RSS Feed Print
To Myriam
Iris L.
Posted: Wednesday, March 14, 2012 1:09 AM
Joined: 12/15/2011
Posts: 16579

Myriam, on the Caregiver board you described  yourself as a "warrior for AD."  That's wonderful for you, but some of us cannot be warriors. 


Although I have been on these boards for three years and on memory meds also for three years, my neurologist has not diagnosed me as having dementia.  At my last visit in December he insisted my diagnosis is NOT dementia.   


When I first had to leave my pediatric medical practice in 1987, I was told I had a nervous breakdown.  So people who knew me have always had a stigmatized view of why I am no longer a physician.  It has been rough for me to try to explain to people why a gifted medical practitioner gave up all that she had worked for for so many years seemingly without a good reason.  I had developed amnesia but I could not say that. 


In three days I have to go to court.  I am being sued for back homeowner's association dues.  This is not a complicated case.  The problem is that I have trouble handling my financial affairs because  of my mental status.  But I feel vulnerable saying this in public.  I told my former PCP what was happening, and he told me I had no excuse because I CHOSE not to pay the homeowner dues.  He thinks I'm just a flake trying to get out of a debt. 


I don't have a clear diagnosis to tell anyone.  Even if I did, I do not want to boardcast my vulnerability.  I believe people will come out of the woodwork to take advantage of me if they were CERTAIN I had a definite brain disability.  Unlike you and other patients, Myriam, the people around me have been hostile and demeaning.  I won't tell them anything about myself.  I can tell them about lupus because they know other people who have lupus.  Lupus is common. 


The doctors have been worse.  I've been called malingering, not wanting to get well, nothing wrong with me, among others.  Although all doctors are aware that I am on Exelon patch and Namenda, not a single one of them says anything about it.  No one asks me how I am doing.  The only complaints I bring up now are about pain, which I still have a great deal of  because I just discoved only in September 2011, just six months ago, that I have a rare genetic and progressive and incurable arthritic condition. 


Even the Alzheimer's Association does not want me in their local chapters because my diagnosis is not Alzheimer's.  I'm alone in my as yet undiagnosed dementia (except for the message board members, of course).  That's why the losses on these boards were so devastating to me, because this is my ONLY support system. 


I would love to be a warrior.  But there are not enough PWCINOS for me to warrior with.  It's not that I want to have Alzheimer's.  But I don't have an explanation for my adult ADD symptoms.  


Myriam, I think it's wonderful that you can use your Baby Boomer radical skills to advocate for Alzheimer's patients, especially EOAD patients.  Do as much as you can while you still can, because gradually you will not be able to. 


Iris L.   

Posted: Wednesday, March 14, 2012 2:14 AM
Joined: 12/6/2011
Posts: 3326

I'm so sorry, Iris, that you aren't receiving the necessary support you need and deserve. Yes, being alone is a challenge, and so is not having a clear diagnosis. I also live alone and am making all necessary arrangements while I can. However, I like to think that the progression is probable, but not inevitable. ;) winking  Ever the optimist!
Iris L.
Posted: Wednesday, March 14, 2012 8:02 PM
Joined: 12/15/2011
Posts: 16579

It's good that you still have the strength to advocate for yourself and others,  I feel like the strength to advocate has left me.  We need warriors on our side. 


Iris L.