my story revisited #108-the start is the finish

MY STORY REVISITED #108-THE START IS THE FINISH

i wrote those words in the title of the blog today 8 years ago 
it was true then
it is still true today but there may be hope in the future that the start will not be the finish

its the beginning of the end

when i wrote this my moca memory testing was still off some
it since has returned to a normal level
a score of 27-30 is normal
i have for the last several years scored 28-30 on my moca testing

there are a lot of folks who are just starting on this journey
my advice to them if they are just diagnosed is

maximize your health

make sure you have a good accurate diagnosis
if your provider didnt do a good evaluation find one that will
in 2021 you should be able to fairly definitely tell if a person has alzheimers and if not be able to know what the cause is if its not alzheimers
remember all memory loss is not dementia

become involved with your local alzheimers organizations like the alzheimers association or state alzheimers organizations eg alzheimers greater la alzheimers texas alzheimers arkansas etc to name a few
its these organizations that have pushed the politicians to fund better research and to pass laws protecting alzheimers patients

you can make a difference by getting involved

know as much as you can about the disease

make sure your caregiver and family  are involved and know what is going on

get involved in research studies as a research volunteer
nothing happens if folks dont volunteer for these studies
see clinicaltrials.gov for clinical trials opportunities
eg
i have been in two major alzheimers studies now for 11 years
one the adni study is the most important study thats ever been done on alzheimers
the other the aducanumab now called aduhelm study led to the fda approval of its use to treat those with mci and early alzheimers

im being treated at about $5,000 a monthly infusion at no cost to me plus all the mri scans and pet scans and lab work and memory testing and physician visits that are required

if it works i will have gotten it months before others are able to access it
granted we probably wont know if it helps as well as advertised
one measure of is it working will be
if im still writing this blog in 8 years then it worked 

when the disease diagnosis starts it is the finish
you will not get better
you will probably die from alzheimers
how soon 
how healthy you live and if this aduhelm and others soon to follow work then the trajectory will be slowed hopefully significantly

join your local alzheimers walks
these monies and those involved with them will make and have made a difference
___________
09-16-2013
IT WAS A JOURNEY THAT WAS NEW FOR SOME

this is why i walked this weekend in the
williamson county walk to end alzheimers
for the alzheimers association
for those who dont know thats my brother mother and dad
all stricken with the disease

i noticed at the walk some people wrote my name on their tshirts
i cant do that yet since i guess since i cant 100% say for sure that
i have it
although based on my testing it all points to that
and
i personally think i have it as i feel a slow decline thats recognizable
right now only to me but im sure it will start to show on testing
soon










thats mr b my walking buddy at the beginning or is it the end
is the same i think like the disease itself

today was the first time many walked on this walk
and
like with the disease its the first day that many will start
the walk with themselves or their families or friends as they
start that journey with the disease

im sorry to say once that journey starts it has only one ending
and the journey is usually a sad one until it ends

you cant turn back like people were able to at this walk when
they got too tired or hot or sweaty or muddy
life
im afraid with this disease
doesnt quite work that way

its only one direction with a lot of hills and valleys
but its is only a downward one

thats my buddy michael who two years ago gave me a pillow he made
to raise money and made a poster that he and his brother pulled in a wagon
the 2+ miles around the walk that said
im walking for dr nash
then gave me a letter ive posted and saved
it makes me cry every time i try to read it

he always raises money this year it was by collecting cans
and selling them
and he is one of the top fundraisers on his team

this is another one of my buddies
a die hard aggie fan
whom i am always trying to convert to a horn fan

what i like about mr b michael and aggie kid
especially joshua the middle schooler who sang the national anthem
and the high school cheerleaders and the school band that was there
was that there was this youth presence there this weekend

that is important for us to find a cure
as it will be them that will benefit the most from all of the treatments
that are on the way

some of the treatment research is financed by some of the
money raised through these walks

its the young sons and daughters and grand kids and great grand kids
and nephews and nieces that get lost sometimes
in all this alzheimers business
they are affected by this like we are
lets dont forget them

these are volunteers from the habitat for humanity that i work with
frequently
they spend a lot of hours every year helping build these houses
for deserving families
i personally want to thank them for taking the time to walk with  us
today

we all need to be volunteering somewhere and giving back to those
in need

this is most of our team the organicgreendoctor team that walked
last saturday

thanks to each one who took the time to walk with us today

most of not all have been affected some way by
alzheimers disease

a parent
a grand parent
an in law
a sibling
a spouse
a friend
a relative

then finally
this is my wife she
the one with the hat on
with the alzheimers walk miniature donkey
thanks to her for her support

i  wish her a happy anniversary next saturday
(we will be putting in the square foot garden that we auctioned
off for the walk)
and
i hope we have a lot of good times together in the near future until
that journey starts to slow down
love you
__________

these three young men are now in high school or college
they walked with us for several years
they made each walk special as we enjoy and need youth in the movement
kids may suffer silently sometimes in dealing with the disease in their loved ones

thanks guys

i have set up my team for the walk to end alzheimers in santa barbara named
organicgreendoctor at this link

because of the pandemic we will not be walking at the walk site but will walk a route up to the santa barbara mission by ourselves wearing our alzheimers walk shirts and carrying our alzheimers flags

we will be thinking of our lived ones who had alzheimers 
mom nell
brother joe
probably dad charles
and
me

i seem to be the lucky one to have gotten a temporary reprieve

please feel free to donate to or join our team to help raise funds to fight this awful disease

the organicgreen doctor