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Early onset MCI progress to dementia?I have had a few instance
Andy59
Posted: Thursday, January 5, 2017 5:26 PM
Joined: 12/30/2016
Posts: 75


Im a 59 year old male who was diagnosed with MCI 2 months ago. This diagnosis came after:

 1. Neurologist listened to my concerns about my memory, and heard my wife talk about the notes she had been keeping about me for the last year. 

2. I completed over 3 hours of cognitive testing from the Neuropsychologist. I failed all 4 memory tests with scores in the 1st, 2nd, 4th, and 5th percentile. However, I did average to low average in my other cognitive areas.

My question to this forum is simple. Does having MCI at 59 mean the chances of me progressing to some form of dementia are greater than others who develop MCI at a much older age? I understand from my many readings that approx 50 percent of those who have MCI will progress to dementia. I have only one aunt in my family who had Alzheimer's or any other dementia.

I believe in hindsight that my memory problems started at least 2 years ago, and have gotten progressively worse over the last 6 months. I can still drive, but I have had a few instances of temporary feeling lost, and one instance where I had no idea how to get home from the church we have attended for the last 9 years. I rely heavily on notes, and IPHONE reminders for most of what I do through the day. I'm retired from the USMC has of 8 years ago, and have not worked for the last 5 years. 

Sorry if this is not the proper way to initiate a post, as I know this is in the EOD thread, but I did not know how to open a post in the many MCI threads.

Thanks 

 


The_Sun_Still_Rises
Posted: Thursday, January 5, 2017 5:36 PM
Joined: 7/24/2015
Posts: 3020


Hi, Welcome, and this a perfectly fine way jump in.  <3

I will try answer this you. 

There are 2 different things (which over lap because share same name)....MCI in its TRUE form is no progressing, and no fatal. 

It mean, roughly, less cognitive impairment than dementia....so no quite meeting dementia level. 

ALL people with Alz and Dementia WILL test as MCI if they get tested early on....and get dx'd MCI...even though they do no have MCI....does that make sense???

Problem for you is, there no way know.

You say you have steady progression....that speak louder me....as MCI no progressive.  I would say, unless you progression stop....you likely continue progressing and you just early stages dementia now...but what I know?!

Hope that helps....and I am so sorry that you brain progressing.   It sucks get a dx like this, and the implcations you life huge.  I would suggest that you honor, and listen, the progressing part....and prepare you self and you life accordingly....and if it stops, you have done nothing but prepare for an eventuality anyways. 

This a nice group...many here newly dx'd as well, feel free jump in anywhere.

<3


Andy59
Posted: Thursday, January 5, 2017 5:55 PM
Joined: 12/30/2016
Posts: 75


Thanks for your reply and good information.

I have a referral to have a PET scan within the next week or so. I'm the type that wants to know as much as possible.


Andy59
Posted: Thursday, January 5, 2017 6:20 PM
Joined: 12/30/2016
Posts: 75


I did not know that MCI is considered "non progressive"?

I started having an occasional lapse of memory a few years ago. Now, it happens all the time. Reading any info is rarely retained without reading it over and over, and then I can retain some for a short while. If I need to do something, I have to do it as soon as I think of it, or whatever it is won't get done. Also, I went from being a very tolerant person, and never arguing with my wife, to one who at times, is easy to agitate. Little things that did not used to bother me, again at times, really agitates me.

I thought MCI can worsen over time, but yet not always lead to dementia?


Michael Ellenbogen
Posted: Thursday, January 5, 2017 8:19 PM
Joined: 11/30/2011
Posts: 4463


MCI can worsen over time and not lead to Alzheimer or any other form of progressive dementia. Most likely you slowly progressed to MCI. It did not just happen overnight unless you had something suddenly happen to you.  The pet scan will be able to tell you more.

 


Michael Ellenbogen
Posted: Thursday, January 5, 2017 8:26 PM
Joined: 11/30/2011
Posts: 4463


Let me be a bit clearer. It remains MCI as long as two or more of your ADLs (activities of daily living) are not impacted. At that point they need to call it some type of dementia.

 


Iris L.
Posted: Thursday, January 5, 2017 11:35 PM
Joined: 12/15/2011
Posts: 18520


Welcome to our online support group, Andy.  When I first joined, I read somewhere that of the persons diagnosed as MCI, 1/3 will return to normal, 1/3 will stay the same, and 1/3 will progress to dementia.  Someone challenged these numbers, but I have no idea where they came from. Suffice it to say, that some people will go on to develop dementia, some will remain the same, and some may return to normal.  This is because there are many causes of MCI and dementia.  It is part of the evaluation process to search for these numerous medical causes and to treat them.  


For instance, if someone has MCI on the basis of low thyroidism, and the thyroid is treated, then the MCI can be reversed.  This is why we need a thorough medical and neurological evaluation.  Also, medications are responsible for a lot of cognitive difficulties, because many meds impact cognitiion.  You can check your own medications on www.rxlist.com for memory side effects.  Since you were in the military, do you have a history of old head trauma?  Or exposure to noxious drugs (chemical warfare)?  All of this must be looked into.  


Also, you should probably have an overnight study in a sleep lab looking for sleep apnea, if you feel a great deal of fatigue.  If there is any question of depression, it should be treated aggressively for at least 6-8 weeks or more because there is overlap between depression and dementia.


Personally, I have had a diagnosis of cognitive impairment nos (not otherwise specified) since 2008.  I would say that I am basically stable, although I have noticed some long term memory loss over the past year, which is new.  The only way to tell is to wait and see.  


We on this board follow Best Practices, which are lifestyle habits which help us with functioning and help prolong the early stages.  Some doctors may tell you that nothing helps, but I believe in Best Practices because they are working for me and others.  I call us Dementia Pioneers because we are the first generation who is pro-active in our own care.


Unless you have genetic familial early onset Alzheimer's Disease, it is unlikely that you are at risk for faster progression at this age versus at an older age.


After you complete your evaluation, you may consider if you want to begin medication.  Please read over the boards, read about the medications, and discuss with the neurologist.  Then make a decision.


Also, be aware that there is leeway in the distinction between MCI and dementia, meaning, there is no sharp dividing line.  You just have to wait and see what develops.


Iris L.






Andy59
Posted: Friday, January 6, 2017 4:06 AM
Joined: 12/30/2016
Posts: 75


Thanks to all of you for your feedback.

All my labs came back normal. No history of head trauma, or exposure to chemicals. I had a 48 hour in home ambulatory EEG, resulting in all activity being normal. No sleep apnea. I exercise at least 2 hours a day, so no fatigue issues, and not overweight. No depression.

I think after my PET scan, I will then make a decision about using medications.

This board is a wealth of information, and I feel blessed to having found it.


julielarson
Posted: Friday, January 6, 2017 4:38 AM
Joined: 9/30/2015
Posts: 1155


Welcome Andy, I too have MCI and have had it for almost 4 years now, it has progressed some but over all I am doing pretty good.. I have some behaviors that are new I will have checked out with a new neurologist in the next two weeks..    This is a good place for you to come and learn all you can about MCI and the dementias.
BillBRNC
Posted: Friday, January 6, 2017 7:25 AM
Joined: 12/2/2015
Posts: 1018


You are lucky to get a PET Scan. It should provide information for a relatively solid answer to whether you early dementia. Your symptom history and testing seems to me to suggest early dementia, which is by definition progressive. What type of dementia doesn't really matter at this point. On the other hand, you could end up with a normal PET Scan, and that would be very strong indication that you have MCI that just might not progress much further. Good luck.
The_Sun_Still_Rises
Posted: Friday, January 6, 2017 2:50 PM
Joined: 7/24/2015
Posts: 3020


I probably no saying anywhere "right" or "technical" here....but MCI like you brain mildly impaired for we do no know why.  MCI does have a range or a spectrum....and I guess you could move along in that spectrum....but that not really a facet of MCI. 

Because ALL brain impairments in this class (MCI and dementia)....you travel from normal ---> impaired....depending on WHERE you are in the process at the time you take the test would depend on whether that marker still moving. 

BUT...say, if someone steps you foot....it hurts....and it will stay hurting as long as foot there....but it do no hurt worse worse. 

So...there MCI and there a dementia. 

Dementia cause early....will test as MCI but is NOT MCI....because it will still be progressing. 

I know, I know, this very confusing the way they do this the new DSM5. 

AND....further confound it all....you could have a brain impairment that fall in the dementia range....but is no truly dementia either as it no progressing. 

Soooo....in order try make sense, what I *think* the million dollar question everyone asking themselves....does one have dementia (in that is it going progress and are they going die)....I think the ANSWER is in....are you progressing???  If yes...then that likely where you dx going.  Sorry. 

If you no progressing (and thank g-d)....then you likely no going progress that. 

Another way look at it is like this....a duck embryo (in egg) at some point may look like a baby alligator....and if SEEN at that point, everyone would call it an alligator....but it most assuredly will progress and become a baby duck - because that is what it ALWAYS WAS begin with. 

So just because Alz or dementia is caught early and dx'd as MCI and then later dx'd as Alz or dementia....this do no equal MCI become dementia....as this no true....as in those cases, it was NEVER truly MCI....it was always dementia in the early stages. 

<3


Andy59
Posted: Friday, January 6, 2017 3:08 PM
Joined: 12/30/2016
Posts: 75


Thanks "Sun still rises". Your post made perfect sense to me.

I do feel like I have really progressed over the last 6-12 months. I used to only have an occasional lack of memory episode. But lately, they have grown in scale, and happen more frequently, such as not knowing where I am while driving (happened a few times)or making a cup of green tea, putting it in the microwave to heat it up, only to immediately look for my cup, and eventually found it in the microwave and not know how it go there. Or watching my favorite college team (USC) play in the Rose Bowl, watching every play, only to have to ask my friend why the TV showed the wrong score, and he informed my team scored. I watched, but could not recall when they scored. Lastly, following the waitress to a table for me and my brother. I was mad we were being seated near a big group. When I went to sit down, I was now facing the direction I came from, and several tables away were my brother and the waitress, looking at me strangely. Somehow, I thought I had followed the waitress, but in fact lead myself to the wrong table.

After reading for a few weeks on this forum, I know these types of incidents are common, but fairly new to me.


Iris L.
Posted: Friday, January 6, 2017 3:42 PM
Joined: 12/15/2011
Posts: 18520


Andy, what type of PET scan are you having?  I recently had an Amyvid PET scan which looks for beta-amyloid.


Iris L.


Andy59
Posted: Friday, January 6, 2017 4:10 PM
Joined: 12/30/2016
Posts: 75


Iris - Next Thursday, I will be having the same type of PET scan as you did.
Iris L.
Posted: Friday, January 6, 2017 4:28 PM
Joined: 12/15/2011
Posts: 18520


Great!  Even though the Amyvid PET scan shows that I don't have beta-amyloid in my brain, I am still symptomatic.  I will be eager to learn your results, Andy.


Iris L.


The_Sun_Still_Rises
Posted: Saturday, January 7, 2017 8:27 AM
Joined: 7/24/2015
Posts: 3020


It ok wait on make decision meds....however, a few things know about Aricept and its family. 

Aricept does not necessarily improve your cognitive function level....and it certainly does not treat the disease process going on....what it does is, sort of keep you functioning at the level you functioning now....for longer.  If you have dementia (in early stages), the disease will still rage on destroying you brain....but you will stay functioning better.

When you stop Aricept, you function will quickly drop what the disease level is....and if started again, that will be you new level function and you will never again get back what you was. 

So there really no reason wait or hesitate start Aricept if it being offered you....the earlier the better. 

Also good know....they should start you at 5mg (clinical dose is 20mg)....you should stay this 6 weeks, then up it 5 mg more (so 10 mg) for another month, then 15mg a month and then 20 mg....this allow you body time adjust it. 

The main side effect is the runs....so you really need you body time adjust it. 

Certain dementia types are made worse on Aricept....so you should be on look out for that as well...and if you have a paradoxical bad reaction, then you may indeed be in early stages one of those dementias.  But that also good know. 

Other than that, starting Aricept now certainly cannot hurt. 

<3


Andy59
Posted: Saturday, January 7, 2017 11:29 AM
Joined: 12/30/2016
Posts: 75


Thanks "The Sun Still Rises".

I will talk to my Neuro in a few weeks, and most likely ask to go on the meds you mentioned.

I like the at times brutal honesty that is shared on this forum. I know the odds are, with my symptoms, and extremely low test scores, what my future will most likely be.

My wife asked me how I feel about the possibility of progressing to Alzheimer's or another dementia. I thought for awhile, then remembered the first Rocky movie. Rocky was picked by a publicity stunt to fight the current world champ. The champ had never been defeated, and nobody had went the full 15 rounds with him, he knocked them all out. Rocky knew he could not beat the champ, so he trained hard to be able to go the whole distance of the 15 round. He got severely beat up, but he went the distance, still swinging at the end. 

I will take in all the good advice from this forum, make all the life style changes that give me the best odds of lasting longer, and pray to our Almighty Father that His plans are for me to be here longer than expected.


The_Sun_Still_Rises
Posted: Saturday, January 7, 2017 11:51 AM
Joined: 7/24/2015
Posts: 3020


That is all anyone can do.  I mean, after all, we all have our life expiration date.  On the good note, Alz and dementia give us TIME....I consider it a great gift from G-d...we have time really enjoy the time we have left, time say what we need be say, time make relationships right. 

Most people live many many years with it.  And it really just is that initial dx time that you FEEL like you dying tomorrow and it all over.  It DO feel like that when you first dx'd....but that do pass in time.   In time you realize that the sun still rise, you still you....and life really does go on, and that you are still in it. 

Eventually, you start embracing all that you can still do. 

I find that even though I have this, and even though I nearing the end my time....I have so much that I still enjoy life, that I can still do...and I am exceedingly grateful G-d or the universe the time given me get ready my next journey.

Best luck you next appointment....I hope you will let us all know how it goes.

<3


Iris L.
Posted: Saturday, January 7, 2017 9:21 PM
Joined: 12/15/2011
Posts: 18520


After I began Exelon patch, the glitches and lapses that I had been experiencing began to fade.  So much so, that I said to myself, "I'm cured!"  But then, a glitch would return.  Then another.  So, I knew I was not cured.  But I am much better than before.  I'll take it.  


I don't even think in terms of life expectancy, because I know that no one will ever know how long they will live.  We have time to decide what we want for the remainder of our lives--how we want to live, what we want to be in our lives.  We can have our Bucket List, whether it be to go on a long desired trip, or to sit in our garden and smell the flowers every day.  It's up to us.  We get to decide, and we get to decide NOW.   We can disregard what isn't important.


Best Practices offers us the best chance to deal with the hand we've been dealt.  The doctors don't talk about it.  Only here do I feel we have a chance.  I'm taking it.  I don't even have a specific diagnosis, but I'm not waiting around for specifics before I do something for myself.  A big part of living with dementia and cognitive impairment is not allowing yourself to become discouraged.  In fact, I think that's the hardest part for me.    Fortunately, I have my cyber-friends to lift me up!


Iris L.


JRPagan
Posted: Sunday, January 8, 2017 3:45 PM
Joined: 12/25/2016
Posts: 21


Hi Andy.

In 2013, I complained about my memory because of the severe impact it was having on my educational goals. Nothing happens over night, so I suspect this was going on for some time, but that is when I noticed it. I was not tested until late that year, and was given learning disability diagnoses with a cognitive disorder. "Phewy"

It took me another year before they would give me my first MRI, and then I was made aware that I had a cognitive impairment, although none of my doctors were communicating and each had it entered slightly different in the system. "Ugh!"

It is interesting that, during the time of that diagnosis, I wondered about dementia but was told that it was highly unlikely. In hines sight, I should have been a better advocate for my own well-being. I should not have accepted his response!

According to journal articles, from medical magazines, there i sa 50 to 60 percent chance of MCI becoming progressing to dementia within the first three years. According to medical journals 40 - 50% of those diagnosed will remain stable or improve over time depending on the cause and treatment. Books, written by professionals, appear to support these facts.

So, can you progress from MCI to dementia? According to such writings, you have a 40-60% chance of developing dementia, and if it is going to happen, it will 'typically' happen in the first 3 years of diagnosis.

Now, with regard to whether or not you already had it prior to diagnosis? Once again, it will not happen over night, and cognitive decline cannot be identified without a significant change. So, I have to assume that my impairment started years before it was identified. Books do mention that a person in early stage Alzheimer's, on average, has had the disease for at least 3 years. Makes sense to me.

With Lewy bodies dementia, or PDD, it would be a bit different because some symptoms are very physically evident and I for one can recall exactly when those symptoms began. For instance, I started having active nightmare/dreams in 2008. I cannot yet forget that moment in time! And, when my autonomic nervous began acting up, I passed out and cracked my head open! That was in 2011! That was an embarrassing moment in time for me. I passed out and my friend came to my place to find me half undressed and laying in my own blood.

Okay... I will stop there because I am sure I am probably rambling. Feel free to ask questions. I can also recommend some light reading too, if you private message me. I am sure Michael would have a bit too. I am enjoying stuff he finds every day.

Take care.

~ John-Richard ~


The_Sun_Still_Rises
Posted: Monday, January 9, 2017 12:54 PM
Joined: 7/24/2015
Posts: 3020


 

For me, dementia was no even on my or my doctors (due my age) radar.  I had physical symptoms as well (co-morbid physical issue).  But my first symptoms were tiredness, lethargy (from previously high energy person), and random bouts of lightheadedness and confusion. 

This progressed fainting.  And the confusion became difficulty tasks I was doing.  I was getting lost drive new places, and limited driving places I knew well. 

My thyroid was removed and I started collapsing randomly.

Every year the tiredness progressed, fatigue that took on new dimensions and depths of profound.  Pain began and then became unbearable.  It hurt move. 

My autoimmune came back positive and although I thought my doctors were FINALLY on something....oh no...I briefly got a fibro dx (from the autoimmune specialist)...and then a Lyme dx from my primary...who then put me 1.5 years 4 strong antibiotics. 

I became bedridden and unable hardly walk.  I used walker, but needed a wheel chair.  I spent the next 2 years extreme physical struggle. 

Meanwhile my tasks were increasingly hard do...many had become impossible and simply dropped off my plate, every few months more tasks would slip over the side my plate.  I stopped drive at night, bad weather....most places. 

I would get lost in the grocery store, or despite a list no be sure I had all the things on it.  I could no manage on my own any more.  And, I could no longer figure out my medical things.

Then....I got new doctor and a new dx for the physical, and a med that gave me a new lease life...I could walk again, LIVE again, and I felt good....great in fact.  But my brain still go.  A few months later...I got the first dementia dx.  I got all the labs, and sucked it up and got the spinal (because I really really really needed them say it was something fixable - it wasn't), and the second neurospych and significant decline....and an Alz dx. 

I was progressing fast and steady....it really WAS this. 

But I have say, NEVER was dementia on our radars....I never even knew what it was.  With the weakness, muscle issues I had....I was more thinking along lines, MS, ALS, Parkinson's...but no that my brain had timed out!. 

In the end, everyone is different in their presentation....and everyone comes in their answers differently.  I know when doctors first say autism in terms granddaughter....I could no believe...what my granddaughter was, and what my image autism was, was 2 different things.  But the more I looked up, the more videos I saw kids her age....the very early young years....the more it became clear and undeniable me.  The lack of eye contact was no because we were failing keep her attention or weren't working hard enough....it was actually a classic sign.  In the end, her dx, was such a relief us.  And, in a way, the dementia dx was a relief (momentary)...and validation...I wasn't crazy, it wasn't all in my head....it was nice know that there was, in fact, a reason why my tasks were now so hard do.  It a crap reason....but it still nice know. 

<3

 

 


Andy59
Posted: Tuesday, January 10, 2017 3:51 AM
Joined: 12/30/2016
Posts: 75


Thanks for all the excellent feedback, as you gave me much to think about.

I found out yesterday, the place that was going to do my PET scan, does not do the type of scan I needed, so had to cancel. Hopefully I will get the scan within the next few weeks.

This forum has been a blessing for me, and for my wife who has been reading all the care taker posts.


The_Sun_Still_Rises
Posted: Tuesday, January 10, 2017 1:17 PM
Joined: 7/24/2015
Posts: 3020


Ugg, that sucks....best luck finding place that will do the scan you looking for.

<3


Andy59
Posted: Tuesday, January 10, 2017 2:39 PM
Joined: 12/30/2016
Posts: 75


It just got worse. My insurance just sent me a letter saying they only approve certain scans, but not the one for Alzheimer's. Maybe I will ask for a spinal tap.

"Sun" If I may be so bold, and at the same time show my ignorance, but I'm simply amazed how well you communicate on this forum, and yet you are stage 6. It changes my whole perception of what could be down the road for me. Is posting on here easier for you than verbal communication? I'm clueless, and anxious to learn from you and others. I've read many of your posts and I like the fact you chose to look at the "window" with a cheerful attitude and not one of "why me". I pray if ever I'm where you and others are, that I can maintain such a positive attitude.


The_Sun_Still_Rises
Posted: Tuesday, January 10, 2017 4:32 PM
Joined: 7/24/2015
Posts: 3020


That pretty typical....some places seem cover it and other places no (as reported on here).  I sorry they no willing cover it. 

The spinal pretty invasive so make sure you order all the umpteen tests so you no have repeat it. 

Neither of the two are needed for dx.  But inquiring minds like know, I know. 

Thank you for you kind words.  

My saving grace, I think, was I was dx'd no knowing anything about dementia, and so I got freedom decided how I was going deal with it BEFORE I joined the forum....in short, no one gave me a pre-scripted way I am supposed BE with it....so I got create that for myself with no image how it is suppose be my mind.  I try my best preserve everyone's ability create that for themselves as well.  We, no they, get write our futures with this!

 

It CAN BE easier for me communicate online in writing...both have their pros cons.  In person, I less misunderstood and more readily welcomed.   That said, I think it deceptive my abilities now...as I used be a author, teacher, and speaker... and I am very much less able than I used be.  I'd like think that if you knew who I was before, who I am now would make perfect sense in the progression things....but that may be my optimism speaking. 

That said - you are so right, that so much is possible for us...so much more than the world currently allowing us.  And you should never give up hope on you self no matter what dx come.  We do no real highlight them here (and I am no sure why)....but there are so many great people with who have contributed powerfully this world and us....like the late Richard Taylor, or Christine Bryden who still going strong, or Kate Swaffer.  They are VERY inspiring.  The first book I read, before come on here was Christine Bryden's Dancing With Dementia....and it was she who made me feel like there was life after diagnosis....and a good life at that.  Now, some 20 years later, she is still lecturing!  And she have dementia and an extremely atrophied brain!!!! 

The brain an amazing thing....and like muscles, when you demand that they lift bricks will grow new muscles do it - you brain will find new and creative ways do a task if you keep demanding of it do it.  But so many just give up and give in....because that the pre-written script given them. 

I used give a example, metaphor in my talks....about the movie The Gods Must Be Crazy (and the coke bottle that the movie about)....and talk about if the gods dropped a bike somewhere no one had ever encountered a bike. They'd have no idea what do with it. That all it takes for the whole village suddenly wake up....is one person riding a bike down the road them suddenly get what do with the bike.

But I have be honest and add, I am less amazed by what I have been able do and hang on do....than I am hurt and disturbed by what people unknowingly and willfully give up, which shocks, hurts, and still horrifies me.  I am reminded a story, I think was Kahlil's....about slaves who put the crown back on their master's head.  I have no been able find that story again for years.  Or Plato's Cave.  But what were these stories....but stories of our human tendencies. 

We are no bound by chains those around us....if they jump off cliffs like lemmings, we do no need do same.  It ALWAYS easiest travel downhill...on the paths already cut by others....but we know where that leads and the outcome always the same.  I saw this, and I took the road less traveled by  - and it made ALL the difference. 

The best part....anyone can do what I, and others, have done...if free and open any and every one. 

<3


obrien4j
Posted: Tuesday, January 10, 2017 4:53 PM
Joined: 11/18/2016
Posts: 451


Michael- where can I find the ADLs that you mentioned in the last post?
Andy59
Posted: Tuesday, January 10, 2017 5:00 PM
Joined: 12/30/2016
Posts: 75


Thanks Sun. I really liked your post, and especially about not having a pre scripted idea on what path your were supposed to follow. Until a few months ago, I had never heard of MCI, or had any idea there were stages in Alzheimer's. I'm slowly getting educated, and I know how important it is have  as much information as possible.
The_Sun_Still_Rises
Posted: Tuesday, January 10, 2017 6:22 PM
Joined: 7/24/2015
Posts: 3020


It a bit of a learning curve, as it also fraught with - OMG it fatal! - mixed in there....which take a bit wrap you head and heart around.  And a year half ago, I was standing right there where you are...I though I had MS or Parkinson's or ALS or something...and I had no clue what dementia was (I thought crazy person pulling hair out in looney bin).  And you try like everything get a grasp on...ok...what can I expect, how this going go....and EVERY webpage you look at contain and it FATAL.  And you trail off....but my life....I was right in the middle....ok, wait, how is this going go...what can I expect?

Young Onset ALSO present inherently differently than older folks - and EVERYTHING out there written about older folks.  Many older folks may be ok with and happy be handed a paint brush and told spend their days imaginaryily painting the nursing home walls.   But for folks under 55, and under 50....the thought of spending time (conscious) in a nursing home decorated for the 80s....doing puzzles listening girl scouts singing - scares us. That just no who we are.  That no what we about.  And, I vaguely try imagine nursing homes cranking Evanesence or us playing mad games of hula hoop on the Wii, or Dance Dance Revolution, or mad games Candy Crush.  And I can no see it.   We all going want out computers and smart phones...and are they going have IT techs on hand help us that??

Some wonderful place in Australia lets us do our bucket list and takes us skydiving....but that in Australia where Kate Swaffer seeing we get our needs met.   

We want go shows, plays, see the orchestra....and be IN life...we'd probably be holding our own stand up comedy shows or baking contests.   We going need movie theater large screen TV's...the new UHD ones.  We want BE productive...no play at it. 

The whole entire word NO READY US....but we here....and like round pegs we being crammed these square holes told - hey buddy, you had better start fitting.  I truly ache for the Young Onset people that ending up Nursing Homes....cutting the way for the wave of us that coming. 

We learn what the word knows....and then conclude that it knows nothing. 

We contend ourselves that we have the best of the best medicine. 

Then we turn our attention how do they really care for us as we progress....and we freak out again (most people young onset want take their lives at this point - so it a real hard dark time people).  It then that I recommend write you Care Plan and End Of Life Wishes....as this when you really will know what there, why they do it, and what you want them do you most clearly.  Plus, you fear can fuel you writing. 

But after all that....there just you, and that the sun that still rises....and that you still progressing brain.  And the rest wide, wide open for you design....create....and play with as YOU see fit. 

Create Accordingly. 

And as hard as it is be told you going die, it is empowering as well....because, ok, so if this the last chapter one's life - *what* (out of all the possible smorgasbord things one could possibly choose from) are YOU going do with it?????

And the truth is....you free do ANYTHING at all....ANYTHING you want.  It a nice freedom. 

And, unlike die suddenly a car accident or heart attack....we get a chance live out the things we want do before die.  That a huge wonderful nice gift that dementia grant us. 

It just a matter perspective.

<3


Iris L.
Posted: Wednesday, January 11, 2017 12:47 AM
Joined: 12/15/2011
Posts: 18520


Andy, the Amyvid PET scan is part of a clinical trial.  My neurologist had to enroll me.  Ask your neurologist about the IDEAS study.



Read this:


Take Part in IDEAS Study: Offer Eligible Patients Covered Access to Brain Amyloid PET Scans to Clarify a Dementia Diagnosis


The Alzheimer’s Association, American College of Radiology (ACR), and Center for Medicare and Medicaid Services (CMS) have launched a four-year, $100 million research study to inform CMS coverage for brain amyloid imaging for the diagnosis and treatment of Alzheimer’s disease and other forms of dementia. The Imaging Dementia–Evidence for Amyloid Scanning (IDEAS) Study will assess the impact on clinical diagnosis and care management of using positron emission tomography (PET) scans to detect amyloid plaque in the brain. Amyloid PET imaging represents a major step forward in clinical assessments of people with cognitive impairment where the cause is unclear. Where once healthcare providers could confirm the presence of amyloid plaque only after examining the brain upon autopsy, PET imaging allows clinicians to visualize and accurately detect plaque in a living person. Information from this scan could help exclude underlying Alzheimer’s disease, and may help guide your management plan. 


“There is tremendous interest in this groundbreaking trial. Amyloid PET can be incredibly useful in assessing diagnostically challenging patients with mild cognitive impairment or dementia. However, patient access has been severely restricted by lack of reimbursement. Dementia specialists who participate in the study will be able to offer easier access to appropriate patients, and use amyloid status to refine their diagnosis and optimize the management of these individuals,” said Gil D. Rabinovici, M.D., IDEAS Study chair and associate professor of neurology at the University of California, San Francisco. “Participating providers also will help to amass sufficient data to assess whether amyloid imaging has a positive impact on patient outcomes that could lead to expansion of Medicare coverage for this important diagnostic tool.”


Geriatrics healthcare professionals can play an important role in this groundbreaking research. The Alzheimer’s Association and ACR are looking for geriatricians interested in becoming referring physicians for Medicare beneficiaries needed for their study. These collaborators (self-identified physicians trained and board certified in geriatrics, neurology, or psychiatry, who devotes 25% or more of patient contact time to the evaluation and care of adults with acquired cognitive impairment or dementia) will team with PET facilities and with trained radiologists and nuclear medicine physicians. Amyloid PET will be performed and interpreted at each PET facility, with results provided to the ordering physician for support in further decision-making captured for the study. Each referring physician practice will need to obtain Institutional Review Board (IRB) approval prior to participation.


For more information, click here or email IDEAS-Study@acr.org.

Modified On: February 25th, 2016

This is from:
http://www.americangeriatrics.org/press/listservs/wir_0226164272088/id:6188



Iris L.

 


Andy59
Posted: Wednesday, January 11, 2017 2:57 AM
Joined: 12/30/2016
Posts: 75


Thanks Iris. I see my Neurologist next month and I will ask him about possible enrollment in this trial.

Uh oh. I looked on line, and I'm not eligible. Participants must be 65 and above, and on Medicare. I'm only 59 and not on Medicare.

https://clinicaltrials.gov/ct2/show/NCT02420756

 


Iris L.
Posted: Wednesday, January 11, 2017 12:59 PM
Joined: 12/15/2011
Posts: 18520


I'm sorry, Andy.  Ask your neurologist about the Pittsburgh compound PET scan.  I think it is different from the Amyvid PET scan.


Iris L.