the 3 of us

THE 3 OF US

during the holidays we made a quick trip to southern arkansas for my poet writer carver witty brotherinlaws 80th birthday
i must say i hope i make it that far and am intact mentally and physically like he is

on our way to the austin airport we had a few hours to meet up with friends and family at chuys to get our chuys fix a must for any visit to the area
we like one of the first two original chuys locations

there were twelve of us all sitting together outside since the weather was so nice
we visited for over 3 hours
yes i gave the waiter extra tips for taking care of us all

in that group there were 3 of us
all with different neurological diseases that are known to be fatal

one of course is me with my mci due to alzheimers disease
i know what the course of the disease is since i watched my mother and younger brother die with it
i have also seen others with the disease over the years end up the same way

another of the folks there this day has huntingtons disease
its a genetic disease that is a dominant gene
if you get that gene you get the disease
thats what you will probably die from
like me with my alzheimers disease who lost family with the disease
her father and sister died from huntingtons disease

the other person has a rare disease thats similar to multiple sclerosis but slightly different
sadly im sure the result will be the same as with all 3 of us

i was and will be in the biogen aducanumab study starting hopefully in march receiving monthly infusions of a drug that at higher doses has been shown to at least slow the disease down

all 3 of us will accept slowing down our diseases
cure we would like
but
slowing down it we will accept

i also am aggressively doing all the healthy things one does to take care of your health
i also take several supplements from bredesens reversal of cognitive decline protocol
something im doing has helped

the person with huntingtons is also doing the same things i am doing
plus
she is in a study where she receives infusions via spinal tap every few months
this drug decreases the abnormal protein thats made in huntingtons disease in the brain
not a cure but it may slow things down
she also has a fitbit like wrist watch with an accompanying smartphone that monitors her movements
she also once or twice a day does a protocol of activity on the smartphone that monitors her movements
if you have ever seen someone with huntingtons progress you understand what i am talking about

my good friend greg died a few years with this disease
the neuromuscular systems fails them so eventually their body fails them
but cruelly the brain function usually remains intact
greg was that way
he couldnt swallow or eat or breathe normally and his arms and legs wiggled and moved around a lot
but he was as sharp as he was when he was in his medical practice
this one is a cruel disease

they are on the cusp of having an actual cure for huntingtons disease using genetic manipulation
she may miss out on it though or she might make it in time

as compared to the other two of my neurological disease buddies mine may be the most merciful for the patient as our mind goes and we dont understand or know what happens to us in the end
theirs doesnt work that way
their body fails them but their mind may be in intact

the other person with the ms like disease is scheduled to go to mayo clinic for aggressive treatment and therapy the first part of 2020

i have known them both now for over 15 years
this is the first time ive seen them in over 2 years
i must say i really thought they would have been more progressed in their disease but they werent
i could tell a difference but was expecting things to be worse

the mayo clinic one i thought looked much better than since the last time i saw her
i remember the first time i met her several years ago she came into the restaurant in a wheel chair
she freely walked into this restaurant this last week
so
something she is doing has made her better

now i know of course with ms that folks can have good days and bad days
i would say this was a good day for her

i do know that 9 years ago when i was diagnosed if you had asked me what would we all 3 of us be like in 2020
well
i would say that a person with hungtingtons at her stage would be all bedridden needing total care
well she is not there
i would say that a person with an ms like illness in a wheelchair would carry a poor prognosis 9 years later
well she looks better to me
then
i would have said that in 2020 i would probably be mentally incompetent and probably would have been in a memory care center
well
im not
my memory is in the normal range and except for complaints a normal 70 year old would have i am doing just fine

so
my new years resolution or hope is that the 3 of us continue with our neurological recoveries at the same level we are now this year

we are all working hard to make it happen

i was in my garden this week after i returned standing in that big space all by myself looking up at the mountains in the distance with the wisp of clouds floating by listening to the birds chirping and the chickens happily clucking when i thought about the 3 of us

us neurological cousins all 3 of us sitting at that chuys restaurant visiting all involved in research for a cure and treatment of our diseases but still living our lives
feeling lucky we are

we are kin forever

the organicgreen doctor