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Just diagnosed with early onset ALZ at the age of 48
Nie
Posted: Wednesday, May 30, 2012 9:38 PM
Joined: 5/30/2012
Posts: 66


Sorry.my message didn't seem to post.  I wanted to say Hi to all here.  I am on Donepezil after being diagnosed by Psychiatrist and psychologist with early onset AD.  

I tried talking with some of my family, but they seem to feel its not possible that I have this.  They say "we are all forgetful" and "Think positive or you can self fulfill the Drs expectations/diagnosis.  That leaves me feeling pretty frustrated and unsupported. 

I have not been tested/diagnosed by an AD specialist, and I wonder if I should do that.  Not sure if it matters too much since I'm on the meds now..

Any advice would be appreciated!


Myriam
Posted: Wednesday, May 30, 2012 9:55 PM
Joined: 12/6/2011
Posts: 3326


Hi, Nie. So glad you joined us. I see that your message did not come through. Are you using Firefox? It does not work on this site. Please try Internet Explorer or another browser. Would love to hear more about what you're going through.
Nie
Posted: Wednesday, May 30, 2012 10:04 PM
Joined: 5/30/2012
Posts: 66


Yes, I was on firefox!  Guess that was the issue
eaglemom
Posted: Wednesday, May 30, 2012 10:29 PM
Joined: 3/7/2012
Posts: 2356


I'm sorry when someone else "new" comes to the EOAD board.  It means there is another family going through this diease.

 

Personally, & I'm not a nurse, doc, etc - I would be tested by a neurologist. My DH is 54 - we've had every test available.  Also a neurologist my prescribe speech therapy or something else.  I personally feel that would be the way to go.

 

As for talking with family I would guess they are in denial. Its common.........my MIL says I did this to DH - how weird is that?  Anyway, read the information and ask questions.  eagle


Myriam
Posted: Wednesday, May 30, 2012 10:40 PM
Joined: 12/6/2011
Posts: 3326


So glad you were able to post! It's great to have you here.  I see you're in CA. I'm in WA.  Iris, who also posts on this board, is from CA, too.


What kind of testing did you receive from the psychiatrist and psychologist who diagnosed you?  Some AD specialists are psychiatrists. It's important that you find a neurologist or gerontologist who has a specialty in Alzheimer's/dementia.


For right now, I suggest you call the 24/7 Helpline at 1-800-272-3900. They will have great information for you, and if you want, put you in contact with the Alzheimer's Association chapter nearest to you. They may have an early onset/early stage support group you can join.


You're not alone. We are here for each other and look forward to hearing more from you.




elvisgirl01
Posted: Thursday, May 31, 2012 5:46 AM
Joined: 5/7/2012
Posts: 97


Welcome to the board.  But, I echo what eaglemom said about being sad to see someone else diagnosed with EOAD.  My husband is 61 and that is also his diagnosis.  His doctor is the Asst. Director of a Memory Disorders Clinic and she specializes in dementia.  I would suggest you find a Memory Disorders clinic for treatment.  The other advice for tests you should have are dead on.

 

My husband has had MRI's, MRA's, memory testing, and PET scans.

The PET scan compared with the MRI was the key to his diagnosis.

 

I would also suggest you educate yourself to everything Alzheimer's.  alz.org ha a wealth of information, and so many informative links you can go to.

 

A book I would recommend is:  The Alzheimer's Action Plan by Dr. P. Murali Doraiswamy and Lisa P. Gwyther, M.S.W.  These authors are from Duke University and the book can be purchased at Amazon (or other booksellers)

 

Some of the chapters are:

 

Part One:  Early and Accurate Diagnosis:  How to Get It and Why it Matters

 

Part Two:  State-of-the-Art Treatment

 

Part Three:  Yes, There is Life After Diagnosis

 

Part Four:  Why It's More Than Memory Loss

 

Part Five:  A Brain-Healthy Lifestyle

 

Part Six.  "Does Personality Change with Memory Loss?" and Other Frequently Asked Questions

 

Hope this helps.  Good luck.


Mimi S.
Posted: Thursday, May 31, 2012 7:11 AM
Joined: 11/29/2011
Posts: 7036


Just a PS to the last post. The Alzheimer's Action Plan is a wonderful book and your library can get it for you. It will give you the gold standard of diagnosis.

 

The book also discusses other dementias besides Alzheimer's. In some cases, Aricept is not the correct meds. Also blood work and brain scans help to rule out other causes of dementia. 

 

So yes, read the book and if it doesn't match what you went through do look elsewhere.

 

Also, please do have your relatives educate themselves about the disease before they say you don't have it.

 

The other thing is, if you have been diagnosed in the earliest stages of the disease, the ordinary person does not recognize this as dementia. That's why that typical  comment: oh we all forget. 


Nie
Posted: Thursday, May 31, 2012 11:09 AM
Joined: 5/30/2012
Posts: 66


Thank you for all the responses.  I will find out if my psychiatrist or psychologist have a specialty in AD.  I did see a Neurologist and have the MRI done. I have also had blood work done on various occasions.  I was borderline low on B-12 so they have had me on supplements for that for quite some time.   The MRI was inconclusive.  Just some areas of hyper-intensities and the left side of the brain being slightly smaller.  The Neuro guy sent me to the psychiatrist.  They have given me a few memory tests.  But not as extensive as I think some people have had.  

I will be sure to call the help line and continue reading here!  


Nie
Posted: Thursday, May 31, 2012 11:32 AM
Joined: 5/30/2012
Posts: 66


Also I will get that book!!
Iris L.
Posted: Thursday, May 31, 2012 4:36 PM
Joined: 12/15/2011
Posts: 16102


Nie wrote:

  I was borderline low on B-12 so they have had me on supplements for that for quite some time.  

 

 

Welcome to our online support group, Nie,  I'm sorry that you have received that diagnosis, though.  It is very important to undergo a thorough medical evauation because there are many causes of dementia, some of which are reversible if caught in time.  Low vitamin B12 can cause dementia. 

Many people over 50 develop an inability to absorb vitamin B12 from food or supplements, and must receive B12 injections for the remainder of their lives.  It is important to obtain follow-up blood tests to make sure the treatment is working.  Hopefully, dementia due to vitamin B12 deficiency can be reversed.

I realize that you are 48, not yet 50.  Have the doctors given you a reason why you are vitamin B12 deficient?  Do you eat a vegan diet?

Your family is having a hard time accepting this diagnosis.  How do YOU feel?  Do your memory lapses interfere with your life?   Dementia is more than just "senior moments." 

Please take advantage of the wonderful material that your local Alzheimer's Association can provide for you.  Also, the main web page, alz.org, has very good educational material for patients and for families.
 

My diagnosis is cognitive impairment not otherwise specified.  I've been having memory problems for over two decades, but I only began treatment with Exelon patch and Nameda three years ago.  I'm glad I met a neurologist and a geriatrician who prescribed for me, because the medications are helping me function better.

Have you noticed any improvement in your symptoms since being on the donepezil?

Please visit often and post whenever you have a question or a concern.  We suppport each other.

Iris L.
 


Nie
Posted: Thursday, May 31, 2012 10:08 PM
Joined: 5/30/2012
Posts: 66


Thanks Iris    They did not give me any opinion on why my b12 was low.  The rest of the blood work looked fine.  I'm not on a vegan diet.  

My memory lapses do impact my daily life quite a bit but.. it seems random too.  I no longer drive because nothing looks familiar, or if I think I know where I am..I'm wrong. I am having trouble at work due to not remembering meetings I have attended or doing some task twice without realizing I documented it somewhere else.  I work from home so I've got this big system of notes, reminders going off, notebooks, bulletin boards, chalk board, all to help me search for what I am suppose to be doing at work.  Up until recently I have been able to mostly " fake it".  But, its catching up with me now.  So many small things that are turning into this "big" thing.

I've left the car running, water running, laundry part done, cleaning supplies all over the place and filled bathtub only to discover it the next day and know it had to be me..I was alone.  I have apparently tried to pay for the same items at the store twice.  I'm glad my BF was with me.  I was really confused as to why they didn't want to take my payment. My ability to do simple math seems to be on its way out as well.  I used to write and read a lot, speed read almost.  Now I have to digest the words maybe a couple times. Its an effort. Its exhausting.  It's hard to explain but for me reading has always been like picturing the scenes happening in your mind. Almost as good as a movie!  But now, that isn't happening.  That kind of summarizes how I'm feeling overall now.  Sometimes I feel like my pages are blank, there are no scenes..things seem to be erased.  Its scary, I am embarrassed, angry and very frustrated.  I guess the positive thing here is that my "playing charades" skills are getting better.  "That thing, over there, you know, square, that you through to get out of here.."  Sheesh!

Yes, I do still have my sense of humor and expect it will carry me through most anything.  I explained to my boyfriend that it's like..sometimes you put 2 socks in the dryer and only one comes back out.  Things just "go" somewhere,    but we find a way to deal with it the best way we can  

The Donepezil I am taking, I can't really tell if it's helping or not.  Some days I think maybe...others not so much.  I now have another notebook where I am trying to track of what things are happening, what things I am told I do or don't do, so on.

I plan to stay positive as I can, stay laughing, take it day by day, and to remember that even if only one sock comes back out of the dryer, eventually they will match up with another stray sock and be worth something  

Thanks for listening.


Myriam
Posted: Friday, June 1, 2012 12:23 AM
Joined: 12/6/2011
Posts: 3326


In addition to donepezil, you should ask your doctor about adding Namenda. My doctor put me on both when I was first diagnosed in 2009 and I have managed to stay mostly in stage 2, although lately I've been dipping down to stage 3 every 5th or 7th day.  Aroma therapy has also helped me a lot. You can find many posts on aroma therapy on these boards including in the Clinical Trials board. 

I've also been using Axona, which is a medical food for which you need a prescription, but have decided to finish what I have left and just use coconut oil instead because I've gained 2 pounds each month since starting it (It's got lots of calories) and have some gastro-intestinal problems with it, too. However, I did start to notice a decline down to stage 3 when I reduced my consumption of Axona to only 2 or 3 times a week instead of on a daily basis. 

In addition to finding a physician who specializes in dementia, I would recommend finding an elder law attorney to prepare legal documents so that your wishes are carried out, including who will make medical and financial  decisions for you when you begin to have problems making them. 

Click below for more information, including making job decisions and planning for the future: 

Nie
Posted: Friday, June 1, 2012 12:37 AM
Joined: 5/30/2012
Posts: 66


Thank you Myriam.  

 

I will ask about the Namenda and am also working on trying to get a referral to a physician who specializes in dementia/Alz specialty.  The coconut oil is something I have been reading about here.  Sounds like something I should learn more about. 


I have been thinking about law attorney to prepare legal documents.  I know that's important.  I really appreciate your reply and the link too.





Mimi S.
Posted: Friday, June 1, 2012 8:17 AM
Joined: 11/29/2011
Posts: 7036


Hi Nye,

I wish we had useful archives. Perhaps someone can find the negative information that was posted a while ago about coconut oil. I'd like you to be aware of both sides of the discussion before you decide to try it.


Ron
Posted: Friday, June 1, 2012 9:57 AM
Joined: 12/5/2011
Posts: 17


Nie

I am so sorry you are having to go on this journey.

Your humor is going to be a temendous aid  in this process. In varing degrees, what you are experiencing is what we all deal with. People that have not been touch by AD often minimize its affects.(Maybe they just do not know how to respond?) I found in time it stopped hurting as much when they comment. As has been said get in touch with the Alzheimers Assiciation. I have found them to be an incredable resource.

If you can try to not focus on what you cannot do or what you do wrong, but enjoy what you can do and rejoice inthat. It is not easy to accept all these chances, but I have found the more I focus on them the less I see of what I can do and enjoy.

Be Blessed

Ron


bo_dance
Posted: Friday, June 1, 2012 10:49 AM
Joined: 6/1/2012
Posts: 9


Nie wrote:

Sorry.my message didn't seem to post.  I wanted to say Hi to all here.  I am on Donepezil after being diagnosed by Psychiatrist and psychologist with early onset AD.  

 

I tried talking with some of my family, but they seem to feel its not possible that I have this.  They say "we are all forgetful" and "Think positive or you can self fulfill the Drs expectations/diagnosis.  That leaves me feeling pretty frustrated and unsupported. 

 

I have not been tested/diagnosed by an AD specialist, and I wonder if I should do that.  Not sure if it matters too much since I'm on the meds now..

 

Any advice would be appreciated!


My experience is that after about a month taking the drug, I was able to remember things I once hadn't been able to, plus my thinking became clearer. So since I experienced these effects, I surmised that the diagnosis was correct. Furthermore I did go in for other tests like CT-scans and blood tests which showed no reasons for my problem such as tumors, hardening of arteries etc.  I don't think the extra expense of an AD specialist would help since they wouldn't be able to give you a definite yes you got it! like diagnosis.

 

It would be helpful to find understanding friends or relations. Our local Alzheimers association gives Alzheimers 101 classes that are helpful. It might be a good idea to take a loved one to one of these in your area.

 


Lisa428
Posted: Friday, June 1, 2012 11:23 AM
Joined: 12/5/2011
Posts: 795


Hi Nie,

 

Welcome to the alzconnected Message Boards.  I am sorry for what brings you here but I am glad you've found us.

 

You've been given some good advice.  I hope to will act on it.

 

I have EOAD.  I was diagnosed @ age 53.  I am now 58.  Doing OK.

 

Being diagnosd @48 must be even more difficult.  I am sorry.  I remember being so scared, angry, anxious, depressed and driven to learn as much as I could about EOAD.  I was a member of the Early Stage Advisory Group in the beginning.

 

I've been a PV for quite a while.  I like helping people and sharing my experiences.

 

I think you definitely need to find doctors who specialize in Memory Disorders/EOAD.

 

Getting the correct diagnosis along with the correct medications is imperative.

 

Please, try to educate yourself as well as your boyfriend AND  your Family.

 

It is very normal for families to suffer with denial.  They are afraid or shocked at the possibility of your EOAD dx.  Many people think  Alzheimer's is just an older person's disease.  The kind where you see people in the end stages of the disease in Nursing Homes no longer able to speak, think, eat etc.

 

Your sense of Humor will be a great asset to you during your journey.

 

You are correct to take on day at a time.  Avoid stress it's our Worst Enemy.

 

Please, if you haven't yet, call our toll free 24/7 Helpline @800-272-3900.

 

Again, welcome to OUR family.  You are NOT alone.  We are here.

 

Peace and Hope,

Lisa

 


Lisa428
Posted: Friday, June 1, 2012 11:30 AM
Joined: 12/5/2011
Posts: 795


Hi Bo_dance,

 

Welcome to the alzconnected Message Boards.

 

Thank you for sharing your experience.

 

Please, start a "New Thread" so people can reply to you too.

 

I am glad you are doing better with your meds. That is a good sign.

 

Please, share more with us on your New Thread.

 

Peace and Hope,

Lisa


Nie
Posted: Friday, June 1, 2012 12:46 PM
Joined: 5/30/2012
Posts: 66


Thanks Lisa!  (and bo-dance too!) I just contacted my PCP for a referral to a specialist for in depth ALZ psychological testing.  Hopefully it will go through "quickly".  I am continuing to educate myself on EOAD.  I will gradually pass on what I learn to my family. 

 

The ironic thing for me is, that I took care of many ALZ mid to end stage people in a previous profession.  So, I have a pretty good idea what those parts can include.  It's the early onset that is news to me.  

This forum is a god-send.  I'm so glad I found it.  <<hugs>>

 


younghope1
Posted: Saturday, June 2, 2012 8:38 AM
Joined: 12/5/2011
Posts: 127


Hi Nie and welcome! You might share with your family that I was diagnosed at only 38 years old with early onset dementia. My diagnosis is now Pick's disease which is a behavorial variant of dementia. Dementia has no consideration for age, race, creed, etc. It can happen to anyone at anytime. I am now 47 and have a soon to be 18 year old son, he is a senior in high school.

 

There is a alot of information that your local chapter could give to them, but I understand where you are coming from as I have 6 siblings and only one believes me even though they have seen my doctors documentation, they still deny it. That is one thing that you will learn with this disease, that denial is a VERY powerful weapon. Some of them may come around and some may never.

 

Feel free to write more to us. I use to be on here all the time, but find myself lost in time alot. I do come when I can. This is a wonderful community full of education, friendship and consern.

 

Sincerely, Tracy


Johanna C.
Posted: Saturday, June 2, 2012 10:10 AM
Joined: 12/9/2011
Posts: 10043


Dear Nie:  I am so glad you have found this wonderful place and want to extend a very warm welcome to you.  Being here will bring many new friends who understand completely what you are dealing with and who can offer advice based upon their experience.

 

You are a wonderfully proactive person and that will be helpful as you embark upon this journey.

 

It may be that your Neurologist wanted to send you to psych to rule out any possible psychological issues that may have been an issue rather than dementia.

 

It is good to have a Neurologist who routinely sees dementia patients as part of his/her practice.  This is crucial as the skill of your specialist is very important.

 

I can understand your family's denial about your condition.  Once you are settled on who your primary specialist will be, it may be a good idea to make an appointment to have a family meeting with the specialist and you so they can learn first hand what is going on.

 

I wanted to add some practical advice:

 

Very important:   It is extremely important, just as soon as possible, to get your legal paperwork in order.  You can consult an Elder Law Attorney if you wish, (they know the ins and outs of these dynamics well), or you can do it on your own.

 

First, think of two people you trust the most who will be available thru thick and thin.  Make one of them your primary and the other person your alternate on a Durable Power of Attorney for Healthcare and also on your Durable Power of Attorney for Finance.  Also get them on your bank accounts so they can write checks to pay bills should you become unable to do so.  This will save much grief in the future as things get more complex.

 

Also, fill out a HIPAA Waiver - there are federal laws covering patient confidentiality and they are strict.  No doctor or other healthcare provider including billing offices can speak of you with anyone unless you have signed such a waiver.  You can find one online or ask your insurance company to send you one.  This is critical for your well-being if you develop a situation where you need family assistance or input into your planning of care, etc.

 

Keep the original of all documents in a safe place and give the persons that you list on all documents a copy for their records.  Have them make multiple copies and have one placed in each doctor's office and any hospital you may be admitted to for any cause.

 

DPOA for Healthcare and one for Finance will come into play only if you are unable to conduct your own business or make your own healthcare decisions.  These are so important and must be done while you are considered sufficiently cognizant to make these documents.

 

Having someone on your checking and savings or other accounts will be hugely important for the future, but have it done now.  Without this being done, there can be extremely negative issues arise.  If you have a retirement account thru work, etc., be certain your DPOAs will know where all of the contact numbers are, etc.

 

I know this is a shock to you and your family and I wish it were not so.  That you have found this place is going to be very helpful for you and you will not be alone with your feelings or questions.

 

I wish you the very best and let us know how you are doing,

 

Johanna C.


Iris L.
Posted: Saturday, June 2, 2012 12:21 PM
Joined: 12/15/2011
Posts: 16102


Johanna C. wrote:

 

It may be that your Neurologist wanted to send you to psych to rule out any possible psychological issues that may have been an issue rather than dementia.

 

It is good to have a Neurologist who routinely sees dementia patients as part of his/her practice.  This is crucial as the skill of your specialist is very important.

 

 


Dear Nie, Johanna is right about having a psychiatrist rule out mental health issues.  The signs and symptoms of depression can mimic dementia, and when the depression is treated, the dementia symptoms may resolve. 

On the other hand, depression can complicate dementia.  Treating the depression may improve some of the dementia symptoms, so that the patient can function better.  But the dementia diagnosis remains. 

The six-hour neuropsychometric testing, along with the results of the blood tests and imaging studies and a review of the patient's mental health history, helps the psychiatrist in making the distinction.

It's not too late for the six-hour testing, even though you have already been prescribed Aricept.  Being diagnosed with dementia is serious, and you will need regular follow-up by your specialist to assess your progress and to monitor your medications.

Iris L.

Nie
Posted: Saturday, June 2, 2012 5:56 PM
Joined: 5/30/2012
Posts: 66


younghope1, Johanna C and IrisL

 

Thanks for the helpful replies.  I know I have quite a bit of legal paperwork to do.  I am making a list.  I think it's a priority along with the lengthy psychological testing.  

 

Luckily my boyfriend  (of over 20 years, we live together) has been very good about all this.  I think he will be able to help me get the legal stuff sorted.   As far getting my family into any appts with me so that begin to understand, no luck there.  They all live in different states.  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.  

 

"The signs and symptoms of depression can mimic dementia, and when the depression is treated, the dementia symptoms may resolve." 


 

 This was helpful for me to read.  Now I understand why the Dr put me on anti-depressants many months ago.   I didn't "feel depressed" but I was very frustrated and angry, lost.  The anti-depressant has not really changed that but I do feel a bit more able to cope, if that makes sense?   The psychologist told me at last appt that I don't seem depressed, so that's good.  

I'm also on anxiety meds as needed.  Lately I'm at 2x daily.  I don't think those really help much.  Music and incense help me as much!
I am downloading the  The Alzheimer's Action Plan book today. I'm sure it will be helpful. I need to keep educating myself. I think it will help. Yesterday a bunch of stuff I apparently did at work but don't recall came back to haunt me. My manager was relentless and on me all day until I ended up in tears. It was a terrible day and I could not use the "fake it til you make it method". Luckily I work from home so at least no one saw my "breakdown".

On the bright side, this morning I feel better, went for a drive with boyfriend. Window down, breezy, music up, sun shining. It felt good and I am grateful.

Too everyone who has been so kind and is replying to my thread, thank you. I know you too have issues going on. I am sending positive thoughts your way and wishing you a gentle day. ~

Myriam
Posted: Saturday, June 2, 2012 6:14 PM
Joined: 12/6/2011
Posts: 3326


Nie, I'm so impressed with you! Wish we could be neighbors.
Mimi S.
Posted: Saturday, June 2, 2012 7:17 PM
Joined: 11/29/2011
Posts: 7036


Hi Nie, I wish we had the capability to reply directly on a post with a different color. Makes it so easy.

 

Ideas. From your library get and read :The Alzheimer's Action Plan by Doraiswamy and Gwyther of Duke Univ. Great place if you're anywhere nearby.

 

If you and the BF have been together for 20 years, I assume he's the one you want on your POASs. If he's not good at math, time for a serious discussion. Is it lack of interest? Could be an inherent problem. A learning disability? Then look for a good friend.

 

Keep track of the odd things that are happening. Sometimes improvement is so slow or sparodic that it takes a while to notice.

 

Immediately begin Best Practices. 

You are young, so strenuous means that.

 

1. Strenuous physical exercise. This can rebuild brain cells. AD, takes them away. Try to stay even or get a bit ahead.

 

2. Strenuous mental activity. Are you still working? If so, where are the areas you are having problems? Can you get some help there?

 Learn a new musical instrument. 

Have you always wanted to learn more about something? Do it!

 

3. Mediterranean Diet. I also take Omega 3 and antioxidants. Little alcohol, although some red wine is great. No smoking.

4. Socialization. Possibly increase. But no way do you retreat and feel sorry for yourself. You make lemonade out of those lemons.

 

5. Take meds as prescribed. Personally, I'm not in favor of pressuring doctors for more meds. if you have chosen a doctor with experience with dementia, and hopefully early onset, then the doctor should know more about when is the best time to add medications than you do. 

 

Do make friends with your local Aliz. Assoc., even if they are at a distance. Find out how they can help you. Also find out how you can help them. 

You are doing great at keeping us in the loop and having a positive mental attitude. Most important.


Nie
Posted: Saturday, June 2, 2012 8:29 PM
Joined: 5/30/2012
Posts: 66


Myriam wrote:
Nie, I'm so impressed with you! Wish we could be neighbors. 

Oh I wish we were too!    I don't know my neighbors well.  The houses are not real close to each other.  I am in the high desert so my most often visitors are tumble weeds!  


Nie
Posted: Saturday, June 2, 2012 8:49 PM
Joined: 5/30/2012
Posts: 66


Mimi S. wrote:

Hi Nie, I wish we had the capability to reply directly on a post with a different color. Makes it so easy.

I will try replying in bold!


Ideas. From your library get and read :The Alzheimer's Action Plan by Doraiswamy and Gwyther of Duke Univ. Great place if you're anywhere nearby.

On the list!

 

If you and the BF have been together for 20 years, I assume he's the one you want on your POASs. If he's not good at math, time for a serious discussion. Is it lack of interest? Could be an inherent problem. A learning disability? Then look for a good friend.

I think he is in denial about how many bills we have.  I'm going to sit him down and see if he can start to take some over, reliably.  I have been messed up a bit on payments so I do need some help there.

 

Keep track of the odd things that are happening. Sometimes improvement is so slow or sparodic that it takes a while to notice.

Yes, I'm so busy noting all the bad stuff...it makes sense to  try to find any improvements too.  (New list!)

 

Immediately begin Best Practices.  

You are young, so strenuous means that.

 

1. Strenuous physical exercise. This can rebuild brain cells. AD, takes them away. Try to stay even or get a bit ahead.

This is tough but I do have a tread mill my dogs sleep on.  I guess I better kick them off and get on it.  

 

2. Strenuous mental activity. Are you still working? If so, where are the areas you are having problems? Can you get some help there?

 Learn a new musical instrument. 

Have you always wanted to learn more about something? Do it!

My work drains my brain before half the day is done.  It's hard to pass work off since the company keeps laying people off.  I am trying to fly low, and stay off the radar.  The job involves jumping from one task to another, troubleshooting, multi-tasking.  All of these are giving me trouble now.   I really have to try hard and it takes longer..I'm not ready to give in yet though. 

I have a few hobbies I'd like to pick up and learn about.  Painting, drawing or something like that.  I seem to have lost my poetry writing skills.  Finding the words is too hard.  It used to just flow out of me.   

 

3. Mediterranean Diet. I also take Omega 3 and antioxidants. Little alcohol, although some red wine is great. No smoking.


I don't eat a balanced diet. I HATE fish.  I know, bad.  I do not drink but have been a smoker for a long time.  Have cut back but cannot quit yet.      Time to adjust my eating habits.  

 

4. Socialization. Possibly increase. But no way do you retreat and feel sorry for yourself. You make lemonade out of those lemons.

My boyfriend drags me out of the house.  I'm not social much.  I keep thinking I will say or do something "stupid" or odd.  I guess I am hiding...

 

5. Take meds as prescribed. Personally, I'm not in favor of pressuring doctors for more meds. if you have chosen a doctor with experience with dementia, and hopefully early onset, then the doctor should know more about when is the best time to add medications than you do. 

Agreed!  

 

Do make friends with your local Aliz. Assoc., even if they are at a distance. Find out how they can help you. Also find out how you can help them. 

I will! 


You are doing great at keeping us in the loop and having a positive mental attitude. Most important.

Thank you!  I am really going to keep trying to be positive and I think this forum is going to be helping that!    



ccb
Posted: Saturday, June 2, 2012 10:55 PM
Joined: 5/3/2012
Posts: 31


Hello Nie, I have been keeping you with you post and responses. I can say welcome but have only been here a few weeks more than you. We do have a lot in common I can tell you that, after reading your situation. Just since my short time here on this site, I have learned so much and have started putting into practice some of the suggestions from many great members. 

I go in Monday for my review/feedback  from 8 hours of testing.  Please keep visiting the board because I know it helps me and others as to what your experiences are.

Thank you,

ccb


Mimi S.
Posted: Sunday, June 3, 2012 8:13 AM
Joined: 11/29/2011
Posts: 7036


CCB, Keep us in the loop tomorrow.

Nie, Your idea of copying and replying in bold is a great idea!

 

Re coconut oil, Here is the link I was looking for:

http://www.alzconnected.org/discussion.aspx?g=posts&t=2147485209

JAB used to be our scientific guru on these boards, so pay attention to how she responds to the coconut oil question.

And yes, if or if you are not diagnosed with some sort of dementia, something is certainly going on. I can't remember if you said you were given blood tests because that can catch some pseudo-dementias. 

 

And you do have a ways to go for the maximum benefit of the Best Practices. Work on  one improvement for a week. Since strenuous physical activity seems the most important, work on that first. Perhaps begin with 10 minutes on the tread mill twice a day. Keep track of how high and fast it is set. Can you feel your heart pumping? You want to aim to get that heart pumping and then work up to a minimum of 15 min. at a tie. Do it twice a day. Reward yourself with some nice red grapes.

 


Myriam
Posted: Sunday, June 3, 2012 11:28 AM
Joined: 12/6/2011
Posts: 3326


Mimi, thank you so much for the reminder. Forgot about JAB's warning. I'm a little unnerved, though. Got back on Axona yesterday and again saw improvement. It might be the ups and downs of AD, but it seems to be consistent. Guess I'll have to settle being a little chubby or step up the exercise. Sure wish JAB reconsiders and comes back to us.
Nie
Posted: Sunday, June 3, 2012 11:58 AM
Joined: 5/30/2012
Posts: 66


Hi Mimi

'' I can't remember if you said you were given blood tests because that can catch some pseudo-dementias. ''


Yes, I was given blood tests. The b12 was a bit low and I just remembered that the D3? was very low. I was on supplements for that too but I'm good now. Other than that nothing else seemed out of the ordinary.


I will take a look at the coconut oil thread, thanks.


CCB- Good luck on Monday with the test results. I'm sending positive thoughts your way! Thank you for the welcome


Lane Simonian
Posted: Sunday, June 3, 2012 12:28 PM
Joined: 12/12/2011
Posts: 4564


If I remember correctly, JAB did not like coconut oil for the treatment of Alzheimer's disease, but saw some possible value in Axona (I have not had a chance yet to look at the archives).  There is some clinical trial evidence that Axona may be useful in the treatment of Alzheimer's disease.    

 

http://alzheimersweekly.com/content/axona-mct-coconut-oil-differences-benefits 

 

Many essential oils also contain compounds that help treat Alzheimer's disease. 

 

http://onlinelibrary.wiley.com/doi/10.1111/j.1479-8301.2009.00299.x/full 

 

There are posts on the clinical trials section, the caregiver section, and the spouse or partner caregiver section that will provide more information on this possible treatment for Alzheimer's disease. 


Iris L.
Posted: Sunday, June 3, 2012 4:04 PM
Joined: 12/15/2011
Posts: 16102


Nie wrote:

  

"The signs and symptoms of depression can mimic dementia, and when the depression is treated, the dementia symptoms may resolve." 


 

 This was helpful for me to read.  Now I understand why the Dr put me on anti-depressants many months ago.   I didn't "feel depressed" but I was very frustrated and angry, lost.  The anti-depressant has not really changed that but I do feel a bit more able to cope, if that makes sense?   The psychologist told me at last appt that I don't seem depressed, so that's good.   

 

I'm also on anxiety meds as needed.  Lately I'm at 2x daily.  I don't think those really help much.  Music and incense help me as much!
 
 

 

Nie, when I was younger than you, age 37, I was diagnosed as having depression.  I resisted this diagnosis because I did not feel "depressed" or sad.  I was also diagnosed as having anxiety.  This diagnosis I could relate to, because I felt very anxious and stressed at that time of my life.  I also had difficulties at work.   It was also at this time that my memory loss began, and I had so much trouble functioning every day.  I didn't understand why people were "picking on me," but now I understand that they were reacting to my mental state at the time.

Even though I was prescribed antidepressants and took them for many years, I still resisted the diagnosis.  It is only recently since being on this board and doing a lot of reading that I have come to the understanding that sadness does not have to be present for a diagnosis of major depression.  Frustration, anxiety, irritability, poor concentration, memory loss, among others, are symptoms of major depression. 

I was working for a year and a half with a psychologist in weekly sessions and she really told me nothing to get me to understand what was going on with me.  I have begun working with a geriatric psychologist and I believe I am finally making some progress in the past couple of weeks.  In fact, due to these sessions, I decided to begin a new antidepressant.  Today is the eighth day.  It takes several weeks to get the full effect but I am already noting some improvement in my thinking and functioning.  I am finally feeling some smidgeon of hope that my life can turn around.

One of the university neurologists that I consulted three years ago said I had "pseudo-dementia" from depression.  I had never heard of pseudo-dementia, and according to my neurocognitive testing, I had significant deficits, not pseudo-deficits.  So I didn't believe her.  But I have come to learn that pseudo-dementia is real for some people.  It's very hard to determine how much is depression and how much is dementia.  I posted about this on my thread.  But I'm going to work with this psychologist and take the medications and do everything else (Best Practices) to optimize what I do have control over.

One of our members, Alan in Colorado, used to warn about stress.  He was a psychologist himself, with EOAD.  He said stress and anxiety will reduce our cognition by HALF!  So it is of utmost importance to relieve stress and anxiety in your life.  This you can work on, regardless of what diagnosis the psychiatrist gives you.

Please work closely with your psychologist and psychiatrist to improve your depression and anxiety as much as possible.  It will take time, but it will be worth the effort.

Iris L.


Iris L.
Posted: Sunday, June 3, 2012 5:12 PM
Joined: 12/15/2011
Posts: 16102


Nie wrote:


 

 I need to keep educating myself. I think it will help. Yesterday a bunch of stuff I apparently did at work but don't recall came back to haunt me. My manager was relentless and on me all day until I ended up in tears. It was a terrible day and I could not use the "fake it til you make it method". Luckily I work from home so at least no one saw my "breakdown".  
 

 
 ~  

Nie, I came across an article that deals with depression and how much to disclose to others, especially employers. (scroll down)
 

http://www.nami.org/Content/ContentGroups/Home4/Home_Page_Spotlights/Spotlight_1/Depression_The_First_48_Hours.htm 

It will help you to learn as much as you can about depression too.

Iris L.
 

  


Iris L.
Posted: Sunday, June 3, 2012 5:25 PM
Joined: 12/15/2011
Posts: 16102


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.