Home Safety Checklist
RSS Feed Print
Early Onset
whitehorse1914
Posted: Monday, November 24, 2014 7:43 PM
Joined: 6/26/2014
Posts: 8


I am new to these boards and discussions. I was diagnoised with Alz  early onset almost 2 yrs ago, at age 58. Started on Airicept. The symptoms were happening tho, 5 yrs prior to diagnoisis. Have also been on Namenda for about 45 days...not sure if I like it. Sometimes I get really scared of what I see happening. Would like to join this discussion to better understand it and coping stratagies thru others who are goin thru.

Thank you


Iris L.
Posted: Monday, November 24, 2014 11:01 PM
Joined: 12/15/2011
Posts: 18519


Welcome to our online support group, whitehorse.  Feel free to post on this board and on the Younger Onset board, which is more active.  We're all dealing with the challenges. 


I have been on Exelon patch and Namenda for 5 1/2 years and they are working for me to improve memory and speech.  


Please take a look at the Best Practices thread on the Younger Onset board.  These lifestyle habits also help with functioning and can prolong the early stages.

Please come back and post whenever you want.

Iris L.


Mimi S.
Posted: Tuesday, November 25, 2014 9:27 AM
Joined: 11/29/2011
Posts: 7027


Hi Whitehorse. Welcome to our world.


it's difficult to find the thread on Best practices that Iris mentioned. Several of us on the Boards attribute our stay in the Early Stages to this. This is also much research that supports each of the practices. There is some research that attributes a multiplying power to the use of more than one. 


1. Take meds as directed.


2. Strenuous, as possible, physical exercise. The point is to get one's heart beating at a faster than normal rate for a time.


3. Mediterranean Diet. Search on internet. No smoking and a little red wine is fine. I also take Omega 3 and antioxidants. Some do aromatherapy. If you are meat and potatoes, change a bit at a time.


4. Strenuous and varied cognitive activities. Learn a new instrument or language. Yes, we can still learn in early stage, but it takes much longer. Sort those photos in your attic or on your computer. Put them in some kind of order. Tell as much as you can remember about each photo. Even brushing your teeth with your non-dominant hand can help.


5. Maintain or increase socialization. We need to interact with  others but large, noisy crowds are usually not well tolerated.


Did you take a neuro-psych? Did you get a report? If so, what were your strengths and weaknesses? Work on your strengths and figure out how to compensate for your weaknesses.


Do share with s the things that are frightening you. Maybe we can help.




whitehorse1914
Posted: Tuesday, November 25, 2014 6:14 PM
Joined: 6/26/2014
Posts: 8


Thank you for your reply. I have been on Airicept since diagnosis 2 yrs ago My cognitition skills continued to deteriorate,so the Neuro recomended the Namenda 7 mg. The Namenda causes me to not want to do anything but sit on the couch. It's terrible. Tomorrow I'm going to stop it again. I have tried it 3 different times, and each time it does the same thing to me...I would rather deal with the memory loss than to have no drive, no ambition.

 

As far as physcial exercise, I take care daily of 2 (soon to be 3) horses and my Donkey whom I adore! The winter requires alot of work because the horses are inside alot more because of bad weather which means cleaning stalls 2-3 x a day if they stay in all day, keeping heated water buckets fresh in each stall, hay 2-3 x a day outside and blankets changed depending on the temperature...if its warm 45 degrees or higher blankets come off for the day and back on at night. Dumping poop in a dumpster, checking fences, and all that farm work requires. Then between me and my daughter (41 yrs old) we have 3 dogs who have to be taken out several times a day rain or shine, 2 indoor cats...litter trays kept clean......so I get PLENTY of exercise and I can't be laying up on a couch on Namenda with all this to do everyday!

 

I cannot do math of anykind, can't do more than 1 thing at a time or I get confused,  have a hard time staying in a conversation very long, my focus on everything (EXCEPT the horses and animals) lasts a nano second, but I am making it. It will be so good for me to interact with others here who understand me. I will continue to post about my other symptoms as I get more comfortable here.

 

Thank you all for being here for me, I surely need you!

 


whitehorse1914
Posted: Tuesday, November 25, 2014 6:29 PM
Joined: 6/26/2014
Posts: 8


Some of the of the things that are hard to deal with is the whole concept of this Dementia. I have always been a very strong independent woman. That is changing so fast! My 41 yr old daughter (who is a Intensive Care Cardiac RN) has taken over alot of things I used to do on my own which although I'm grateful I have her, I'm loosing my independence in so many areas....that is sooooooooooo sad to me...I feel like i'm greieving my loss and yet angry as hell!

 

I can't remember to take my medicine so she bought me a weekly pill reminder, but sometimes I forget to take them! AUGHHH

 

I really wish my daughter could talk to somebody to help her better understand how I feel. I don't mean to forget the water on the stove, or leave the hose on outside in summer, I truly forget. Then I feel terrible I burnt a pan or two or leave the hose on in the horses water trough and it runs over.

 

I'm scared often but feel like I'm alone, so I'm glad to have this site to help me understand myself <3

 


Mimi S.
Posted: Tuesday, November 25, 2014 7:08 PM
Joined: 11/29/2011
Posts: 7027


We understand. We are so glad you found us.

 

Do steer your daughter to our boards. If she goes to alz.org there is much she can learn about the disease. Do have her also check at her library.

 

Do you want her to know your identity? If she'll connect you with the name you chose and you want to remain private, change your avatar. Or, reading what you wrote might be a good way for her to realize what you are feeling. And feeling that way is OK. And she needs to know what you're feeling.

 

Do speak with your doctor about your Namenda. I don't take Namenda but hopefully those who are taking it will have some insight on how they react to it.

The meds are important, so you and your daughter have to figure out another method. How many times a day do you take meds? Is it possible for her to call you? Have her check the Alzheimer's store. There are other pill holders that will also work as reminders.   Do you have a friend who would call and remind you? Big signs with reminder of time?  What have others used?

 

I think what's happening is that your short term memory is kaput. Those you are speaking with should understand this. Then they won't get upset when you don't remember something they just told you. 

 

You can find out about your local chapter by calling the help line: 1-800-272-3900. Ask how to get in touch with your chapter. Ask your local chapter if there is any support group for yourself. Some states also have phone support groups for those of us with the disease and our care partners. How about support groups for your daughter.

 

Another thing you and your daughter must discuss is plan B. With all those animals, can you get help so the cooking is taken care of?  How many burned pots have there been?

 

And someone else might help  check that the water is turned off. You need to continue doing what you are able to. 

 

The big question that those of us who live alone is: How will we know when we are no longer safe alone?


whitehorse1914
Posted: Tuesday, November 25, 2014 7:13 PM
Joined: 6/26/2014
Posts: 8


Is agitation a part of this disease? It seems I can get angry quicker than I ever have.

Is it part of early stage to:

 

... like being alone? Yet want to sometimes want to be with selected people?

 

.... in early stage to to not be able to stay in a phone or face to face conversation for long periods of time?

 

...to battle depression?

 

....why does eyesight get worse?

 

......to not care about personal hygine such as washing your hair or taking a shower?

 

Thank you for answering my questions!

 

 

...

 

 


Iris L.
Posted: Tuesday, November 25, 2014 7:49 PM
Joined: 12/15/2011
Posts: 18519


whitehorse1914 wrote:

 

 

I really wish my daughter could talk to somebody to help her better understand how I feel. I don't mean to forget the water on the stove, or leave the hose on outside in summer, I truly forget. Then I feel terrible I burnt a pan or two or leave the hose on in the horses water trough and it runs over. 

 

 

My first interaction on the board was having wonderful care partner members advise me to stop using the stove. I too had burned pots and having the smoke alarm ring.  I had an instance of letting the bathtub water run for over an hour, soaking the hallway and bedroom carpet.  

 
At the time, I did stop using the stove for a long while.  After a few years on Exelon patch and Namenda, I felt that I was ready to challenge myself with use of the stove again.  I do use the stove, but only if I am standing right there.  Even now, if I move away from the kitchen, I forget all about the stove.  So I set up a timer if I have to go to another room momentarily, but basically I am never far from the stove.  It's just too risky.  

 
Many patients with dementia have anosognosia, which means they are unaware of just how bad their memories are.  We don't have anosogognosia, so we have to act on our awareness and take steps to live safely.  We fear losing our independence.  Having repeated unnecessary accidents will ensure that arbitrary limits will be enforced by others.   

 
We can voluntarily set our own limits.  That's what I do.  I set limits, in other words guidelines, for myself in order to ensure my independence.  I don't have anyone to help me.  I must be extra diligent for my own sake. 

 
Iris L.
 

Myriam
Posted: Wednesday, November 26, 2014 12:09 AM
Joined: 12/6/2011
Posts: 3326


So great you have joined us whitehorse1914. Many of us became depressed when we learned of our diagnosis. Depression is very common for those of us whom have Alzheimer's or other dementia, especially during the early and middle stages. Treatment is available and can make a significant difference. Do you have a doctor that you talk to about what you are experiencing? Ask her or him about medication to help you with depression.  

 

Here's a link to information about Alzheimer's and depression:  http://www.alz.org/care/alzheimers-dementia-depression.asp#ixzz3K9TPCfdw 


Lisa428
Posted: Wednesday, November 26, 2014 12:16 AM
Joined: 12/5/2011
Posts: 795


Whitehorse,

 

Welcome to the Alz message Boards.  I'm sorry to hear of your diagnosis but I am glad you've found us

  .

I have EOAD/Younger-Onset AD.  I do use an Exelon patch and Namenda.  They both seem to help me.  In the beginning I did feel rather drugged but as my body got use to the medicines so did I.

 

As for your emotions, they are normal!

 

Fear, anger, frustration are all normal.  You life has been altered.  You are loosing thoughts, emotions, speech and it is becoming difficult to communicate. 

 

Others don't understand your confusion, fear and anger.  Neither to you.

 

It takes a while to get your new life is some kind of understandable order.

 

Depression is a bear.  That may be why your not getting out of bed.

 

Sadness is also very real.  You are dealing with great losses in your life.  It is difficult for others to understand.

 

Good Luck.  Please, keep us posted.

 

Peace and Hope,

Lisa

 

 

 

 


Paul Hornback
Posted: Monday, December 1, 2014 1:13 PM
Joined: 8/9/2013
Posts: 584


WhiteHorse, thanks for joining the boards. Sorry about your diagnosis but like so many people have already expressed, their is still hope for find ways to cope. I agree with what people have suggested already.

 

I use a daily checklist that helps me remember to do all the critical things I need to do to be successfully independent each day. Without my list, I am lost of my foggy days.

 

I, like Iris, still use the stove a little bit but only if I stay right in front of it while cooking. I can't leave it or I forget I'm cooking something. I use the mircrowave much more than I do the stove because I can set it and walk away.

 

I'm on the Excelon patch, Namenda, and a prescription medical food called Axona. these have all been lifesavers for me. I'm not sure I'd still be somewhat independent without these medications and following the best practices.

 

Hope you can stay connected with us on the boards.

 

God bless, Paul


Iris L.
Posted: Monday, December 1, 2014 3:30 PM
Joined: 12/15/2011
Posts: 18519


Paul Hornback wrote:

 I use the mircrowave much more than I do the stove because I can set it and walk away.

 


I stand right by the microwave because I had a fire in my microwave.  A paper towel caught fire.  Fortunately, I was standing right there, so I could open the door and put it out.  I'm afraid to walk away now.  Almost everything I microwave is for less than 3 minutes, so it's not a hardship. 

 

I'm extra cautious about safety because I feel I am on the cusp of losing my independence, and I don't want any bad incidents to tip the balance. 

 

Iris L. 


llee08032
Posted: Thursday, December 4, 2014 5:24 AM
Joined: 5/20/2014
Posts: 4408


Is agitation a part of this disease? It seems I can get angry quicker than I ever have.

Is it part of early stage to:

 

... like being alone? Yet want to sometimes want to be with selected people?

 

.... in early stage to to not be able to stay in a phone or face to face conversation for long periods of time?

 

...to battle depression?

 

....why does eyesight get worse?

 

......to not care about personal hygine such as washing your hair or taking a shower?

 

Thank you for answering my questions!

Whitehorse,

I would have to answer yes to all your questions. I struggle with the same issues.


Mimi S.
Posted: Thursday, December 4, 2014 8:31 AM
Joined: 11/29/2011
Posts: 7027


Whitehorse,

 

Please call or help line: 1-800-272-3900 and have a chat about all your concerns. 

 

Also ask if there is either or both: 1. support group in your area or

 

2. phone support group for those in early stage within your chapter


Iris L.
Posted: Thursday, December 4, 2014 8:50 AM
Joined: 12/15/2011
Posts: 18519


whitehorse1914 wrote:

 

I can't remember to take my medicine so she bought me a weekly pill reminder, but sometimes I forget to take them! AUGHHH

 

 


Whitehorse, we have to learn accommodations to help maintain our independence.  Routines and consistency help us.  Write down your morning routine and post it on your refrigerator or other place where you will see it.  I posted my routine on the inside of the kitchen cabinet where I keep my medications.   

 

Also, you can pair your medication-taking with another activity.  I have two medications that I take first thing in the morning with water, when I enter the kitchen.  I, then heat water in the microwave for a cup of tea.  While the tea water is heating, I feed my cats.  I then drink my tea with two more medications.  So, first thing in the morning I take 4 medications and feed the cats.   

 

While I'm drinking the tea, I read the newspaper.  That's another task I can tick off my daily list.

Caring for animals will help you.  You need to function yourself so you can care for them.  Make whatever accommodations you need to be able to care for those precious animals!  It may be necessary to ask for help for some tasks, but so be it.
 

 

We want to stay independent.  Yes, we may have to give up some tasks or activities.  But we can still remain independent for a long time.  Learn what is necessary and do it.  It can work.

Iris L. 


Iris L.
Posted: Thursday, December 4, 2014 9:12 AM
Joined: 12/15/2011
Posts: 18519


 

At one time during this illness I fell into a deep depression.  All I could think of was that I was not going to live for much longer.  After much heartbreak, I came to the decision that I was not going down without a fight!  I was going to fight for my life and my independence!   

 

That was four years ago, and I'm still independent!  Hallelujah!  It's not easy, but it's doable.  I must make accommodations.  But I'm willing to make them.  In all lives, we must make accommodations.   

 

No one knows how much time we have.  I'm determined to make the most of my time while I can.  A diagnosis of dementia or cognitive impairment is not the end.  There is still a lot of life left ahead of us! 

 

Please take up of all of your resources to encourage yourself.  Draw on our fellow members here on the message board for support.  Call on the Helpline.  There is help available.  You are not alone, whitehorse!

Iris L.
 

 


 
× Close Menu