MY STORY REVISITED 5
this is my fifth chapter as i go back and read and look at any alzheimers related blog i have written
i plan to write these each wednesday until i catch up with my present writings
i think i have a lot of material to keep me writing these chapters for a long time
as i read the blogs from the past i edit them correcting any errors and spellings but trying not to change any of the content and story line
my wife she edits my stuff usually but when i first started she left them alone treating it like she did her creative writing class not getting hung up on punctuation and spelling as she was more interested in the creative content
later i convinced her to help my ocd side and let me know when i had errors
this blog today was written the day before i went up for entry into the alzheimers disease neuroimaging initiative study at the university of texas southwestern alzheimers disease center
knowing all i know now it seemed sort of naive
i was excited to be part of the alzheimers research world doing my part to help advance our knowledge of the disease
as i read this old blog this morning i really think looking back that i subconsciously knew that i was having problems but was not really consciously aware of it
i was thinking about alzheimers a lot since my mom had died a few years earlier and my younger brother was in the middle of his alzheimers journey
he died in the final stages 3 years after i was diagnosed
i thought the day before i was having all those tests the next day but i realized as i wrote this this morning that after my memory test they probably decided to wait to do more testing
as i wrote before this trip has changed the last 8 1/2 years of my life
maybe for the worse
maybe though for the better
it maybe prevented me from making an error at work
what harm did it prevent
it maybe saved me
since after initially having a drop in memory scores i now have a normal score
would i have continued to worsen without having volunteering for this study
would i have gone too far before i discovered i had a problem
i dont know
but
deep inside i am glad i went this day almost 9 years ago
did it make my life better in the long run
i think so
what do you think
11-17-2010
ALZHEIMERS DISEASE NEUROIMAGING INITIATIVE
those of you who know me or my family know that my mother had alzheimers and spent the last months of her life in a nursing home before she died
we experienced the effects of alzheimers on a loved one
we saw the devastating effect it can have on a person and their family
we saw the dwindling of our mother over time
we all dread this happening to us but know that it may be coming to visit all of us eventually
our father before he died probably had early stages of alzheimers but his death from heart disease
occurred before the disease progressed too far
our close younger relative our younger brother was diagnosed with alzheimers in his mid 50s
i am in an occupation where i can not afford to have any cognitive difficulties as it could cause adverse effects on my patients
this has been one of my fears for several years
should there be signs or evidence of impairment then i would want to discontinue working
so far i have not noticed any problems that would cause me any concern
i have wanted to get involved in a study so that i could be monitored over time so that when the early stages occur then i will know and can start planning my life appropriately and can start medications that can slow the progress of the disease
for example i have purchased a long term care insurance policy so that when the time comes in the future that if i need more care we have a safety net financially that will provide care for me
usually in our family this occurs in the late 70s and 80s but it can occur younger as we have seen in our family
my memory testing three years ago to get that insurance was normal
today i start that journey on being monitored
my wife she and i are going on a 3 hour trip to a teaching university so that i can be involved in a study they are doing on early mild cognitive impairment called the adni study
i will undergo 5 hours of testing today
i will undergo a neuropsychological testing (hope they dont ask me to remember names or spell correctly)
i will have blood tests done to make sure my baseline health is ok then tests will also be done on dna and rna to measure markers that may be monitored in people with alzheimers
i will undergo an mri of the brain today that will look for any changes in the brain
i will undergo a pet scan of the brain today that will be looking for deposition of a protein in the brain that occurs in alzheimers patients
i will under go a lumbar puncture (the only sucky part of the visit) to test for the proteins amyloid and tau in my spinal fluid
after all of this is done if i qualify will be entered in the study hopefully as a volunteer normal control but if i were to have mild cognitive impairment which i dont think i have then i would be put into the study as a mild cognitive impairment study subject
they are picking 5 people from this location to be part of a 2000 patient study nationwide
i will have to go there several times over the next 60 months to do the same tests
i will continue to be monitored there after the study for as long as i live
what benefit do i get from this
i feel like i am contributing my small part to help figure out this terrible disease that will some way affect everyone who is reading this blog
i hope that things i learn about myself may help my siblings and my children and their children
and
i will know where i am with this disease as i continue to age so that my wife and i can plan our lives for the future
the organicgreen doctor
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