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My Story - Question
Topdogjim
Posted: Saturday, July 23, 2016 8:28 AM
Joined: 7/14/2016
Posts: 20


I posted a long question on the I have Alz board. I wanted to ask a question here. My medical code was f20.80. 

Not sure what that means as it seems everything is confusing with this illness. My short story and question is as follows. I'm 59 years old and have suffered with depression and major apathy for 20 years. During this time I have lead a good life and somewhat successful. I have however lived a lie in the apathy and memory department. I have little memory for any facts. I cannot remember any day or month birthdays of any of my 6 grandchildren (all under the age of six). I can not remember my parents birthdays or the day, month or year they both passed away. I just had to ask my with my duaghters birthday.  I have been getting lost while driving for years and years. I just keep driving till I find some place I know. My wife of 30 years enables me to remember everything and completes my sentences when I can not. Even the only side road that leads to my house of 12 years escapes me. I have driven that road a thousand times and just now had to list off a dozen roads in my head to remember it. 

I'm not working as I could not do my job anymore. I feel like such a pier about my life. Could my dementia have started 20 years ago?  

Jim


BillBRNC
Posted: Saturday, July 23, 2016 9:28 AM
Joined: 12/2/2015
Posts: 1018


Jim, sorry about your troubles. This isn't a great club to belong to, but there are a lot of people can help. I'm 65, with early onset Alz and Lewy Body Dementia. My symptoms started about 6 or 7 years ago, very slowly. Anyway, your question is about your situation, but I wanted you to know where I'm coming from. From what I know, there are many types of demential, many and maybe most start off as MCI mild cognitive impairment. The MCI can be around for many years and never progress, or it can progress into full blow dementia of some type. There are also other conditions that are treatable that can cause some of what you describe, so you need to check that out. Personally, assuming you have dementia of some sort, I don't see any reason why it could not have started long ago, but others smarter than me will come along with comments. I read up on my problems, so when I stray outside that road, I'm just commenting on things I think I remember. Sounds like your wife has helped a lot over the years. You certainly deserve a real work-up, exam, tests, Pet Scan, and a real diagnosis. Good luck.
BillBRNC
Posted: Saturday, July 23, 2016 9:38 AM
Joined: 12/2/2015
Posts: 1018


Ok Jim, I have now gone and read your other posting on the other board. Seems like you have already received a fairly solid diagnosis from decent places. Depression frequently occurs in conjunction with dementia, after all it isn't fun having dementia. I take Celexa, which helps, but I'm not depressed, but I have some mood and other issues due to Alz and LBD. I too have a complicated dementia, but they only found out by giving me a Glucose Pet Scan. I'm on Medicare, and Medicare paid for it. If you have a qualified doctor, I don't see how the insurance company can refuse if he/she recommends it as important to diagnosis and treatment. For me, having LBD means that certain medications frequently used for Alz problems can't be used on me. They were surprised to find the LBD, but it only came up with the Pet Scan. The other testing suggesting that something else might be involved, so that is why I got the Pet Scan. I don't think life is over with Alz or dementia. It just isn't what it used to be. You need to get your financial, estate, and other affairs in good order as soon as you can, and anticipate that driving will become a think of the past before too longer. Me, I got a service dog just a week ago to help me with lots of stuff. By the way, LBD is also known as Parkinson's Dementia, so I have the Parkinson-like stuff in my future as well. Good luck to us all, but you have come to the right place for advice and understanding.
Topdogjim
Posted: Saturday, July 23, 2016 11:11 AM
Joined: 7/14/2016
Posts: 20


Unfortunately Anthem BCBS will not cover the pet scan. The head of the memory disorder clinic went all the way up to the peer to peer level of appeal. They did think that maybe the memory clinic at Yale will be more successful with getting it approved. Thanks for taking the time to respond Bill. Have a great day. 

Jim


Iris L.
Posted: Saturday, July 23, 2016 2:23 PM
Joined: 12/15/2011
Posts: 16610


Hello, Jim.  I posted a long response to you on your initial post on the I Have Alzheimer's board.


Yes, dementia can begin twenty years or so before signs are apparent to others and an actual diagnosis is made.  The trend is towards earlier diagnosis.  Treatment seems to be more effective the earlier it begins.


Iris L.


Topdogjim
Posted: Saturday, July 23, 2016 3:03 PM
Joined: 7/14/2016
Posts: 20


Thank you Iris.
llee08032
Posted: Monday, July 25, 2016 9:06 AM
Joined: 5/20/2014
Posts: 4405


I started manifesting symptoms in my late 30's. My neurologist disagrees with this but he didn't walk in my shoes. 
Iris L.
Posted: Monday, July 25, 2016 12:23 PM
Joined: 12/15/2011
Posts: 16610


Five years before I had to stop working at age 37, I had a major memory lapse that was noticed by other people.  I was completely well at the time, took no medications, and had no other problems.  It was an isolated memory lapse for at least another five years.  I think something begins to happen to us many years prior, but we are not aware of the significance.


Most doctors work with PWDs who have anosognosia, so they cannot relate their early memory history too well.  But if their family members can look back through the retrospectroscope, they may become aware of some memory lapses that were overlooked or attributed to stress or other causes.


Iris L.