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Aviva
Posted: Thursday, April 26, 2012 9:35 PM
Joined: 4/26/2012
Posts: 10


Hi.  I'm new to this message board.  My husband of almost 30 years found out last year that he has early onset alz.  He's  53.  Our primary doctor doesn't believe the pet scan results and the MRI says he has atrophy of the brain and that his brain is that of a "healthy 80 year old". We have been going back and forth on his diagnosis because our primary dr who is also a personal friend feels my husband is just suffering from "Profound depression" that needs to be treated. My husband has been on anti depressants for most of his life.  We just got the MRI report that he had done yesterday and don't really understand the results.  The doctor (Primary) said the most important thing is that there's "no significant change" since last year. 

 

Any insight would be very helpful.

 

Thanks.


Iris L.
Posted: Friday, April 27, 2012 12:00 AM
Joined: 12/15/2011
Posts: 18513


Welcome to the message boards, Aviva.  I'm sorry that your husband has received that diagnosis.  It is best to work with a specialist--a neurologist who regularly diagnoses and treats dementia.  This specialist can evaluate for any number of medical conditions that mimic or cause dementia, some of which are reversible if caught in time. 

 

An 80 yo brain in a 53 yo does not sound healthy. 

 

Depression can mimic dementia and has its own name--pseudo-dementia. Once the depression is treated, the pseudo-dementia reverses.   

 

Depression can be episodic--lasting for a few weeks or months, then resolving, but returning in a cycle over the years.  Somewhat like bipolar cycles but without the mania portion. 

 

Or depression can be chronic, which is called dysrhythmia.  Chronic and major depression are risk factors for Alzheimer's disease.   

 

The medications that are used to treat depression can CAUSE dementia-like side effects in some patients.  This is because the elderly have a paradoxical effect of some psychotropic medications--they react OPPOSITE to the desired effect.  This is a common effect in many seniors. 

 

Was your husband evaluated for hormonal problems, vitamin deficiency, anemia, hearing or vision loss, medication effect and/or interaction?  Has he had a history of head trauma?  What about history of heavy alcohol use?  Any history of strokes or major cardiorvascular or immunologic disease or disorder? 

 

Has your husband had neuropsychologic testing?  This lasts approximately six hours at a neurolpsychologist's office.  My testing was done two hours a day on three separate days, although I read recently on testing being done all in one day. 

 

Is your husband still working?  Or was he laid off because of inability to perform his duties?   How is he faring at home?  Can he pay the bills and made decisions at home? 

 

Please read the main webpage's information on diagnosis at alz.org.  Then search for an Alzheimer's Disease Research Center for a second opinion.  Actually it will be a first opinion because from what you have written your husband has not had a thorough evaluation.  But you can tell the PCP that you want a second opinion.  It's done all the time.  I myself had three opinions. 

 

The Alzheimer's Association provides a 24 hour Helpline to advise and support the public.  You can call and ask to speak with a Care Consultant for advice on locating a ADRC near you. 

 

If the diagnosis is indeed Alzheimer's, the Alz Assoc has worked with Social Secuity Administration to add EOAD to Compassionate Allowances so patients become immediately eligible for SSDI benefits.  Does your husband's company offer long term disability insurance?  Don't make any employment decisions until you have more definite medical information. 

 

You have landed in a message board populated by patients with dementia.  There are two caregiver boards, one is a general caregiver board and the other board is for spouses/partners.  You are invited to visit and post on all boards. 

 

Please read many of the threads on these boards, and look for a specialist.  It is important to get on medication as soon as possible if the diagnosis is Alzheimer's disease. 

 

Iris L. 

 


Iris L.
Posted: Friday, April 27, 2012 12:16 AM
Joined: 12/15/2011
Posts: 18513


Aviva, I read your protocol after I read your post.  Your husband's conditions is serious.  Get him to a qualified neurologist right away!   

 

He should not be driving at all since he wants to drive through red lights. There are many threads on how to stop an ADLO from driving. 

 

I take it your husband is not on memory meds  A cholinesterase inhibitor plus Namenda might improve his functioning.  They are not cures, however. 

 

If your husband has been to five neurologists, why is he not on medication?  If your husband trusts the PCP too much, you will have to learn about "loving lies" and make up a reason for seeing a competent neurologist. who will follow your husband and prescribe a treatment plan and help guide you during his long illness.

 

It would probably be a good idea NOT to mention the terms Alzheimer's or dementia to your husband.  These can be scary terms and may induce resistance. 

 

You need to get your legal work done right away while your husband is still able to give consent.  Your need Durable power of attorney for property and durable power of attorney for health care.   

 

Please follow through and stay in touch. 

 

Iris L.  


RebeccaJ
Posted: Friday, April 27, 2012 8:17 AM
Joined: 4/19/2012
Posts: 83


Hi Aviva,

I too was dx'd with depression for 5 years before getting my Fronto-Temporal Dementia dx. I am now 57 and disabled and can't take care of alot of decision making because I can't keep track of stuff. The doctors can't see my demntia by just looking at me because by body is strong and healthy. The neuropsych testing found my specific problems. I complained to four primary care doctors before getting a neurologist that sent me for testing. The doctor that tested me understood my symtoms immediately, before testing! I was so relieved, I cried just to be validated. 

Has your husband had neuropsych testing? Be careful here, too. My first one was inadequate. It was too short to get the full diagnosis.

My prayers are with you and your husband.

Rebecca


Mimi S.
Posted: Friday, April 27, 2012 8:41 AM
Joined: 11/29/2011
Posts: 7027


Avia,

 

Welcome to our boards. And Iris, thank you for your wonderful response.

 

 Avia, Iris has a lot of information in her response. You might want to copy and paste it into a new document and then print it out. You'll have it at hand to read and read again.

 

From your library ask for a copy of The Alzheimer's Action Plan by Doraiswamy and Gwyther of Duke Univ. It describes what a good diagnosis is. 

 

Your family doctor is, perhaps, biased because of his friendship with you. He refuses to believe the scientific (scan) evidence.  

See if you can find a local geriatrician or neurologist who is knowledgeable about treating dementia. Your local Alz. Chapter should be able to supply you with name/s in your area. If you aren't already in touch with them, call the help line: 1-800-272-3900 and they will find it.  Also ask if there are any support groups for him in your area. There are lots of groups for caregivers (a good idea for yourself) but few for him. 

 

You can certainly keep your friend as your primary for all other non dementia related concerrns. Hopefully, the two will work together for the best outcome for your husband.

 

I'm Still Alice by Lisa Genova is fiction written from the viewpoint of a Harvard professor diagnosed with Early Onset. She has a section of the book that deals with her need to speak with others in the same boat. She eventually starts her own group.

 

There is a section of the forum just for people who were diagnosed early. I hope he can try it.

 


Myriam
Posted: Friday, April 27, 2012 10:25 AM
Joined: 12/6/2011
Posts: 3326


Iris, Rebecca and Mimi have given you great advise. Just wanted to welcome you to the Boards. The sooner he gets on the meds the better! I want to reiterate what the others have said: it's important to go to a neurologist or gerontologist/geriatric physician who specializes in dementia.
frustrated047
Posted: Friday, April 27, 2012 10:32 AM
Joined: 12/18/2011
Posts: 36


Welcome Aviva,  

  

There are the regulars here that as you can see post valuable information.  I'm sorry that your going through this, but it really does sound like somehow you need to find a Dr. that is impartial and will look at the the reality of your situation and the test results.  Good luck to you and your loved ones. 


Be Strong 2
Posted: Friday, April 27, 2012 11:18 AM
Joined: 12/14/2011
Posts: 1751


Aviva, 

 

 I am so thankful for my wife's PCPs.  I say plural because the only problem we have in our smaller size city is that there is constant turnover of doctors, at least in my wife's case. 

 

 

While I won't disagree with those that recommend specialists, I must say that it was my wife's PCP who grabbed the bull by the horns and ran all the necessary tests.  She picked up on wife's strange behavior herself, and she had only seen her one time prior.  The PCP also took the initiative and had my wife's drivers license cancelled.  Referrals were made to the neurologist and the dx was confirmed. 


 

The first neurologist made the dx but because he was young and hadn't had much experience with EOAD (wife was 57) he made a referral to the Mayo Clinic.  The neurologist there re-confirmed the dx.  Medications had already been started by the PCP. 


 

It sounds like maybe your husband's PCP, being a personal friend, may be suffering from a little denial.  Doctors are people too and have to fight their own human bias and feelings.  It has to be tough to be clinical when the human feelings rise to the surface. 


 

My wife now has a new PCP, since her previous one left town, and he is just so very good.  He seems genuinely concerned, talks to my wife first, and then me second.  There seems to be a rapport building so it is easy to get my wife to go to the doctor.  The PCP handles all the medications and the neuro's are now out of the picture. 


 

Bob    


Aviva
Posted: Friday, April 27, 2012 2:59 PM
Joined: 4/26/2012
Posts: 10


Hi,

 

Thank you so much to everyone who has responded to me.  This is all so scary. 

All of your information has been so very helpful.  My husband has already been to a total of 5 neurologists who have confirmed eoad from a pet scan so I don't think I need another opinion on that.  I will call his current neurologist to get my husband on some medications for more than just 2 weeks.  He saw the neurologist a few months ago and he said he doesn't need to see him until July.  Is there any reason to make an earlier appointment?  Is it true that the lifespan of eoad is 6-8 years from time of diagnosis? That's what I was told from the ALZ 800 #.  I guess I just don't want to believe that.

 

To answer some of your questions, my husband is otherwise healthy except for high blood pressure which is under control.  And his depression.  On days that we don't have dr. appts, I do try to get him out of the house as much as possible but sometimes he just wants to stay in bed and says things like "leave me alone" or "go away" which he never, ever would have said to me before.  It's very painful for me to watch him just sleep away his life.

 

I will write again later.  Thanks again to everyone for their support.

 

Aviva


Mimi S.
Posted: Friday, April 27, 2012 3:40 PM
Joined: 11/29/2011
Posts: 7027


Bob, You have been incredibly lucky with your local doctors. We just hope that soon all can experience the type of care that you wife has seen.
Mimi S.
Posted: Friday, April 27, 2012 3:54 PM
Joined: 11/29/2011
Posts: 7027


OK Aviva,

Thank you so much for getting back to us.

 

The numbers you were given are averages. It can be much shorter or much longer. There's an old saying that I first heard from Maria Shriver: If you have seen one Alzheimer's patient,you have seen one Alzheimer's patient. In other words, each case is different. 

Take myself: I'm much older than your husband and my present cognition is better than it was at diagnosis five years ago.

Believable? According to three researchers I've spoken to it is not only possible, but can be the norm if:

 

1. There is an Early Diagnosis.

2. Patient faithfully follows the Best Practices.

 

Best Practices. 

1. Take meds as directed. I also take Omega 3, CA with Vitamin

 D3 and antioxidants.

 

2. Strenuous physical exercise. You must get that heart pumping. If he's been a couch potato, go slow, but keep increasing the pace. 

 

3. Strenuous mental exercise. Puzzles, learn a new instrument, language. Get that brain working!

 

4. Mediterranean Diet. Please google for more inforation. Again, if he's a steak and french fries person, change slowly, but change. No smoking. A little red wine is good.

 

5.  Increase socialization. Get out, go to activities where you have conversations with oters. Invite another couple for dinner. Read a book together and then discuss it.

When you read the above, please know that I am concerned about your husband. His current life style needs to be reported to his dementia doctor. He has to get out of bed. Perhaps some antipdepressants will help.

 

And please, encourage him to join us on the Early Onset Boards. 


Be Strong 2
Posted: Friday, April 27, 2012 5:39 PM
Joined: 12/14/2011
Posts: 1751


Mimi S. wrote:
Bob, You have been incredibly lucky with your local doctors. We just hope that soon all can experience the type of care that you wife has seen.
Mimi,

It seems like a strange thing to say, dealing with this disease, but I know that my wife and I are truly blessed.  I thank God daily and pray that our journey may continue to be gentle.  

I know the reality of the journey is something that we have little control over, other than our attitudes.  Sometimes I feel guilty for our good fortune but then remember that God is in control.  He only gives us what we can handle, or will give us the ability to handle more as He gives it.  We never know, how we handle our situation may provide a blessing to someone else.


Bob  

Iris L.
Posted: Friday, April 27, 2012 8:11 PM
Joined: 12/15/2011
Posts: 18513


Aviva, no one, even the doctors, can predict how long anyone will live with EOAD. 

Statistics are not a prediction of longevity. 

  

Your husband appears to be seriously depressed.  He needs aggressive treatment of his depression, even if he does also have EOAD.  Depression and dementia can overlap, but the depression will make the dementia worse. 

  

Please take a look at Mimi's video.  She is doing better now than she was five years ago at the time of her diagnosis, because she is aggressive about her treatment.  She is staying "one step ahead of Alzheimer's." 

http://www.youtube.com/watch?v=Q2w9LG3hMlU   

 

A group of our members just returned from Washington, D.C., where they met with our nation's congressmen and congresswomen to advocate for research and care for dementia patients.  There is hope for us and soon there will be even more hope! 

 

Iris L. 


Aviva
Posted: Saturday, April 28, 2012 8:54 AM
Joined: 4/26/2012
Posts: 10


Hi Rebecca,

 

Yes, my husband did have some neurological testing done and he was approved to do a clinical study for eoad.  It was about 3 hours, not six.  He hasn't had any other testing besides the tests the neurologists gave him at the office visits.  The other day he forgot that his MRI appt was changed from 4pm to 2pm and went to lunch with my daughter and almost missed the appointment.  I got so mad at him cause I'm not used to that and then my daughter said "mom, he has alzheimers" and I realized I was wrong to be mad at him, he can't help it.  I try to be as patient as I can but we almost missed the appointment cause I had to go pick him up at the restaurant they were at. 

 

My husband is extremely depressed.  He feels like he has lost everything.  We had to sell our house about 3 years ago, we moved to a smaller rental, and this past February, we downsized again. Besides that, during the flood in August, we lost tons of personal items, as we had 19 inches of water in our basement.  We even lost our wedding pictures. It was extremely difficult to deal with plus everything else going on.  He had to leave his job as well.  This is a man who got up everyday at 6am and was on a bus to Manhattan to work, always dressed well, was charming, etc.  His personality is completely changed.  He looks sad all the time.

 

He is on 2 different anti depressants and has been for most of his life.  They have been changed from time to time.  Our primary doctor feels what he has is psuedo dementia even tho the 2 PET scans he had shows the disease.  My husband was seeing a psychiatrist who specializes in alz but he wants him to do electric shock therapy which I haven't seen mentioned on here yet.  My whole family is against that and my husband is terrified of that. One of the side effects is memory loss so that doesn't make much sense to me, however, i'm not a doctor.  Have you ever had that?

 

Thanks for writing.  It's good to know we're not in this alone.

 

Aviva


Aviva
Posted: Saturday, April 28, 2012 9:02 AM
Joined: 4/26/2012
Posts: 10


Hi Mimi,

 

Thanks for writing back to me.  You have given me lots of valuable information.  I watched your video and you are certainly an inspiration to many, I'm sure.

 

Unfortunately, right now, my husband is in a place where he has lost interest in any of the things he used to enjoy and is extremely depressed.  As I wrote to Rebecca, the psychiatrist who he was seeing wanted him to do electric shock therapy but we are terrified of it.  Are you familiar with it?  I am in the process of trying to find him another psychiatrist who specializes in ALZ who takes our insurance which is not an easy task. 

 

It is very difficult for me to write right now cause I'm just getting sad myself.  I try to get him involved in things, but he acts like an old man.  That's because he has atrophy of the brain and that's why he has the the brain of "a healthy 80 year old", whatever that means.  Plus the ALZ.  The thought of me losing him is just unbearable.

 

Thank you for your posts and I'll keep in touch.

 

Aviva


Mimi S.
Posted: Saturday, April 28, 2012 9:03 AM
Joined: 11/29/2011
Posts: 7027


Bob,

Just a comment and this is not aimed at you.

 

In various times of my life I've gone through crises. Well meaning folk have always quoted that phrase: God never gives us more then we can bear.

 

I hate it. I feel like screaming: I wish I weren't strong then.

 

What I have realized over time is the awareness of what I have been handed over time is nothing compared to what other folks have had to endure.

 

I have a grandson with multiple health problems. His mother echoes the same thought. As she sits in Children's Hospital, waiting her turn, a look around the room lets her know how minor her and his problems are compared with others in the room.


Aviva
Posted: Saturday, April 28, 2012 9:09 AM
Joined: 4/26/2012
Posts: 10


Hi Iris,

 

I don't remember if I wrote back to you or not.  Like Mimi, you have given me much information and I really appreciate it.  Plus I have been in touch with the alz assoc for months already. 

 

My husband does see a neurologist who specializes in alz and he was seeing a psychiatrist who specializes in it as well but they both want him to do electric shock therapy which scares my entire family.  Plus the side effect is memory loss so that doesn't make much sense to any of us.  As I said in another post, I am in the process of finding him another psychiatrist who specializes in ALZ who can put him on medication that will help him.  The neurologist has tried a few ALZ medications on him but only for a short amount of time, like 2 weeks on the exelon patch. Told me to call him when the samples were used up. I didn't see a difference, told him so, and so that was the end of that.  Then I was told by someone else that he needs to be on it for at least 6 months.  When I called the doctor's office back yesterday, they were already gone for the day.  Guess I'll have to call back on Monday. 

 

I'm also going to look into taking my husband to the Mayo Clinic in Jacksonville as we are planning a trip to Florida this month.  I would just like another opinion from someone reliable.  I'm not sure how soon I would be able to get an appt tho.

 

Well, gotta run. It gets too emotional for me to write too much.  I'm sure you understand.

 

Take care and thanks again for all of your insight.

 

Aviva

 

 


Iris L.
Posted: Saturday, April 28, 2012 9:13 AM
Joined: 12/15/2011
Posts: 18513


Aviva wrote:

Hi Rebecca,

 

Yes, my husband did have some neurological testing done and he was approved to do a clinical study for eoad.  It was about 3 hours, not sixHe hasn't had any other testing besides the tests the neurologists gave him at the office visits. 

 

My husband is extremely depressed.  He feels like he has lost everything.  We had to sell our house about 3 years ago, we moved to a smaller rental, and this past February, we downsized again. Besides that, during the flood in August, we lost tons of personal items, as we had 19 inches of water in our basement.  We even lost our wedding pictures. It was extremely difficult to deal with plus everything else going on.  He had to leave his job as well.  This is a man who got up everyday at 6am and was on a bus to Manhattan to work, always dressed well, was charming, etc.  His personality is completely changed.  He looks sad all the time.

 

He is on 2 different anti depressants and has been for most of his life.  They have been changed from time to time.  Our primary doctor feels what he has is psuedo dementia even tho the 2 PET scans he had shows the disease.  My husband was seeing a psychiatrist who specializes in alz but he wants him to do electric shock therapy which I haven't seen mentioned on here yet.  My whole family is against that and my husband is terrified of that. One of the side effects is memory loss so that doesn't make much sense to me, however, i'm not a doctor.  Have you ever had that?

 


Your husband's evaluation does not sound thorough.   

 

Last year on the old boards I posted about pseudodementia.  There is evidence that electroshock treatments can bring a severely depressed patient out of depression and out of pseudodementia.  Electroshock can help psuedodementia but may worsen Alzheimer's. 

  

I am attending an all day conference on brain injuries today so I must leave soon.  I'll post more later.   

 

Iris L. 


RebeccaJ
Posted: Saturday, April 28, 2012 4:59 PM
Joined: 4/19/2012
Posts: 83


Hi Aviva,

I am thinking about the PCP and Psychiatrist. They were of no help to me, but the person who did the most was my Cognative Therapist. She knocked the depression out of me and gave me the direction I needed. She was very firm about what I could do and to forget the old me and what I can't do anymore. Yes I cried alot in the beginning.

Her techniques for self-reliance in my daily activities were positive. Are you letting your husband do enough for himself so he can see what is possible? Don't baby him, but make sure he is safe. My husband takes care of the money, and I post my schedule on the kitchen refrigerator. We review it every day. I also keep a notebook to write EVERYTHING in. My thoughts, things I did (because by the time he gets home from work I can't remember the day's stuff). I have limits on everything I do because I can't always stop on my own. It is a way of life now.

By the way, my 80 year old friends are very alert and can do alot for themselves.

My ego tries to get in the way because I want to do more...but I can't. I also was a very productive person with a photographic memory. Life and learning seemed easy. What did I do to deserve this?

I didn't do anything. It is what it is and there are still lots of people and life left to appreciate.

I'm tired now! My heart is with you and your husband. Patience and hope works.

 


Iris L.
Posted: Saturday, April 28, 2012 7:57 PM
Joined: 12/15/2011
Posts: 18513


Aviva, I found a discussion on the distinction between electroconvulsive therapy and deep brain stimulation on the alzheimer spouse message board.  Here is the link for you to read:  http://thealzheimerspouse.com/vanillaforum/comments.php?DiscussionID=441  

 

From your posts, it appears that your husband has been diagnosed as having early onset Alzheimer's disease complicated with depression.  He does not have pseudodementia.   

 

Your husband has not been prescribed any memory medications.  It is possible some of his depressive symptoms might lift with treatment with the memory medications.   

 

I think you should avoid any discussion of electroconvulsive treatment.  Your husband needs to be followed by a neurologist who regularly diagnoses and treats Alzheimer's disease.  The earlier treatment begins the better for the patient. 

 

You can discuss your husband's case with a Care Consultant at the 24 hr Helpline number. 

 

Iris L. 


Aviva
Posted: Saturday, April 28, 2012 8:18 PM
Joined: 4/26/2012
Posts: 10


Iris,

 

Thank you so much for your information.  I did read the posts about ECT and we are definately not going in that direction.  My husband was actually put on several alz medications from the psychiatrist and neurologist when he first saw them but they only had him on them for about 2 weeks and said if there was no difference, to stop them.  Then, when speaking to someone from the ALZ assoc. I was told he should be on the meds for at least 6 months before we know if they are working or not.  I tried to call the neurologist on Friday but he was gone for the day. I will call back on Monday and ask for him to be put back on the exelon patch unless there is something out there that you have heard may work better.  I know my mother was on aricept and it helped for a while and then stopped working.  We stopped going to the psychiatrist because he kept switching the meds around and my husband was up to 9 pills a day at one point.  The neurologist and psychiatrist both specialize in alz.  But the neurologist at the last appt said he wanted to see him in 6 months.  I will tell them I want to bring him back in when I call on Monday.

 

I really appreciate all of your input.  It's so good to know there are other people out there who understand what we're going thru.

 

Aviva

 

 


Iris L.
Posted: Saturday, April 28, 2012 8:58 PM
Joined: 12/15/2011
Posts: 18513


Aviva wrote:

 My husband was actually put on several alz medications from the psychiatrist and neurologist when he first saw them but they only had him on them for about 2 weeks and said if there was no difference, to stop them.  Then, when speaking to someone from the ALZ assoc. I was told he should be on the meds for at least 6 months before we know if they are working or not.   

 

 


Aviva, I never heard of doctors recommending the memory meds for only two weeks.   I'm amazed. 

 

Most use the memory medications until there are bad side effects or until the patient has advanced to the later stages.  The medications help to stabilize us patients so we can function better. 

 

Please keep in close contact with the members on the spouse/partner board and on the general caregiver board.  You will need much support.   

 

Iris L. 


Wendejoy
Posted: Sunday, April 29, 2012 12:48 PM
Joined: 4/28/2012
Posts: 5


My mother had alzheimers and now me.  This is my story:

I am new to alz connected and this message board.  I am 63 and was diagnosed with early onset of alzheimers.  I work a local community college and I am hoping I can retire in 2 or 3 years. I worked in a department with 10 ft professors and 9 part timers.  Crazy office, crazy boss.  Lucky for me I was transferred Jan. 2012 to a quite office with 1 boss  and I'm not so stressed.

I started dating a very nice widower  in Sept. 11 and he does notice there are lots of times I forget!  Some days are a struggle and others not so.  My son and his wife are there for me, as are my close friends.

Hoping to have some support.

by the way I have written on this page or another page (that is confusing enough) 2 times and never see my post. 

Thanks for listening


Geegee
Posted: Sunday, April 29, 2012 3:36 PM
Joined: 11/29/2011
Posts: 514


Aviva, you are new to the boards since I was on last.  Please let me welcome you.  I'm so sorry that you have such a hard road head of you as a care partner to you dear husband (DH).


I was diagnosed 2 yrs ago with Alzheimers and thank goodness I am on medication.  I have read all of the wonderful advice you received from Iris, Mimi, RebeccaJ (welcome newbie! , and others.


I definitely agree that he needs to be on meds for longer than the 2 wks. he has tried them.  I am on Exelon patch and Namenda.  it's good for your DH that you are contacting the Neurologist Monday for an appointment.  The doctor will probably start your husband on 1 of the 2 drugs that I am on.  


We welcome you any place on the message boards.  You have received some sound advice from those of us who have a diagnosis and reach out to others.  


However, you will receive excellent wisdom from peers that have gone through and are going through what you are facing now.  Please consider starting a new discussion some time in the Caregiver forum or Spouse forum.


Keep us posted.  Hang in there, I know how difficult and trying this is for both of you.



Geegee
Posted: Sunday, April 29, 2012 5:08 PM
Joined: 11/29/2011
Posts: 514


Wendejoy, 

Well, I saw your post and I want to welcome you to our online family.  You have come to a wonderful place to find caring support and information. 


 

  I'm so glad you found us, but I am sorry for your diagnosis.  I was also diagnosed at age 63.   


 

Are you seeing a neurologist or M.D. that specializes in Alzheimer's or memory disorders?  Are you currently on medication and if so, how is it working? 


 

You mentioned that you had posted 2 other times but didn't see your posts.  I will look for them.  Please start a new discussion to introduce yourself to everyone because your post may get lost under the one that Aviva started.  Or, you can start a new discussion and ask your peers a question. 


 

To do that, just go to the beginning of either the Under 65 Forum or I Have Alzheimer's and "Start a new discussion".  Enter a title and then drop to the box to ask your question or say something. 


 

We are most happy to have you!  It sounds like you have some support from friends and family which is so very important.  Learn all you can about our dreadful disease.  As you know, knowledge empowers us!  It's always a goal for me.   


 

The alz.org is loaded with information and resources to guide you.  Your local Alzheimer's Association chapter can meet and work with you one on one.  Welcome! 


Myriam
Posted: Sunday, April 29, 2012 9:00 PM
Joined: 12/6/2011
Posts: 3326


Welcome, Wendejoy! And sorry for what brings you here. I, too was diagnosed at 63. Mine is genetic, the presenilin 1 gene. Look forward to hearing more about you.
Wendejoy
Posted: Sunday, April 29, 2012 9:43 PM
Joined: 4/28/2012
Posts: 5


Hi GeeGee...

I see a neurologist in Williamsville.  I've had tests, mri and scan of blood flow in the brain and am on Arisept.  Started the meds in December.  I have good days and disheveled days, and am fortunate to work for a boss who does his own work and I do mine.  Nice setting for me since I came from a large office with too many professers (Hatfields and McCoys).  I am dating a professor and he does notice my forgetting some times and I worried about down the road...hopefully I have a slow process and meds continue to help.  I'm taking one day at a time.

Thanks for welcoming me.


Wendejoy
Posted: Sunday, April 29, 2012 9:56 PM
Joined: 4/28/2012
Posts: 5


Hi Mariam

 

My mother had alzheimers and now me. This is my story:

I am new to alz connected and this message board. I am 63 and was diagnosed with early onset of alzheimers. I work a local community college and I am hoping I can retire in 2 or 3 years. I worked in a department with 10 ft professors and 9 part timers. Crazy office, crazy boss. Lucky for me I was transferred Jan. 2012 to a quite office with 1 boss and I'm not so stressed.

I started dating a very nice widower in Sept. 11 and he does notice there are lots of times I forget! Some days are a struggle and others not so. My son and his wife are there for me, as are my close friends.

Hoping to have some support.  thanks for stopping by. 

Joyce


Be Strong 2
Posted: Sunday, April 29, 2012 10:32 PM
Joined: 12/14/2011
Posts: 1751


Mimi S. wrote:

Bob,

Just a comment and this is not aimed at you.

 

In various times of my life I've gone through crises. Well meaning folk have always quoted that phrase: God never gives us more then we can bear.

 

I hate it. I feel like screaming: I wish I weren't strong then.

 

What I have realized over time is the awareness of what I have been handed over time is nothing compared to what other folks have had to endure.

 

I have a grandson with multiple health problems. His mother echoes the same thought. As she sits in Children's Hospital, waiting her turn, a look around the room lets her know how minor her and his problems are compared with others in the room.

Mimi,

No offense taken.  From what you write you and your grandson's mother (DIL I presume) understand exactly where I am coming from.  How we bear up under stress can be a blessing to someone else, especially those who are in dire straits, worse off than us, as you would say.

God bless.

Bob  

Iris L.
Posted: Monday, April 30, 2012 2:11 AM
Joined: 12/15/2011
Posts: 18513


Welcome to the message boards, Wendyjoy.  I'm sorry for your diagnosis but I'm glad you're here, for you will find much support and guidance about what you are facing.  I'm 62 with a diagnosis of cognitive impairment, not otherwise specified.  I've been on Exelon patch and Namenda for three years.  I also try to follow Best Practices.  Several members are using aromatherapy as part of their treatment plan. 

 

So you're still working and you have a new beau?  Good for you!  Most of use aren't so fortunate.  Try to work as long as you can. 

 

As Geegee said, please feel free to begin your own thread so more members can learn about you.  Please read and post often. 

 

Iris L. 


Iris L.
Posted: Monday, April 30, 2012 2:18 AM
Joined: 12/15/2011
Posts: 18513


Mimi S. wrote:

 

In various times of my life I've gone through crises. Well meaning folk have always quoted that phrase: God never gives us more then we can bear.

 

I hate it. I feel like screaming: I wish I weren't strong then.

 


I never cared for that phrase, either.  I don't believe it is Scriptural.  I do know that when we are weak we can call on God's strength.  This is a promise from God. 

 

Iris L. 


Lisa428
Posted: Monday, April 30, 2012 5:06 PM
Joined: 12/5/2011
Posts: 795


Hi and Welcome to all the newbies,

 

Seems ilke you all have been getting some really good advice from some wonderful, caring people.

 

I just wanted to introduce myself.  My name is Lisa.  I was diagnosed with EOAD @ 53.  I just turned 58 on April 28th!!

 

I am on AD meds and antidepressent.  Sorry for my misspelling, I am loosing my ability to spell so please bear with me.

 

I just wanted to say Hello.  I am happy you all have joined us here on the AD Message Boards.  There are a lot of wonderful, helpful people here.

 

We do have a toll free 24/7 Helpline you can call.  1-800-272-3900.

 

Peace and Hope,

Lisa


Iris L.
Posted: Monday, April 30, 2012 11:15 PM
Joined: 12/15/2011
Posts: 18513


Happy Birthday to you,  

 

Happy Birthday to you,  

 

Happy Birthday dear Lisa, 

 

Happy 58th Birthday to you! 

 

And many more! 

 

 

 

Iris L. 


Mimi S.
Posted: Tuesday, May 1, 2012 8:36 AM
Joined: 11/29/2011
Posts: 7027


Iris L. wrote:

Happy Birthday to you,  

 

Happy Birthday to you,  

 

Happy Birthday dear Lisa, 

 

Happy 58th Birthday to you! 

 

And many more! 

 

 

 

Iris L. 


From me too!  Hope you did something special!