Just wondering(4)

Crushed

My mother had Vascular dementia, my wife was a physician, and I had published on brain injury due  to Carbon monoxide.  DW had been appointed to the highest medical executive position in the Federal Government in her field.

Wife and daughters saw "something" before I did .     But in Sept 2010 In Alaska she could not add up a column of numbers. She was 58  I got her home to her Kaiser PCP and she failed the clock drawing test.   Saw the Kaiser Neurologist the next day who confirmed cognitive impairment.  Kaiser gave us an "open referral" since she was so young.  We saw the head of Neurology at Johns Hopkins 3 days later.  (DW had at one time been on staff at Hopkins)  Confirmed MCI of the amnesiac type  But she knew and I knew the true diagnosis  was worse. 

 We had 18 months  of hope and uncertainty until the new Kaiser Neurologist was obviously irritated by the MCI diagnosis and changed it to Alzheimer's in Feb 2012 He simply assumed  that the MCI was just a mistake. We both knew what the Alzheimer's diagnosis meant.  I did not care for the neurologist's abrupt manner but he was right.  He did tell her 'Doctor to Doctor" that she had taken an oath not to hurt people and could no longer drive. 

With the medical diagnosis in hand I began arranging her retirement in 2012.  I had to sue OPM to get her full pension. I won.

Ed1937

Iris, I knew you had MCI, but I didn't know the whole story you wrote about. You're certainly a very strong person.

What you wrote about telling the PWD that they have it is the very reason my wife does not know she has dementia. She did not hear the diagnosis, and I've done everything I could to make sure she never knows about it. She does not have anosognosia, and it's been well over three years since diagnosis, but we've been able to keep the secret from her. I know many (most?) people don't agree with what we're doing concerning that, but that's OK. She does not suffer from deep depression, like she did when our son passed.

Iris L.

miamvp wrote:

 to say you have Alzheimer's is hard to believe with your apparent cognitive ability to write and record all that you have done on this thread.  

Miamvp, I do NOT have Alzheimer's Disease.  Other members have posted that their neurologists basically dropped them after giving them a diagnosis.  I wrote out my story to show how my neurologist kept digging until he found an answer.  A sort of answer.  I don't have AD.  I actually don't know what I have but it appears to be a mish-mash of lupus, sleep apnea and hypertension.  Oh, and I forgot to mention anti-phospholipid syndrome, which causes mini blood clots.  That's what my rheumatologist believes is the cause of my brain difficulties.  I don't have AD but the Alzheimer's drugs are helping me and have been doing so for eleven years.   

All that I learned in college and medical school is gone.  Not absolutely all, but a lot.  A lot of high school education is gone, especially math, algebra, geometry and trigonometry.  I can't multiply fractions.  One time I got a math review book so that I could relearn math, but it didn't work.  I tried to learn to play the piano I could not remember.  I do remember the humanities like history and geography but not details.  I don't do anything complicated.  

The medications are stabilizing my short term memory.  My long term memory of my own history is slowly fading.  I still read certain mystery authors but they are becoming difficult because I don't remember characters or what has transpired in the story.  I have to do a lot of rereading and I take notes.  Most of my old enjoyments I no longer do.  I try to live in the moment.  I am learning new things to enjoy.  Actually, I enjoy posting because I feel like I am contributing to making a difference.  As noted, there is very little help or support for PWDs and caregivers from professionals.  I have a bit of inside knowledge and I want to get it out to help others while I can.

Iris

DrinaJGB

Iris--From your description of your symptoms it leave me to ponder the possibility that you perhaps had suffered a mild case of a form of encephalitis.

  Some types of encephalitis are not as acute or deadly as the type my DH had, and some are never really known, but they do typically leave the afflicted with severe memory deficits and diminished executives functioning such as you describe--which in turn tend to later be diagnosed as dementia/AD.

Iris L.

Actually you might be right, Drina!  My own opinion of my illness is of a post-viral syndrome.  In 1986 I had a three day illness of HIGH FEVER but no upper respiratory or other symptoms that I recall.  My life fell apart after that but not right away.  Things happened slowly.  

I was tested by a virologist who said I did have residual virus in my gastrointestinal tract.  The virus was similar to Epstein Barr virus but not that one.  But he said there was no specific antiviral that he could offer me.  He did offer me some alternative therapies to strengthen my immune system.  

Since he had nothing to offer, he told me I did not have to come back to him.  But since then, a new anti-viral therapy for hepatitis C has become available.  I probably should check in with him to see if anything new has come along for me.  But Covid keeps me mostly at home, away from known sick people.  It's probably too late anyway, after all these years.

Now I read that some Covid patients have post-viral cognitive symptoms.  Who knows how long those will last?

Drina, is your husband tired?  I am SO TIRED, all the time!

Iris

DrinaJGB

Hi Iris--Mu DH stays awake all day but crashes around 7:30. He has his little routine that he does every day which keeps him busy. He used to fall asleep at his drafting table during the day, but not any longer. He still gets up at 6:30, makes coffee and empties dishwasher--then we go for a walk with the dogs. SO, he likes to keep busy, but at the end of the day he's wiped out--and sometimes nods off during the news at 5:00.

DrinaJGB

Iris-I forgot to say that little is known about EBV encephalitis but it is possible and can cause a myriad of other CNS problems.( I deleted my earlier post to you for fear of upsetting you).Your symptoms are very similar to my DH's and that is what I thought of since you have had no answers.

I also agree with you that covid cause many neurological difficulties as well. My neighbor had covid pre-vaccine and he has since suffered both a stroke as well as a Parkinson dx.

I wonder if you had a mild case of some encephaltiis which has cause so many of your problems. Many cases are never pin-pointed other than the one that confirmed my DH's with a positive PCR and MRI images.

 The images for his encephalitis are specific to areas like temporal lobes. But in most cases of encephalits the reason is not determined. There are so many--including anti-NMDA that can cause the symptoms.

I hope you stay safe and well.Best of luck to you.

Iris L.

DrinaJGB wrote:

 .( I deleted my earlier post to you for fear of upsetting you).Your symptoms are very similar to my DH's and that is what I thought of since you have had no answers.

Drina, I wondered where that post was.  I've been a victim of cyber-bullying on this board so nothing less would upset me. In fact I am so GLAD you posted because it reminded me about the virus.  The virus that the virologist discovered in me is not EBV, but something similar.  He did research on that virus. I can't recall the name and I misplaced the scientific articles he had given me.  

I have changes on my MRI which the neurologist calls leukoairiosis.  He says they are due to micro-vascular changes but I suppose those changes could be precipitated by virus.  My neurologist had referred me to the virologist because of what he saw.

I should follow up with the virologist, but I just don't have the energy now.  For several years I had energy to travel overseas, now I can barely function.  I don't sleep well, I toss and turn all night.  I leave my home once or twice a week for grocery shopping and other small errands.  My housework is falling behind.  I am so tired all the time.  I do not keep busy, I rest a lot.  I do walk for 15 minutes three times a week.  That's my exercise to help stabilize my blood pressure.

This decline has been at the same time as the Covid restrictions but I am sure I have not been exposed to Covid.  Yet I have avoided medical appointments.  I am not looking forward to rounds of testing and probing that go nowhere.

Your husband is very fortunate to have you stick by him all these years and to protect him from his relatives. 

If you have anything to add, please feel free.  I won't get upset.  I relish uesful input.  The members here are from whom I get my advice and guidance.  It's hard for new members to comprehend but the outside world and professionals don't have much to offer people like your husband and me and the other patients. Except for my neurologist, who I think really helped me a lot.

Iris

DrinaJGB

Iris--

 My DH recent MRI also revealed leukoairiosis--or white matter disease.

  This seems to be more common in people with a history of cognitive impairment, dementia and cerebrovascular disease.

  His father and grandfather both had VD, so it did not surprise me. When I asked his neurologist if DH is now considered vascular dementia he was non-committal, but when I looked at the diagnosis on his MRI report it was "late effects of viral encephalitis and mixed dementia"

  Curious that I had to read it on the report and he still wouldn't tell me.Does he think that after all these years I don't know? lol!!

Iris L.

Drina, as Ed and others have pointed out, doctors seem to be reluctant to be candid with families about diagnosing dementia.  I think it's part of why there is so much hopelessness.  It's like dementia is so horrible, you can't even talk about it!  I don't see a change any time soon.

Iris 

DrinaJGB

Amen to that, Iris.

amicrazytoo

When we received the diagnosis, I distinctly remember the doctor looked at me, away from my husband and whispered “MCI, it’s dementia”  she offered medication (aricept) which my DH refused. Now several years in after dx, hind sight shines so brightly. Instead of dealing with this for a couple of years, I know we have been on this journey at minimum 10 years. It explains so much of what we argued about during this time. Almost to the point of divorce. He is now down to 113 lbs. His PCP, has finally come out and said, he won’t last long if he continues to lose weight. Last ditch effort would be to use a medicine designed to help cancer patients gain weight. Side effect, blood clots. Doctor is concerned because he smokes. Damned if you do, damned if you don’t.  Do I just let him go? Or try the medicine and hope for no blood clot. I would hate to see a stroke, prolonging his life, for what? There is no quality. Too much on my shoulders right now. I don’t like being in this position.

June45

amicrazytoo wrote:

He is now down to 113 lbs. His PCP, has finally come out and said, he won’t last long if he continues to lose weight. Last ditch effort would be to use a medicine designed to help cancer patients gain weight. Side effect, blood clots. Doctor is concerned because he smokes. Damned if you do, damned if you don’t.  Do I just let him go? Or try the medicine and hope for no blood clot. I would hate to see a stroke, prolonging his life, for what? There is no quality. Too much on my shoulders right now. I don’t like being in this position.

Only you can decide whether or not to try the medicine.  But it is my opinion that whichever way you decide to go would be the right decision.  No hindsight, no guilt about whatever happens from your decision.

Stuck in the middle

amicrazytoo wrote:

Do I just let him go? . . . prolonging his life, for what? There is no quality. 

I think you answered your question.  I'm very sorry.

amicrazytoo

Stuck - Thank you, I think I was just looking for validation. This sucks.