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Hi everybody! (an introduction)
John50
Posted: Monday, July 9, 2012 4:04 PM
Joined: 3/14/2012
Posts: 140


My name is John and I live in central Iowa. I haven't posted here before but was active for a while on the FTD support forum when it was believed that I had atypical FTD. Dr. Boeve at Mayo in Rochester and my local neurologist both believed that whatever I suffer from,Dr. Boeve determined that it was medically undeniable that I had some form of dementia, was the same thing that my father suffered from in very late stage at the time of diagnosis which was first in 2008 and then with Dr Boeve in 2009. My father passed away from the disease in March 2010 and I arranged to have his brain donated to N.C.R.A.D. which is National Cell Repository for Alzheimer's Disease at Indiana University. They are a clearing house of sorts for researchers to get biological specimens for research. I had already provided them a blood sample from myself but had not yet got one drawn on my father when he passed. Anyway, I was told I would never get any information, that this was just for research. Then out of the blue I got a full autopsy report on his brain last fall and it showed he passed away from Alzheimer's Disease. The reason they could not put a name to what I had was that at the early stage I am in the scans do not look like anything they normally see according to Dr. Boeve. So now with the information that my father died of Alzheimer's my diagnosis has been changed to atypical Alzheimer's Disease. I don't have much trouble with short term memory yet, not that I don't have some irregularities but nothing that causes any big problems. My problems are mostly to do with executive functions. I can't multitask, time management is horrible and things like calculations in my head that used to be simple are now difficult. All things that led to me having difficulty at work with things that used to be simple which then led to my first diagnosis. I haven't really worked full time since early 2008. I am on long term disability from my employer and SSDI which they deduct from my benefits. I have been very active as an advocate for my local Alzheimer's Association chapter at the state and federal levels. I have been to the National Forum in Washington D.C, the last 3 years.

I am always happy to communicate with others and help in any way I can. If there is anything I can answer or help someone with please send me a message! I will try to make a habit of checking this part of the forum regularly. I signed up a while back but that was as far as I got, I didn't remember to actually check out the different parts of the forum. Happy to be here and hope to communicate with some of you!

John


Iris L.
Posted: Tuesday, July 10, 2012 1:52 AM
Joined: 12/15/2011
Posts: 18221


Welcome to our online support group, John.  I'm sorry you're here for this reason but I'm glad you came back to us. 

I have the same problems with executive functioning, with multitasking, dealing with numbers and finances, processing reading, and planning.  My diagnosis is cognitive impairment not otherwise specified, from systemic lupus and major depressive disorder.  No dx of AD although I have risk factors and family history.  I'm on Exelon patch and Namenda.  Are you on meds?
 

 

I hope you continue to post and share your experiences.  Don't hesitate to post on both boards, this one and Younger Onset AD also.

Iris L.
 


John50
Posted: Wednesday, July 11, 2012 2:10 AM
Joined: 3/14/2012
Posts: 140


Thanks Iris. I am on Namenda and Aricept. I will have to check out the younger onset, I didn't realize it was there! Still learning my way around here. Like I said I am going to try to develop a habit of checking this forum but it always seems like a major challenge creating new habits. Take care and hope to communicate again.    

Lisa428
Posted: Tuesday, July 17, 2012 12:38 PM
Joined: 12/5/2011
Posts: 795


Hi John50,

 

Welcome to the AD/related dementias alzconnected Message Boards.  I'm sorry about your diagnosis but I am glad you've found us.

 

Thank you for sharing your story.  This is a great place to gather information, make friends and get a lot of great support.

 

I was diagnosed with EOAD/Younger onset AD @ 53.  I am now 58 and doing fairly well.  I don't work or drive.  I can't multi-task.  I have visual-spatial problems but stil hanging in there.

 

I can still take care of myself and that is what is MOST important to me.

 

Please, keep posting to let us know how you are doing.

 

Have you called our toll free 24/7 Helpline?  800-272-3900.  The people are wonderful and very helpful.

 

Peace and Hope,

Lisa


Mimi S.
Posted: Tuesday, July 17, 2012 7:26 PM
Joined: 11/29/2011
Posts: 7027


John,

 

When you go to the DC Forum in DC? Do you go early and attend the  pre forum Dementia Gathering? If so, I may have met you there. Unfortunately, I get to talking with one person and so don't get to talk with everyone.

 

Myriam was also there last year.

 

We're glad you're back.


Lisa428
Posted: Tuesday, July 24, 2012 3:59 PM
Joined: 12/5/2011
Posts: 795


John50,

 

Where are you?  How are you doing?

 

Please, post to let us know how you are.

 

Peace and Hope,

Lisa


bela
Posted: Thursday, October 18, 2012 4:43 AM
Joined: 12/15/2011
Posts: 4122


Hi John,

I enjoyed getting your background and the info about the brain tissue donation.  its not easy donating a brain i am finding.

When you said your executive functions were troublesome what stage might you have been at if you know, and would that include making bad financial decisions.

I ask because my mom was diagnosed while with me in '07 ....she was a 5.  Two years previous she was living 10 min from my sister.  my sister claims to have told me something was wrong with my mom's brain.  There was too much family crap going on that i didn't pay much attention  mom was saying this and sister was saying that and it wasn't unusal for them to have two entirely different thoughts on a matter.

I am figuring mom was a 3 or 4 in the year 2005 when she was taken to a car dealership by my sister and BIL to buy cars for my sisters kids which were 17 and 18.  That was 1/2 of my mom's life savings.  I believe my sister took advantage of my vulnerable mother who was confused about the ramifications.  The first round of checks was signed by my BIL then they realized the bank wouldn't go for that so mom signed but she didn't fill out the money part or the date part....i wonder if writing the money part was too hard for her.

Mom offered to buy me a car in the same year but I said no, please keep your money you never know when....later years....etc etc.  I bought my own Honda that year with no help whatsoever from her.  

I am furious that my sister didn't protect mom's money particularly when she knew something was wrong with mom's mind.

Your opinion would mean a great deal to me and i will bear in mind it will merely be your opinion.  

How do you handle your finances.  

Hoping to hear from you.  


bela
Posted: Thursday, October 18, 2012 2:15 PM
Joined: 12/15/2011
Posts: 4122


did you all know there is a dosage of the exelong patch higher than 9.5   i think it is 13 or 13.5 or/........

just fyi


 
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