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Initial Shock - Beginning the journey
Meltdown
Posted: Monday, December 19, 2011 12:35 PM
Joined: 12/19/2011
Posts: 17


This morning I got the phone call from my Dad that the second of his older siblings died this morning from Alzheimer's. He's all that's left now, and though he has been saying for years he dodged the bullet (first generation AD to our knowledge, and he wants to believe that out of 3 one of them should have). He has been showing signs for years. We know he has it too, and it's bad enough to scare me & Mom because he won't face it and is doing some scary things now.

 

I have done much research on AD previously, beginning with (because it's so similar), my 99 y/o grandmother I took care of in her last year. She still had her own apartment till 96. Then the Dad situation increased my research (what are we going to do?).

 

These were not early onset, but obviously it is quite disturbing as to my risks. Meanwhile, I am now 51, and though I've been concerned something is wrong with me for 3 years, I've been hiding it well. I have additional risks (multiple bad concussions, and many others that are hit or miss as increased risk depending on where you look). I used to have memory like an elephant, but at work about 3 or 4 years ago, things started happening. People asking for a project, me freaking out I hadn't done it, and then finding it, forgetting names of people I knew, etc. I attributed it to the fast pace and pressure, and tried to stop letting others see the blank look on my face when asked about something I had done but didn't remember. Another thing that's been bothering me is seeing a show I know I've seen when it starts, but for the life of me, I don't remember what happens next, so I go ahead and watch it again. Kind of scary, but again, I've been ignoring this for years now.

 

I left work to care for my grandmother, then unemployed for a year after her death, I decided to go back to school to be a Certified Nurse Assistant (which I am doing now). Just finished my first round of clinicals and it was quite disturbing. I could not remember the names or room numbers of my daily assignments without constantly pulling out my notepad. I cannot remember the names of the residents I had been assigned the day before. I kept getting "lost in the facility". No one seemed to notice (it was a running joke I go in the wrong direction, but I told them I was dyslexic, don't mind me), I got glowing reviews from the staff and my instructor that I have a gift for this type of patient care (formerly an accountant), but I wonder to myself dare I pursue this now? I test well, so my grades are great, but that's only because it's multiple choice, I never get the extra credits since they are fill in the blanks, and I stare at them, knowing I know this, but not finding the words in my head.

 

Saturday I had a huge shock that really hit me in the face. I was finally getting around to the genetic report I had done by my Dr. to access my heart risk, because my cholesterol is way high (not diet related), but there is no history of CVD in my family, and I am terrified of the side affects of statins (particularly memory loss), so she offered this test to see if maybe I do have extenuating factors (which I do) that will make "us more comfortable" about not artificially lowering my numbers in my case.

 

But, it turns out one of the predictive factors used on the labs was my APoE. So looking that up to research it against the other tests, I was shocked to see all this Alzheimer's stuff come up. I've been reading a lot about the pros and cons of testing, but for me - too late - it's on the record - I am 4/4. Now I am looking at my personal concerns that I have been hiding about my current "mind" compared to 10 years ago.....and I guess I need to have a talk with my Dr., but I don't know where to begin. I have to make a lot of decisions, and once I start opening this door, there is no closing it, and I can't handle some long drawn out process on the diagnosis, and it sounds like that is what I am facing.

 

I live alone and I've only told my Mom (like she needed that) what has been happening and my shock at this test, and my anger that it's in my record, and that now I really feel the need to report A LOT to my Dr. I would feel better if someone can tell me what to expect to pursue this regarding how long it might take to confirm, if EOAD cannot be ruled out quickly (which I don't expect to be likely, since my blood work is extensive and I have no deficiencies in other areas.

 

Obviously I am spilling this here, because I have no one else to talk to. TY for anyone who responds.


Ttom
Posted: Monday, December 19, 2011 1:02 PM
Joined: 11/29/2011
Posts: 182


Sorry for what brings you here Meltdown but glad that you found us. By all means, get some medical evaluation underweay ASAP! It can't hurt and if you are diagnosed they can begin the life saving drug therapy quicker. I was 55 when I started my evaluation and it took 2 1/2 years to make a diagnosis.

 

My disclaimer:
I'm not a professional in this area, only a person with AD that cares about others and can express myself yet. Diagnosed at age 58 in Stage 5, now appear firmly in Stage 4 for now- wonderful meds! I 'm 62 now..

We encourage you to call the Alzheimer's Association's 24/7 Helpline

1-800-272-3900 . Ask for a Care Consultant who will be available

Helpful hints for slowing the progression:

  1. Get Early detection
  2. Start the required drug therapy
  3. Avoid stress
  4. Mediterranean diet with antioxidants and Omega 3
  5. Mental and physical exercise


LATER... Tom

 


Mimi S.
Posted: Monday, December 19, 2011 1:18 PM
Joined: 11/29/2011
Posts: 7036


Hi Meltdown,

Welcome to our group. We're so glad you found us.

 

I am also diagnosed with AD, but at the more usual age. I never had the gene work done, but 2 of my dad's siblings had AD (in the years when supposedly it wasn't being diagnosed).

 

So find the best clinic around. Ask your local Alz. Chapter. Look in your phone book for Memory Clinic. Look for a teaching hospital or university with a dementia department.

 

From your library, get a copy of: The Complete Alzheimer's Guide. (?) by Doraiswamy and ?  (not at my home computer). It will begin by telling what needs to go into a complete exam.

Begin the Best Practices.

 

1. Strenuous physical activity.

2. Strenuous Mental Activity.

3. Mediterranean Diet. I also take antioxidants and Omega 3. Also vitamin D3. No smoking.

4. Lots of socialization.

5. If diagnosed: take meds as ordered.

I was diagnosed over 5 years ago. Just completed a 5 year post neuro-psych. My cognition is still way better than at the time of diagnosis.

Researchers in AD I have spoken with say I should not be unsual. Those diagnosed early and who follow the Best Practices regime should have the same results!


nwlegaleagle
Posted: Monday, December 19, 2011 1:48 PM
Joined: 12/6/2011
Posts: 3326


 

Hi, Meltdown. AD/dementia runs in my family, too. My father and 9 of his siblings died with EOAD symptoms and have 3 older cousins and a sibling who have EOAD. The moment I had symptoms, I went to my doctors, but after much testing, I was told I had no problems with memory. Six months later, I had another significant event I could not ignore and immediately had my genes tested. I have the gene PSEN 1. I was open about it and had to stop working. My doctor immediately put me on meds. I love retirement (on SS disability), but I experienced changes in my relationship with friends and family. A few friends dropped me, and a few became closer. Currently, I'm between Stages 2 and 3.  Yes, get tested because IF you are diagnosed with the beginning of dementia, better to get on the meds right away and make plans for your future. IF you have it, well even if you don't, it's important to get:  

   1. Durable General Powers of Attorney

   2. Health Care Directive

   3. Durable General Powers of Attorney for Health Care

   4. Last Will and Testament

 If a person with dementia waits too long to get these docs in place, hers or his wishes may get challenged. Better to make sure your wishes are followed.

One other thing, be mindful of your mood. Depression is not uncommon.

 

 

 


Meltdown
Posted: Monday, December 19, 2011 1:58 PM
Joined: 12/19/2011
Posts: 17


Thank you Tom:

 

I have been reading this and the other board since Saturday, and I finally called the 800 number to get Drs. (since they are real hit or miss in my area), so I have a list I can bring to my PC to help me chose one for diagnosis. Though I did just postpone my normal follow/up with her from this week till mid January while I digest all this.

 

I think the hardest part is going to be holding this in, especially right now with my Uncle's death this morning, and the fact that I have 5 siblings who really are not going to want to hear this. It's bad enough with no sign of this on my mother's side, she gave me the second APoE 4, and she is heartbroken over that, and the fact that she was driving the car in my first major concussion. I told her this was not her fault, (we luckily have a strong faith base in my family, so let His will be done is not too hard for me).

 

All genetic testing aside, I do not understand the prevalence of this insidious disease escalating from generation to generation (for everyone). In my case, I have major longevity in the grandparents generation - sure they got a bit batty in their nineties (normal dementia), but now Dad and his siblings get hit in their seventies - and this just was not an issue, so I've never bought the "increase is due to people are living longer now" thing. Not like it matters whether or not I figure that out now.

 

Shame of this is, after seeing that test, right after finishing my half way clinicals' (and scaring myself over how is anyone not seeing my deficiencies, and how dangerous could this be if what I suspect is true), my goal had been to work with Alzheimer's patients since so few can deal with it (went through quite a few CNA's with my G-mother who's dementia was totally AD behaviour that last year), and now realizing I may not even be there for Dad.....after already admitting to myself I couldn't go back to my old career is a bit of a yikes. In the interim, the Technical Institute I am studying at, I am also working at (teaching a different course of study), so I have a little money coming in during semesters, and the brain blurbs lecturing (since I can prepare the lectures ahead of time, and have a lot of reference material in front of me), are easily covered by throwing it as a question when  my mind goes blank.

 

One day at a time I guess.

 


Meltdown
Posted: Monday, December 19, 2011 2:09 PM
Joined: 12/19/2011
Posts: 17


Mimi:

 

I've seen you before too . TY for replying!

 

I have also seen you and others repeatedly tell others the steps to get with the project. Sadly, that strenuous exercise is not an option, I have long term Lyme and have been exercise intolerant for 15 years. (Lyme is a spirochete - another risk factor from what I am reading). Many don't realize that if not nipped in the bud, it will always be there, and I am sure this is not helping the situation. but that is a story for another day.

 

Thanks for the kind words and support coming in, as I wasn't sure how I would be received on "suspicion" of my situation, but I know myself well, and I kind of do know I am going to be here for the long haul.

 

 


Meltdown
Posted: Monday, December 19, 2011 2:58 PM
Joined: 12/19/2011
Posts: 17


TY nwlegaleagle:

 

 Yes,  I am already formulating the legal things I need to do.

 

I just got off the phone with my G-mother's CNA, who - we are like sister's now 2 years later, and the only one besides my parents I can talk to about this.

 

 She tried to start with it's stress, but when she heard the whole story, she knows too now what I am dealing with is not normal, and that the minute I pursue this, there is no way I can be a CNA too.

 

This is what scares me about moving forward. I am going to be unemployable. I already honestly knew I couldn't go back to an executive job, but I was playing it like I just want to do something more meaningful. Like I said - I can still fake it in what I do (which is really just P/T work, but I'd prefer to come clean at the right time if I have to (before I can't hide it anymore).

 

She says to calm down and wait, but besides the fact that she will be my healthcare proxy, I have to figure out other things (I don't have children, so that is a TY God, I never thought I would say), but legally, there is still a husband, although we have been apart for 3 years due to the job situation where I live  - he has been working out of State). We aren't enemies, but there is no real marriage anymore, (the employment was not the only reason I sent him back home) except on paper, and I'll have to figure out what to do with him (for his sake - lol!). I handle everything.


nwlegaleagle
Posted: Monday, December 19, 2011 5:25 PM
Joined: 12/6/2011
Posts: 3326


Meltdown wrote:

This is what scares me about moving forward. I am going to be unemployable. I already honestly knew I couldn't go back to an executive job, but I was playing it like I just want to do something more meaningful. Like I said - I can still fake it in what I do (which is really just P/T work, but I'd prefer to come clean at the right time if I have to (before I can't hide it anymore).

  

If or once you are diagnosed, use the diagnosis to apply for Social Security Disability. When you get it, retire from you position. Then apply for one of the many meaningful volunteer positions waiting to be filled! 
 


nwlegaleagle
Posted: Tuesday, December 20, 2011 11:57 AM
Joined: 12/6/2011
Posts: 3326


Ttom wrote:
nwlegaleagle wrote:
Meltdown wrote:

I'm pretty sure that you won't be approved for SSDI as long as you're working.

 

 

Oh, yes, Tom. You're right. I should have been more explicit. What I meant to say was that while I was still employed and learned I had AD, I began preparations before leaving employment, e.g. putting together legal documents (powers of attorney, health care directives, etc.), getting copies of medical records, learning about my employers disability benefits and how to apply, learning about how to apply for SSDI, evaluating my financial condition and making plans to adjust to the big loss of income, etc. So when I left work, the transition went smoothly, including being prepared for the gap before benefits kick in.

Meltdown
Posted: Tuesday, December 20, 2011 1:22 PM
Joined: 12/19/2011
Posts: 17


Well, I guess I have to find the humor in this. Mom can't keep a secret!

 

She already told Dad (who lost his last sibling Monday to AD), and refuses to admit he has it too (I won't get in the car if he's driving anymore). His solution is for me to move in with them immediately - LOL! Mom's already got him, and he has no clue what a burden he is. Besides, I'm not that bad yet - I'm still hiding it pretty well.

 

Also, DH caught me at a bad moment last night when he called, and I told him what he might be facing (had no intention of saying anything for a while). We have been apart for 3 years now due to his job and a major indiscretion on his part. I was rather shocked at his response. He told me "You never divorced me when you should have, and even if I haven't been much of one to you (and I'm sorry about that), you are my soul mate. I'll be there for you no matter how ugly it gets!" I came right out and told him I had no feelings left for him, and he told me "I don't care, it's not just lip service for me when I say LYB every night". I'm a bit beside myself with this revelation, I was certain he had replaced me by now. Go figure. Man do I have a lot of soul searching to do!

 

Calming down, researching, researching, researching....being realistic and pragmatic about all this. I just wish the question could be answered tomorrow. I don't do well in limbo.

 

Such conflicting info for my case. Is the Lyme contributing, causing this or just the problem. There is one LDMD that has found Lyme spirochetes in 7 out of 10 AD brains studied, but the Lyme community is all over the place on this issue. Either way, another contributing factor for the list, each one of which just makes the 4/4 more and more likely to be hitting me early.

 

Was able to speak with a really good voice of reason last night, who has convinced me to just move forward for now, as if none of this is happening (continue pursuing the CNA license as planned, as there is only one semester left and I've only got $300 left in tuition to do so), while I teach the next semester too. "Don't put anything on hold yet." It's just that I committed to 35 hours of teaching the semester that starts in January (up from while I am taking 12 hours of courses/week, and that's a pretty big challenge, even before all this came up.At least I have a month to do the lesson plans for the teaching part, and the next course I need is using the same Textbook I already used this last class.

 

Shoot - 5 years ago I got my RE License online by myself in 30 days from start of the course, to passing the State Exam, (not to sell, I was doing Property Management at the time & the firm needed more than my managerial & accounting skills) and wowed the world. I just know I couldn't do that now....

 

Sorry, my emotions are all over the place trying to face all this.Thanks for listening.

 

 



JAB
Posted: Wednesday, December 21, 2011 2:20 PM
Joined: 11/30/2011
Posts: 740


Meltdown, APOE4/4 increases your risk of developing late-onset AD, but does not mean that you absolutely are going to develop AD.

You are at exactly the right age for other physical problems to crop up that can cause dementia symptoms.  These are readily treatable.  They include hypothyroidism and vitamin B12 and/or D deficiency.  And if you're menopausal and have not started hormone replacement therapy, that's a very likely cause of your problems, too.

I don't believe Lyme has been established as a risk factor for AD -- the possible role of various types of infection in triggering AD is still very controversial -- but it is my understanding that it can cause symptoms that mimic AD.  Many types of infections can cause encephalopathies that produce dementia symptoms.

The Lyme is going to complicate your getting a solid diagnosis.  If at all possible, you should be seen by a major research group, e.g., at a university or research hospital, that specializes in the diagnosis and management of dementia, and preferably one that focuses on early-onset dementia.  See:

 

http://www.alzcompend.info/?p=264


Iris L.
Posted: Thursday, December 22, 2011 2:39 AM
Joined: 12/15/2011
Posts: 16102


Meltdown wrote:

This morning I got the phone call from my Dad that the second of his older siblings died this morning from Alzheimer's. He's all that's left now, and though he has been saying for years he dodged the bullet (first generation AD to our knowledge, and he wants to believe that out of 3 one of them should have). He has been showing signs for years. We know he has it too, and it's bad enough to scare me & Mom because he won't face it and is doing some scary things now.

 

I have done much research on AD previously, beginning with (because it's so similar), my 99 y/o grandmother I took care of in her last year. She still had her own apartment till 96. Then the Dad situation increased my research (what are we going to do?).

 

These were not early onset, but obviously it is quite disturbing as to my risks. Meanwhile, I am now 51, and though I've been concerned something is wrong with me for 3 years, I've been hiding it well. I have additional risks (multiple bad concussions, and many others that are hit or miss as increased risk depending on where you look). I used to have memory like an elephant, but at work about 3 or 4 years ago, things started happening. People asking for a project, me freaking out I hadn't done it, and then finding it, forgetting names of people I knew, etc. I attributed it to the fast pace and pressure, and tried to stop letting others see the blank look on my face when asked about something I had done but didn't remember. Another thing that's been bothering me is seeing a show I know I've seen when it starts, but for the life of me, I don't remember what happens next, so I go ahead and watch it again. Kind of scary, but again, I've been ignoring this for years now.

 

I left work to care for my grandmother, then unemployed for a year after her death, I decided to go back to school to be a Certified Nurse Assistant (which I am doing now). Just finished my first round of clinicals and it was quite disturbing. I could not remember the names or room numbers of my daily assignments without constantly pulling out my notepad. I cannot remember the names of the residents I had been assigned the day before. I kept getting "lost in the facility". No one seemed to notice (it was a running joke I go in the wrong direction, but I told them I was dyslexic, don't mind me), I got glowing reviews from the staff and my instructor that I have a gift for this type of patient care (formerly an accountant), but I wonder to myself dare I pursue this now? I test well, so my grades are great, but that's only because it's multiple choice, I never get the extra credits since they are fill in the blanks, and I stare at them, knowing I know this, but not finding the words in my head.  

 

Saturday I had a huge shock that really hit me in the face. I was finally getting around to the genetic report I had done by my Dr. to access my heart risk, because my cholesterol is way high (not diet related), but there is no history of CVD in my family, and I am terrified of the side affects of statins (particularly memory loss), so she offered this test to see if maybe I do have extenuating factors (which I do) that will make "us more comfortable" about not artificially lowering my numbers in my case.

 

But, it turns out one of the predictive factors used on the labs was my APoE. So looking that up to research it against the other tests, I was shocked to see all this Alzheimer's stuff come up. I've been reading a lot about the pros and cons of testing, but for me - too late - it's on the record - I am 4/4. Now I am looking at my personal concerns that I have been hiding about my current "mind" compared to 10 years ago.....and I guess I need to have a talk with my Dr., but I don't know where to begin. I have to make a lot of decisions, and once I start opening this door, there is no closing it, and I can't handle some long drawn out process on the diagnosis, and it sounds like that is what I am facing.

 

I live alone and I've only told my Mom (like she needed that) what has been happening and my shock at this test, and my anger that it's in my record, and that now I really feel the need to report A LOT to my Dr. I would feel better if someone can tell me what to expect to pursue this regarding how long it might take to confirm, if EOAD cannot be ruled out quickly (which I don't expect to be likely, since my blood work is extensive and I have no deficiencies in other areas.

 

Obviously I am spilling this here, because I have no one else to talk to. TY for anyone who responds.

 

 

 

Meltdown, this is exactly what happened to me.  I was a physician and I lost enough of my memory so that I could no longer practice medicine.  That was over 24 years ago this week. 

 

You are caught between a rock and a hard place.  If you continue the way you are, you many not have enough brain power to teach and to perform your CNA duties.  if you proceed to diagnosis, and get put on memory medications, you may function better, but you will probably no longer be employable.

 

Lyme disease causes a dementia just like tertiary syphylis does.  Lyme dementia mimics AD.  I don't know the results of studies of treatment in the chronically infected.  Like JAB said, you need to be at a research center for a thorough evaluation.

 

Don't give up on your DH yet.  Give him a chance and give your marriage a chance.  Many marriages begin to wither under the strain of undiagnosed dementia because the patient's behavior seems so unusual and outlandish at times.  Start reading the Spouse/Partner boards, especially on the old board if you can and when they get archived.

 

Don't make any sudden changes in your life.  You need careful consideration at this time before all new situations.

 

Keep coming back to this board and post your questions.  Many will help you if we can.

 

Iris L.



Meltdown
Posted: Thursday, December 22, 2011 7:50 AM
Joined: 12/19/2011
Posts: 17


For the record, I have no vitamin deficiencies or other problems per my blood work. I also am 10 years post-menopausal (removal of ovaries in 2005) and made it through that without HRT, and from what I can see, that should not be an issue this far into it.

 

I do see now that the drugs I have been on for 15 years to keep my physically mobile (from what the Dr. will only admit is damage done by the Lyme - not that it might still be in me, and I no longer show positive in my blood for that), could have been building up in my system, and might a contributing factor to the memory problems that I now have, and it seems up in the air as to whether stopping them now would be reversible, but even if I do, then I'm physically impaired. Also seems that having been under anesthesia 4 times in the last year (between January & May), 3 outpatient procedures and the final one being general for surgery, might be part of the escalation? 3 severe concussions between 15 & 21, yada yada.

 

It just seems I have A LOT of contributors that with that 4/4 have increased my risk for EO.

 

Anyway, I have postponed my regular PC (was supposed to be today) till after Holidays, but the lab that ran the gene testing has been trying to follow-up with me for counseling, and I have accepted a phone consult today for that. It's just I don't know if they will discuss the APoE as regarding AD, since it was run for a Cardiovascular risk assessment. I will see what they want to tell me, digest all of this information I am finding, discuss this with my Specialist who prescribes the drugs I am taking, and then have more of a picture to discuss with my PC the following week (2nd week in January). I also had 23forMe already ordered for geneology purposes, and I see now it's also a bit of a health screen (though not for AD except for the APoE, which I already know), but it could hint to something else as an explanation - who knows.

 

Thank you ALL for the input. Now I need to take some time to get ready to pursue this, (though how I am going to fit that into the upcoming semester's schedule is beyond me, as the nearest place to really get full assessment is an hour and a half away (Jacksonville, FL), and then I have to see what my insurance will cover.

 

I will be in and out over the next month with questions and updates. The frustration is the process of getting to the bottom of this, and I see over the past year (I should probably put some links into the research thread), there are blood tests being developed for AD (simplify the diagnosis big time), all over the US & the rest of the world, some of which may be available in as little as a year, but as long as 5 years out.

 

I wish everyone a wonderful Holiday Season!

 

Mel