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Just diagnosed with early onset ALZ at the age of 48
Geegee
Posted: Monday, June 4, 2012 8:12 AM
Joined: 11/29/2011
Posts: 514


Welcome, Nie!  I'm a little tardy getting a reply and welcome in here!   You have already gotten all of the good advice.  I know you will be fine because from your writings, it seems you are really listening to advice and following it!


You are doing what I said I was going todo when I was diagnosed 2 years ago.  You recognize the great importance of learning everything you can.  I'm so sorry you are experiencing your parti

cular problems.  Each one of Usis affected differently by this disease.  


Follow all of the wonderful words of experience and wisdom above!  Keep sharing with us.  We will be here for you in every way we can be.


Nie
Posted: Monday, June 4, 2012 3:11 PM
Joined: 5/30/2012
Posts: 66


Iris L. wrote:
Nie wrote:

 Now if I could get him to do the bills and to realize they DO come every month!  He's never been good at that.   

 


 

Nie, I put my utility bills (electric, gas, telephone and newspaper) on automatic debit.  One of my credit cards automatically debits the minimum payment if I have not sent in a payment so that I won't ever be late and incur late fee charge. 

These measures help me a great deal.  I had (still have) the same trouble with missing payments because of forgetting and mislaying invoices.  As a matter of fact, I mislaid my mortgage invoice for June.  I'm still searching for it.

Iris L.
 


That is a very good idea.  I am going to set that up.  I used to be so organized.  Now my piles of bills and lists are just everywhere.


Nie
Posted: Monday, June 4, 2012 4:00 PM
Joined: 5/30/2012
Posts: 66


Geegee wrote:

Welcome, Nie!  I'm a little tardy getting a reply and welcome in here!   You have already gotten all of the good advice.  I know you will be fine because from your writings, it seems you are really listening to advice and following it! 

 


 

You are doing what I said I was going todo when I was diagnosed 2 years ago.  You recognize the great importance of learning everything you can.  I'm so sorry you are experiencing your parti 

cular problems.  Each one of Usis affected differently by this disease.   


 

Follow all of the wonderful words of experience and wisdom above!  Keep sharing with us.  We will be here for you in every way we can be. 


Thank you Geegee!  


jfkoc
Posted: Monday, June 4, 2012 6:02 PM
Joined: 12/4/2011
Posts: 20409


Welcome from me too...I am a caregiver but track here as a learner.

 

If you click archive (near top right of page for each forum) click search and fill in with coconut oil a lot comes up.

 

JAB's point was that it is MCT, a component of the coconut oil which may beneficial. The oil itself is high in saturated fat.  MCT can be purchased as a stand alone product.

 

There were also posts re huperzine A you can probably find archeived.

 

Now about that missing sock you think will eventually appear....never happens here.  We think the dryer eats them. lol.

 

 


Nie
Posted: Tuesday, June 5, 2012 6:34 PM
Joined: 5/30/2012
Posts: 66


Thanks jfkoc,

I appreciate the information. I could use whatever boost I can find right now.  Work has become such an exhausting struggle.  I swear my eyes are playing tricks on me.  I check and double check my work and simply do not see the errors.  Words, numbers etc.  

Also, ok I may really sound bizarre asking this, but has anyone had weird vision changes or issues related to taking Aricept?  Last night I left a dark room and entered the lighted hallway.  I saw these somewhat thick semi transparent beams of light coming straight down from the ceiling. No skylight or any window near there.  Almost like a real pale version of a straight rainbow!  Scared the heck out of me.  I went back in the bedroom, waited a couple minutes and returned to the lit hallway..same thing!!    I went to bed and stayed there.

Either "they" are trying to beam me up, haha , something is wrong with my vision or this is an Aricept side affect I have not read about? . So far no issues today.  I guess I will see what happens when it gets dark tonight...


Mimi S.
Posted: Tuesday, June 5, 2012 6:50 PM
Joined: 11/29/2011
Posts: 7027


Hi Nie, I only had GI reactions to aricept. Had same side effects from another drug for another disease. Going on latex free diet did the trick, but have yogurt every bedtime with that set of pills.

 

You might google side effects of Aricept or have a consult with your pharmacist about what's happening to you.

 

I would not doubt that it might be a side effect since people have experienced hallucinations. 

 

Some people switch to taking it in the morning.


Nie
Posted: Tuesday, June 5, 2012 7:17 PM
Joined: 5/30/2012
Posts: 66


Thanks Mimi!  I will do some more checking and call the pharmacy too
Geegee
Posted: Wednesday, June 6, 2012 8:25 AM
Joined: 11/29/2011
Posts: 514


Nie, I also only experienced GI effects from ARicept.  So, LOL!  I decided to switch to Exelon patch!


The only visual disturbances I have had that were "slightly similar" we're caused by Optical Migraines.  With the lights, I would experience areas to blind spots in my vision, etc.


My advice is to check with your  neurologist and eye dr. if you have any more such light disturbances.  You sound too healthy to worry about "going to the light" right now (humor intended).  


I haven't heard of anyone in the past talk about such Aricept side effects.


Nie
Posted: Wednesday, June 6, 2012 11:28 AM
Joined: 5/30/2012
Posts: 66


Geegee wrote:

Nie, I also only experienced GI effects from ARicept.  So, LOL!  I decided to switch to Exelon patch! 


 

The only visual disturbances I have had that were "slightly similar" we're caused by Optical Migraines.  With the lights, I would experience areas to blind spots in my vision, etc. 

Oh!  That;s something I had forgotten.  I have had a couple migraines over the years.  Maybe it is related to that!  Thanks for triggering that memory.
 

My advice is to check with your  neurologist and eye dr. if you have any more such light disturbances.  You sound too healthy to worry about "going to the light" right now (humor intended).   


 I saw the beams again last night but they were smaller.  Maybe they are giving up  lol.  

 

I haven't heard of anyone in the past talk about such Aricept side effects. 



Geegee
Posted: Thursday, June 7, 2012 9:16 AM
Joined: 11/29/2011
Posts: 514


Nie wrote:

    


 I saw the beams again last night but they were smaller.  Maybe they are giving up  lol.   

 


 


Nie, let's hope so!!

nomemo
Posted: Thursday, June 7, 2012 2:44 PM
Joined: 3/21/2012
Posts: 439


nie, i appreciate you humor at what must be a trying time.  keep it up!  you inspire me.
SteveSanJose
Posted: Thursday, June 7, 2012 3:35 PM
Joined: 1/3/2012
Posts: 189


It is unusual to get a diagnosis of EOAD right away. You usually just have memory problems first. Doctors usually call that MCI with a probable cause of EOAD.  MCI  

is mild congnitive impairment. I was referred to a neurologist  at a Alzheimers clinic when I first got memory loss symptoms by my PCP. I got MCI at age 60, and it was upgraded to EOAD at 61.  A MRI, or Cat Scan; a Psychiatrist, Neurologist, and Lab work, are all part of the diagnosis process. Get a good diagnosis !   


Nie
Posted: Thursday, June 7, 2012 4:14 PM
Joined: 5/30/2012
Posts: 66


hehe   thanks nomemo!
Nie
Posted: Thursday, June 7, 2012 4:39 PM
Joined: 5/30/2012
Posts: 66


SteveSanJose wrote:

It is unusual to get a diagnosis of EOAD right away. You usually just have memory problems first. Doctors usually call that MCI with a probable cause of EOAD.  MCI  

is mild congnitive impairment. I was referred to a neurologist  at a Alzheimers clinic when I first got memory loss symptoms by my PCP. I got MCI at age 60, and it was upgraded to EOAD at 61.  A MRI, or Cat Scan; a Psychiatrist, Neurologist, and Lab work, are all part of the diagnosis process. Get a good diagnosis !     


HiSteveSanJose

This actually started maybe a year or 2 ago.  Not quite sure at the moment.  But I went to my PCP, who sent me to a pulmonary guy for a sleep study, found out I have sleep apnea and I am doing well with that now with a CPAP.  No more falling asleep with my face in my mash potatoes!  

 

Actually I have to mention here the dr who saw me for the sleep apnea and sleep study..his first comment when he entered the room was .."I was expected to see an overweight person!".  Umm,  this shows that Drs are really not current on some things.  Weight is not the only cause of apnea.  Sheesh even I know that.   I almost said.."Gee, I was expecting to hear something smarter!"  but I didn't say it    

 

back to what I was saying:

But, I think even back then I had some memory issues.  At the time it made sense it was sleep apnea related but over time I have had more and more troubles.  That Doctor said I should not still be having the memory issues etc

 

 

So back to PCP, who got me on B12 and Vitamin D, did Lab work..sent me to a  Neurologist who did the MRI, EEG, bunch of tests.  He wasn't very informative.  MRI only showed some white hyper-intensities and that one side of my brain is a bit smaller than the other.  I think he just thought I was a nut.  (he might be right)

 

So he sent me to a Psychiatrist and she sent me to a psychologist, both of whom I see now and have seen for maybe 7-8 months? and they diagnosed me EOAD.

 

That said..the reason I can tell you all this is because I just dug up records and wrote down a bunch of stuff.  I have a new appt with an Alz specialty neurologist on the 19th.  So, we shall see!  I am a bit hesitant to see him.  On his website he says that Alzheimers is a choice in about 70% of cases. Meaning, we can prevent it by eating right and exercise.  I suppose a healthy lifestyle does make sense.  But, if he confirms I have it and tells me it's my fault.. I don't think he's going to like my response...

Anyway, I'd just like to get this "nailed down" so I can be proactive in my life and take the right steps.

Thanks ~  

 


Iris L.
Posted: Thursday, June 7, 2012 10:57 PM
Joined: 12/15/2011
Posts: 17723


Nie wrote:

 


found out I have sleep apnea and I am doing well with that now with a CPAP.  No more falling asleep with my face in my mash potatoes!  

 

 

  I almost said.."Gee, I was expecting to hear something smarter!"  but I didn't say it    

 

 

But, I think even back then I had some memory issues.  At the time it made sense it was sleep apnea related but over time I have had more and more troubles.  That Doctor said I should not still be having the memory issues etc

  


I also have sleep apnea.  I read from a study from UCLA that the memory loss due to sleep apnea resolved after three to six months of consistent CPAP treatment.  This was confirmed by neurocognitive testing.  So persistent memory loss does require further investigation, as you have done.

I'll have to remember what you almost said.  (chuckle)

Iris L.


Nie
Posted: Sunday, June 10, 2012 9:30 PM
Joined: 5/30/2012
Posts: 66


Just a small update:

I will be switching over to the Exelon patch next week.  I hope I do well with it.  This weekend I went to an auction with my boyfriend and another couple we know well.  While there I was standing across a table of items and this man who looked really familiar was smiling and saying "did you find anything good yet?".  He looked so familiar but I just couldn't place how I knew him or what his name was.  Then a few minutes later a girl  walked up next to him and I suddenly remembered it was the couple we were there with       I don't think that has happened to me before.  I sure don't like it. 


Iris L.
Posted: Sunday, June 10, 2012 10:42 PM
Joined: 12/15/2011
Posts: 17723


I hope the Exelon patch will give you good relief, Nie.  It certainly has helped me with my lapses.  It's not perfect, but I noticed a definite improvement after beginning the medication.

Hang in there, Nie!

Iris L.

Nie
Posted: Saturday, June 16, 2012 12:37 PM
Joined: 5/30/2012
Posts: 66


Thanks Iris

The pharmacy is out of the exelon patch still.  I should have it Monday I hope.  I am already off the aricept.  My appt with specialist is Tuesday.  I sure hope I get something out of it.  Stress and brain fog has me pretty messed up these last few days.  Even signed off work one day at noon sobbing uncontrollably.  I'm very torn on trying to keep faking it through this job (poorly), and risking getting fired and losing my long term disability job benefits.  It's overwhelming.   So..one day at a time I guess.  


Iris L.
Posted: Saturday, June 16, 2012 4:16 PM
Joined: 12/15/2011
Posts: 17723


Nie wrote:

Stress and brain fog has me pretty messed up these last few days.  Even signed off work one day at noon sobbing uncontrollably.  I'm very torn on trying to keep faking it through this job (poorly), and risking getting fired and losing my long term disability job benefits.  It's overwhelming.   So..one day at a time I guess.   


Nie, by all means, do not get fired and lose your long term disability job benefits!You will need them, if not now, then in the near future!

The reason you are stressed is because you are trying to function with a brain that can't process much.  And I must tell you, that even if you get the maximum benefit from Exelon patch, it will not return you to being 100%. 

I had to re-read through your thread to remember your story.  From what I can make out, you still have not had a full neurocognitive testing done yet.  It is important to get everything done to make a diagnosis so that you can have some direction about your plans for your future.  If the diagnosis really is EOAD, you will not be able to continue to work for long.  At least not at that capacity. You might be able to ask for accommodations to allow you to work.  I don't know what accommodations you would ask for; those would depend upon the work and your capabilities.

Whatever in your medical history is treatable, please follow up and make the doctors follow up.  I see your vitamin B12 level was low.  Has that returned to appropriate levels yet?

How is the depression treatment going?  There is more to assessment of depression than "not seeming to be depressed" by an observer.  Often it may take some time to find the antidepressant that does provide an improvement.

All of this might seem like nitpicking, but it is necessary to be sure.  You are young, and facing a life-changing diagnosis.  You need to be able to make plans for yourself.  I just recently learned that the reason for my memory loss which began at age 37 has nothing to do with Alzheimer's disease, but another disease process which can mimic AD.  But now I am at the age when Alzheimer's disease may begin, so there is more confusion about what is going on with me.

Would it be possible to request a temporary short-term leave for medical reasons from your job if you are having so much difficulty in your daily functioning?  This is something to discuss with your doctor and possibly your boyfriend.  Or could you request "light duty" for a few weeks until you are more certain of your treatment progress?  Do everything you can not to get fired because you need your benefits!

An additional step you can take that may help relieve your stress load is to discuss your situation with a Care Consultant.  You will get a knowledgeable listener who may be able to help you handle your stress load more effectively and help you discern your options.

Iris L.

SteveSanJose
Posted: Saturday, June 16, 2012 6:20 PM
Joined: 1/3/2012
Posts: 189


Nie, does your psychiatrist have the records from your numerologist? People with dementia also worked on their communication skills.  I see a Speech therapist every week at the adult day health care facility twice weekly.  It helps me communicate with other people, and my doctor. I also see a psychologist, and we are working on me becoming more positive. I too was concerned that my EOAD was brought on to me by myself. Some people see disease as a curse or something that is their fault; but the truth is getting a disease is just random selection. Every body in their life time gets some kind of disease, but they get is random; in our case, it's Alzheimer's.  Your pastor, at your place of worship, can help you deal with this. Rember stay positive, eat right, exercise, and take your medication.
Nie
Posted: Saturday, June 16, 2012 6:51 PM
Joined: 5/30/2012
Posts: 66


Iris L. wrote:
Nie wrote:

Stress and brain fog has me pretty messed up these last few days.  Even signed off work one day at noon sobbing uncontrollably.  I'm very torn on trying to keep faking it through this job (poorly), and risking getting fired and losing my long term disability job benefits.  It's overwhelming.   So..one day at a time I guess.   


Nie, by all means, do not get fired and lose your long term disability job benefits!You will need them, if not now, then in the near future!

Yes, I'm going to try everything I can to stay employed

The reason you are stressed is because you are trying to function with a brain that can't process much.  And I must tell you, that even if you get the maximum benefit from Exelon patch, it will not return you to being 100%.  

Id settle for any improvement right now!

I had to re-read through your thread to remember your story.  From what I can make out, you still have not had a full neurocognitive testing done yet.  It is important to get everything done to make a diagnosis so that you can have some direction about your plans for your future.  If the diagnosis really is EOAD, you will not be able to continue to work for long.  At least not at that capacity. You might be able to ask for accommodations to allow you to work.  I don't know what accommodations you would ask for; those would depend upon the work and your capabilities.

Full neurocognitive testing  is this Tuesday.  As far as work accommodations..they wont do it.  They keep letting people go.  The company is in transitions to new products and skill set and multi-tasking is everything

Whatever in your medical history is treatable, please follow up and make the doctors follow up.  I see your vitamin B12 level was low.  Has that returned to appropriate levels yet?

Yes, that was quite some time ago.  Vit D was low too.  All are within normal range now.

How is the depression treatment going?  There is more to assessment of depression than "not seeming to be depressed" by an observer.  Often it may take some time to find the antidepressant that does provide an improvement.

I think the Citalpram keeps me level mostly.  They tried me on various others that didnt work out.

All of this might seem like nitpicking, but it is necessary to be sure.  You are young, and facing a life-changing diagnosis.  You need to be able to make plans for yourself.  I just recently learned that the reason for my memory loss which began at age 37 has nothing to do with Alzheimer's disease, but another disease process which can mimic AD.  But now I am at the age when Alzheimer's disease may begin, so there is more confusion about what is going on with me.
 
That has to be really hard  All this stuff is so devious and tricky.  How on earth do we ever know if we are diagnosed right. 

Would it be possible to request a temporary short-term leave for medical reasons from your job if you are having so much difficulty in your daily functioning?  This is something to discuss with your doctor and possibly your boyfriend.  Or could you request "light duty" for a few weeks until you are more certain of your treatment progress?  Do everything you can not to get fired because you need your benefits!

I took a leave last Sept when I started seeing the Psychiatrist and Psychologist.  I was actually off almost 3 months but went back to work because I needed to keep my medical coverage etc.  I cannot even begin to tell you what I did in those 3 months.  Doctors appts Im sure.  It seems like a blink on an eye, all gone.  I dont know if I can get away with another leave already.

An additional step you can take that may help relieve your stress load is to discuss your situation with a Care Consultant.  You will get a knowledgeable listener who may be able to help you handle your stress load more effectively and help you discern your options.

Yes, this makes sense and I will follow up.   Thanks so much for your input and caring!


Iris L. 



Nie
Posted: Saturday, June 16, 2012 6:58 PM
Joined: 5/30/2012
Posts: 66


SteveSanJose wrote:
Nie, does your psychiatrist have the records from your numerologist? People with dementia also worked on their communication skills.  I see a Speech therapist every week at the adult day health care facility twice weekly.  It helps me communicate with other people, and my doctor. I also see a psychologist, and we are working on me becoming more positive. I too was concerned that my EOAD was brought on to me by myself. Some people see disease as a curse or something that is their fault; but the truth is getting a disease is just random selection. Every body in their life time gets some kind of disease, but they get is random; in our case, it's Alzheimer's.  Your pastor, at your place of worship, can help you deal with this. Rember stay positive, eat right, exercise, and take your medication.

Hi SteveSanJose

Yes, the psych does have all my original neurology reports, plus mri, eeg, ekg, bloodwork..everything.   I will also give her the next Neurologists report as soon as I see him etc.  I will try to stay positive and keep positive people around me too.  Eat, exercise, meds..all on track

I also wont dwell on if this situation is my fault.  I have to keep moving forward the best I can every day.  Thanks for your reply.  I really appreciate it.


Mimi S.
Posted: Saturday, June 16, 2012 7:53 PM
Joined: 11/29/2011
Posts: 7027


Nie, Possibly the Aliz. specialist meant that Aliz. is the diagnosis in about 70% of cases of dementia.

And it would have been nice if that one specialist had explained, instead of just telling you the MRI results.

A regular MRI doesn't show changes for a while. There is a special type of PET scan that can show changes early. Spinal Fluid taps can even diagnose it earlier.

Good luck with the test on Tuesday.

Do your best, but don't worry at what you can't do. That's why you're there, for them to figure it out. The patterns of highs and lows will help them figure out what's going on.  We hope~


dayn2nite
Posted: Saturday, June 16, 2012 8:12 PM
Joined: 12/18/2011
Posts: 3097


Nie, does your employer provide short-term disability?  Or, how did you manage income-wise during the 3 months you were on leave before?

 

I ask because the work situation you describe sounds really scary.  If they're already getting rid of people and implementing new products and processes, and the job you already know is not being done well--it just doesn't sound good.

 

My mother narrowly escaped being fired and losing her disability coverage because I actually got her put on leave.  If it had been up to her, she would have continued on trying to do her job (poorly) and would have been fired.  Luckily for her, her employer provided short-term disability and she had purchased long-term disability herself a long time ago.  She also didn't have to worry about health insurance because she had turned 65 about 6 months prior and was covered under Medicare and a Medicare supplement.  I could trace symptoms in her going back to her late 50s, but she managed to cover well until about a year prior to her diagnosis.  She was already into moderate stage by the time she was diagnosed (which really was just a guess anyway).

 

If you can talk to one of the Care Consultants about your work situation, maybe they can assist you in making a decision as to whether you should try to tough it out or go out on a leave now.


Myriam
Posted: Saturday, June 16, 2012 9:53 PM
Joined: 12/6/2011
Posts: 3326


If you can afford to pay for an hour consultation with an employment attorney, she may be able to guide you on how to proceed with your employer and not lose your disability benefit.  The law in each state is different and each employer is different.  So when you go for the consultation, take with you your employer's Employees Handbook containing the explanation of your benefits.

 


Iris L.
Posted: Sunday, June 17, 2012 3:12 AM
Joined: 12/15/2011
Posts: 17723


Nie wrote:

 

 

I also wont dwell on if this situation is my fault.  


I don't know what you mean by "this situation", but if you mean the possibilty of having Alzheimer's disease, that is NOT your fault!  Get that thought out of your head. 

There is no proven way to prevent Alzheimer's; we can aim to reduce risk factors and hope for the best. 

Do not put any guilt burden on yourself, Nie.  There is no validity in it.

Iris L.

Nie
Posted: Wednesday, June 20, 2012 7:12 PM
Joined: 5/30/2012
Posts: 66


Thanks Myriam, I am digging for my handbook!
Nie
Posted: Wednesday, June 20, 2012 7:19 PM
Joined: 5/30/2012
Posts: 66


dayn2nite wrote:

Nie, does your employer provide short-term disability?  Or, how did you manage income-wise during the 3 months you were on leave before?

Yes, I had short term disability coverage through work, plus they used some of my vacation to supplement what wasn't covered.  I was sitting on a months vacation time at that point.

 

I ask because the work situation you describe sounds really scary.  If they're already getting rid of people and implementing new products and processes, and the job you already know is not being done well--it just doesn't sound good.

Yes  it is.  I do need some help deciding.  I will talk with a Care Consultant.  I wish I had a crystal ball.  So hard to know what steps are the best ones at this moment financially.

 

My mother narrowly escaped being fired and losing her disability coverage because I actually got her put on leave.  If it had been up to her, she would have continued on trying to do her job (poorly) and would have been fired.  Luckily for her, her employer provided short-term disability and she had purchased long-term disability herself a long time ago.  She also didn't have to worry about health insurance because she had turned 65 about 6 months prior and was covered under Medicare and a Medicare supplement.  I could trace symptoms in her going back to her late 50s, but she managed to cover well until about a year prior to her diagnosis.  She was already into moderate stage by the time she was diagnosed (which really was just a guess anyway).

 

If you can talk to one of the Care Consultants about your work situation, maybe they can assist you in making a decision as to whether you should try to tough it out or go out on a leave now.



Nie
Posted: Wednesday, June 20, 2012 7:32 PM
Joined: 5/30/2012
Posts: 66


Update:

I went to the 2nd opinion neurologist specialist appt yesterday.  I was expecting a bunch of extensive memory testing. (hours)  That's not how it went.  He did do a somewhat lengthy memory test with me , about 30 minutes or so, which I apparently did extremely poor on.  (per Dr)

He says I need the PET brain scan and a SPECT as next steps.  I have an HMO so he feels it will be  very lucky if they approve the SPECT.  He did not "disagree" with my current diagnosis, but did feel this was serious and required prompt additional testing.  He said he would be my advocate and push as hard as possible to get things rolling and to get more answers for me.  I think that's great.  I was pretty emotional by the end of appt.  I wanted him to REALLY understand the impact this is having on everything I do.  He gets it. I think I made him sad when I cried.  

 

So while I'm back to the waiting game I will still be on my Exelon patch, (per Dr) and trying to stay positive and make some logical decisions as needed.

Thanks for listening!


Myriam
Posted: Wednesday, June 20, 2012 9:05 PM
Joined: 12/6/2011
Posts: 3326


Nie, how great that you found a doc that is really caring for you!!!
Iris L.
Posted: Thursday, June 21, 2012 1:24 AM
Joined: 12/15/2011
Posts: 17723


Nie, I echo what Myriam said.  It's rare to find a doctor who not only understands what you are dealing with but who will advocate for you.

One thing you might think about doing, on an anonymous basis, is find out what your state's Vocational Rehabilitation  Department offers to workers with a diagnosis of early stage dementia. Ask, can they help EOAD patients  develop work accommodations.  If they seem unsure of what you mean, they probably are unlikely to be helpful to you and you might begin to think of applying for long term disability sooner rather than later.

Rarely we have heard of some patients who are able to work after receiving their diagnosis, but only with a lot of support from the employer. 

Being on short term disability protects you from being fired while your medical situation is being evaluated.  I don't know if you would still be eligible for long term disability benefits if you were fired.  This is something to discuss with an employment attorney.  In many places employees can be let go without cause.

Iris L.

mish
Posted: Thursday, June 21, 2012 9:48 AM
Joined: 6/21/2012
Posts: 439


I am so sorry you  received this news. I am  new to this blog thing. coming out so to speak.   I am 43 with frontal lobe dementia I took all the tests and it took 2 years for all the MD's to r/o everything. I was dx with everything! and nothing! Until I met with   A memory specialist, dementia specialist. And HE finally gathered all the information for all  the MD's that  I was referred to, all the tests that everyone gave me, (yes I was a lab rat for  a bit) all the neuro-psych tests, etc.,Then Mr. Memory guy (that wears ugly ties) but knows his stuff> did a spinal tap,  blood tests, did a repeat pet  test,  another mri and did a test of his own. Then and ONLY then did He  finally make     a final dx. He wanted to make sure.  Yes, was not   the dx I was looking for but at least it was a dx and I  felt a  releif that finally I knew  that something was actually wrong with me and  it wasnt in my head. (pardon the  pun)

    I understand your frustration yet i feel for those who love you because so many disorders mimic memory loss that is why there is extensive testing.  I hope to the heavens I am not making things worse. I am just trying to say I hope things get better and  no matter what the dx, you still have you. just take it minute by minute. and breathe. 

 


mish
Posted: Thursday, June 21, 2012 9:54 AM
Joined: 6/21/2012
Posts: 439


how is the patch doing for you?  any side  affects?
mish
Posted: Thursday, June 21, 2012 9:55 AM
Joined: 6/21/2012
Posts: 439


also, what if its not dementia is an excellent book that my entire family is reading now.
Nie
Posted: Friday, June 29, 2012 11:19 AM
Joined: 5/30/2012
Posts: 66


So, I have been trying to figure out if I an take another short term leave from work and it looks like its done on a "rolling year".  Meaning:  I cant take another until Sept. That;s what I was afraid of.  Any other leave will allow them to fire me and I lose benefits.  

I simply don't have the funds to go see a lawyer for advice.  I also don't know if I can hang on until Sept.  I doubt it.   Only think I can think of is that maybe if I go straight to long term disability..I'm covered?  I would just have to get through that 3 months of wait time before it kicks in.  But I need a solid diagnosis!!  

I am really overwhelmed these past weeks trying to understand the process.  I am still waiting for the PET and SPECT authorization as well.  What if they show nothing?  The doctor said it doesn't always show EOAD.  

Am I disgusting for hoping it shows a small brain tumor or something they can pluck out so I can have my life back eventually?      

My humor is failing me today just when I need it most.  Going to call the doctor and see whats up with those authorizations.  So tired of busting into tears when I find out I've made some big error, or I cant add, or I cant remember whats I'm suppose to be doing.   SO sick of it.  
Sorry for the whining post.  It's this or scream/cry!   Thanks for being here.
Hugs to all.