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I went to a seminar this week
Iris L.
Posted: Saturday, March 16, 2013 3:04 PM
Joined: 12/15/2011
Posts: 18719


I went to a workshop on "Alzheimer's Disease and  Other Dementias: What Does the Diagnosis Mean?"  The workshop was given at an Alzheimer's Disease Research Center by well-knows experts in the field.  The talk was about the progression of MCI to AD, and also about dementia with Lewy Bodies and Fronto Temporal Dementia.

They are doing a research study involving following persons with normal aging and MCI and obverving for the development of dementias over time.  At the end of the workshop they asked for participants for their study. 

I spoke with one of the researchers and asked if she could tell me about the prognosis for people with my type of cognitive impairment, possibly related to a immune disorder.  She told me she had no information at all about my type of CI. 

I was very surprised, because I would think if they are dealing with patients with MCI there must be some with an immune disorder among them.  She did not seem to have intellectual curiosity about my type of CI.  I felt discouraged when I left the workshop.

I feel rejected by the higher ups in the dementia world.  The lupus people don't know what to make of me.  The psychiatrists and psychologists don't know what to make of me, either.  The only place I feel any sense of fitting in is on this message board.

My dx is CI nos.  I have to explain it to every doctor I meet because they don't know what it means.  I'm getting discouraged by this.

Iris L.

Myriam
Posted: Saturday, March 16, 2013 3:49 PM
Joined: 12/6/2011
Posts: 3326


How very frustrating, Iris!  I think we may have been born  a little too early.  There is very exciting brain research that is finally being funded in a significant way.  Guess we need to hang in there and hope we can reap the benefits from the research.
Mimi S.
Posted: Saturday, March 16, 2013 4:03 PM
Joined: 11/29/2011
Posts: 7027


Iris,
Unfortunately, Myriam is correct. In my opinion, we have learned more about dementia and the brain than we knew in the eons before that.

Iris, you are doing wonderfully well at coping with your problem. You and I are still living by ourselves and coping. Maybe we'll have to be content with thanking the Lord.



Iris L.
Posted: Saturday, March 16, 2013 4:57 PM
Joined: 12/15/2011
Posts: 18719


You're right, Mimi.  I thank God every day that I can still live independently and that I know my own mind.

Myriam, I'm not thinking about research.  I feel discouraged because I have no professionals in the real world that I can talk with about my condition.  Everyone denies that I have a cognitive impairment.  They go on and on about depression.  If I have depression, it's because no one acknowledges what I am dealing with.  I feel so alone.

Iris L
.
ilovemygrey
Posted: Saturday, March 16, 2013 7:22 PM
Joined: 1/30/2013
Posts: 66


hi Iris.. my Doctor, who is a neurologist, put me on mild anti depression medicine.. I take  1 pill at bedtime.. I have to wait for 5 weeks to see if it helps my depression.. I am depressed about my diagnosis.. I am 60, not 75 or 80 with Mild Cognitive Impairment. I am married and my h does not realize how this makes me feel , really.. he is a trucker and did not even realize anything was even wrong with my memory.. my girlfriend noticed it 2 years ago, and brought it to my attention. I went to my family Doctor, and he sent me to my neurologist. I did have Exelon  patches for 1 mo.. they did not do any good for improving my memory. So, that is when my Doctor put me on depression medicine. My doctor does not know why I have this at all. does that sound  ok?   LisaC
Iris L.
Posted: Sunday, March 17, 2013 1:55 AM
Joined: 12/15/2011
Posts: 18719


Lisa C, the fact that your MCI did not respond to Exelon patch might be a good sign.  Depression can mimic dementia.  Remember, most people diagnosed with MCI do not progress to full-blown dementia.

Do you get out of the house at all, Lisa?  You must have something to look forward to.  It's vital for your brain.

How often does your DH get to come home?  Can you take with him while he is away?  Keep the lines of communication open, Lisa! 

Iris L.

Mimi S.
Posted: Sunday, March 17, 2013 9:26 AM
Joined: 11/29/2011
Posts: 7027


Lisa C,

 

May I ask what was the process of your diagnosis? Did you have a neuro-psych that lasted several hours? What were your strengths and weaknesses?

And daily exercise is so important. Do you get that heart pumping hard several times a week.

Are you still employed? If not, please seek out volunteer opportunities in your area.

What are you doing to use your mind? What's on your bucket list of things you always wanted to learn?

Check out Mediterranean diet. Can you gradually move towards that kind of diet?


Please do stay in touch.


Johanna C.
Posted: Sunday, March 17, 2013 9:49 AM
Joined: 12/9/2011
Posts: 13693


Iris; I am so very sorry for the lack of interest by the specialist at your seminar; BUT, that being said, this was probably the research group presenting the study AND their primary goal seems to involve reaping candidates for their study as seen by their reaching out for research candidates at the end of their program.

 

Not the best place.

 

I wonder about the Mayo Clinic sometimes; they do seem to have fine, multidisciplinary, integrated teams with much communication amongst the professionals and right back to the patient who is usually kept very involved as part of the team. 

 

One would find the best outcome by being in a well-known center of excellence; not just a large center in one's city, but by national or international renown.  Why not ask the Alzheimer's Assn. which entity is the largest and doing the most in the U.S.?  Then, if you had the budget to fly there for consult (best case scenario) or could interface by phone, you may get some insight. 

 

It sounds as though you were simply the person at the end of a marketing speil in the guise of a seminar and the "expert," from your writing, sounds as though she was no more engaged or knowledgable than other lightweights you have seen in  the past.

 

I am sorry.  I too would want to know.

 

Johanna C.


Iris L.
Posted: Sunday, March 17, 2013 3:24 PM
Joined: 12/15/2011
Posts: 18719


Johanna, this was not a marketing ploy.  This workshop was put on by the only Alzheimer's Disease Research Center in Orange County, CA.  It is a very reputable group.  They just aren't interested in me.

I'm not going to do any more travel for my diagnosis.  I'm going to stay on the regimen I'm on and continue with my neurologist, who is the only professional who seems to understand me.

Iris L.

ffwife54@yahoo.com
Posted: Sunday, March 17, 2013 3:59 PM
Joined: 4/15/2012
Posts: 247


So, i'm curious IRIS did they give any data on the conversion rate of MCI to Alz, or other dementia's? Did they tease out the different types of MCI? And the role they play? Did they touch on genetics at all?

 

I was on a conference call that was supposed to be on EOAD and MCI but very little was said about MCI and my question never made it out of the que.

 

They too were seeking volunteers for the new rounds of meds that are coming down the pike,,,,I'm not adverse to research and putting myself out there but I was disapointed in  the lack info on MCI. I'm beginning to think  MCI is a catch-all phrase for those of us that don't meet the defintion of "clinical dementia" its kind of like we are in a holding pattern...very frustrating. This Spring was my third year of Neuro testing and  the Dr wrote "meets the research criteria for MCI, nonamensic dyexecutive type? Meets the research criteria?? geesh what the heck kind of diagnois is  that?

 

 


Iris L.
Posted: Sunday, March 17, 2013 5:54 PM
Joined: 12/15/2011
Posts: 18719


ffwife, according to these people there is a continuum of cognitive functioning between normal, MCI and AD. 
With MCI, a person 
 

    --frequently forgets names of people and is slow to recall them 

    --frequently misplaces items 

    --has a noticeable difficulty with word-finding 

    --may temporarily become disoriented to place or have trouble understanding a map

This contrasts with the person with AD, who
 

    --may not remember ever knowing a person 

    --forgets what an item is used for, or puts it in an unusual place 

    --loses language skills and withdraws from social interactions 

    --easily disoriented to both place and time; sometimes lost for hours even in familiar places.

The prevalence of MCI increases with age.  Cognitive impairment without dementia or MCI increases with age and affects 21% or more of persons age 71 and older. 

Approximately 5.4 million people in the US have MCI which is similar to the number with AD (5.3 million).

With MCI there is relatively normal general cognitive function and preserved activities of daily living.

In their studies, the conversion rate from MCI to AD was 12 % per year, compared to the conversion rate of normals to AD, which was 1% per year.  The results from this study, which was done in 1999, only measure four years of follow-up.


They also described "flippers" who are people who convert from MCI to normal, and back to MCI.  They flip back and forth between MCI and normal.

MCI/CI is a definite stage between normal and dementia.  It is a holding pattern, which may drift in one direction toward dementia or in another direction toward normal.  Or may remain the same.  We have to accept this and do the best we can to make the most of what we have now.

What we can do to be proactive is to identify risk factors and reduce or eliminate them.

Iris L.


ffwife54@yahoo.com
Posted: Sunday, March 17, 2013 6:05 PM
Joined: 4/15/2012
Posts: 247


Thanks Iris,it  sounds like they didn't discuss the 4 different kinds of MCI, and i find it interesting that I don't fit there definition of MCI-- from what your telling me....oh well. Onward we go