RSS Feed Print
PET Scan Results(2)
M4P
Posted: Thursday, July 26, 2018 1:00 PM
Joined: 7/26/2018
Posts: 6


Last Friday I accompanied my fifty-seven year old estranged husband to get the results of his Pet Scan (we have been separated for a few months, but I flew to his city to be with him for the Pet Scan and for the appointment with the neurologist). We were joking and laughing when the neurologist entered the room, and with a smile said that it seemed that the results were consistent with  Alzheimer's, but that it could take many years or a decade to develop. The results of the petscan read: "mild hypometabolism involving the bilateral parietal lobes. This is worrisome for Alzheimer's disease". My highly educated husband (he has a PhD from an ivy) left that office thinking that he had a condition that might or might not develop and that it could take "decades"(the doctor has an accent). 

Can someone please tell me, in English what that diagnosis means? Why is it only "worrisome" and not definite evidence of Alzheimer's? He was started on aricept right away. The plan is to move him with me once he can no longer work. I am just overwhelmed and scared and would like some clarification about his diagnosis. I was so shocked at the nonchalant way in which the doctor delivered the news, that I failed to ask for more information.

Thank you!


ndhme
Posted: Thursday, July 26, 2018 2:27 PM
Joined: 5/31/2015
Posts: 1157


Welcome M4P....

First off, thank you for accompanying your ex to his appointment.  It is shocking to get a diagnosis and to be there alone makes it worse.  You are a kind, compassionate woman...not many people would be there to support their ex.  

Sounds like your estranged hubby has mild cognitive impairment which most likely will develop in to Alzheimer's as the years go by.  There are members that participate on this board in particular who have MCI and are living a good life.  Some have mentioned they sense they are changing.  Everyone progresses at different rates hence the ballpark remark of many years to a decade.  I feel it is good they started him on Aricept as many find it helps in the earlier years with cognitive abilities.

Although we all read and post on the different forums, if you post on the spouse/partner or caregivers boards you may receive more replies.  This board is not as active as they are.  

now just breathe...others may be along as the day progresses.

P.S...the members that participate on this board are mostly persons with dementia/MCI...do you think your ex would like to join.  They impart information they have garnered, ways to improve their daily living and struggles they run into.  An amazing group of 'dementia pioneers".  

 


BadMoonRising
Posted: Thursday, July 26, 2018 3:24 PM
Joined: 4/22/2017
Posts: 283


This is whacky. I assume he sought an evaluation because his symptoms suggested some type of cognitive disorder. Did he have a neurocognitive evaluation and if so, what were the results? IMO, if the results of the evaluation demonstrated a cognitive impairment AND his scan results were consistent with Alzheimer's Disease, then he has Alzheimer's Disease. He could either have a Mild Cognitive Impairment due to Alzheimer's Disease or Dementia due to Alzheimer's Disease. It sounds as if it is the former.

If you don't mind sharing, in what field does he hold a PhD? It doesn't matter in terms of the possible AD but I admit I am curious.


alz+
Posted: Thursday, July 26, 2018 5:41 PM
Joined: 9/12/2013
Posts: 3549


Very kind to go with your ex husband to his appointment, sounds like you will remain best friends.

Just want to suggest watching him, or himself reporting, any side effects from Aricept. The med is not tolerated by everyone.

Keep in mind too new researchers are moving away from the old plaque and tangle theory and search for drugs concentrated on that. There may be a new med that actually works before he is hindered in his work and life from effects of any cognitive problem.

I belong to fb groups for people using CBD oil successfully.

Hope your husband will consider joining discussion here. 



Iris L.
Posted: Thursday, July 26, 2018 7:34 PM
Joined: 12/15/2011
Posts: 16192


Welcome, M4P.  There is no distinct marker for the division between MCI and Alzheimer's Disease.  IMO, if your DH has symptoms and has some changes on his MRI, he has AD.  Of course, other medical factors that mimic or cause dementia must be ruled out by medical testing from an internist and a neurologist.

 

The developing pathology of AD make take years to develop,  It is not unusual for the signs associated with developing Alzheimer's Disease to be interpreted as marital problems, with ensuing separation/divorce.  Memory loss may not be the first signs, but poor judgement and personality changes may be the first signs.

 

Since your DH is still working, now is the time for him to work on having his work career come to a close.  There is no way to tell how fast his illness will progress, but he will become progressively unable to perform his duties.  It is better for him to retire on disability than to be fired for poor performance.  Do not tell the employer the diagnosis, because they might just decide to let him go.  

He might take short term disability pending the completion of his medical testing, while he goes throug the process of applying for long term disability.  This might take a few months.


Many PWDs have anosognosia, which means they are unaware of having dementia or unaware of how serious this is.  He may not fully understand what is facing him.  If he is amenable to reading our boards, he can join us.  Otherwise, you may be able to visit with the spouses and learn what needs to be learned for the both of you.


Iris L.


M4P
Posted: Thursday, July 26, 2018 11:08 PM
Joined: 7/26/2018
Posts: 6


Thank you to all of you for your kind and prompt replies. We have been separated since January, but our formerly great marriage has been in the rocks for a few years. We are still married, but a divorce might be necessary to save our assets; this was confirmed by two different lawyers. As I said before, he would come live with me and I'll take care of him when the time comes, married or not. His field of study is Pol Sci and he holds a full professorship  in a medium-size university; he has had tenure for more than two decades, has published and been successful in his field, I wonder when will his students and colleagues notice.

Since we met, 30 years ago, I noticed that he was the typical "absent minded professor", and when his memory started to deteriorate I attributed it to age, but then I noticed that his reasoning and executive functions were not normal. Before we separated I took him to a neurologist, who ordered some tests and said that he was fine. I go to what is still my home, where he lives, once every few weeks and I did notice a change. Finally, a few weeks ago he took my mom to the airport and got lost, my mom lost her flight and he, who has travelled so much,  did not know what to do. He could not find his car and had to spend the night in a hotel; the following morning our daughter had to go and help him find his car, which she did right away. Financial paperwork confuses him to no end, he gets very anxious, so I have started to take over. We did POAs and transferred the kids 529s to my name, so I can handle that. All of these latter developments made me call his doctor, demand an appointment and fight to have the Pet Scan approved by our insurance. He did not have a neurocognitive evaluation because we could not find an in-network doctor to do it, but when the neurologist asked my husband simple questions (how much is 100-7?) and he could not answer them, it was pretty clear that there was something wrong. 

He is in denial, he just told me "I don't feel any different, I am fine", so I don't think that he will want to join the group just yet, but I will suggest it. 

I will repost this on other boards as well. Thank you for the suggestions about CBD oil and how to approach his job situation. The university has a large and powerful union, I will start doing some research. Good luck to each of you, thank you for your kindness.

 


Mimi S.
Posted: Friday, July 27, 2018 8:51 AM
Joined: 11/29/2011
Posts: 7035


Having been a teacher at the University level, yes, others including students will notice. hopefully work with the Union on how to handle this. 

You will never get him to agree.  He has anosognosia.  Anosognosia is a characteristic of the dementias that keeps the patient from being aware that he has demenai.  He truly believes he is fine and that his driving is fine.  (and as the incident driving to the airport shows, it is not.)


Iris L.
Posted: Saturday, July 28, 2018 3:57 PM
Joined: 12/15/2011
Posts: 16192


If he is getting lost, he is not at an early stage.  Start making arrangements now.  It is most likely time for him to stop driving.  Read about this on the Spouse/Partner board.  Read a lot of threads and you will learn what else you can do.  If he has a Bucket List, now is the time to do things on his list.  


It will help if you don't try to convince him that he has dementia.  It won't work.  He is not in denial, he has anosognosia.


Iris L.


M4P
Posted: Saturday, July 28, 2018 4:40 PM
Joined: 7/26/2018
Posts: 6


Thank you Iris. He got lost at La Guardia, there is a lot of construction going on now;  anyone can get lost there, but you are right about keeping an eye on his driving. That's what I am most concerned for now. I do not live with him, but my kids and I are going to take turns visiting him one weekend a month each, so we can keep an eye on him. Thank you again!