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Clinical Trial starts
Abuela
Posted: Tuesday, October 2, 2012 4:25 PM
Joined: 6/24/2012
Posts: 605


Hi everyone.  Tomorrow I go for the screening to see if I am acceptable for the 

 

clinical trial.  It will be a long day.  If I 'pass' then I go back on Thursday for another 

 

screening.  If I pass both... then I continue and go on with the clinical trial.

I am early onset, early stage with MCI.  Keep your fingers crossed.


Myriam
Posted: Tuesday, October 2, 2012 9:33 PM
Joined: 12/6/2011
Posts: 3326


Looking forward to hearing about how it went for you.
mish
Posted: Wednesday, October 3, 2012 8:24 AM
Joined: 6/21/2012
Posts: 439


good luck!
Iris L.
Posted: Wednesday, October 3, 2012 12:57 PM
Joined: 12/15/2011
Posts: 18513


Abuela, I thought your diagnosis was EOAD, not MCI.  I thought EOAD was why you were having so much difficulty at your teaching job and why you decided to retire suddenly.

Usually an MCI diagnosis means the cognitive difficulties don't interfere with a person's daily life.

I wonder what the clinical trials people will say about your diagnosis.

Iris L.

Abuela
Posted: Thursday, October 4, 2012 7:05 PM
Joined: 6/24/2012
Posts: 605


Hello Iris
I guess that I don't know the difference between EOAD and MCI.  
I asked the doc if it was EOAD and he said that from what he saw in my MRI that he 
would expect progression to AD.  He talked yesterday and used MCI
Yesterday I was tossed from the study.  I did no fit the criteria as I performed too 
well on the memory test.  Though it was marginal results, it was still too good for the study criteria.
He was frustrated because he has seen the damage and atrophy on the hippocampus and frontal and parietal lobes.  But the protocol will not allow the Pet Scan with florbetaphir unless I pass all the screening criteria...
I am not upset.  It is a good news/bad news thing, but they need people such as me with early symptoms and the one test tossed me out.  Oh well.  He is going to talk to them about this issue as they are having trouble nation wide getting people into this trial.  But for now, I am looking into other things.
I am still very able to carry on daily activities, but I have trouble with planning, sorting, adding, ... I can't sort laundry successfully.  I can't add a column of numbers with a calculator reliably.  ( I forget which numbers I have added and re add them again)  
I forget what objects are used for.  I forget that I just wrote something down and rewrite it. I forget that I just did something and then do it again.  I notice that the symptoms increase with any kind of stress or extra commotion in my life.
  I forget where I am going, but I do not get lost.  I just wind up 5 miles in a different direction before I realize that I was not intending to go that way.  I forget to pay the clerk in a store.  I just stand there and he asks if I am going to pay.  Stuff like that that could be overlooked easily as "senior moments" .But with the atrophy and hippocampus, we know better.
I forget which way the door opens.  I can't remember which bottle is shampoo in the shower... 
I write down the last letter of a word first and then try to fill it in.  I speak opposite words than my intent.  I hear it and see it most of the time and correct it, but sometimes I don't. 
I break down in tears several times a day.  No real reason.  I might be discussing the Presidential debate and suddenly I get all choked up.  The emotion does not match the topic.  When I should feel sad.. I don't always feel that way.
So whatever it is called... it is early stage and scary.  But I am grateful to know what it is and grateful to have this time before it worsens.  I feel lucky.  I really do.  
Thanks for listening to my rambling.  

Iris L.
Posted: Friday, October 5, 2012 5:17 PM
Joined: 12/15/2011
Posts: 18513


Abuela, you and I seem to have a lot of the same behaviors, although I don't have the emotional lability that you experience.

The line dividing MCI from EOAD/dementia is fluid, meaning there is no precise point.  Nevertheless, I believe neurologists do consider seeing changes in the brain on MRI or other imaging studies as evidence that there is degenerative brain pathology that is causing the symptomatology.

Since there is no cure, there is medication that can help with functioning and memory.  This, along with Best Practices and additions like aromatherapy, will help us.

I've often thought there should be more studies done with people like us, who are on the borderline.  Why aren't there?
 

 

This afternoon I ran into my neurologist at the medical building my medical group is located in.  My neurologist is affiliated with a Clinical Trials group in the same building, on another floor.  He had referred me for a specific clinical trial last spring, but the researcher refused me for some reason I can't remember now.

I think EVERYONE diagnosed with MCI or CI should be in a clinical trial to see what develops over the next 5, 10, 20 years.  What helps?  What doesn't help?  Inquiring minds want to know!

Iris L.
 


Geegee
Posted: Sunday, October 7, 2012 5:55 AM
Joined: 11/29/2011
Posts: 514


Iris & Abuela, I agree that it would be so beneficial for you to be in studies.  As we bring more awareness to the public about early symptoms, we will need more studies and data.  


Abuela, which clinical trial were you being considered for?


Even being diagnosed with EOAD, I don't think I would qualify based on testing.  Since I started the meds 2 yrs ago, I function better.  Yes, that's terrific news, but it may be the case for many who follow Best Practices that we will be rejected for the same reason.  


Let us know if they have another trial they are considering you for.


Iris L.
Posted: Sunday, October 7, 2012 12:33 PM
Joined: 12/15/2011
Posts: 18513


Geegee, right now the clinical trials are being conducted on medicatons. 

We need a clinical trial that will let us know the results of following Best Practices over the years, including using aromatherapy. 

Until then, we on this board will have to use anecdotal evidence regarding our own experiences and performances.

Iris L.

Lane Simonian
Posted: Sunday, October 7, 2012 12:41 PM
Joined: 12/12/2011
Posts: 5159


Amen, Iris!
Abuela
Posted: Monday, October 8, 2012 2:10 PM
Joined: 6/24/2012
Posts: 605


Thanks for your support everyone!  

The trial was for a drug to work on the proteins that form the amyloid.  I think.

 


Mimi S.
Posted: Monday, October 8, 2012 7:17 PM
Joined: 11/29/2011
Posts: 7027


Abuela,

 

I agree that the distinction between MCI sand AD is very wavy. The Early Onset part just means you were diagnosed before the age that most are. I think we draw the line at 65.

 

I have a proposal for a study:

Take a real person, either already diagnosed as MCI or Very Early Stavge AD.  Hide the name and any identifying facts such as nationality, residence etc. Give all the findings: physical, blood, neuropsych, brain scans to at least a hundred neurologists specializing in dementia and also an equal number of gerontologists.  How similar are the findings? Give the mean, median and mode of each group. 

I'd bet the findings will vary. How much would be interesting. 

If you are diagnosed as MCI, it is true that you may develop into AD or other related dementia. On the other hand, I do believe that it is accepted fact that not all MCI's develop AD.

 

Your list of problems I'd say is more than mild. So how was the decision made in your case?


In my case, I still live by myself, which by some definitions gives a diagnosis of MCI. When I asked about this, later, the difference in score between where I should have scored and where I actually scored was pretty wide. The tester said, "I would not call that difference mild!."  An opinion?



Abuela, please do continue to try to get in clinical studies. Lisa 428 is our poster child for that. She has already been in several.


Abuela
Posted: Thursday, October 11, 2012 6:29 PM
Joined: 6/24/2012
Posts: 605


 

 

Your list of problems I'd say is more than mild. So how was the decision made in your case?

 

I had symptoms that doc was ready to blow off.  But when I mentioned having had any MRI a few years ago, he pulled up the report and saw that it showed atrophy and a shrinkage of hippocampus. 

 So he decided to do a new MRI and the results showed that I had progressed and was showing signs of what he would expect to be the brain of a person with AD.  Of course without my brain in his lab or on his desk... he can't be 100% certain, but he has seen enough to know that is what he is looking at.

 He recommended clinical trials right away.

I will keep trying but am taking a hiatus from it for a few weeks.


Iris L.
Posted: Thursday, October 11, 2012 8:32 PM
Joined: 12/15/2011
Posts: 18513


Abuela, it seems as if your doctor is recommending that you enroll into a clinial trial as a means of treatment.  Again, the medications don't cure but they can help you function better and allow you to enjoy your life again.  I was in misery before I began my medications.

I hope you can find the right program for yourself.  Please let us know how you are doing.

Iris L.

Abuela
Posted: Wednesday, October 17, 2012 7:13 PM
Joined: 6/24/2012
Posts: 605


Iris,

On the contrary, the doc was completely upfront that in no way would the clinical trial be a cure or treatment.  Sorry if I gave you that impression.

I did find another trial and some that are starting in January that I am on the waiting list for. 

For me, clinical trials are a way of having some control over this disease that I have no control over.  It makes me feel as if there is something I can do about it at least.

 

But I am enjoying not working and having the time to do what I love to do and to "get through the day" without the stress of making so many mistakes on my job.  

Each day brings a new joy and a new surprise.  Some days I even forget that I have this disease and those days are blessed.

 


Iris L.
Posted: Thursday, October 18, 2012 12:15 AM
Joined: 12/15/2011
Posts: 18513


I'm glad you are enjoying your retirement, Abuela. 

Remember, medications may help you function better.

Iris L.

bela
Posted: Tuesday, October 23, 2012 12:19 AM
Joined: 12/15/2011
Posts: 4122


Hi

I wouldn't tell anyone of your diagnosis either....why?  Just two important people in case they need to intervene in some way,  

I think this is a great idea.


bela
Posted: Tuesday, October 23, 2012 12:21 AM
Joined: 12/15/2011
Posts: 4122


Hi Again, 

I wanted to ask if the doctors were able to to identify which stage you are in with EOAD?

Was it you or your husband who noticed something was amiss?

Thanks, 


Abuela
Posted: Wednesday, October 24, 2012 2:22 PM
Joined: 6/24/2012
Posts: 605


Bela to answer your questions

 

I have told 3 close friends and my children.  I think that it is important to have people besides my husband to talk to about this.  And he needs someone besides me to talk to also.  He has the kids, but he needs someone to just talk with.

 

I was the one that noticed the changes.  I could not remember how to open the shower door.  I had difficulty writing correctly, speaking correctly and doing simple arithmetic.  I thought I was losing my mind.  Turns out I was sort of correct.  

Doc cannot tell how long this has been going on or how fast it will progress.  If I could get a Pet scan it might bear more info.  But insurance does not cover it at this point and since there is no cure....

But since stopping work I feel much better.  I have less to juggle and more time to devote to doing things and seem to make fewer mistakes.  

For now.

Lately, I have noticed that my reading is having some issues.  But I still read profusely.  Thanks to the man upstairs it seems to be progressing slowly, but then again, I don't know what slowly means.