alzheimers news-staying involved

ALZHEIMERS NEWS-STAYING INVOLVED

after i was diagnosed and after i had a few months for this life changing event to all sink into my psyche
i felt like i was in a good position to reach out to folks and talk to them about alzheimers disease

i always say in my presentations that i have 3 perspectives of alzheimers disease
as
a family member who lost my mother and younger brother to the disease
a physician who treated some alzheimers patients
then
now
a patient with the official diagnosis in my chart of
mild cognitive impairment due to alzheimers disease

it is with these perspectives i give my presentations and answer questions from patients families and others

i have sort of been there done that 
it makes i think my answers more credible

i have given several presentations on my story using it as a vehicle to talk about alzheimers disease

my first big presentation was to the 80+ family physicians that were in our practice
in preparing for my presentation i realized how much i didnt know about alzheimers disease
i also realized how much they didnt know about alzheimers
the presentation went well
they asked me a lot of questions 
some of them cried and so did i


the next big presentation i did was as a speaker at an alzheimers symposium in central texas
i geared that presentation to my story and to a more lay type of audience
i had lots of questions afterwards and during the day as i attended the other presentations

since those two i have done several other large group presentations

my favorite one to do though is to smaller groups where i talk for a few minutes then leave most of my time to do just a q and a or question and answer session

since last year when the pandemic hit all these presentations have been cancelled
i miss them since i enjoy answering folks questions they cant get answers to
as 
a family member
a physician
a patient

now that the pandemic is slowing down and things are opening up 
eg 
i am partway through getting fully evaluated for restarting the biogen aducanumab study where i will restart my aducanumab infusions
the aducanumab is to be voted on next month by the fda for the treatment of mild cognitive impairment due to alzheimers disease and mild alzheimers disease

i have been able to communicate with folks via this blog and social media 
answering their questions they may have
eg
recently a couple from the east coast reached out to me about the husbands memory 
after getting their information i recommended they be sure he had a full memory loss workup
it seems his diagnosis of alzheimers disease was probably wrong

the correct diagnosis of another dementia was tentatively made
the treatment for this dementia is different from alzheimers
the course of the disease is different than alzheimers
which clinical trials he enters are different also

last week a reporter from a well known newspaper reached out to me for an interview on alzheimers and my involvement in the biogen aducanumab study 
that interview will take place later today 
i will post the article when it is written
now sometimes you can interviewed for an hour or two but only get a paragraph in the article 
ill take whatever i get as long as some word gets out to others about alzheimers and clinical research 
that will be where the answer to treating this awful disease will be
in clinical research studies


then recently i was contacted by the alzheimers los angeles to take part in their alzheimers conference
i have done these before in the los angeles area
however
this one will be done on zoom
here is the link to the conference
it is now closed to registrants but will be available online sometime later after today
ill post the link when its available

i will be on the panel with another couple one of which has early alzheimers disease
the moderator will ask us questions then later the audience will be allowed to ask us questions
our session will last about 40 minutes

in the live conferences after my session i usually would go into the lobby so folks can ask me questions they couldnt ask earlier
this is the part i enjoy

just prior to my panel a elderly lawyer does a presentation
she is an excellent presenter

just after my panel a neurologist from cedars sinai will do a presentation on mild cognitive impairment and mild alzheimers disease

cedars sinai hospital is one of the sponsors of the event

hopefully later this year these conferences will go live
ive done enough zoom this year to last a lifetime thanks to ms bs kindergarten zoom class

the couple i mentioned above did a zoom call with me to discuss the husbands situation

i am happy that now 10 years after my diagnosis that i am able to still function at this high level
i sure hope it lasts longer
i certainly hope the aducanumab infusions help
if 
they dont 
im ok with that
since ive done my part to advance our knowledge in finding a treatment or cure for alzheimers disease

the organicgreen doctor