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eaglemom
Posted: Wednesday, March 7, 2012 3:04 PM
Joined: 3/7/2012
Posts: 2375



Myriam
Posted: Wednesday, March 7, 2012 4:26 PM
Joined: 12/6/2011
Posts: 3326


eaglemom, are you using Firefox as a browser? It does not work on this site. Try using Internet Explorer.
eaglemom
Posted: Thursday, March 8, 2012 3:53 PM
Joined: 3/7/2012
Posts: 2375


Ok, finally figured this out.  Sorry about that.  I'll try to be brief - but please ask questions, etc if it doesnt make sense.

 

Dec 2010 husband woke up screaming in pain, left arm cramped up, naucious, etc.  Immediately to ER that said severe muscle spasms gave mads we left.  This guys not been the same since then.  Spasms didnt  go away, ER again, more meds.  MD said tough it out.  This is a guy who doesnt complain who was beside himself in agony.  Finally MRI of neck showed 2 ruptured disks.  He had 3 epidural shots to no avail.  Finally necck surgery Feb 2011.  He did PT and finally returned to work May.  During this time he wasn't himself - forgetful, disorganized, confused, etc. July put him on antidepressant thinking that would help - it didnt. Fast forward to Oct when he decided his work was slipping and his employeer agreed and he's not worked since then. 

 

He's had mri's, mri's with contrast, tons of blood work, cat scans entire body, neuropsychological testing, and a PET scan.  Everything is clear.  The neurologist is amazed - the speech gal he's been referred to is amazed.  He clearly presents and tests out with significant cognitive memory issues but tests reveal nothing.

 

That's where we are.  He was a (not trying to sound prideful/boastful) high powered major company white collar executive prior to this.  Obviously not now.  As best we can tell his IQ has dropped 45 points.  Thankfully he was brillant prior. Again just giving you guys information - not bragging.

 

He is 54, no high bp, or anything.  Neurologist is calling early onset alz or dementia just to name it.  We are not on any medical leave or disability yet.

 

Thoughts, questions, idea's..................

 

So glad to have found this site

 

 

 


Myriam
Posted: Thursday, March 8, 2012 6:16 PM
Joined: 12/6/2011
Posts: 3326


Did the neurologist prescribe medications, such as Aricept and Namenda? if so, have you seen improvements?  It's time to think about making arrangements. Consider making an appointment with an elder law attorney to get all legal matters in place, guidance on how to proceed with his employer, and how and when to file for benefits and preparing for the future. Here is a place to start to look for a good elder law attorney if you don't already know one: www.naela.org 


 

He may also want to start on best practices, if he is not already doing so:


Mediterranean Diet  

http://www.sciencedaily.com/releases/2007/09/070910162411.htm 

 

Exercise 

http://www.physorg.com/news205430929.html 

 

Stay Mentally Active 

http://www.alz.org/we_can_help_stay_mentally_active.asp 

 

Socializing 

http://www.aarp.org/health/brain-health/info-11-2008/friends-are-good-for-your-brain.html 


 


Tonya2
Posted: Thursday, March 8, 2012 6:30 PM
Joined: 12/8/2011
Posts: 33


Hi eagle mom,

 
I have Lewy body dementia.....has your neurologist screened for that..... It has fluctuations in cognition rather than the more steady memory decline of AD...
I noticed it first most strongly in my work which was highly technical.....I am early onset and was diagnosed at 46 although my symptoms go back to 2000 and I m now 47......try to find a cognitive specialist.. Maybe at a teaching hospital......
My heart goes out to you and your husband.......
 
 
Ps the muscle spasms caught my eye because Parkinsonism comes with Lewy body and I had severe muscle spams until treatment ....Also I have experienced  a 29 pt drop in IQ but because there are such fluctuations I have better days and not so good days....
I take aricept and namenda n while I still cannot do the work I used to they have hoped me a lot......I am in the process of filing for disability.....Lewy body, like Alzheimer's is on the compassionate allowance list....

Iris L.
Posted: Thursday, March 8, 2012 11:42 PM
Joined: 12/15/2011
Posts: 16183


Welcome to the message boards, eaglemom.  I'm sorry to hear about your husband's problems.  I'm age 61 and my diagnosis is cognitive impairment nos, not otherwise specified, meaning an Alzheimer's-like cognitive disorder due to another illness, in my case, lupus.   

 

Alzheimer's and the other dementias are diagnoses of exclusion, so that treatable causes of dementia are searched for and ruled out.  Many diseases imitate Alzheimer's.  Was your husband evaluated by a neurologist who regularly diagnoses and treats dementia patients?  Was he evaluated at a Alzheimer's Disease Research Center or Memory Center? 

 

Many medications or combinations of medications impair cognition.  This is an often overlooked area of reversible dementia.  Another cause of reversible dementia is depression.  However, depression and dementia can overlap to some degree. 

 

What was the result of the neuropsychological testing?   

 

Did your husband have any memory or cognitive problems before his neck problem?  Alzheimer's and the other dementias usually do not develop suddenly, unless there has been a stroke or a traumatic event.  

 

Was any medication prescribed?   

 

Did your husband go out on disablity?  Does his company have a long term disablity plan?     

 

A good reference book to read is The Alzheimer's Action Plan by P. Murali Doraiswamy, M.D. and Lisa P. Gwyther, M.S.W., who are both experts on Alzheimer's disease from Duke University.  It will answer a lot of questions. 

 

In addition to the help on the message boards, you can telephone the 24-hour Alzheimer's Association Helpline at 1-800-272-3900 and ask to speak with a Care Consultant.  They are experts in dementia and caregiving and will help you locate resources in your area and give you advice for your personal situation. 

 

Please continue to read and to post your questions and concerns, and give us more information if you can.  You are beginning a long journey. 

 

Iris L. 


eaglemom
Posted: Friday, March 9, 2012 8:46 AM
Joined: 3/7/2012
Posts: 2375


Oh everyone thanks so much just for listening and the support. I'll try to answer your questions.

 

yes he's been on Aricept 5 for one month and was increased to 10mg. In one month doctor will add another medication.

 

He has had a spinal tap also - I forgot to mention that.  His hand have "tremors" constantly. He slightly had that prior to neck but its worse now.  He always has it, just worse sometimes.

 

The neuropsychological didn't specificallyname any one thing - dementia / early az

 

He also sleeps with a CPAP

 

Company does have long term disability however they say you have to be out of work 6 months no pay prior to it kicking in.  His position has been eliminated, office cleaned out, work cell phones & pagers returned and work computer. His access even to go there has been elliminated.

 

We have been referred to a AL research facility - waiting to hear back.  The neuro said that would be a fantastic source of infor.

 

I can see I need to get busy looking at these wonderful resourses you all have provided. 

 

Oh a question - we have wills and obviously need to update them.  Would it be best to use an elderly law attorney? Or just use our regular attorney?  I'm guessing the elderly law? Thanks guys I will say you all are wonderful

 


Iris L.
Posted: Friday, March 9, 2012 12:45 PM
Joined: 12/15/2011
Posts: 16183


eaglemom wrote:

 

The neuropsychological didn't specificallyname any one thing - dementia / early az

 

He also sleeps with a CPAP

  

Would it be best to use an elderly law attorney? Or just use our regular attorney?  I'm guessing the elderly law?  

 

 

 

Eaglemom, thanks for responding back and providing some more information.  It seems like your husband has had a competent workup and your neurologist is on top of things, and he is not resistant to a second opinion at a research center. 

 

Just for your general information, to diagnose a patient with dementia is to make a general statement that a person has had intellectual decline.  It is up to the doctor to determine the type of dementia, reversible or irreversible.  If irreversible, it is usually called neurodegenerative, which brings it into the Alzheimer's category.  But there is also dementia from Lewy Bodies, fronto-temporal dementia, Parkinson's dementia, alcohol-related dementia, and others, all of which may have somewhat different treatments.   

 

The medication plan sounds appropriate.  Have you noticed any change or improvement on the Aricept?  I had improvement with my beginning dose of Exelon patch, so I was eager to increase the dosage and add Namenda. 

 

I also have sleep apnea, which was diagnosed after I began the memory medications.  Others have been on this message board with sleep apnea.  Sleep apnea is a known cause of memory loss and other cognitive impairment due to low blood oxygen.  Sometimes the cognitive issues are reversible after treatment if caught in time.  You must wait for at least three months of adequate treatment with CPAP before you assess if there has been an improvement in cognition. 

 

It has been five months since your husband left his employment.  You must look at the policy to see what the terms of disablility are. For example, the policy may say that the doctor must state that the disability is determined to be permanent.  Your medical records must be worded to support your husband's claim that he can no longer work and that this is permanent. 

 

The disability policy may require you to file for Social Security Disability Insurance.  You must meet their requirements.  The Alzheimer's Association has attained Compassionate Allowance for EOAD, Early Onset Alzheimer's Disease, so that his diagnosis is eligible for benefits.  I would not be concerned right now, for the purposes of applying for disability benefits, what his exact diagnosis is, either AD or Lewy Body or Parkinson's.  You want to make sure you get the benefits. 

 

The purpose of using an elder attorney versus a regular or family attorney is that the elder attorney will advise you in terms of long term care planning and eligiblity for Medicaid benefits and other benefits having to do with being an older adult.  Don't make any move before you review the information on this website and several pages of threads from the Spouse/Partner board and the General Caregiver's board.     

 

There are several threads about questions to ask an elder attorney and what information to bring to the meeting.  I don't know how well the SEARCH feature works, but if not, you will have to scroll through all the entries to search for such threads.  It will be worth your efforts.  

 

Do you think your husband would be able to join us patients on this board? We would love to meet him. 

 

Iris L. 

 



Mimi S.
Posted: Friday, March 9, 2012 7:50 PM
Joined: 11/29/2011
Posts: 7035


Better not call the attorney that to his/her face. Many of them are anything but elderly. Elder Care Attorney.  And that's what you need.

 

And you and dad, read, read and read some more. Search on line.

Do as many of the Best Practices as possible.

1. Take meds as directed.

2. As much physical exercise as possible. Swimming? 

3. mental stimulation.

4. Mediterranean Diet.

5. Maintain or increase socialization.

Good luck!  


eaglemom
Posted: Monday, March 12, 2012 9:21 AM
Joined: 3/7/2012
Posts: 2375


So much information - thanks again everyone.

 

Iris is very casually mentioned him joining a group and he didn't say yes or no. Which means he"s thinking about it.

 

Forgive me but have another question:  what about tracking devises?  We both enjoy walking but I'm suppose to have a total knee replacement (ironic I think - both of us having something that usually affects someone older than our 54 years) so walking far with him is out.  When he's having a "clear" day I'm ok with him walking but not when he"s "foggy."  The internet search really doesnt provide much.  I'd like him to have a watch or something and a monitor at home.  Does that even exist?

 

Calling for appointment with elder care attorney this morning.  Doing this one step at a time one day at a time.


Iris L.
Posted: Monday, March 12, 2012 11:13 AM
Joined: 12/15/2011
Posts: 16183


eaglemom wrote:

 

Iris is very casually mentioned him joining a group and he didn't say yes or no. Which means he"s thinking about it. 

 

Forgive me but have another question:  what about tracking devises? 

 

...I'm ok with him walking but not when he"s "foggy." 

 

 

 

 

Or it could mean he's already forgotten about it.   Please don't be upset if this is the case.  

 

Never hesitate to ask a question.  That's what these boards are for. 

 

With dementia you have to plan for the patient's worst times.  So you must plan for when your DH is foggy.  What do you mean by "foggy?"  Will he walk out into traffic?  Will he forget how to return home?  Will he not be able to ask for help?  If these questions are true, I would forget about solo wandering trips for him.  There is too much risk for danger. 

 

You can also post your question re: tracking devices on the Spouse/Partner or the General Caregiving boards.  They may have more inforation about tracking devices.  The Alzheimer's Association offers the Safe Return program.  You can check the main website and the banner at the top of this page for more information. 

 

Have you prepared your questions for the elder law attorney yet? 

 

Iris L. 

  



jfkoc
Posted: Monday, March 12, 2012 3:00 PM
Joined: 12/4/2011
Posts: 17529


Hi and welcome....please be certain to also post and read in caregivers and spouse forums.

 

Everyone goes back and forth ...each forum is  so helpful and each has a slightly different viewpoints

 

If you can cut and paste your posts that would be the easiet.


Lisa428
Posted: Monday, March 12, 2012 5:19 PM
Joined: 12/5/2011
Posts: 795


Dear Eaglemom,

I just wanted to add my welcome to the others.  Sounds like you are on the right path.

I was diagnosed almost 5 years ago with EOAD at 53.  I do have my ducks in a row so to speak.

You are correct about doing one things at a time.  Remember, Safety is the #1 issue.  Please make sure your hubby is safe at all times.

You can find out about monitoring devices here or by callling the 24/7 AD helpline @800-272-3900.

There is a wealth of information on these message boards with wonderful people to help you.

Please feel free to ask anything or if you are just frustrated and need to vent, we are very good listeners.

Welcome to OUR family.  You are NOT alone.  We are here for you and your husband.

Good Luck and keep posting.

Peace and Hope,

Lisa


PLM
Posted: Tuesday, March 13, 2012 11:09 PM
Joined: 3/13/2012
Posts: 20


I am very new here.  Just now signed up.  I am concerned about my husband who is 54 years old.  He just informed me earlier this evening that he is worried about his memory.  He does write everything down, which a lot of us do.  But tonight he told me he is just plain scared.  He plays guitar and has been forgetting songs he has played for years.  He said it's like it's gone and he can't remember how to play them.  Not only did he tell me he is scared, he looks scared.

 

I have noticed things like him insisting he had told me something when I know he didn't.  He's doing things he never did before like asking for directions, checking his maps more frequently while driving.  His driving is becoming more scary for me as he seems distracted and will look off at something and then we start going off the road.  My adult sons commented that riding with him is like being a pinball in a pinball machine bouncing between the lines and often times crossing over them.

 

There are other things, but this is what I am starting with.  The forgetting his music is the most worrisome to him and me, especially when he told me he is scared.  I told him we need to tell the doctor.  I don't know if he will.  I've tried telling her, but she kind of wrote it off.

 

Am I wrong in wondering if it is early onset alzheimers?  Any suggestions?


Iris L.
Posted: Tuesday, March 13, 2012 11:41 PM
Joined: 12/15/2011
Posts: 16183


Welcome to the message boards, PLM.  There are many causes of memory loss, many of which are reversible if caught in time.  That's why it is necessary to undergo a thorough medical evaluation by a neurologist who specializes in memory disorders.  Your PCP can begin the evaluation by ordering laboratory tests for nutritional and hormonal and other disorders, looking into medications (prescribed and non-prescribed) and ordering brain imaging studies.   

  

Please look at the main website, alz.org and review the section on Diagnosis.  Here is a link to one of the segments, 10 Warning Signs of Dementia: 

http://www.alz.org/alzheimers_disease_know_the_10_signs.asp  

 

Since your husband has developed difficulty in driving, he should not drive at all until you have further information about his condition.     

 

Iris L. 


PLM
Posted: Wednesday, March 14, 2012 8:07 AM
Joined: 3/13/2012
Posts: 20


Thank you Iris.  I sat him down this morning and had a discussion with him about this.  He told me of other things happening that I didn't know about.  I'm glad he is opening up.  We currently have no insurance and can't get any until May.  I will be getting him to the doctor then as he refuses to go until we have the insurance.  He is semi-retired and is currently teaching exercise classes twice a week.  Apparently he has had memory loss during class a couple time too.  He said it's like he can't remember what comes next even though he has been doing the classes for 5 years.  He says he is very frustrated.  He also told me he doesn't want me telling anyone.  I told him we need to take this seriously and tried to encourage him not to worry that it is alzheimers as it could be another medical condition or just simply him going through the normal aging process.  He seems somewhat relieved since we talked this morning and so do I.  I talked to him about other issues we need to consider once we find out what's going on.  I'm glad I found this forum as I may have a lot of questions depending on what we learn.  I have already looked at the 10 Warning signs and read much of what is on this site and it has been very helpful.  I think right now it's just the having to wait to get the answers and find out what is really going on.  Some of what I read fit him, some didn't.  The other concern he has is Alzheimer's is in his family.  Well, I'm rattling on.  Sorry.  Just need to clear my mind.  Thanks for listening.
Lisa428
Posted: Wednesday, March 14, 2012 11:57 AM
Joined: 12/5/2011
Posts: 795


Hello PLM,

 

Welcome to the AD/Related dementia's message boards.  I'm sorry to hear about your husband's problems but I am glad you've found us.

 

You've been given some good advice.  You husband needs a thorough medical exam to find out if his memory loss is from something besides dementia.  It may be curable.  After his exam and blood tests and mri are done then he can have neuropsychological testing.  Please make sure he has a doctor that specializes in AD/dementia disorders and perhaps is hooked up with a Memory Disorder clinic.

 

Good Luck and take care.

 

Please, go here as often as you would like.  Ask any questions.  We're here to help.  We do have a toll free 24/7 Helpline if you need to speak with someone.  800-272-3900.

 

 

Please, keep us posted.

 

Again, Welcome.

 

Peace and Hope,

Lisa


eaglemom
Posted: Wednesday, March 14, 2012 2:56 PM
Joined: 3/7/2012
Posts: 2375


Welcome PLM. I'm new here also - DH is 54. We are doing this one step at a time.  Mine isn't working and volunteered his keys over saying "I don't want to be resposibile for injuring anyone."  You have got toget to the physician.  Maybe if you ask him to do it for you.......just a thought.  Goood luck

 


PLM
Posted: Wednesday, March 14, 2012 6:37 PM
Joined: 3/13/2012
Posts: 20


Thank you for the advice Lisa.  I appreciate all the good thoughts from you.
PLM
Posted: Wednesday, March 14, 2012 6:41 PM
Joined: 3/13/2012
Posts: 20


Thank you Eaglemom.  I will be taking it step by step with him.  First thing is getting him to the doctor.  I will also work on getting him to let me drive.  He isn't bad yet, but the things we are seeing are concerning us both.  His driving I am not sure fits with what I've read.  It's like he's distracted, not that he's forgotten he's driving.  But it still scares me and I want to get him to drive a lot less.  I think he is going to give up the classes he teaches so that will keep him home more.