organicgreendoctor: alzheimers news-these 4 drugs for alzheimers will ...

organicgreendoctor: alzheimers news-these 4 drugs for alzheimers will ...:   ALZHEIMERS NEWS-THESE 4 DRUGS FOR ALZHEIMERS WILL ALL BE AVAILABLE SOON my diagnosis is mild cognitive impairment due to alzheimers diseas...

alzheimers news-these 4 drugs for alzheimers will all be available soon

 ALZHEIMERS NEWS-THESE 4 DRUGS FOR ALZHEIMERS WILL ALL
BE AVAILABLE SOON

my diagnosis is mild cognitive impairment due to alzheimers disease
this diagnosis qualifies me to receive treatment with biogens aduhelm (aducanumab) a monoclonal antibody given as monthly infusions at ucla
the antibody binds to beta amyloid and removes it from the brain
with the hope that removing amyloid plagues from the brain will slow down the disease
in clinical trials it seems to do so by about 20+%

its been approved by the fda for use in mild cognitive impairment due to alzheimers and early alzheimers

its available now in the private world
i receive mine in a clinical trial at ucla

biogens aduhelm (aducanumab) received accelerated approval review and got final fda approval     

now waiting in line are these 3 other monoclonal antibodies that have or will receive this accelerated approval review or will soon apply for it

these accelerated approval reviews are based on amyloid removal from the brain
not on how well they slow down the disease
amyloid level is easy now to measure with amyloid brain scans called amyvid pet scans

i think of it like measuring the cholesterol level in the blood to see how well a cholesterol drug lowers the cholesterol
we know that keeping the cholesterol low does prevent heart attacks and strokes

hopefully lowering the amyloid in the brain will lead to the slowing or prevention of alzheimers disease
thats what doing all this for us in the alzheimers world is all about

these other 3 may be available in the next couple of years

biogen aduhelm (aducanumab) is already approved for use

biogen lecanemab probably works better than its sister aduhelm (aducanumab) since it causes less aria or microbleeds which may make it a safer drug to use

an aside here
i have had my 5th infusion in the restart of the aduhelm (aducanumab) study
i have had 3 normal mris of the brain ie they show no evidence of aria or microbleeds
i have gone from the 1 mg to the 3 mg to the 6 mg dose
i have another mri in november and then one in january
at that time i will be on the max dose of 10 mg
if i have no microbleeds on those two scans them i should be ok
i also was on the 10 mg dose in the prepandemic aducanumab study and had no microbleeds
fingers crossed

roche gantenerumab will apply for early approval soon

lilly donanemab is the one that may turn out to work the best
it slows the symptoms down by about 30%
its given as a injection under the skin and is given for a short period of time
it probably removes the amyloid plaque better than the others
it may be the one that works the best and will be cheaper since its not given long term

we should know soon in the next 2+ years which one of these works the best

stay tuned

here is a good review of these 4 drugs on the alzheimers forum website

you can search on clinicaltrials.gov for ongoing studies on these drugs
some studies are closed for new participants though

i still consider my self lucky to have been able to access the aduhelm (aducanumab) before it became available to the general public
i got 18 placebo infusions and so far 12 real drug infusions
if it works even 20+% it will have been worth it all

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 my wife she and i 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 and or join our team to help raise funds to fight this awful disease

the organicgreen doctor

organicgreendoctor: garden news-the bane of our existence

organicgreendoctor: garden news-the bane of our existence: GARDEN NEWS-THE BANE OF OUR EXISTENCE mammalwatching.com   if you look closely this guy needs some dental work this guy you probably recogni...

garden news-the bane of our existence

GARDEN NEWS-THE BANE OF OUR EXISTENCE

mammalwatching.com 

if you look closely this guy needs some dental work
this guy you probably recognize from the movie caddyshack
bill murray tried his best to eliminate him from the movie
he never did
they always win it seems

they almost won in our pumpkin patch this year
we lost about 25% of our pumpkin plants to this varmint
it almost single handedly destroyed our pumpkin patch this year

we finally called the gopher guy
he looks like an australian outback guy 
he takes his job seriously
im sure he is a bill murray fan and has watched caddyshack several times
he has that bill murray look in his eye

he is a local expert on the gophers
he set out several traps like those below 
using mainly the blackhawk one
then
he has a portable machine that emits carbon monoxide into the tunnels

after a few days we noticed the gopher attacks dropped significantly 
enough that the pumpkin crop was able to mostly grow without too much gopher destruction
we did keep out a vigilance on using the traps

there is not another good way to eliminate them
poisons etc are out of the question

remember its the gophers or the veggies
save the gophers
you dont grow veggies

we have hawks they keep the eye on our gardens and we recently added an owl box but are still awaiting an owl to set up camp
these guys are natural predators of gophers

we chose the non chemical control methods


ace hardware.com
this is the nighthawk gopher trap
its the one we use a lot in our garden
we have some success with it
im always real cautious when i set them
remember there is no good way to do this

ace hardware.com
this is the macabee gopher trap
we use it some in our garden but i tend not to use it since im afraid i will impel my finger with it


ace hardware.com
recently i was contacted by the local owner of the local hardware store here in santa barbara telling me about these gopher sonic spikes
he has used them on his property and has had no gophers for the last 8 months
he gave me 4 to use in our garden
the range is a 90 ft diameter
i plan to place them at the four corners of our community garden where we raise produce to donate to shelters and food banks and the organic soup kitchen
this section of our garden sits in the middle of our garden fenced area
this allows coverage for all of the fenced in area with these sonic spikes
they emit a low level buzzing i guess that just drives the gophers away
i guess its like being tortured
they move away from the annoying sound
like a car horn that just honks and honks and wont go away
it runs off  3 d batteries that need to be replaced every 6 months
his has been working for 8 months without needing to replace the batteries

i sure hope this works since it makes it easier to just drive them crazy so they will stay out of our garden

we sure hope this works
the other methods i dont really like to use
but
we have to do something or we wont havent any veggies to donate

thanks for the gopher sonic spikes

the organicgreen doctor

organicgreendoctor: my story #109-i still have aricept dreams

organicgreendoctor: my story #109-i still have aricept dreams: MY STORY #109-I STILL HAVE ARICEPT DREAMS   when i get ready to go to bed i turn to my wife she and say well i wonder what my aricept dreams...

my story #109-i still have aricept dreams

MY STORY #109-I STILL HAVE ARICEPT DREAMS 

when i get ready to go to bed i turn to my wife she and say
well i wonder what my aricept dreams have in store for me tonight
each night is different
commonly they are made of things that have happened recently or are about to happen
my aricept affected brain makes some story out of it
it sometimes makes no sense 
it sometimes though seems real
it usually involves me somewhere in the dream being a doctor
it usually is not disturbing
sometimes they wake  me up if i act them out

as my wife describes them its like watching your dog sleeping and they bark or whine and thrash about
we always say they were chasing rabbitts

i dont ever chase rabbits but i do other things

i was visiting someone who is a retired physician and has parkinson disease
he has dreams at night and sometimes acts them out
his is not aricept influenced like mine is
mine is probably influenced by the progression of my disease in my brain
his is probably influenced by the progression of his disease in his brain

he also like me doesnt sleep as much as he needs to at night
ive been that way since starting aricpet (donepezil) 11 years ago
ive learned to just live with it
thankfully i compensate each day with a nap
how long i nap is based on how little i sleep the night before 
usually its 1-1 1/2 hours
more if its been a bad night before

it seems my dreams are getting more frustrating but still not disturbing
i do sometimes wake up in the middle of them and it takes me a while to discern its a dream and not real
that happens more often now

interesting is if i fall asleep watching tv i commonly incorporate whats on the tv into my dream

it not unusual as the disease progresses that this will all get worse
hopefully that will be awhile

when i had the dream below i was about to talk to about 50+ family doctors that were in my medical group about my diagnosis and how i was diagnosed and how they should evaluate their patients with memory loss
many of them i had not seen since i left my practice a year and a half before

just like with all my presentations i do the hardest part is talking about my family members that have been affected by alzheimers
yes i am usually asked how i felt when it was diagnosed

so did they that day 
__________
09-17-13
DREAMS

there you go again those aricept dreams
the medication i take aricept (donepezil) for possible
alzheimers disease has the side effect of very vivid dreams
i mean real vivid dreams
such
that when you wake up you feel like you just stepped out
of the room and closed the door
and
that you could just open the door again and walk into the room
and start the dream back up where you left it off

well
sometimes i wake up suddenly in the middle of the dream
go back to sleep
and finish it
something i never could do before i started taking the aricept

this sunday night was one of those dreams
a weird one
it incorporated events in my life into the dreams

my cowgirl sister in law is a principal in a elementary
school near here
this year the kids are going to start gardens in raised beds
of course she asked me for advice
a mistake
i gave her a lot of it
probably more than she wanted

then this week and next month im talking briefly to doctors
meeting where i use to work about the upcoming walk to
end alzheimers in austin next month
since they are one of the event sponsors this year

i guess all that and that aricept got together and created
a real weird dream
where
i had planted along with a neighbor a nice raised bed garden
with peppers tomatoes broccoli egg plant etc
that were growing great
all nice and landscaped

then my wife she and i
remember  now this is only a dream
invited a group of doctors and their families over for
a meal and for a garden tour

you know doctors kids are like preachers kids
they can be an unruly group
these doctor kids pulled up all the plants
fed the neighbors birds to the cat
but the cat only had them in their mouths
they didnt chew them or swallow them
so the birds eventually got away

the doctors wanted me to do intensive care nursery care
and my wife she to work there also
we met the two of us while working together in a hospital
while in college

thank goodness i woke up after i told the doctors and their
families they had to leave and take their kids with them

oh with that dream i didnt try to go back and finish it

please dont try to analyze and interpret this dream
it was produced under the influence of a drug

this is as disturbing as my dreams ever get
thank goodness

i wonder if i should help those kids plant that garden
at the school
just in case
__________
if you have a loved one or if you are placed on aricept (donepezil) be aware of the effect it has on sleep and on dreams
also be aware as the disease progresses the dreams may get worse
usually patients dont have to stop the aricept because of the disturbed dreams
there are medications that are used sometimes to control the acting out of dreams while asleep if the behavior becomes too disturbing or violent

so for now
i mostly just enjoy my dreams
they are like watching a movie or reading a book that makes you wonder what it all meant

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 my wife she and i 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 and or join our team to help raise funds to fight this awful disease

the organicgreen doctor

organicgreendoctor: it was a texas size event

organicgreendoctor: it was a texas size event: IT WAS A TEXAS SIZE EVENT YESTERDAY cbsnews the cbsnews link above and the la times linked here give a good description of what happens with...

it was a texas size event

IT WAS A TEXAS SIZE EVENT YESTERDAY

cbsnews

the cbsnews link above and the la times linked here give a good description of what happens with the atmospheric rivers

those of you east of here that havent felt the brunt of this river
well 
you will

we got probably close to 2 inches based on our rain gage in the community garden
ill check it this morning for a final measurement
it was at 1.5 inches halfway through  the heaviest of the rain

its a big deal when it first rains here because we go months like 6-8 months without any rain
you can imagine how much dust accumulates outside on things
and
how much oils and goop accumulates on the roadways
so
when it rains especially early on the roads are extrally slick

it reminds me of folks in austin driving in the snow 
thats what its like when it rains here
i personally like to get out and drive in the rain 
heck its a free car wash right
and
to walk around to watch the water make rivers everywhere

lake oroville a big holder of water in northern california rose 20 ft
we need a heck of a lot more water though to replenish all our water we are missing
well take what we can get

all the fires are put out
the mountains got a couple of feet of snow

there were mud slides in several places shutting down the highways
so far i havent see no bad mud slides like we had here in santa barbara and montecito a few years ago that shut down highway 101 for months and killed several folks

i started my day sitting on my couch with the sliding door open so i could hear the rain hit our metal awning and hear the rain dropping down the gutters
it was a soothing sound
it was a country n like moment

i had an appointment to get to so i dug out our hardly used umbrella to keep from getting too soaked
as i drove out of the garage it felt like i was in a car wash it was raining that hard
it was flowing down our drive like a small river

by the time i drove on the road most of the goop and oil slicks were washed away

one thing i didnt do is walk down to the creek that is a block away
it usually fills up and flows like a river with rains like this
ill add that to my bucket list today 

after my appointment i went to the community garden to check on it
i wanted to see how the water was flowing on the garden
there is a gradual decline from the front of the garden to the back where it drops off down to a deep creek that i think flows into the creek near our condo
it all ends up in the ocean

the water flows into the middle of the garden front gate then off to the left side then down past my garden plot under the back gate down the steps into the orchard then down the slope to the creek

if it doesnt hit obstacles it washes away soil and forms gullies as it flows 

what we have done is fill the walkways full of mulch and i have made swales that slow down the water flow which makes the water stay on the property longer and soak into the ground

i havent looked yet but im sure our two rainwater tanks are full now
they hold 120 gallons of water
we use it to water our veggies
the overflow from the tank runs into my garden where i have 1 foot deep trenches full of mulch 
these trenches can hold several hundreds of gallons of water

thats all water staying in our garden that would have ended up in the ocean

we had a 10 gallon bucket full of soil that was all dried out
i checked how deep into the soil the moisture level was after an inch and a half of rain 
it wasnt even a inch deep before i hit fully dry soil

you can imagine how dry all that soil is in our garden

you could see how much all the newly planted veggie had perked up with the rain already
the whole garden will  probably explode with new growth this week
its prime time to pull weeds also since the soil is wet

from the garden i went to visit mr hudson 
they had a fire going and it felt good with all my wet clothes i had on 

this all reminded me of texas during and after a good rain

then after my nap there was hardly a cloud in the sky
the sun was bright
the air was crisp and it felt good going into my lungs

this morning i cant wait to go to the garden to see how nature is responding to this infusion of a much needed rain 

it was a texas like event
an infusion of life blood into an ecosystem in need of a good rain

my favorite time to be in the garden is the next day after a good rain

the organicgreen doctor

organicgreendoctor: covid 19-what to do if you catch covid

organicgreendoctor: covid 19-what to do if you catch covid: COVID 19-WHAT TO DO IF YOU CATCH COVID  thats the artists rendition of the covid virus going down the funnel to hopefully be flushed away so...

covid 19-what to do if you catch covid

COVID 19-WHAT TO DO IF YOU CATCH COVID 

thats the artists rendition of the covid virus going down the funnel to hopefully be flushed away somewhere
this was drawn as sidewalk art in april 2020
sorry 
but the covid virus is still here and will be here for awhile maybe a long time

so
what to do if you catch covid
the symptoms are similar to a cold the flu rsv parainfluenza and other upper respiratory viruses
it takes a covid test to tell if its covid

a covid over the counter test is a good screening test
if its positive you probably have it
if its negative you still may have it
the gold standard is a pcr covid test done at a doctors office or covid testing site

if its positive and you are triple vaxxed like me and you have no other comorbidiities eg in my case it would be my age over 65
you probably will be ok and not have to be hospitalized or be put in icu or be placed on a ventilator or die from covid

however
if you are not vaxxed you are in the group thats ending up in the hospital in icu on the ventilator or dying

almost all of the close to 1500+- that are dying each day are in that category

also
even folks who are vaxxed but are immunosuppressed due to age and other comorbidities like obesity cancer patient asthma diabetes etc
they also are in the group showing up in the hospital icu ventilator dying group just as much much much lower numbers than the unvaxxed

so what do you do if you are unvaxxed and or in a high risk group if you get covid

remember most folks recover from covid without any issues
some dont though or should i say a lot of folks dont

if you are one who decided to take ivermectin or hydroxychloroquine to stop the covid
be assured that you wont get malaria or intestinal parasites
sorry but you are not protected from catching covid

seek medical care
covid can move fast
you based on your status may qualify to get intravenous monoclonal antibodies
these are the same antibodies that your body would be making if you had gotten the covid shot

based on your status you might benefit from high dose steroids
i talked to an oncology nurse who noticed that their chemo patients werent getting as sick from covid as they expected
they think its because they are on high dose steroids
so get steroids early on if you qualify for them

as the year progresses there may be an oral antiviral pill called molnupiravir to take they may have a 50% chance of keeping you from dying from covid

you may if hospitalized be able to get a different antiviral intravenously that may also help

remember dont wait too late to seek care 
if you reach that point of no return nothing will help

so
get diagnosed early 
seek out monoclonal antibody infusions
seek our high dose steroids

those well known public folks who got covid
why did the survive 
they got these three things

or
you could get a covid vaxxine series and not have to worry about any of this


its looking like the 5-12 years could start getting their covid shots in about 2 weeks
based on what happens with the fda and cdc recommendations
we are so looking forward to seeing ms b get hers
this will better protect mr hudson until he gets his 

its predicted his age range 3 years olds may be able to get theirs by the end of the year or the first part of 2022

mr hudson will have to get his two covid shots then a booster shot
they will be monitoring his antibody response to his shots so they will know if he is immunized against covid
luckily pediatric kidney transplant patients seem to be responding to the covid vaxxine
fingers crossed

our numbers continue to fall here
our vax rate for eligible over 12 is 70%
our zip code is pushing closer to 80%
so its much safer here than some places elsewhere

keep check on you local covid case rates

vaxxing the under 12 year old will protect a large population that is helping spread the virus
this group usually recovers from covid ok
its those vulnerable folks in our communities that they can spread it to
someone eg gave the virus to colin powell

if the thanksgiving and christmas and new years holidays dont stir up the covid infections too much
we could be in a good place come march of 2022

if we let up too much on the safety things like masking hand washing etc things may not be where we want them next march

be safe
if you are unvaxxed and get covid seek help early on 
or if you are in a high risk category 
or if you feel like you are getting worse even if you are at low risk

we may be about to get through all this 
finally

sadly also the fact that all those unvaxxed folks are catching covid is also helping to increase our numbers immune to covid

sadly it seems a high price to pay at 1500 a day dying when a covid shot would prevent this from helping in most cases

just remember as long as folks are available to get infected it will remain in our lives

the organicgreen doctor

organicgreendoctor: alzheimers news-an old drug may help

organicgreendoctor: alzheimers news-an old drug may help: ALZHEIMERS NEWS-AN OLD DRUG MAY HELP scientists are always looking to repurpose older medication approved for other uses to be tried in slow...

alzheimers news-an old drug may help

ALZHEIMERS NEWS-AN OLD DRUG MAY HELP

scientists are always looking to repurpose older medication approved for other uses to be tried in slowing down alzheimers disease
many of these are older cancer treating drugs
one observation has been that these patients tended not to get alzheimers disease
subsequent studies on many of them has shown they didnt help in alzheimers disease

the apoe 4 gene is known as the late onset alzheimers gene
its involved in lipid metabolism in the body
it is probably involved in the deposition of amyloid plaques associated with alzheimers disease

if you have the apoe 4 your chances are increased that you will get late onset alzheimers disease
how healthy you live your live determines usually what effect it has on you getting the disease

the old drug researchers looked at is called bumex or bumetanide
a potent diuretic as strong if not stronger than lasix or furosemide

its usually used in congestive heart failure liver failure or kidney failure to unload the excess fluid from the body as the heart fails to circulate the blood and fluid around the body 
most patients i saw who took bumetanide had heart failure

researchers have found that the bumetanide can flip apoe 4 to the less damaging apoe 3
apoe 3 carries a reduced chance of getting late onset alzheimers disease

to read about the scientific more complicated effects read this article about how bumetanide affects the brain in research
bumetanide crosses the blood brain barrier so it reach the brain cells
in the mice study described in the above article it caused biochemical changes so the apoe 4 lost its effects

could this same thing happen in humans

scientists looked at a large group of folks treated with bumetanide and found that they tended to not get alzheimers disease

so maybe it will work in humans

they plan a large clinical trial starting next year where folks will be given bumetanide to see if it will work like it did in mice

some scientists think that if it works the drug may have to be altered so it loses some of its powerful diuretic effects

i cant imagine taking it without have heart failure or kidney failure or liver failure since it so powerful
maybe
altering those effects will make it more tolerable

but
hey 
if it were to work i would take it

i plan to keep my eye on the bumetanide clinical trials to see if it works
it will be a few years before we know for sure

a one month cost of bumetanide is $10-15
that would be a cheap treatment if it works

of course if they go and change its effects so it looses its powerful diuretic effects to lessen side effects that will then be a new drug that will get a new patent
it then will not be cheap

but you know alzheimers disease is a very very expensive disease that costs the health care system millions and millions of dollars a year 
that price tag continues to climb each year

so 
if we could slow down the disease or stop it then the price tag would be worth it

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 and or join our team to help raise funds to fight this awful disease

the organicgreen doctor

organicgreendoctor: garden news-is it the onions

organicgreendoctor: garden news-is it the onions: GARDEN NEWS-IS IT THE ONIONS   this is a picture of my onions i grew several years ago at the country n after harvesting them and letting th...

garden news-is it the onions

GARDEN NEWS-IS IT THE ONIONS 

this is a picture of my onions i grew several years ago at the country n
after harvesting them and letting the stalks dry up we would cut off the stalks and drop the onion down the leg of a pantyhose
then
a knot was tied to separate the onions from each other
this allowed air to get to the onions so they wouldnt rot
we then hung them in our garage snipping off an onion whenever we needed one
the onions would last for months this way

i tried this after moving here to santa barbara but it didnt work as well
the humidity is higher here and it doesnt get as warm
so 
many of the onions would rotten
so
the next season and subsequent seasons instead of making these onion chimes
we chopped up the onions
then
threw them in a blender
then
froze them in gallon ziplock bags 
so
whenever we needed onions for cooking we just took out the ziplock bag and broke off whatever amount of onion the recipe called for

now these are organically grown onions from my garden plot so i know they are chemical and germ free

sometimes you need a fresh onion for things like a salad or tacos etc so i just buy one 

i usually dont think much of it 
i just buy it and use it

for my beans and stews and soups and casseroles etc we just use our disease free onions from the freezer

this weekend i bought an onion to use in our taco salad

on monday i woke up nauseated and felt washed out and had some gastro issues that lasted about one day 

i didnt really think much about it until i saw this news item linked here about a salmonella outbreak from contaminated onions from mexico
it has been found in 37 states so far
most folks have mild symptoms but for those younger and immunocompromised folks they might get a little sicker

 i looked at the sticker on the last onion left but it only had the variety of onions
ie dulce sweet onion and not the name of the company from mexico getting the blame for this 

note a huge amount of our winter produce comes out of mexico

i think this onion will not be eaten or composted its going into the trash
just to be safe

this reminds me of the spinach shortage that occurred several years ago 
spinach all across the us got contaminated with some bacteria usually its e coli or salmonella that was making lots of folks sick
in the grocery stores you couldnt find spinach at all

at that time at the country n i was growing malabar spinach that grows on a vine
it likes warm weather
the smaller leaves work good in salads
the larger leaves work well in casseroles and spinach dishes
i always add some to my beans and soups

we at that time during the spinach shortage were giving way bags of spinach to folks needing it for cooking etc

i got the original plant about 15 years ago from the local nursey
it reseeded itself for years
when we moved to santa barbara i pulled a few plants up and transported then here
the first day i got here i planted them in my garden 4 years ago
i have abundant spinach in my garden most of the year here

i have potted up 4 inch pots of them to sell or donate from our garden
we also have it planted several places around the community garden 
next year
we plan to plant a whole row of malabar spinach since the soup kitchen and food pantries will take it

no worry about germs spreading from this organically grown spinach

so
was it the onions
maybe
maybe not
but
that left over onion with that label on it is now gone

the organicgreen doctor

organicgreendoctor: my story revisited #108-the start is the finish

organicgreendoctor: 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...

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