ease the pain. We have no promise of an afterlife in which all tears will be wiped from our eyes, no hope that when our consciousness ceases, we will be resurrected as beings who will never suffer again. Our only ethical injunction is to cause as little suffering as possible and to try to alleviate it when and where we find it. That is a huge task in itself. 
I am not suggesting that atheists are ethically superior to religious believers because our way through suffering is not eased by the hope that it all has a meaning, which will be revealed to us in the sweet by and by. Indeed, I think that facing up to the suffering that is a part of nature itself may be easier for an atheist because we do not have to reconcile the inconsistency between the evil before our eyes and faith in a loving god. A few years ago, I had dinner with a woman who had just attended a lecture of mine in Cambridge, Massachusetts. When her 12-year-old son died of leukemia, she joined a support group for parents who had lost their children to disease or violence, but she soon left because she was an atheist and so many of the other participants kept saying, "God must have a reason." Of course he must. Otherwise, why had their children died of cancer or been mowed down by a drunk driver? "For me," this grieving mother said, "the task was to reconcile myself to something for which there was no reason other than cells gone wild. I don't know how I could bear it if I thought that my son's death was part of a plan, because I would have to hate any god with such a 'plan'--and if I were consumed by hate, then I would know despair."
I recalled those words vividly a year later when my partner was stricken with Alzheimer's disease. What could be more meaningless than a neural catastrophe defined by the inexorable daily loss of all the competence and awareness and knowledge that you have acquired over a lifetime? 

In reviewing the professional literature about dementia for a new book I am writing, I found a secular version of religious attempts to find a meaning in suffering in the writings of British psychologist Thomas M. Kitwood. In Kitwood's view, dementia is not an unmitigated disaster because the rest of us can all learn something from those who are losing their minds. In Dementia Reconsidered: The Person Comes First, Kitwood writes of the demented, "Reason is taken off the pedestal that is has occupied so unjustifiably; and for so long; we reclaim our nature as sentient social beings. Thus from what might have seemed the most unlikely quarter, there may emerge a well-spring of energy and compassion." In other words, my late partner's Alzheimer's had value because it could teach him, me, and his relatives more about compassion and lure us away from that idol, reason. This is just another version of the Christian premise that not only our own suffering but the suffering of others has value because it makes us better people. Moreover, the notion that reason is opposed to compassion is neither compassionate nor reasonable, whether expressed in religious or secular ideology. I know what my beloved would say if he were alive today, "Thank you, but I'll keep my working brain and you can find your inner caretaker in some other way."
I genuinely do not understand how anyone can fail to be repelled by the idea that the natural horror of a disease like Alzheimer's, or any other horror, is mitigated by the fact that it can (sometimes, but by no means always) elicit noble demonstrations of caring from others. If I believed that, I would truly know despair. 


#19 Beau's Mom

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Posted 22 April 2014 - 11:29 PM

I had an epic fail in executive function today. I have a trust that pays for things that Medicaid won't pay for and that won't fit in my budget. I have to puree all my food and I had been borrowing my best friend's Vita-Mix for the past six months. It really got to be a pain because I don't drive and she kept having to bring it to me, then take it home again when her husband asked where it was. In March I bought one online. My sister runs the trust and she simply paid the entire bill. When I looked at it today, it had a charge for $528.95 from the J L Hubbard Coffee and Tea company.  Well, I bought a box of 100 Earl Grey tea bags online in March for around $25-$30, and I thought they accidentally overcharged me $500. I called CHASE and they put in a dispute for me.  My caregiver took me to my mother and dad's, then shopping and she said, "Remember you paid $500 for the blender?" So, when I got home, I called CHASE and they undid the disputed charge. The youngish sounding woman on the phone, who doesn't know I have PD, said, "It's OK, we all have those senior moments!" I hung up and thought, I won't be a senior until next year!!! It was a Parkie moment, not a senior moment!


Dianne

I am not a human being trying to have a spiritual experience; I am a spiritual being having a (sometimes difficult) human experience.

#20 New normal

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Posted 23 April 2014 - 05:17 AM

Beau's mom:

I can so relate to your "system failure"....I have forgotten to put eggs in potato salad..signed a purchase agreement for real estate transaction and then called the realtor a few days later asking when I was going to sign a purchase agreement...I guess I cd blame it on "senior moments" ..... Just flat out admit I am a little "dingy" at times...or bemoan the fact I am losing my "executive functioning".... It really doesn't matter in the long haul.....it is what it is.

When I was younger, it seemed I knew a lot of "stupid" people....I would marvel that they always seemed very happy...they just did not get as upset with the world as much as I...politics or world economics were not a concern to them...things not under their control were seldom their concern...philosophical debates were not their gig, but they sure enjoyed a good laugh at themselves whenever possible....as I remember it was not vital for them to be "right" , nor did they feel they had to convince others to believe the same way they believed...they just never started a conversation for the sole purpose of changing another person's belief system...those "stupid" people just kinda let everyone have their own life, let others cook their steak the way they wanted, and never judged those who preferred hot dogs...yeah, those "stupid" people kinda lived and let others live....I don't even think they wd call themselves tolerant of others....pry didn't know what the word meant, ya think?

As I look around now, I don't see any "stupid" people anymore...don't have any idea where they went...other than for every day I live, for every burden I have added to my back pack, for every tribulation that I have conquered, it seems fewer and fewer "stupid" people are out there.

The longer I live, I am learning that those "stupid" people I perceived as a youth, were truly the wisest of us all....it has been a great acknowledgement on my part to learn from them that THEY have the secret to this experience on earth...THEY know how to find peace in their hearts, THEY know how to find good in all things, to love all people, to judge none, nor to condemn none...yep, lots of them have no letters behind their names to show advanced degrees of learning...heck, most have no titles, nor job descriptions that would impress many...most have not held office...or even been leaders of countries....they are just DANG good people who have figured out why they are here at this time, who they are, and what their purpose is.

I am definitely not the sharpest knife in the drawer...I am definitely one pickle short of a jar full....I KNOW my light is not as bright as my neighbor's and is dimming more and more each day...but if ONLY I can become more and more like those "stupid" people I knew in my youth, THEN I know I am headed for success in my lifetime.

PD or not, my goal now is to become more like my Savior....no accolades do I need, no following of like minded people, no more advanced degrees...no more "executive functioning".... Heck, I am content to leave this life being known as one heck of a nice person who laughed too loud at times, who loved each person without judgment, accepted all people for who they choose to be....and tried to magnify the few little gifts given to me...that's all that really matters to me....well, heck-fire....guess I really am getting closer to being "stupid". :)
Dx'd 6/13 @ 66. Symptoms 10 years prior.
carbidopa/l dopa 50/200 5x daily
Normal DaT scan '13, normal MRI, '13 Dx'd w/l dopa challenge in office by MDS
Second DaT scan, 10/14, normal.
Symptoms: tremors rt & lft side, rt leg drag whn tired, balance, cognitive/ speech issues, apathy
Live, laugh, and be happy.




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