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Question I Should Ask?
Topdogjim
Posted: Saturday, July 30, 2016 5:11 PM
Joined: 7/14/2016
Posts: 20


So far I have sat with a doctor who went over the results of the 2+ hour testing that got as part of the memory disorder clinic. He said I have dementia. My mind went blank and I could not think of anything to ask. My wife asked a couple of questions about depression and he said it was dementia. 

My next stop was at the memory disorder clinic where we met with the head of the clinic, a phystrist. She did an interview with my wife and I. Then she privately gave me more testing. At the end she said I have a complicated type of dementia. She tried to get me a pet scan but was refused by the insurance. I did have an mri but she said it was not the one she would have asked for. Grrrr

Next I was sent to a neurologist who specialized in dementia. She looked at all the testing results and said I should go and address my depression (which is 100% under control) and nothing they could do about the dementia. 

Next week I go to New Haven Yale for more evaluation. My wife tends to take over the exams and ask more questions and confuses me and I feel takes the doctor in that direction. I'm so confused at this point. Honestly I am not capable of coming up with question, to overwhelmed. 

I think it's been about 6 weeks and I still do not know what is gapping to me. 


Mimi S.
Posted: Saturday, July 30, 2016 6:38 PM
Joined: 11/29/2011
Posts: 7029


Yale is a good place.

If you get a written report, you can go over it at your leisure.  Are scores given in percentiles? Raw scores are fairly meaningless.

Your goal is to figure out your strengths and weaknesses.  Look for an email or phone number so you can ask follow up questions.

Do ask about the specific type of dementia. It's not unusual to have more than one type.  Meds given take this into account.

PET scans are usually not covered by insurance.  Ask about Clinical Trials; you get fantastic care at no cost.

Six weeks is not bad for all the tests you're getting.

Do tell your wife how frustrating it is when she takes over the conversation . A compromise is needed because she also has questions.  She can help the doctor speak to you more than is happening now.

Do look for Bill's comments on the Younger Onset Board.  He and his wife seem to do well working together .


Iris L.
Posted: Saturday, July 30, 2016 7:18 PM
Joined: 12/15/2011
Posts: 16575


Jim, I have been on medication for seven years and I still don't have a specific diagnosis.  But I do have treatment, which is keeping me stabilized, and not causing any side effects.  This is what is important to me.


My point is that you may not get a specific diagnosis.  All you may get is closer to treatment and to some sort of a guidance for your life.  What the doctors tell you may be conjecture. You will have to ponder what they tell you, based on what you know about your own life.  As Mimi says, learn your strengths and how to improve on them, and learn your weakness, and how to compensate for them.


You say the depression is 100% controlled.  Has the psychiatrist written a medical report about the treatment of your depression for your neurologist?  It can help in the neurologist's conclusion, and it will help the Yale consultants.


As far as asking questions, why don't you write down exactly what you have posted about being confused about what is going on with you.  Let the Yale consultants know this.   You might ask them, what your next steps should be.  Let them know you want answers.  You might ask the specialists at Yale if medication could help you.  Also, if you qualify for SSDI.  

Be sure to write down what they tell you, and ask for a copy of whatever reports they make on you for your own records.


The main web page, alz.org, has a list of questions to take to the doctor's office.  You can find it here:


http://www.alz.org/africanamerican/documents/aa_ED_doc_checklist-030609.pdf


There is a book that explains the diagnostic procedure, The Alzheimer's Action Plan, by Doraiswamy and Gwyther of Duke University.  You might obtain a copy and read it together with your wife for more information.  


It is overwhelming, but you can get through this.  We will all be here when you return from your consultation.


     {{{{{{{{ Jim }}}}}}}}


Iris L.





The_Sun_Still_Rises
Posted: Monday, August 1, 2016 5:21 PM
Joined: 7/24/2015
Posts: 3020


The neuropsych is very good at rooting out psydo-dementia caused by depression from actual dementia.  The problem is, dementia just literally means that there is something wrong you brain...it does no tell you what, or why.  This is, unfortunately, the best (at this time) that doctors real can do. 

So, the NEXT step is think about medication for the dementia.  The standard treatment is Aricept (an the ilk).  Aricept does no treat the dementia per se, but rather helps you have MORE neurotransmitter work with.  Sort of like oxygen for someone bad lungs. 

Now, no everyone can take it...or tolerate it well...but, for those who can, they swear by it.  The TRICK is start a VERY low dose an slowly (over months) work you way up full dose.  This allows the body time adjust it.  It is common no real see improvement on it...an this is because it doesn't actually help us think better (like in comparison speed ilks)...but rather, helps us no notice progression as much.  Or, stay functioning like we are no progressing as much as we are...if that makes sense?

The tests DO hit like a ton of bricks...so please take some time digest it an do nice things you self. I like tell people after a result...is...just because a paper say this, does no mean end of world or life for you...you still have plenty good things life.  And, no matter what, you still the same you you were before the testing. 

Doctors, even the so called experts in field, do no seem always know what say of do with patients...esp the younger onset folks.  They are used older peop, who's lives already completed...and so they dance around it.  Indeed, I often think people skills sorely lacking in doctors. 

You always know you self best...an better than the doctors know you.  An, you know you depression...if it is be managed, it is managed an a non issue. 

Hang in there.  <3


Topdogjim
Posted: Tuesday, August 2, 2016 7:13 AM
Joined: 7/14/2016
Posts: 20


I finally had a morning where my head was clear enough to start my list of questions for both the social worker at the memory disorder clinic and the doctor at Yale. We meet with the social worker Wednesday and the doctor at the end of the month. If I could have mornings like today I would dance for joy. No headache and alert. Even pouring rain does not stop the feeling. Spending a few extra days at the camper, fixing things and listening to music. I did not take my walk yesterday but I did go out on the golf cart and met 3-4 new people. One guy's name was Jim, not sure about the others.
Iris L.
Posted: Tuesday, August 2, 2016 11:24 AM
Joined: 12/15/2011
Posts: 16575


Jim, do you keep a notebook?  I write down my daily To Do list and what I want to remember, such as names of people I meet.


Best wishes on your appointments.


Iris L.


Paul Hornback
Posted: Tuesday, August 2, 2016 11:46 AM
Joined: 8/9/2013
Posts: 584


Jim, incredible advice from everyone. Good luck with your appointment. Do make an exhaustive list of questions (written down) so you won't forget anything.

God bless, Paul


NancieJ
Posted: Wednesday, August 3, 2016 12:40 PM
Joined: 7/28/2016
Posts: 4


I was turned down for a PET scan by my insurance, I still work full time, and I was going to pay for it myself, but the PET scheduler told me to go to clinicaltrials.gov and look for Alzheimer's and PET scans and I called every place that offered them  until I found one that was accepting new candidates.  So now I'm in the clinical trial, and have a two out of three chance of getting a medicine that might actually clear the plaque from my brain.  It seems like a much better alternative than doing nothing until I'm not in a position to do anything for myself. The wait and see attitude of the medical profession just doesn't work too well for younger people.  I'm at work every day, just wondering how long I will be here.  I can't find my way back and forth to work without the maps app telling me when to turn.  My boss, who is in another city, asked who I worked near (on my floor), I couldn't remember anybody's name, not one single person.  I woke up the other morning from a dream and was trying to figure out how old I was in a particular year, so then I tried to remember my age, and I couldn't.  I remember now though, it's 50.  Look into the clinical trials.  They seem to be having a hard time recruiting people.  You need to have good scores on some tests and bad scores on others.
llee08032
Posted: Wednesday, August 3, 2016 10:12 PM
Joined: 5/20/2014
Posts: 4405


Welcome to the board Nancy and thank you for sharing the information about the clinical studies! 

I am still working also. Not long ago I got to work and couldn't figure out how to navigate the parking lot to get to my parking space.


Iris L.
Posted: Wednesday, August 3, 2016 11:24 PM
Joined: 12/15/2011
Posts: 16575


Nanci, search on this board and google "work accommodations for cognitive impairment."  You will get some ideas to help you at work.


I don't remember, do you have a diagnosis yet?  


My neurologist does not have a wait and see attitude.  He offered me a trial of Exelon patch.  I noticed improvement in my memory, daily functioning and speech within a few days.  I have been on Exelon patch and Namenda for seven years, and I am doing well.


Iris L.


a_step@a_time
Posted: Thursday, August 4, 2016 1:21 AM
Joined: 11/21/2015
Posts: 237


II found this website interesting when I need accommodation information.

http://askjan.org/media/aging.html

 

Unfortunately the employers know these sites too and can get you pigeon holed so you get put into the most boring job that you go more nuts because they don't let you research on web or do mind activities that would help you at your job.   All while they let the younger generation take all sorts of leave excuses and goof off on Facebook all day.    


NancieJ
Posted: Thursday, August 4, 2016 1:35 PM
Joined: 7/28/2016
Posts: 4


Thanks guys.  I really don't want to give up my job.  I'm making more than I ever have in my life.  I can do the work, which is reading legal documents and making revisions without any problem.  I'm very tired when I get home though and can barely make it through dinner.  I just don't see myself being able to work for much longer.  How do you make the transition from working full time to collecting SSDI?  I read something that said you had to be out of work for two years before you could collect it.  I'm progressing very quickly, so I don't see that being an option.
Iris L.
Posted: Thursday, August 4, 2016 4:29 PM
Joined: 12/15/2011
Posts: 16575


Nanci, you make the transition to SSDI by being unable to work, not even part time.  If you can perform your job, then you can work.  That's why I suggested work accommodations, to help you perform your job with accommodations.  


Have you had a thorough medical evaluation to search for medical causes of why you are so exhausted?   Have you gotten an overnight sleep study in a sleep lab to look for sleep apnea?  Sleep apnea can contribute to your feeling exhausted.  My deep exhaustion improved once I got treatment for sleep apnea.  I am still fatigued, but not as badly.



Iris L.

 


alz+
Posted: Thursday, August 4, 2016 4:50 PM
Joined: 9/12/2013
Posts: 3560


My reaction to getting the Alzheimer's diagnosis was to immediately prepare for being bed ridden.

I stopped at a Walgreen's and bought disposable diapers, a zinc cream, and bunch of stuff like that. I did not for a  minute think I was overdoing it!  ha!

Now it has been a few years ? but looking back I  see the problems started in 2001, recognizable problems. That is a long time to have accommodated cognitive issues.

Today I was left alone and decided to bake chocolate chip cookies. My husband had some of the ingredients out. It took me about 30 minutes to  mix the batter. Did not burn myself but I was nervous about it and went over instructions over and over. Half -way through baking I remembered I did not add white sugar.

they are not the cookies I used to bake and I felt upset and ashamed. due to practice in these events I forgave myself. I  think I added salt 3 times and dropped vanilla on floor.

they are not good. I am ok with it.

To those about to get a diagnosis, before you go cut yourself some slack about the weeks afterward. You will learn to compensate for many things. When you get the hang of living with it instead of dreading it or fighting it, life gets much easier.

love and courage to everyone


The_Sun_Still_Rises
Posted: Sunday, August 7, 2016 2:59 PM
Joined: 7/24/2015
Posts: 3020


I would apply immediately when you can no longer work...remember it takes them a long time do their paper work.  Their usual timelines are 6 months an a year. 

That said, I would highly advise you FIRST, when you get a dx, apply for workers long term disability.  They pay much much more than SSDI...they pay you the top earning quarter...until age 65, at which point you could transition to SS-Retirement...which also pays much much more than SSDI.

The little known fact is, once the SS declares you disabled...no only do you risk getting less than the amount shown on the form they send you every few years...but this is the amount you get for life.  You will not move up to retirement when you reach that age.  Just a thought. 

You might want to discuss you details with a disability attorney and they can advise you on the best financial choices for you. 

<3


TheSteven
Posted: Sunday, August 7, 2016 3:21 PM
Joined: 10/11/2014
Posts: 167


Hi Jim,

Do you by chance have any of those so called silver dental fillings that are actually 50% mercury? Mercury fillings causes Alzheimer's as well as depression and 38 other diseases and conditions. After I had mine removed and started mercury detoxification my memory, aphasia and cognitive abilities improved so that they downgraded my diagnosis from Younger Onset Alzheimer's to Mild Cognitive Impairment. I also went off my donepezil (Aricept) and will now be doing annual followups instead of six month followups as Massachusetts General. I posted these links before. See http://amalgam.org/education/scientific-evidenceresearch/results-removal-amalgam-fillings/ or

http://www.fda.gov/ohrms/dockets/dailys/02/Sep02/091602/80027dde.pdf

I have more links to this type of information and videos about this in my July 4, 2015 blog entry at http://thestevenalztreatment.blogspot.com


llee08032
Posted: Monday, August 8, 2016 8:13 AM
Joined: 5/20/2014
Posts: 4405


Nancy,

I can relate to not wanting to give up your job. I still have not thought through the transition from working to living on disability income and do not have any grand plans in place. My focus is on paying down some bills so I can survive and putting as much money as I can into my mere pittance of a retirement fund. Also I am giving thought to how I'll spend my time and in which ways I can keep busy and find fulfillment and joy. I'm just taking it a day at a time and doing the best I can each day. I feel my progression is slow and am thankful that I may have more time to work. 

If you have diagnosis of dementia you may qualify for having SSD benefits fast tracked.


MooJag
Posted: Tuesday, September 6, 2016 1:18 PM
Joined: 8/30/2016
Posts: 1


Thank you for the analogy.  It was very helpful.
Iris L.
Posted: Tuesday, September 6, 2016 5:36 PM
Joined: 12/15/2011
Posts: 16575


Welcome to our online support group, Moojag.  Please feel free to share more about yourself and to seek and give support.  We are here to help each other.


Iris L.


Mimi S.
Posted: Wednesday, September 7, 2016 9:11 AM
Joined: 11/29/2011
Posts: 7029


Dear Topdog,

Haven't heard from you in a while. I'm interested in learning more about your headaches and how the professionals relate them to dementia.

Dear MooJag,

Welcome to our world. Do tell us more about yourself and your situation.