Update on neurologic appointment

Iris L.

I had an appointment with the neurology nurse practioner, whom I had apparently visited about four months ago in March.  Of course, she asked how I was doing.  My major symptom, memory loss, I felt too awkward to tell her about.  And that was that I did not remember her at all!  She is a young Asian woman, and I would swear that I never saw her before in my life!  But I did not want to tell her that I did not recognize her.  I felt embarrassed.  

Mostly we talked about my sleep.  She increased my sleep medication.  She scheduled a computer based cognitive test for September, after I consult the sleep specialist and the pulmonologist.  We talked about apathy, but she has no treatment for that.  That's all.

Iris

eaglemom

You know Iris, I don't think there is a thing wrong with your appointment. Frankly they sound like DH's. He doesn't recall when we were last at that office - I usually have to look back on my phone's calendar! 

The difference is DH has no issue saying "well, you know, sometimes I'm forgetting things but its ok." Then he usually follows it up with "I don't think its worse, sure isn't better, but I know that." Then he's asked several chit chat questions just for regular conversation.

Sleep is very important, I'm glad your addressing those issues. Do you have a CPAP? That has been great at getting DH to sleep through the night and getting into REM sleep.

I'm sorry you were embarrassed to mention the memory loss. I totally understand it though. We all deal with different levels of comfort in what we are comfortable in revealing. Keeping you brain engaged daily is vital - and you know that.

eagle

Michael Ellenbogen

 I am so sorry you had to feel embarrassed. But keep in mind there is no reason to need to feel that way as none of this is your fault and the more the doctor knows the more, they can help. I know you already know that. Don’t ever beat yourself up over this as it will only get worse over time. Have great day.

Iris L.

Michael, please do not think that I am thinking badly about myself.  In fact, I was proactively protecting myself from a bad outcome.  From my own experiences and from reading many caregiver posts, I have learned that people tend to become highly offended if they are not recognized by PWDs!  Then they say bad things about the PWD.  I know she is a professional and should not take non-recognition personally, but I was not willing to take that chance, because I needed her unbiased medical advice and for her to write my prescription.  I realize this is not at all the optimal way to handle a medical appointment, but this is how I have learned to protect myself and to get my medical needs met.   

Eaglemom, I do use CPAP at night and it has been a help.

Iris

EllisA

I too have MCI that led to the Alzheimer's diagnosis December 2019.  Nearly 3 years ago.  Things kept getting worse, forgetting recent things, names an faces I had known for at least 10 years, huge problems thinking thru puzzling things.  I totally gave up Crossword puzzles,  still do some word searches, however I use to some mechanical repairs around our 5 acre hobby farm.  That has become very difficult and really FRUSTRATING!!!!!!!  now it has become a REAL chore and I'm near the stopping point however my fantastic DW, refuses to see my struggles.  I know she is simply extremely in denial, and won't face this reality for me. She has no no desire to except info from social workers or the psycological (sp) fields.  She is biological proof sensitive only.    MRI simply shows large amounts of plaque.  MY dr has not ordered a PET scan, not sure it would show anything more than we already know.  I recently contacted Biogen to see about their bio-maker testing.  They sent the sample swab packet, however she was extremely against sending out a sample of my DNA, because it might possibly be used against me.  I don't have a criminal past at all so I don't understand the need for this much privacy. Sorry to bore you all!

Iris L.

Hello, Ellis.  If you're talking about the ancestry type DNA swabs, I do believe a DNA registry is being collected.  But who is behind it? I don't know.  I am wary of those.  I had genetic testing done by a genetic lab, ordered by my neurologist, and discovered that I am positive for APOe4, indicating that I have an increased risk of developing Alzheimer's Disease.  But I already knew that because there has been Alzheimer's Disease in my extended family relatives.

I learned from Mimi S, one of our emeritus members, to focus on what I still can do and enjoy, instead of what I can no longer do.  There is a lot that I enjoy.  I also learned that I need to manage my environment and to make my life easier.  I see no reason to struggle.

I live with four senior cats.  It is hard for me, but I am going to do my best to give them good care because they are my family.  Did you say you have goats?

Iris

EllisA

Yes.  We have 10 angora goats for their fiber, and 2 Nubian for their goats for their awesome milk.

I too am trying to focus on what I CAN do.  Even tho some tasks are getting harder to sort thru, I keep slowly moving forward.  God Bless you this week.  EllisA

Iris L.

My husband grew up with sheep and goats, and when we first married, I had a fantasy about us owning a goat farm.  Fortunately, that fantasy remained a fantasy.  I was too much a city girl to do anything like that.  But it sounds enjoyable for you and your family.  It's great that you have your family to help out.

Iris

EllisA

It is really nice to have.  Especially the 5 acres of privacy, however a lot of work for me.  I do think it is really helping to keep this nasty thing we have at bay for a bit. EllisA

Mybrain

I dont ha e a reply. I am new hear. What is the neuropsycologist test like? What will it show? Is it going to show dementia or some other disease? I'm scared. My Doctor gave me that test with the clock. I breased right through it. After telling him all my behaviors by myself, husband and daughter, he was certain it was early onset dementia until I aced the other test. Please help, I'm scared they will find more.

Iris L.

Hello, Mybrain.  I'm sorry you have to be here but I'm glad you found us.  This is the best place to find answers.  

Everything about dementia is unusual and different from other serious diseases.  Indeed, the diagnostic process is not straight-foward.  There is no one test that determines dementia.  The diagnosis of dementia is a rule-out diagnosis, meaning that all other memory loss diseases must be searched for and ruled out first.  Vitamin deficiencies, hormonal problems, and other diseases can mimic dementia.  Many common medications cause memory loss as a side effect, which may be worse in older adults.  Strokes and old brain trauma can cause dementia.  A thorough workup with a good history, physical exam, blood and other laboratory tests, and imaging studies (mri) can be done by your primary care doctor.  

If the screening test, which includes the clock test, is abnormal, then the patient can be referred for more extensive testing, done by a neuropsychologist.  This specialist will delve into various aspects of brain function and provide a determination if dementia might be present.  The testing itself is not stressful, it is more like playing games and solving puzzles.

Why do the testing?  Most people want to know what's going on with them.  If there is a medical cause, treatment may help.  If the answer is one of the dementias, early treatment may prolong the early stages and improve functioning.  Plans for the future can be made without being in a crisis.  

My brain, it is wise of you to seek answers now.  You seem to have family support, that can be important.  Please don't hesitate to complete your testing.  Let me know how you are coming along.  

Iris

Amy Joy

Hi hope all are fine.

It takes more than a test or 3 to know what is really happening.

My doctor first started testing me a while ago.

My doctor said I was at high risk of dementia based on tests and medical and family history.

My first MRI showed signs of memory loss and mental decline.

I’m continue to see doctor and take medicines so I stay out of the hospital.

Hope the best outcome for all.