I have recently come to the conclusion by talking to the local alzheimer's group that my H has had this the whole time I have been married to him. She said that some women will actually divorce their husbands thinking that they don't love them. My question is it possible that a person that has had LewyBody for 16 years + could actually not show any physical deterioration until the very end? It is such a weird thought but I actually think it is possible. That would explain why I haven't been able to get any help from anyone because he isn't physically bad off.
I don't know about Lewy Body, but I know my DH had 'something' wrong for decades before strong AD symptoms came out. Everyone said, no, no, not possible, he was too young, just depressed, whatever. But I look back and see his behavior now in a different light. It was always there. Now people are starting to realize it's there for many years before someone goes to a doctor & then it may not be correctly diagnosed, but yes, it doesn't come on overnight. You could be right & many divorces have happened because of it. I send you strength & understanding. Betty
When my husband was diagnosed with Lewy Body, the doctor said it had been coming on slowly for many years. But my husband has had problems with attention, organization, and executive function since he was a child. I've done a lot of research trying to find out what genetic disease this might be, as our son has the same issues, but I haven't found one yet. I've collected what I know at: http://deeplanguage.blogspot.com/2012/12/adhd-and-parkinsons.html
I have said I don't know when my DH went from being a normal person to the AD. One seemed to slowly and seamlessly flow from one into the other. My Dh would of been a ADHD kids back in the day. I can see signs going back as far as when our youngest was born. Going back 16+ years.
We are looking at Alzheimer with DH. But I think in time they may find that some brains are just wired different from the start.
My Dh was go good with numbers and reports at work, could talk for hours about many subjects. But like you pamsc, he had problems with attention, organization along with personal relationships. No long term friendships, happy to be alone.
Deb, I think it is very possible. I know that I started noticing things well over 12 years ago. DH doctor is leaning towards Picks/FTD due to personality changes, and mood changes, among other things. I remember in the spring of 1999 when DH missed 4 days of work for an illness. for one thing, he never missed work for anything, and he just didn't seem to return to his old self following this illness. He also had a tick removed during this time period. The doctors have tested him for Lyme disease twice, Fibromyalgia twice, Anxiety disorder, etc. DH became more agressive with time and outgoing, which made him look more "normal" to others than he was normally.
blue,I think what you said about their brains being wired different from the start is very likely the way it is.Something always seemed a little off with Dh.Looking back there were clues about 20 years ago. My sense of direction was always very poor.DH.ALWAYS had a good sense of direction.My The first thing I remember is him not finding his way somewhere he had been to many times before.
DH has FTD (dx'd in 2008 at age 58) and now looking back at personality changes since 1999 I am sure he was in the beginning stages of FTD. It started getting really bad in 2005 and after 2 years of major personlity changes (I thought was a midlife crisis) I hadd made up my mind to divorce him. No one, not even me had a clue it was the beginning of dementia...he looked fine, was really like his regular self with others and had no memory issues. So yes Deb, I think it is possible your DH has had this a long time. I think mine has had it at least 13 years.
What I don't understand is if he actually had this for a lot longer than we thought shouldn't he be somewhere in a corner in the prone position as the last stage of this? The mortality rate is for most dementia's 8 to 20 years. Whether we knew he had it or not he had it and that is the point right? So doesn't the 20 years still apply?
Deb, The statistics for death from dementia are not reliable! Do not count on them!
The "average age of onset is 73" but how do they even know that because there is no specific diagnostic criteria to say when it started and there are not any standardized criteria to even say how it has been diagnosed!
Also putting 'dementia' as a cause of death on a death certificate has happened only in the last decade or so. 20 or more years ago the number of people in the USA who 'died from dementia' could be counted on two hands.
But if you take the age 73 as an average then you need to factor in the fact that the typical dementia person also has a 73 year old heart and 73 year old lungs and 73 year old, rest of their body. SO how long does a 'healthy' 73 year old have to live?
Now take the statistics and apply them to us younger onset dementia people and try to guess how long the dementia will take to kill a 50 year old heart or a 60 year old body . . . .
LFL is dealing with FTD. That is even harder to diagnosis than Alzheimer's. (there are even fewer tests and exams) And then try identifying 100 or 1000 people who have died from FTD to try to determine how long before you die from it??? There just isnt enough data available.
It all adds up to complete guesses at this point in medical history.
Wow! so then we can't even say the Alzheimer's is what killed the person in the first place. Like my father in law, he had Alzheimer's(we think) but the death certificate said cardiac disease at the age of 85. Another example would be I die and I had fibromyalgia and osteoperosis but...the reason I died was cardiac disease because I just happened to be old. The other issues were just things that I had.
deb, my father-in-law died at age 83. He definitely had dementia (family was in denial). When the treating physician was asked what he died from the answer was "old age. his organs just stopped working." I think many older people are given that or something like cardiac arrest as the reason for death on their death certificate. So like m-man says, the record keeping has been inaccurate and we can only guess. FYI, my husband saw a consulting geriatrician a few weeks ago and he told me your husband could live another 20 years given his good health and age (62). I know I cannot do this another 20 years.
When I was in nursing school in the late 1980s we we specifically told that "nobody ever dies from Alzheimers(!) they die from pneumonia or something else".
My Greatgrandmother died in 1962. All the family stories describe dementia. (confusion, wandering etc.) I pulled her death certificate and AFTER MANY YEARS IN A NURSING HOME (another clue) her death was listed as cardiac arrest from altherosclerotic heart disease. . . .
Birth & death certificates are called "vital records' or 'vital statistics'. People coorelate what was written and release trends. This is why "heart disease" is called the #1 killer in this country AND why the American Heart Association is in a position to say that they need more money because they are going to stop the #1 killer.
Only recently did the medical community agree that you COULD die from dementia and began listing it on death certificates. Guess what happened? Suddenly Alzheimer's disease shoots up to become the #5 leading cause of death in the USA(!)
This of course becomes something that the Alz Assoc can now use to solicit more funds in an effort to decrease the deaths from this terrible disease. . . . . Politics are everywhere.
Mary in Montana, my brother picked up a tick while hiking on the Appalachian Trail. He did get Lyme disease and in no time at all was diagnosed with Multiple Sclerosis. Those ticks are nasty little critters.