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Diagnosed with Dementia at age 49
aeiland
Posted: Saturday, January 27, 2018 12:36 PM
Joined: 1/19/2018
Posts: 8


My Neurologist told me to reach out to people on this site. 

I was diagnosed with dementia August 2017. They originally though it was early onset Alzheimer's, but my symptoms don't match up with Alzheimer's. My Neuro said I had some type of dementia but they are unsure if it will stay the way it is or get worse, because they don't have a clear picture of why.... 

I forget peoples names, what I want to say (even simple things) and I get very confused. I get turned around and sometimes don't know a familiar place. The strange thing about all of this is that I can tell you, I don't understand or know what is happening. 

Anyone here have similar issues? 

 


Iris L.
Posted: Saturday, January 27, 2018 2:29 PM
Joined: 12/15/2011
Posts: 18509


Welcome, aeiland.  I had the same type of issues at age 37 and I had to leave my medical career abruptly.  At that time, my diagnosis was depression/anxiety and remained so for ~six years, then my dx was changed to systemic lupus erythematosus.  In late 2008 I had extensive neurocognitive testing which revealed cognitive impairment.  My neurologist gave me a diagnosis of cognitive impairment not otherwise specified, and offered me a trial of antidepressants again, which did not help, then offered me a trial of Exelon patch, which did help.  I have been on Exelon patch since that time with good results in speech and memory and some executive functions.  


Before I began the Exelon patch, I got a second opinion at an Alzheimer's Disease Research Center.  It is a good idea to work with specialists, especially for the younger persons.  Also often, it will take some time for the full picture to come out, because dementia is a progressive disease.   The progression may be quick or slow, sometimes lasting over 20-30 years.  In other words, no one can predict the progression for any patient.


It is important to have a thorough evaluation to search for all possible causes of memory loss, such as neurologic deficiencies, hormonal problems, chronic diseases, cardiovascular diseases, old head trauma, and psychiatric disease.  An overnight sleep study in a hospital sleep lab should be done to search for sleep apnea.  Many commonly used drugs, both prescription and non-prescription, have memory loss as a side effect.  


For people who are still working, there are work accommodations that may help.  But it is probably better not to be too forthcoming with the employer because, even though there are legal protections, they can still try to find an excuse to fire you if they think you have Alzheimer's Disease, then you lose all of your benefits.  


 


Iris L.


BlueSkies
Posted: Saturday, January 27, 2018 4:22 PM
Joined: 2/24/2016
Posts: 1096


aeiland,

I was diagnosed with dementia in 2016 at 57 yrs.  They thought FTD, but now are not sure what I have.  Maybe Dementia with Lewy bodies.  But I am more or less like you at this point.  Dementia, not sure what kind.  I also have similar issues as yours, though I also have depth perception problem, balance issues and aphasia.  

Welcome to the boards.


Iris L.
Posted: Saturday, January 27, 2018 8:54 PM
Joined: 12/15/2011
Posts: 18509


One thing that is important to keep in mind is that there are many conditions that mimic dementia, but that might be reversible if caught in time.  Thus, treatment for these conditions should be implemented, even if it seems that they are unlikely.  This is especially true for the disease of depression, which is a great mimic of dementia.  A good treatment plan is at least a 3 month trial of aggressive treatment for depression, including appropriate antidepressants and cognitive behavioral therapy or other talk therapy.  It takes at least 4 weeks for the antidepressants to work, because they do not work immediately; they must build up in the system.  The dosage must be titrated upward to maximum effect.  Sometimes an additional or a different antidepressant must be included.  This may take about 10-12 weeks. If there is no improvement to aggressive treatment for depression, and no other diseases or drugs have been found to be contributory, the remaining diagnosis may indeed be presumptive dementia of the Alzheimer's type, pending further developments.  Even with a diagnosis of Alzheimer's disease, there are measures that can be taken to ameliorate the disease effects.


Iris L.


aeiland
Posted: Sunday, January 28, 2018 11:07 AM
Joined: 1/19/2018
Posts: 8


Iris- 

Thank you for your input! I am currently seeing Psych and will be getting an in hospital sleep study very soon. I have had a CT scan, meds have been checked for possible side effects, blood work has been done and I am currently on a memantine. I also have an auto immune disorder (Sjorgen's) and am on long term medical leave. This has been a roller-coaster of a ride and I just want someone to tell me what is wrong. 

 


aeiland
Posted: Sunday, January 28, 2018 11:14 AM
Joined: 1/19/2018
Posts: 8


Blue Skies - 

It is so nice to hear I am not alone with this. 

Thank you ~


aeiland
Posted: Sunday, January 28, 2018 11:25 AM
Joined: 1/19/2018
Posts: 8


Iris - 

I couldn't agree more, I have worked in the medical field about 25 years now and it hard knowing to much sometimes. 

I have never felt depressed until all of this started happening and my sleep has been just okay because I have so much going through my head now. Coming from being a very successful women to where I am now is very sad and I am trying to be okay with all of it. 

I have been to two different doctors that specialize in neurological testing in which I was referred by my Neurologist and one by the company I work for. The one doc that was paid by my company said I was depressed and had sleep deprivation, the other said dementia. I also see a psych that studies in neurological testing and she used to do the same tests for dementia, so this will help to have her input too. 

Then back to my neurologist and he along with one of his partners I see, feel that I have dementia. Trust me I hope and pray it's depression and sleep deprivation, but I leave it up to the docs. 

I feel as if I am struggling because I get so many different answers! 


Iris L.
Posted: Sunday, January 28, 2018 4:49 PM
Joined: 12/15/2011
Posts: 18509


Thank God for different answers!  I believe there are multiple causes for what ails us, for some of us.  I do believe that some of us may have classic Alzheimer's Disease, that has a fairly straightforward course of varying lengths of time.  But many of us have contributory factors that impact our cognition.  Each must be addressed and treated.  In my case, I have systemic lupus and antiphospholipid syndrome as possible causes. But they appear to be in remission at this time. I also have Sjogen's Syndrome, btw, also in remission at this time.  


So why do I have significant impaired executive functions and memory loss?  My neurologist is still searching for answers.  For some of us, we may never know while we are still living.  There is much overlap in conditions.  We just have to go with what we can find that works for us.  I have learned so much just from the other members here that has helped me.  Keep reading, aeiland, and I hope you will find answers for yourself.


Iris L.


Iris L.
Posted: Sunday, January 28, 2018 5:09 PM
Joined: 12/15/2011
Posts: 18509


Aeiland, I was also a successful woman in the corporate world, as many of us were.  Many were successful in other fields.  But everyone, whether with a high powered career or not, was living and enjoying the life he or she had before.  I have come to believe that there are two worlds.  One is the high powered, for lack of a better term, the Type A world.  The other is a less pressured, less intense Type B world.  The Type B world doesn't have to be less meaningful; in fact it is not.  It can be just as meaningful and fulfilling.  We have to adjust our thinking and make accommodations in order to have a fulfilling life.  I learned this from the other members on these boards, all of the other members, not just the PWDs.  I decided, when I was in a deep depression, that if I had dementia, I was not going out like a victim.  I was going to fight for my life and find fulfillment in whatever time I had left.  I find fulfillment in helping people who come to this message board seeking support.  I have been where they are.  I find fulfillment in other ways, too.  It is not easy at all.  It is downright difficult at times.  But it is possible.


Iris L.


TheSteven
Posted: Monday, January 29, 2018 12:17 PM
Joined: 10/11/2014
Posts: 167



Hi Aeiland ,

Do you have those dark dental fillings inside of your mouths? If you have them it may be the root cause of your issues since they contain 50 percent mercury and constantly release into the body. After losing my job I was diagnosed with Younger Onset Alzheimer's when I was 56. About a year after that, after much research, I had my mercury dental fillings removed. My conditions improved and now my diagnosis is mild cognitive impairment. I think my cognitive thinking is fine most of the time.

If you have these fillings, see http://amalgam.org/education/scientific-evidenceresearch/results-removal-amalgam-fillings/ or

http://www.fda.gov/ohrms/dockets/dailys/02/Sep02/091602/80027dde.pdf

I have more links to this type of information and videos about this in my July 4, 2015 blog entry at http://thestevenalztreatment.blogspot.com

There are lots of supplements you can take as well even if you don't have any amalgam fillings. They are in the books listed on my blog.


aeiland
Posted: Thursday, February 1, 2018 12:42 PM
Joined: 1/19/2018
Posts: 8


Iris, 

Thank you for your feedback and supportive words, it is so nice to see I am not alone and that I will be okay! 

 

Andrea. 


aeiland
Posted: Thursday, February 1, 2018 12:45 PM
Joined: 1/19/2018
Posts: 8


Steven - 

WOW that is pretty crazy and great info...

No I do not have any old fillings, they were replaced years ago. 

 


Iris L.
Posted: Thursday, February 1, 2018 1:47 PM
Joined: 12/15/2011
Posts: 18509


Andrea, I get the impression that you are still working.  Please be cautious about what you disclose to your employer.  Even though having a diagnosis of dementia is protected under the Americans with Disabilities Act,  you are still at risk for being fired or laid off, and then losing all of your work benefits.  You might want to review your file for reports of disciplinary warnings for poor work performance.  If so, you might want to consider taking short term disability leave of absence pending the completion of all of your medical and neurologic workup.  Once everything is completed, you will have a better idea of the direction to go in.  You may be able to return to work with accommodations, or you may need to proceed to long term disability leave of absence.  


Are you on any medications for your memory, such as Aricept or Exelon patch?


Here is some information about work accommodations.  See if you can adopt some of these accommodations for your own work situation.  In asking for accommodations, the employee does not have to disclose the nature of the disability.  You might consider legal advice before proceeding.

Accommodation Ideas for Cognitive Impairment

http://askjan.org/media/cogn.htm


also:

Accommodation and Compliance Series:
Employees with Alzheimer's Disease
http://askjan.org/media/Alzheimers.html



Please keep us updated on how you are doing, Andrea.


Iris L.

 


llee08032
Posted: Friday, February 2, 2018 6:37 AM
Joined: 5/20/2014
Posts: 4408


Welcome to the board Andrea! Love the smile
Mimi S.
Posted: Friday, February 2, 2018 10:47 AM
Joined: 11/29/2011
Posts: 7027


Welcome to our world Aeilad.  I was sure I had greeted you a few DAYS AGO, BUT I DON'TR SEE IT.

YOU HAVE BEEN GIVEN LOTS OF GOOD INFORMATION AND I HAVE NOTHING TO ADD.

JUST REMEMBER THAT THE HELP  LINE IS AVAILA1BLE 24/7 1-800-272-3900


llee08032
Posted: Saturday, February 3, 2018 10:13 AM
Joined: 5/20/2014
Posts: 4408


Thanks for posting the helpline Mimi. I think the # should be a permanent fixture on the board somewhere? I forget about the helpline and hate the that persons have to look it up.
Iris L.
Posted: Saturday, February 3, 2018 11:26 AM
Joined: 12/15/2011
Posts: 18509


The Helpline number used to be posted on every page.  Now there is a link for "Contact Us" that shows the Helpline number at the bottom of that page.  I agree, the Helpline number should be returned to each page.


Iris L.