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Worried I too have dementia - HAVE NOT BEEN DIAGNOSE !
ccb
Posted: Monday, May 7, 2012 3:25 PM
Joined: 5/3/2012
Posts: 31


ccb

I’m 60 years old and have been having difficulty with simple math, memory, and organization skills for going on 8 years now. I absolutely cannot count medium amounts of money if hand to me by a customer. One hundred twenty nine dollars will not add up. I do act like I count it, or with very large amounts I ask them to count it out for me. I have a tremendous amount of trouble with spelling, marking down appointments I have made and most of the time mix up the days or forgotten all together.

I have had three screenings for AD in the past three years, and have been referred to see a psychiatrist on two occasions. I am now to the point of extreme fear  because I run my own business and I am mentally exhausted by mid day from confusion, mistakes and a host of problems that resemble what I saw with my mother, and now my 66 year old sister. 


I am set up for psych testing to begin soon, but have not heard back yet as to the dates. I was almost begging the nice lady to bump me up for a faster track to get my testing started and began to weep because I feel I am near loosing it at together! The anger/short fuse with my lovely wife and son is a daily and nightly routine. I am so frustrated that they have simple ideas to solve my issues. For example they tell me to" just write it down”, when in fact I do that, but make mistakes on the appointments in the wrong time frame for the wrong days. This happens all the time! 

These episodes makes me feel like as large rock is in my gut when it happens. It has progressed over the 7 or 8 years and the frustrations are never ending!  I have other issues with heart and arterial blockages, while NOT self diagnosing myself, I did print out symptoms of vascular dementia to give to my current doctor to explain what has been going on for our initial visit and only because I exhibit all of the symptoms plus a few more as well. 


Seeing my sister moving so quickly into stage 7 who has been diagnosed 1 1/2 years and my  mom who pasted away @ 73 yrs. old, with about 3 years after being diagnosed. I am really concerned for obvious reasons,  just want to talk and learn anything from others in like circumstances.

 


Iris L.
Posted: Monday, May 7, 2012 7:37 PM
Joined: 12/15/2011
Posts: 16181


Welcome to our online support group, ccb.  I have the same problems,  I'm 62 and my diagnosis is cognitive impairment not otherwise specified.  I've been on Exelon patch and Namenda for three years.  The meds have helped me a lot. 

 

It is very hard  Part of what can cause the same cognitive impairments is persistent uncontrolled anxiety and depression, among other things.  It's very important to have a thorough evaluation by a neurologist who regularly diagnoses and treats the dementias, and who will MONITOR you over time.   

 

What have these three doctors and psychiatrists told you about your condition?  Are you on any medications?  

 

You must do what you can to simplify your life.  Can someone else handle the money and finances?  Is this a family business? 

 

Has anyone spoken to you about relaxation methods?  Tense your muscles and let go, going from foot to head. 

 

Keep reading the message boards and post often.   

 

Call the 24 hour Helpline at 1-800-272-3900 when you want to speak with a Care Consultant. 

 

Iris L. 

 

 


ccb
Posted: Monday, May 7, 2012 10:02 PM
Joined: 5/3/2012
Posts: 31


Thanks Lisa, I have gone to the same neurologist that my mother went to, and I took my sister to him just over a year ago. He has now tested me for AD and says I do not have it and referred my to a psychiatrist. I am not on any meds for these issues. But a psychiatrist recently was speaking at an Alz. meeting where my wife and brother inlaw (sisters husband) had attended, and my wife suggested I contact him which I did. I have only had my initial visit with him and  I am awaiting testing schedule for Psych testing to begin…..soon I hope.

I guess you know about what I may be going through and I thank you for making your comments and questions.

I own the  company and only have my wife and her father inlaw at work, and we all do separate jobs. Mine is sales & marketing and I drive in entire state of Florida making sales then I have recently hired someone to “train” my customers with our products and procedures. I hired him only because it has become to much for me to keep up with!

I have not been told anything, except that I do not have AD, and the new doc says that I have many risks with my current heart problems and blockages I have. So I’m am in a wait to see mode after I am tested with Psych Testing, which I have not had before.

Thanks again, and happy to hear you have had some relief over the last few years.

Very hard for me to relax and when I do it seems to clear my mind of what I worked on today and it is hard to regain where I was on a project and gain momentum again, because “new business” starts the very next day and the cycle repeats over and over again.

Thanks once again,

  Cb


Myriam
Posted: Tuesday, May 8, 2012 12:39 AM
Joined: 12/6/2011
Posts: 3326


Hi, Cb. After thorough testing, I too was told I did not have AD. But when the symptoms continued, I went back to my doctor and told him I knew I had AD. He agreed to put me on the meds (Namenda and Exelon patch) and I agreed to get genetics testing. Turns out I have the Presinilin 1 gene (My father had AD, as did 6 of his 12 brothers and sisters. Half of my older cousins have AD). 

 

I understand there are 4 genes that have been found to cause AD. If you decide to have your genes tested, I would advise that you first get all your ducks in a row, like buying long term care insurance, which you can't get if you have a diagnosis. Also find a genetics counselor if you can. The cost for gene testing 3 years ago was around $425 per gene.  


Here is a paper prepared by the Alzheimer's Assn on what you need to consider for genetic testing:

http://www.alz.org/national/documents/topicsheet_genetictesting.pdf


I wish you the best and look forward to hearing more from you.

 


Iris L.
Posted: Tuesday, May 8, 2012 1:23 AM
Joined: 12/15/2011
Posts: 16181


ccb wrote:

I own the  company and only have my wife and her father inlaw at work, and we all do separate jobs. Mine is sales & marketing and I drive in entire state of Florida making sales then I have recently hired someone to “train” my customers with our products and procedures. I hired him only because it has become to much for me to keep up with!

 

I have not been told anything, except that I do not have AD, and the new doc says that I have many risks with my current heart problems and blockages I have. So I’m am in a wait to see mode after I am tested with Psych Testing, which I have not had before.

Thanks again, and happy to hear you have had some relief over the last few years.

Very hard for me to relax and when I do it seems to clear my mind of what I worked on today and it is hard to regain where I was on a project and gain momentum again, because “new business” starts the very next day and the cycle repeats over and over again.

Thanks once again,

  Cb


CCB, it's great that the doctor's don't think you have AD.  Did they mention anything about MCI, mild cognitive impairment?  Pseudodementia due to depression and anxiety?  Have you had any blood tests for vitamin deficiency, hormonal deficiencies?  Any history of old recurrent head trauma from sports?  Some medications cause memory loss. 

 

One of our members discovered that low testosterone was the cause of his memory loss.  After hormonal supplementation, his memory retuned to baseline. 

 

You must have a THOROUGH evaluation.  You can't rely on isolated tests to make a diagnosis.  Alzheimer's is a rule-out diagnosis--you must rule out treatable causes of dementia. 

 

Having said that, know that Alzheimer's causes about 70& of dementia.  Vascular causes are responsible for about 20%.  Your doctor has already told you you are a cardiovascular patient.  The same vascular problems that affect the heart can affect the brain and cause vascular impairment and vascular dementia.  You must work very hard on reducing your risk factors--high blood pressure, high cholesterol, atherosclerosis, and atrial fibrillation for example!  Have you ever had TIAs?  Are you a diabetic?  Diabetes is another risk factor.  What is your HgbA1c? 

 

I know travelling salesmen don't get enough sleep.  You must practice good sleep hygiene.  Poor sleep quality impairs memory. 

 

Can you work with a smartphone and a bookkeeper or another in your business to handle the financial affairs of the business?  Can you use a smartphone?  I'm still working on learning how to use my flip-phone. 

 

Do your family know of your memory concerns, especially having to do with the business?  Have you arranged POA with anyone for property and for healthcare?  Now is a good time to begin getting your legal affairs in order. 

 

Is your son grown? 

 

Iris L 


Iris L.
Posted: Tuesday, May 8, 2012 1:41 AM
Joined: 12/15/2011
Posts: 16181


ccb, I forgot something very important. 

If you are smoking try to stop. 

 

If there is any alcohol use, try to stop pending the results of your neuropsychologic testing.  Once you have completed all of your medical testing and have a clearer picture of what you are facing, you can consider whether or not an occasional alcoholic beverage will be a part of your treatment plan.

Iris L.
 


ccb
Posted: Tuesday, May 8, 2012 10:33 AM
Joined: 5/3/2012
Posts: 31


I do not smoke, and do not drink alcohol (28 years now). No head trauma, no blood test as yet, no to MCI and have had not had an MRI just for my brain. I did go to the hospital a year or so back, some symptoms of heart attach, and somehow I was told NO to having a TIA, yet it showed up on my records. There was some confusion that night in the emergency room, and the ER doc, sent a young (not even an aid) to tell me the results. This young man told me I had a TIA, at that time I told him I needed to talk directly to the ER doctor el pronto! The doctor told me NO but I was very surprised to learn two weeks ago that it is in my medical records????

 

Yes my family is very aware of my issues and I tell a lot of people that I communicate with (not sure why) I guess a defense posturing of some sort because the likely hood is extremely high of me dropping the ball in some way.

 

I believe and have confidence that I am now connected with the Dr.that will  be diligent getting to the bottom of the long path I have been on........thanks again.

 

I have two grown children that are married and have 3 "grand girls" as I call them, and a 18 year old that is still living at home.


ccb
Posted: Tuesday, May 8, 2012 1:35 PM
Joined: 5/3/2012
Posts: 31


Myiam, thanks so much for your impute and sharing what you have experienced.  I have already learned quite a lot from the link you provided me, and insight to your family's plight with this terrible disease that has run so rampant in your family. Thank you and God Bless you!
Lisa428
Posted: Tuesday, May 8, 2012 3:19 PM
Joined: 12/5/2011
Posts: 795


Dear ccb,

 

Hello and welcome to the alzconnected message boards.  I'm sorry for what brings you here but I am glad you've found us.

 

I don't blame you about being worried if you have some kind of dementia.  With your family history and your symptoms, you may be right.

 

As the others have said, it is VERY important to get  thorough physical and mental  exams because certain dementias can be treated and fixed.  And that would be the best outcome for you.

 

However; I think it is very important to get neuropsychological testing.  It is essential for a proper diagnosis.

 

Please, take care of yourself.  You sound very anxious.  Believe me I do know what you are going through!  I have EOAD but it took 4 doctors, 6 months and many, many tests to get a proper diagnosis.  It can drive you mad just waiting.

 

Please, try some relaxation, deep breathing to help your reduce your stress.

 

Come here as often as you'd like.  We're here.

 

Peace and Hope,

Lisa


ccb
Posted: Tuesday, May 8, 2012 5:21 PM
Joined: 5/3/2012
Posts: 31


Thanks Lisa, It is somewhat calming just to talk to someone who understands possible issue stemming from my symptoms that have progressively worsened over the past several years.

I do appreciate this site and those who reach out to help anyway they can. I am waiting for my schedule to start with neuropsychological testing. It can’t come fast enough !


Cb


Lisa428
Posted: Wednesday, May 9, 2012 1:05 PM
Joined: 12/5/2011
Posts: 795


Hi ccb,

Just wanted to let you know I'm thinking of you.

I do know how difficult it is to wait!  Just remember, stress is our enemy!  It does terrible things to us.  Please, try to find ways to relax.  It will help you a lot.

Keep hanging in there.

Peace and Hope,

Lisa


AthenaH3
Posted: Wednesday, May 9, 2012 4:18 PM
Joined: 5/9/2012
Posts: 1


Hello, ccb...I'm so sorry for all of the problems you've been having...it has to be extremely difficult for you.

Some of the symptoms you've described sound very much like Primary Progressive Aphasia, although the fact that you write so well after 8 years does make me wonder.  I have a niece with PPA...she was running her own dry cleaning business but started having problems like you mention...problems with counting money, doing any kind of paperwork, organization, spelling (couldn't spell "cat" or "it")...

Sadly, she can no longer read, write, not even her own name, or speak very well...PPA robs you of those things, so it's definitely not a diagnosis you want to hear...however, you need to find out something.  I hope this isn't it.

Please ask your doctors about it...

My thoughts and prayers go out to you...

Athena


Mimi S.
Posted: Wednesday, May 9, 2012 4:56 PM
Joined: 11/29/2011
Posts: 7035


Hi CCB,

While you're waiting, have your library get you a copy of 

the Alzheimer's Action Plan by Doraiswamy and Gwyther of Duke Univ. You'll understand what you should bed seeing in your testing process.

 

And you need the entire screening including physical, blood work up, one or more brain scan and the neuro-psych.

 

The gene test, even if positive does not prove you have dementia. It only gives your chances. That is, unless you are one of those very rare types who is a member of a small group that if they have a particular gene, do get it.

 

You'd know if that fits: all the members of the family get it. One just wait around.

 

Your mother and your sister, sad as it is, does not guarantee that you will get it. One expert said that with that history, your chances go up a few percentage points. 

We so glad you keep writing.  And all of us with the disease, know what it's like to wait.

 

Meanwhile, who can do that money counting and the other things that are giving you problems?


ccb
Posted: Thursday, May 10, 2012 12:37 PM
Joined: 5/3/2012
Posts: 31


Thanks Mimi, 

Just notified today my testing will start on Monday of next week, and I will get a copy of the book that you gave me to.

The info. is very helpful and as far as the counting of the money, It is very seldom that I even work with it any longer. My wife is our book keeper and very good at the numbers and the money. I run into it at the end of the sales cycle receiving down payments or payoffs in cash and it is mostly checks anyway.

Thank you,

  Cb


ccb
Posted: Thursday, May 10, 2012 1:05 PM
Joined: 5/3/2012
Posts: 31


Thank you Athena2H,

I  do appreciate the information regarding your niece and her condition. I will read up more on it more too. I have just learned I do have my testing appt. to start on this Monday.

As far as you comment on my writing in my post, the truth is my post usually takes my 15-20 minutes to read, retype, re-read, correct problems etc, etc, so it is a long task regarding my work and written communications with clients/customers.

I can read well enough, but cannot comprehend the content and my frustration level jump to the extreme!

Thank you for your response regarding my health issues, all information and the communication with everyone on here is comforting  as well.


Iris L.
Posted: Thursday, May 10, 2012 2:52 PM
Joined: 12/15/2011
Posts: 16181


ccb wrote:

As far as you comment on my writing in my post, the truth is my post usually takes my 15-20 minutes to read, retype, re-read, correct problems etc, etc, so it is a long task regarding my work and written communications with clients/customers.

I can read well enough, but cannot comprehend the content and my frustration level jump to the extreme! 


I have this problem with reading comprehension also.  I have spent up to one hour on a response. 

Sometimes I have gotten so frustrated in making my response because it seemed that what I wanted to say was not clear, that I have given up and cancelled my post after all that work.
 

 

No doctor or psychologist seems to understand and they offer no solutons except to play games and do puzzles. 

 

Iris L. 


Geegee
Posted: Friday, May 11, 2012 11:39 AM
Joined: 11/29/2011
Posts: 514


ccb, I want to also welcome you here!   you seem to have already met so many of our online family!  I'm sorry for the problems you are having and the resulting frustrations.  Just know that you can come here for reassurance anytime.  We will do our best to understand and support you.


I was diagnosed with probable AD two years ago at age 63.  It is never an easy process for any of us.  As  Lisa, Iris and Mimi, etc. explained, you need to have all the necessary blood work, neuropsych testing, MRIs, and evaluations.  


All of us had to first rule out every thing else that could be causing our problems, just like you are doing.  If any of us could have found a fix for our problem along the way..then hallelujah!  My diagnosis was confirmed after neuropsych tests and MRI.  By comparing a new brain MRI with on 5 yrs. prior, they were able to find atrophy in 3 regions of my brain.


I'm glad to hear you have testing scheduled for Monday.  It's step by step.  It takes the WHOLE PROCESS...and some patience.  Good luck Monday.  You are one step closer to an answer.


Welcome.  


ccb
Posted: Friday, May 11, 2012 3:48 PM
Joined: 5/3/2012
Posts: 31


I thank you Geegee, so far every single time I have tried to log in since I signed up several day ago (for the 2nd time- once last year) I have to reset my password. I do write it down but......well I guess you know the rest of the story. I just hope that I don't get kicked off of the site....just kidding of course.
Iris L.
Posted: Friday, May 11, 2012 4:07 PM
Joined: 12/15/2011
Posts: 16181


ccb wrote:
 I have to reset my password. I do write it down but......well I guess you know the rest of the story.

I taped one of my passwords on the side of my CPU with a yellow sticky note so I don't have to go looking for it when I need it.  I'm not worried about anyone else getting this password.

Iris L
.
SteveSanJose
Posted: Friday, May 11, 2012 4:55 PM
Joined: 1/3/2012
Posts: 189


I developed dementia related MCI at age 60.  I am now 62.  Was  diagnosed with EOAD at age 61.  If problems is just memory, that is not Alzheimer's, or dementia, but a symptom called MCI; or mild cognitive impairment.  MCI can lead to Alzheimers but not always. There is a psychiatrist that does memory testing, that is what the Nuro-Phych exam is.  There is medicine that could stabilize your memory, and thay are ways you can do what you used to do; but in different ways. To improve your memory you need a diagnosis. It takes personal courage to tackle any medical problem that effects your job or life. But once you do you get the satisfaction, and emotional relief that you need. Your dotor can help. Also , your State Department of Rehabilitation can help you keep the job you have; as long as you want to keep it. Any thay pay for any thing needed.
90FORLIFE
Posted: Sunday, May 13, 2012 8:11 PM
Joined: 5/13/2012
Posts: 1


This has been deleted by the ALZConnected Admin 5/14/12.


Myriam
Posted: Sunday, May 13, 2012 8:22 PM
Joined: 12/6/2011
Posts: 3326


90FORLIFE wrote:

If interested, for your information, email me at ...... You may have heard these:

 1. There is no definitive test to determine what you may have.

 2. If your doctor gives you a prescription, that proves clue 1.

 3. If the doctor's say there is nothing that can be done for for prevention or reversal.

Edited By ALZConnected Moderator 5/14/12

 


  

:( sad  THIS APPEARS TO BE SPAM!!!!! 90FORLIFE, shame on you. X( angry 

 

ccb
Posted: Sunday, May 13, 2012 8:36 PM
Joined: 5/3/2012
Posts: 31


Yep, looks like snake oil maybe?
ccb
Posted: Sunday, May 13, 2012 8:44 PM
Joined: 5/3/2012
Posts: 31


NeuroPsyhc testing starts tomorrow, and the Dr. has already said he will have an MRI. Not just memory, but unable to do other things noted in my profile. In fact what I showed my doctor is a print out of symptoms of Vascular Dementia , plus a few not on that list. Thanks for your comments and information. Hope you continue to post and help others like or “new” to the message board.

Matter of fact, just thanks again to everyone for their input and words to have strength to keep seeking out the truth till I find the right doctor.

 


Iris L.
Posted: Sunday, May 13, 2012 10:31 PM
Joined: 12/15/2011
Posts: 16181


Good luck with your testing tomorrow, ccb.  Get a good night's rest!

You're one of our members now, and regardless of your testing results, we want to support you.  We support each other.

 

Iris L. 


Iris L.
Posted: Sunday, May 13, 2012 10:34 PM
Joined: 12/15/2011
Posts: 16181


Objectionable posts can be reported to Admin by clicking on the "Repost Post" button.

Iris L.

Myriam
Posted: Sunday, May 13, 2012 11:39 PM
Joined: 12/6/2011
Posts: 3326


Thanks, Iris. I did, but had to castigate, too.
nomemo
Posted: Monday, May 14, 2012 12:57 AM
Joined: 3/21/2012
Posts: 439


i agree, rest is so important.  we're all with you on this and will be waiting with you to hear the results.  waiting for the results, though, can cause some angst, so please do come back to the board and let us know how you're doing.  almost all of us have gone through it....and all of us care.  i've certainly found that out.
ccb
Posted: Monday, May 14, 2012 6:14 PM
Joined: 5/3/2012
Posts: 31


Well today was really tough. Not sure how I did, some things seems ok and some I know I must have struck out over and over again. As I have read I was extremely tired and not in a good mood to deal with work afterwards.  Left early and came home, like many other days.   Will go back in a few weeks to continue another 3-4 hours of testing.
Iris L.
Posted: Monday, May 14, 2012 8:38 PM
Joined: 12/15/2011
Posts: 16181


Good for you, ccb, that you got part of the testing out of the way. 

 

I hope you'll be able to get back to your routine. 

 

Are you practicing any relaxation techniques? 

 

Iris L. 


ccb
Posted: Thursday, May 17, 2012 4:10 PM
Joined: 5/3/2012
Posts: 31


Iris, I do need to practice relaxation for certain but have not made it to even trying.

 I am on  hair trigger response and have been for a while, and getting worse. Every single day, and maybe more than that on some occasions.

Like I said in a previous post, I am mentally drained by mid day and that is almost every day. I travelled to a work project 3 hours from my home and it took by 4 hours and 45 minutes to get home. Left at 530am got be around 545pm. Not a lot of down time, and it shows! Depressed and feel out of control and fighting back to try to stay on track and in control of my life and business.

By the end on the day I am spent !


Mimi S.
Posted: Thursday, May 17, 2012 4:29 PM
Joined: 11/29/2011
Posts: 7035


Hi again CCB, Sounds like you have to cut back. Sounds like a family discussion is in order on how this can be done.
Iris L.
Posted: Friday, May 18, 2012 12:45 AM
Joined: 12/15/2011
Posts: 16181


ccb wrote:

Iris, I do need to practice relaxation for certain but have not made it to even trying.

 I am on  hair trigger response and have been for a while, and getting worse. Every single day, and maybe more than that on some occasions.

Like I said in a previous post, I am mentally drained by mid day and that is almost every day. I travelled to a work project 3 hours from my home and it took by 4 hours and 45 minutes to get home. Left at 530am got be around 545pm. Not a lot of down time, and it shows! Depressed and feel out of control and fighting back to try to stay on track and in control of my life and business. 

By the end on the day I am spent ! 


ccb, you sound like you are close to a meltdown, to use the vernacular. 

If you have a psychiatrist/psychologist/other therapist, please call NOW! 

You need help.

I'm not going to repeat what I said earlier.

Here is a link to one site about progressive muscle relaxation.  This technique has changed my life!  It is easy to learn.
http://www.ask.com/wiki/Progressive_muscle_relaxation 

 

You can think about doing it at minimum of three times a day--mid-morning, mid-afternoon, and in the evening before bed. 

Try to get to bed at least one hour earlier than usual.  NO tv, especially the news, or computer before bedtime.  Warm bath, easy reading, easy music to listen to, something more intimate if possible promote relaxation.


Anxiety and stress will damage your cognition. 

You have the opportunity to get control of your life.  But you have to take the steps.  Otherwise you may become so incapacitated that others will have to take charge of your life.


Iris L.


ccb
Posted: Wednesday, May 23, 2012 4:13 PM
Joined: 5/3/2012
Posts: 31


Another attempt today at work, but didn’t last long maybe 2 hours and I was shaking inside from problems and issues that come in daily regarding my business. I almost called a “broker” again today, but called my doc. and got an appt. for Friday to see him (family doctor only). Second set of testing next week for 3- 4 hours. I can’t explain exactly how I feel to my wife or anyone for that matter but it is like I am shaking internally.

I currently take 1/2 of .05MG of Clonazepam prescription  for twice a day. I have taken one tablet as needed but seldom because it makes me tired and I drive most every day all day.

Thanks for listening, just looking for some inter peace!


Iris L.
Posted: Wednesday, May 23, 2012 5:58 PM
Joined: 12/15/2011
Posts: 16181


ccb wrote:

 I can’t explain exactly how I feel to my wife or anyone for that matter but it is like I am shaking internally.

 

I currently take 1/2 of .05MG of Clonazepam prescription  for twice a day. I have taken one tablet as needed but seldom because it makes me tired and I drive most every day all day.


Ccb, two points: 

You will have to learn to speak with someone you trust about what is going on with you.  If you read the Spouse/Partner boards, you will see that the bond between them is very strong.  I believe most spouses want to help.  Not all of course.  You have to beware of someone that might take advantage of your lapses.

Do you discuss these feelings with your therapist?
 

 

Driving while impaired with medication is just as bad as driving while impaired with alcohol.  There are medications that do not cause sedation.  You can discuss this with your prescribing doctor.  You don't want to have a DUI on top of your other challenges.

Iris L.