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cbgd skip to main skip to sidebar corticobasal ganglionic degeneration operative word degeneration a story told as it happens during the travel down the narrowing road of a debilitating disease thursday february 7 2013 final post this will be my final blog post i ve spent the last few years trying to tie up loose ends and for the most part have been successful i had envisioned ending this blog on a grander note but like many things in my life it just didn t work out this blog has given me the opportunity to voice things i could not speak through it i have met people who have shared my illness understood the pain and encouraged me for that i am thankful my illness has worn me down physically i naively thought i could mentally tough it out but i underestimated the toll that incessant pain can take on the mind so i must end this blog with a whimper the good news is another loose end is forever bound posted by corticowhat at 3 26 pm 24 comments wednesday december 19 2012 threshold of mindlessness with the exception of my dog anxiously watching me through my office window i spend most days alone i prefer it that way superwoman leaves for work before i get up and mornings are tough when i contemplate the whole life with dignity issue i find that i have already lowered my dignity standards i guess that s how things work as i age i learn to accept the physical limitations the sags and wrinkles even the lack of respect that i at one time owned the difference is that my illness has brought this on in three years not thirty as the son of a career military father i learned to travel and adapt early being able to travel to unknown places became a strength it taught me to accept other cultures and to see life through more objective eyes ironically now i find that my world once global has shrunk to a few miles oh i still watch the world news but now my view is limited to what others choose to allow me to see my real dignity never came from my physical being but from the wisdom i gained by opening my eyes and having a willingness to see the world through the eyes of the less fortunate i knew early in life i was lucky it seems that i always understood the ignorance of a person bitching about having to choose a language at his atm while another person struggled to feed his family that day as my body fails me at an exponential rate i cling to the dignity of my mind when i find i begin to cross the threshold of mindlessness i pray i have clarity to see it my dignity will then give me the strength i need posted by corticowhat at 1 57 pm 12 comments tuesday october 9 2012 the caregiver s lament as i approach the four year anniversary of the diagnosis of my adversary i ve never felt comfortable with illness or disease or syndrome i am reminded that this blog is primarily read by caregivers who daily do things they had never envisioned themselves having to do they do it out of love often not knowing whether the patient has any understanding of the sacrifice they make while i certainly can t speak for everyone who has cbgd i feel i may have some insight that may give someone hope it is a common symptom during the progression of the degenerative properties of cbgd for the patient to lose their ability to speak i can say with certainty that my speaking abilities are greatly diminished both in enunciation and my ability to properly choose words i believe that had i not been a trained public speaker and a bit on the talkative side i might be mute now i believe that my baseline of verbal skills was better than most in other words i had further to fall than most writing is a different skill set certainly my skills there have also diminished you need only follow my blog as evidence of that writing allows me to construct an idea and then choose and re choose the words i may use to convey the idea the process is slow and increasingly laborious however the idea remains vivid and organized it just seems that finding the way to express it may leave me even my facial expressions and body language have withered the point i am clumsily trying to make is if i consider my baseline verbal and cognitive skills four years ago and extrapolate their degeneration moving forward it seems very evident that i will be able to understand and indeed create abstract ideas and thought long after i am no longer able to demonstrate or acknowledge that understanding this does not necessarily mean this is the case with your loved one or even me at some point in the future but it seems plausible even valid that i may someday be fully capable mentally with no way to express it the irony is by the time i know the definitive answer i will no longer be able to tell you the caregiver s lament i took this from my office window a few days ago posted by corticowhat at 4 46 pm 6 comments tuesday september 25 2012 know that i hear you over the nearly four years since i began this blog i have been moved motivated and sometimes crushed by the comments that individuals have posted in response to my blog though i sometimes don t respond directly to the commenter i do read and reread with great interest the words they took the time to share with me an anonymous person commented on my last post how can i not respond to this but i don t have the words you ve always been the one with the beautiful words a big scrapbook full of beautiful loving words you are the most remarkable caring thoughtful loving man i ve ever known there was never a problem you couldn t fix or any obstacle we couldn t face you are truly the jack of all trades master of all even in the face of this monster that s before us you continue to be the solid rock you ve always been you are an incredible husband father grandfather son and brother and i ll love you forever and always superwoman superwoman has been my pseudonym for my wife though everyday in so many ways she tells me she loves me this comment came at just the right time it lifted my spirits and gave peace to my troubled mind thank you this year s hummingbird migration has been spectacular i don t believe i will see another posted by corticowhat at 11 24 am 4 comments friday august 24 2012 the thought of you posted by corticowhat at 5 52 pm 1 comment tuesday july 24 2012 the after in a few moments of unusual candor superwoman and i recently had a conversation about after i needed to be reassured that she would be okay tears flowed and long hugs were heartfelt and tight we i talked frankly about how lucky i was to have had time to prepare for the inevitable while i still had my faculties how much worse it would have been had i been killed in a car crash or had a sudden debilitating stroke i said with certainty that my current physical condition and state of mind would not have allowed me to prepare for the after the way i have it gives me a great feeling of peace knowing my wife will be fine our conversation meandered around to the type of man i had been i was humbled to silence when she shared a conversation she had with a friend she explained to the friend that i was always doing things for her random acts of thoughtfulness the friend told her it was a reflection of the type of man i was and how i had been raised her friend said you can tell he s not doing it just to impress you i remained silent with pride but the truth is nearly everything i have accomplished in life professionally as a husband and as a father was motivated by my desire to impress her even now the courage i muster to get through these remaining trying days comes from my hope that she will in the after think well of me 1989 posted by corticowhat at 12 26 pm 3 comments tuesday june 19 2012 slap as i continue sliding down the slippery slope of my affliction there are moments of clarity that i don t believe would be possible for me to see amongst the noise that happens when i allow my mind to dwell on mortality were it not for my ability to step outside my reality and grasp the fact that a single human life is only that a single human life the big picture shows us that humans have only been around for a millisecond on the cosmological scale and if our limited understanding of the earth s history teaches us anything it is the likelihood that we will only be here a moment more planetary collision biological viral mutation or a volcanic eruption that speeds up global warming given the vastness of time are not possibilities but probabilities ha i think intellectualizing my insignificance gives me permission to check out of this existence without regret then i get an occasional slap of clarity that brings me back to the emotional mess that being human means yesterday was father s day slap while my existence may end with my death the ripples that my life caused in this pond of humanity will go on my children confirm to me that i made a positive difference in their lives and they will make a corresponding difference in the lives of others with any luck humanity will figure out a way to survive our collective ripples growing to a tsunami of enlightenment as my ability to type has degraded and in the interest of accuracy i think i will try reading my posts as you may be able to tell my speech is also wasting away posted by corticowhat at 1 21 pm 2 comments wednesday may 16 2012 birds to feed i am still out here or at least a shadow or echo of myself is time seems to pass differently for me now superwoman my wife of nearly 25 years wakes before sunrise to get a workout in before quietly leaving for work i sleep in until whatever time my bladder decides to get me up thankfully i have a very tolerant bladder and often sleep past 9 am i am still able to shower and dress myself though the effort leaves me a tad drained i am gratefully alone most days gratefully because i am self conscious of my appearance my tremors and social interchanges even minor ones exacerbate my symptoms the time alone also allows me have mental conversations with the meaningful people in my life i fear that i may never actually have those meaningful talks and leave this earthly plane with doubts in their minds if there was one thing i would say to them all it would be i am not afraid it is extremely difficult for me to write a coherent post for this blog therefore i often think of blurbs that i should write about but either i forget them or they seem shallow in the light of day i will try to keep you posted but i have birds to feed and tomatoes to water i still take an occasional photograph this was a recent visitor to my feeders posted by corticowhat at 2 04 pm 3 comments wednesday march 28 2012 rip peter goodwin my wife discovered a time magazine article referring to this video while a bit disturbing for her i think it gave some validation to some of my comments to date posted by corticowhat at 3 40 pm 4 comments thursday january 12 2012 conflicted or confused it has become difficult to write a blog post not that i have trouble thinking of subjects and god knows i have the time it just always seems i am conflicted about how to begin and what to explore it seems i am often conflicted about what to eat then how many crackers with my soup i m conflicted about when to fill the bird feeders and what tv show to record i am fearful that rather then conflicted i am simply becoming confused i don t feel lost or disoriented and i wouldn t say that i m befuddled but here s the rub can a person determine shades of red while wearing red lensed glasses will i remain able to recognize and measure my own degenerating mental capacities maybe that is the punchline to god s cruel joke superwoman my wife scrapbooks the verb i mean with a capital s she is so serious about it that i built shelves before cbgd to help her store and organize her tools and embellishments every meaningful photo of every birthday recital trip to the zoo or graduation has been pasted into its proper place and fittingly embellished vacations have their very own scrapbooks when she told me the subject of her next project i had to giggle then we shared a laugh when she said i ll have to hide this one from the kids before my readers jump to erroneous conclusions the scrapbook will contain love letters notes and cards i ve written to her over the last 25 years she saved them all the little cards that come with flowers there must be 100 notes left saying i had run to get milk and even the occasional i m sorry i was wrong there s more than one there are the full blown my life has changed forever notes maybe a picture is worth a thousand words but saving a note that says i m at tim s soccer game love bob speaks volumes while superwoman may have trouble verbally expressing her feelings her actions are plain to read she loves me and has for a long long time posted by corticowhat at 6 05 pm 5 comments older posts home subscribe to posts atom follow bobpeden1 the story corticowhat memphis tennessee united states i am a 59 year old male college education professional manager husband and father nothing particularly outstanding except i m dying view my complete profile visitors get the neocounter web counter and many other great free and premium widgets at neoworx followers blog archive 2013 1 feb 2013 1 final post 2012 9 dec 2012 1 oct 2012 1 sep 2012 1 aug 2012 1 jul 2012 1 jun 2012 1 may 2012 1 mar 2012 1 jan 2012 1 2011 15 nov 2011 1 sep 2011 2 aug 2011 1 jul 2011 1 jun 2011 1 may 2011 3 apr 2011 1 mar 2011 3 feb 2011 1 jan 2011 1 2010 30 dec 2010 2 nov 2010 2 oct 2010 1 sep 2010 1 aug 2010 2 jul 2010 3 jun 2010 3 may 2010 3 apr 2010 5 mar 2010 4 feb 2010 2 jan 2010 2 2009 73 dec 2009 3 nov 2009 3 oct 2009 6 sep 2009 6 aug 2009 5 jul 2009 6 jun 2009 6 may 2009 9 apr 2009 9 mar 2009 7 feb 2009 6 jan 2009 7 2008 3 dec 2008 3