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Very early MCI
FmastersonAZ
Posted: Monday, December 14, 2020 3:03 PM
Joined: 12/14/2020
Posts: 2


Hi, i was diagnosed with MCI last January after neuropsych testing MRIs and other evaluations.  I was 39 at the time and I'm 40 now.  I live in Arizona and contacted Barrow about seeing their neurologists but they wouldn't take me as a patient because of my age.  My general practice doctor doesn't have any idea what is going on and hasn't offered any help or guidance.  

My memory is continuing to degrade and its taking a toll on all aspects of my life.  My wife is also really struggling with my memory loss.  Does anyone know of any resources for people dealing with these issues at my age?  I'd also take medical professionals looking into cognitive problems or researchers or kind of anything.  Its a tough time and I'm trying to figure out how to just function with this going on.  I am an attorney and I lean heavy on notes and calendars but if you all have other strategies I' d love to hear them and give them a shot.  Thanks!


KawKaw
Posted: Monday, December 14, 2020 4:58 PM
Joined: 11/22/2019
Posts: 399


Welcome!

I am glad you found this forum.

Is your neurologist treating you for your MCI?

I was not getting the support I wanted from the neurologist who diagnosed me with MCI, so I went to the specialist who treated my mother for dementia.
I am on Namenda and Rivastigmine patch 9.5 mg per 24 hours.

Subjectively, it seems that my immediate memory and function improved a couple weeks after starting the Rivastigmine.  It is impossible to know the direct cause of my improvement for sure.

Iris L. introduced me to the concept of best practices.  I think if you put that into the search box, you might find more information.

Essentially, pared down: take great care of getting adequate sleep, good nutrition, aerobic exercise and reducing stress.  There is more, but that is the core.

Working as an attorney, I don't know how much control you have over stress.  In my experience, less stress means my cognitive abilities are more on tap for me.

I have a notebook where I note everything I want to remember.  On good days, I haven't forgotten a single thing on it.  Not as good days, it reminds me of my core activities.

My specialist recommended that I set aside time every day to learn something new.  I have recently begun reteaching myself to play the violin.  It has been 47 years since I played.  I have several other instruments that I will also relearn, including the piano and alto recorder.

I am relearning to read music as well.

Routine helps me tremendously.  I used to frown on routine as boring.  However, I have worked out a daily schedule that works for me and doing certain things routinely requires less thought energy.  

Also, giving myself a break when my expectations are too high for my abilities.  Being kind to myself also helps to reduce stress.

My spouse forgets that I have memory issues because nothing outwardly has seemed to change, except there are days when I seem less motivated or active.  He tends to chide me for not getting things done.

When those days come, it is because my cognitive abilities are a bit under stress and I am simplifying to get through the day without stress.

I used to berate myself when a name or term I once knew easily cannot be retrieved.

This was unhelpful.

Now, I openly talk or write "around the word" or memory or whatever.  I often spiral into what I meant though it takes longer.

Memory issues are frightening for those of us having them and our families and friends.

I live much more in the present than ever before in my life.  It isn't unpleasant, though it is different.

If you go back through this message board and others, you might find more information that will be useful to you in navigating memory problems.

Again, welcome!

 

 


Iris L.
Posted: Monday, December 14, 2020 9:04 PM
Joined: 12/15/2011
Posts: 18513


Welcome Fmasterson.  I was a practicing physician when I developed memory loss at age 37.  I had to take a leave of absence, which I thought would be temporary, but I was never able to return to practice.  I have several diagnoses as the possible cause of my memory loss.  Although the memory medications are helping me, I do know from my Amyvid PET scan that I don't have Alzheimer's Disease.  My diagnosis remains cognitive impairment not otherwise specified.  I also have a diagnosis of leucoairiosisb which has to do with blood flow in the brain. 

 

Were you evaluated by a neurologist who regularly sees patients with dementia? Not all neurologists are up-to-date on all the diagnostic steps.  It can be worthwhile to get a second opinion at an Alzheimer's Disease Research Center.  Your local Alzheimer's Center can direct you to one, or you can Google.


Did you have an overnight sleep study to look for sleep apnea?  Were all your medications checked for memory loss side effects?  Was your testosterone level tested, along with other hormones and nutritional levels?  Do you have a history of acute or chronic head trauma from sports or anything else?  These are all important.  

 

Since you already have a dx of MCI, become proactive.  Be aware that you can be fired or otherwise let go, if your work performance is found to be unsatisfactory.  Do you have long term disability insurance already?  This is insurance to replace your income, not for long term care.  After an MCI dx it is too late to apply.  If you are employed, it may be an employee benefit.  

 

If your work performance is suffering, it might be a consideration to ask for a short term leave of absence, in order to complete a thorough evaluatoon with your second opinion.  You might benefit from a trial of medications.  After a thorough evaluation, you will know if you can return to work or if you will need further time.  Short term leave of absence requires a doctor's note.

 

There is a government website that offers work accommodations suggestions for people with cognitive impairment.  It begins with "askjan", I don't remember the whole site.  But you can Google work accommodations+cognitive impairment.  

 

Everything will be overwhelming.  Stress and anxiety make cognition worse.  Work on Best Practices and stress relief.  Take things slowly.  Post again when you can, we will try to help you!  


Iris


Iris L.
Posted: Tuesday, December 15, 2020 10:14 AM
Joined: 12/15/2011
Posts: 18513


I want to add that not everyone who is diagnosed with MCI will proceed to developing Alzheimer's Disease or one of the other dementias.  Some people will be determined to have a treatable, reversible medical or pharmacologic cause for MCI, and will improve to some degree.  Other people will remain at the same level of MCI indefinitely.  


Long ago I read that the prognosis for people with MCI is 1/3 develop dementia, 1/3 improve and 1/3 remain the same.  This is why a thorough evaluation is so important.  Reversible causes may be overlooked.  


Iris


FmastersonAZ
Posted: Tuesday, December 15, 2020 12:15 PM
Joined: 12/14/2020
Posts: 2


Thanks KawKaw and Iris.  These are both extremely helpful and really the most information I have gotten in the last year.  I do not have a neurologist.  I went through a sleep study and a neuropsychology exam along with some blood tests the end of last winter leading to the diagnosis.  After that I tried hard to get into see doctors at Barrow neurological but they said they couldn't do anything for me because of my age.  then the pandemic hit and I basically have been trying to ignore this since then.

The best practices sound great and I will start on employing those today. I do have a history of head trauma from sports and i joined the NCAA class action that provides visits with a neurologist and neuro psychologist but no one in my state is part of that program.   I will look into the Alzheimer's Disease Research center to see if they can get me more information or  refer me to local doctors.  

Again, thank you both so much.  I don't have many people that I can really talk to about these things and your comments truly are more helpful than what I've gotten from my doctor.  


jfkoc
Posted: Tuesday, December 15, 2020 5:07 PM
Joined: 12/4/2011
Posts: 21248


You will not be able to see a specialist due to your age but you can see a resident who can pass you forward.

I would take a look at this just pulled up. It may be just what you are looking for or at least help you with your search.

https://diversity.uahs.arizona.edu/news/2020/uarizona-researcher-awarded-34m-develop-personalized-treatment-mild-cognitive-impairment


Iris L.
Posted: Wednesday, December 16, 2020 4:15 PM
Joined: 12/15/2011
Posts: 18513


Fmasterson, if you are interested in transcranial stimulation, I suggest you begin to research it on the Clinical Trials message board.  See what others have to say about it.  

 

Iris


Michael Ellenbogen
Posted: Thursday, December 17, 2020 12:26 PM
Joined: 11/30/2011
Posts: 4460


Just making sure you know I had sent you an email. 


dasherbln
Posted: Monday, April 26, 2021 8:24 AM
Joined: 4/26/2021
Posts: 9


Hi I’m a 48 year old lawyer in NY and I also just received an MCI diagnosis from neuropsychological testing and am now waiting to get further tests. I’ve been relying heavily on my Reminders app in my iphone for a daily to do list (I use a widget to being the list to my attention front and center). I also use a spreadsheet that I update every time I work on a matter - it has columns where I complete the next step, for the matter name and type, for the client contact and for the dates I last worked on it and when I last entered my time. I also often record conversations to allow me to take detailed notes after a phone call. I’m a heavy user of flags on my outlook emails. The first item I always keep at the top of my to do list tells me not to do anything on a matter until I have read the last email I sent and received on it. All this feels a little like the little Dutch boy putting his fingers in the leaking dike but I haven’t come up with anything better thus far. I am particularly concerned about having to do in person meetings when Covid quarantine ends. Frankly even now I dread telephone calls because of the need to think on your feet. If you or anyone else reading this have any recommendations for an attorney who could help with a disability insurance claim that would be appreciated.
Iris L.
Posted: Monday, April 26, 2021 3:33 PM
Joined: 12/15/2011
Posts: 18513


Welcome dasher.  I too have had a cognitive impairment diagnosis for over twelve years.  It is important to understand that MCI may remain the same, may progress or even improve.  But there is no prediction.  The best thing is to search for contributing factors and work to ameliorate them.  In my case there are several, but one of the mist serious is keeping my blood pressure in a good range.  Work with your doctors and check all medications that might be contributing to your condition.  Also, get checked for sleep apnea, this is often overlooked.



I was a physician and I had to stop practicing.  I was 37 at that time.  I thought I needed a temporary furlough due to overwhelming stress, but I was never able to return to professional work.  At that time my diagnosis was depression, but other diagnoses were added as time went on.



You will have to determine if you can continue your work at your level, or if you might be able to perform with accommidations.    You are already making accommodations by the use of exhaustive notes.  But those will take you so far.  There is a federal website that describes work accommodations for cognitive impairment.  The site is named someting like "askjan".  If you do a search on this board you might find some of my earlier posts where I remembered the exact webite.   



Do you work for a firm that provides disability insurance as a benefit?  If so, read over the requirements.  You might want to review with an employee lawyer.  If you don't, you are now ineligible to get a new policy.  You might be eligible for Social Security Disability Insurance if you have inputed enough quarters.  The Alzheimer's Association has enabled a fast-track program for younger applicants.


I had a policy through my company.  But I had to sue them to enforce the policy.  That cost me a huge legal bill.


If you can get a chance, review your most recent annual report to see if any deficiencies are noted and if you have received any warnings.  Depending upon local laws, you might be terminated.  Then you would lose all benefits.  


This is all I can think of now.  Please post again with any concerns.  Feel free to begin your own thread by clicking on "Add Topic" at the upper right on the main Younger Onset page.  This board is slower than the others but many are here to help you, dasher.


Iris 


dasherbln
Posted: Monday, April 26, 2021 5:38 PM
Joined: 4/26/2021
Posts: 9


Thanks so much Iris - very kind of you - you’ve given me much food for thought. FamastersonAZ - please let me know if I can be of further help
Iris L.
Posted: Monday, April 26, 2021 8:03 PM
Joined: 12/15/2011
Posts: 18513


I thought of something more to tell you.  Apparently your medical evaluation is not yet complete.  If your employment is in jeopardy, you might consider taking short term medical leave of absence aka short term disability.  This usually requires only a doctor's signature, for a few weeks.  Short term disability would be pending completion of a thorough medical and neurological evaluation, including a trial of any potential treatment, such as medications for whatever medical condition might be present.  There are many dementia mimics!  



IMO, if there is a history or co-diagnosis of depression, a trial of appropriate antidepressant medication should be attempted.  These medications may take four to six weeks or more to show a positive effect, if it is to happen.


 

Long term disability requires a complicated application process with a lot of documentation and can take months.  



Discuss with a knowledgeable professional before you make any moves.  


Can you discretely check your Bar Association for the best disability firm in your area?  I found my disability law firm from the newspaper, when they were advertising.  But that was a long time ago.  They were the biggest insurance claim firm in California.  


Iris