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Feel I am in a Twilight Zone
James1975
Posted: Saturday, December 15, 2018 1:15 PM
Joined: 10/13/2018
Posts: 2


This is my first posting and I am a bit uncomfortable writing about myself this way, especially since I am not certain there actually is anything wrong with me and that I am not just being hyper-vigilant .  I apologize for the length

I am 61, a professor, living with my wife in New Jersey. I have neither a family history of dementia, nor any other major risk factor. Three years ago I was treated for post-concussive syndrome after having three concussions in two years. As a soccer player of more than 50 years, including a brief time professionally, I can think of at least two other concussions, though there likely were more. No one paid much attention then. After the latest concussions symptoms never entirely went away, so my neurologist sent me for neuro-psych testing. The official determination was “MCI consistent with multiple concussions.” When I asked my neurologist what this meant he said there still isn’t enough information to say. I know self-diagnosis is ill advised, but to me it sounds like CTE. At Neuro-Pysch's suggestion, I was put on Aricept which I am told is a long shot but shows some promise for CTE.

Short-term memory is definitely an issue. Going to the wrong cabinet and forgetting why I entered a room is getting old. Learning something new has become difficult. Sequential thinking is erratic. I can completely lose track of what I am saying in lecture. A long uncomfortable pause ensues. At other times I struggle to formulate a coherent sentence even though I know what it is I’m trying to say. Intense concentration causes a feeling of pressure in my head and brief, stabbing headache. None of this meshes well with my profession. I also have an essential tremor that is moving from annoying to troublesome. I have had therapy for vision issues and balance, which helped. I don’t fall over often but I probably wouldn’t pass a sobriety test. Both therapists said I should expect to need periodic “tune-ups.” Un-controlled anger has not been an issue, but I am late diagnosed bi-polar and on lithium.

Still, for the most part, with help from Google Assistant and Maps and trying to ignore potential distractions, I am functional to the extent I think I might be normal. Then I do something so far outside normal I know things can’t quite be right. In addition, my wife feels there is a problem, my MMSEs haven’t improved and both my neurologist and PCP have taken to asking if I’m still working (I am). Neuro is sending me for a second round of neuro-psych testing for comparison.

All of this is to say I really have no idea of what to expect and if or how we should plan ahead. For example, should we look for housing that would be less maintenance or consider retiring early? I like where we live, and I like my job. Financially and by desire it would be better to work at least another 6 years. It would be great if I really am age normal, but then I wouldn’t have an explanation as to how it is I feel I’m feeling behind my peers the same age as me.  Not knowing is worse than knowing. At least that’s how I feel at the moment. Could be different later. I would welcome any thoughts, information or advice.


jfkoc
Posted: Saturday, December 15, 2018 2:59 PM
Joined: 12/4/2011
Posts: 17438


Hi James...

First things first. You do what all of us need to do whether or not we have been diagnosed with an illness. Take a look at this;

www.alz.org/help-support/i-have-alz/plan-for-your-future

Downsizing?  Many do this simply because they do not want so much to take care of. If you do go this route consider that the MCI may progress and look for one story.

Travel? Go, do it now.

Tomorrow? It will come but when we have our ducks in a row there will be less worry.


Gig Harbor
Posted: Sunday, December 16, 2018 11:12 AM
Joined: 3/10/2016
Posts: 581


My first thought is to see an eldercare attorney and get all POA's in order. Have him go over your finances and make plans for different scenarios. One might be you are able to work until you are 65 and the other might be needing to quit work in the next year. Having a financial plan will allow you to feel more comfortable. I think you will know when it is time to step down from teaching. As it becomes more difficult to get thru a lecture without losing your train of thought students and other faculty will bring it to your attention. When you can no longer drive to familiar places that you have never had trouble driving to before without now using Google maps, that is a red flag. Hopefully you will find out the cause of your problems and will be able to make plans for your future.
Iris L.
Posted: Sunday, December 16, 2018 6:40 PM
Joined: 12/15/2011
Posts: 16143


Welcome James.  I was a doctor who developed cognitive changes years ago, and I had to retire early.  I have a diagnosis of cognitive impairment not otherwise specified, which neans that my cognitive changes are due to other medical conditions besides Alzheimer's and the other more common dementias.  I have systemic lupus and a few other diseases that compromise my neurological system.  Cognitive impairment is not in the DSM 5; they use other terms.

I am still in the Twilight Zone!  But I am learning what I have to do to compensate.  I decided I was going to fight for my life!  I call us Dementia Pioneers because we are the first generation of patients who can be proactive in our own lives.  Only a small number can become Pioneers due to the progress of their illness.

 

I learned as much as I could.  I learned from my fellow patients and from the caregivers.  I learned about Best Practices.  In your case, I suggest you learn "work accommodations."  Search this message board for links;  I don't have access to my oun work accommodation link.

Read the book Concussion by Jeanne Marie Laskas;  it is the story of Dr. Bennet Omalu who discovered the pathology of CTE.  The difference between traumatic brain injury and the dementias is that the dementias progress whereas the effects of TBI are not supposed to progress.  Nevertheless, researchers are still learning the prognosis of CTE.  You might consider a clinical trial at some point.

Also, be advised that employers may be able to fire you once they get an idea that you have a cognitive impairment.  It is probably illegal, but you won't have the energy to fight them.  Prepare yourself for early retirement.

TThis is all I can say for now.  Take steps one at a time.  Follow the suggestions given above.  Remember that what you are experiencing, we also experience.  Rely on your fellow patients.  Many professionals are clueless as to what we need.  Keep posting and asking questions.  So long for now.

Iris L.


AmyJo5
Posted: Monday, December 17, 2018 8:09 PM
Joined: 7/28/2017
Posts: 176


Hi James,

Just some thoughts as a Professor who has suffered multiple concussions, enough to clearly impact my abilities as teacher.Mainly, I want to share that I am very open with my students, which has been effective: If I start to get off-track, I ask them to bring me back; If I have a headache, I usually push through but if I need to reorganize the class in response, I do. I'm an English professor: I only rarely lecture. And I have multiple other strategies I use so that ultimately my TBI or MCI (I'm floating somewhere undiagnosed between the two) is just another mysterious factor in the mysterious process of learning and teaching.
I feel for you and your family: I'm a little younger (54) so I can add no advice regarding future. Just some thoughts as a Prof.
Sending best wishes to you, your family, your future.

 


John1965
Posted: Monday, December 17, 2018 8:59 PM
Joined: 8/19/2016
Posts: 333


From our experience:

MCI diagnosis in your position is grounds for disability. You do not have to continue working.

Ask your neurologist about a lumbar puncture to look for tau protein and a PET scan to look for amyloid plaques. 

Sorry this is happening to you! Hopefully yours is one of the cases that stops at MCI.


Iris L.
Posted: Tuesday, December 18, 2018 4:33 PM
Joined: 12/15/2011
Posts: 16143


JJames if you decide to apply for long term disability, consider taking short term disability first , pending completion of your medical and neurological workup.  

It may take some time for long term benefits to be approved.  Short term disability may require only a doctor's signature.  Consult with your Human Resources Department or an employment lawyer if necessary.

Iris L.


James1975
Posted: Wednesday, December 19, 2018 11:21 AM
Joined: 10/13/2018
Posts: 2


Dear All,

                Thank you for your encouragement and advice. It is much appreciated and helpful.

We did a pretty careful POA a few years when our children moved out. We should, however, make an appointment with our financial advisor.

You remind me that I have disability insurance through my work, but haven’t been able to find the specifics. No doubt HR could help, but I’m not yet ready for my school to know about my condition. Few faculty really trust the administration. I like what I do and I think I am functional enough that I can continue for awhile yet. I also have accumulated a couple of semesters of sabbatical leave. I have no idea how that would play out with disability insurance. I suspect it’s a grey area. I am likely eccentric enough in the best of circumstances. I would rather not have everything I do interpreted through a disability. Besides, I’m tenured, so difficult to get rid of, at least for a few years - I hope. Something that is troubling is whether I would be sacrificing full enjoyment of retirement, at least for a few years. In a practical sense this is where the twilight between cognitive stability and cognitive decline is unsettling.

AmyJo, it was nice to hear from someone in the profession. What you describe is familiar. Do you also get a fullness in the head, as if you were wearing a too tight hat? It usually precedes the stabbing headache. I am a professor of history. I keep trying to figure out ways to ‘flip’ the classroom. With some topics I can. Most of the time I feel they don’t have enough knowledge coming in to make it work. I have started the semester saying my memory is poor and it is unlikely I will remember their names.  A few times, when it feels like the pause or absence of memory is too unaccountable, I have mentioned that I am suffering from the effects of concussions, but don’t mention it could be progressive. This sounds arrogant, but psychologically what I struggle to adjust to is just feeling stupid, especially in meetings, trying to follow a lecture or read for content.

 

Again, thank you everyone. Thanks for listening.