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young nana
Posted: Monday, October 21, 2013 4:56 PM
Joined: 10/21/2013
Posts: 4


I want to say thank you for a spot to listen, support and share.  I'm in the earliest stages called MCI.  I have great days and some not so great.  I was my father's caregiver and he died of AD six years ago.  His mother also died of AD.  My dad showed significant signs of early onset in his late fifties. My biggest challenge today, besides forgetting stuff is feeling like my emotions are harder to control.  Does anyone else deal with this?  I've been a consultant for years and I'm good and being calm but it seems to be getting harder.  Thanks for your help.
struggling
Posted: Monday, October 21, 2013 5:55 PM
Joined: 9/29/2012
Posts: 50


Hi young nana, and welcome.  

Not sure what to say here..... I was diagnosed with MCI a little over a year ago.  I'm still pretty much me, although yes, I am forgetful.   It is thought that y mother died of Alzheimer's, however she was 93 at the time.  She had been incapacitated for quite some time, was very difficult to care for, and my brother and I shared the burden. (two other siblings were not as engaged)

I don't want to become the person she was!

Getting outside and walking, biking, etc are very good activities for folks like us.  Also having  someone you can talk to who understands your disease.

My moods go up and down, and oddly enough, I am feeling and acting better that I did when I was diagnosed.  In the beginning I was given the Exelon patch to treat my disease.  It did not seem to help, and I stopped it with no apparent changes, good or bad.

I eat gobs of fruit and veg, lentils, and small amounts of meat such as chicken and pork. I get outside every day, rain (I live in Portland, OR, land of rain)

I think that I am beginning to slide down the slippery slope, but thankfully it is still pretty slow.

One of the things that bothers me the most is that I seem to have lost most of my capability to work with numbers.  This drives me nuts!  I was a nurse for quite a few years, rose through the ranks to an executive position, and now I can hardly add and subtract!

What's your story?


young nana
Posted: Monday, October 21, 2013 6:04 PM
Joined: 10/21/2013
Posts: 4


Thanks for writing.  I just updated my profile with most of my story there.  I need a lot more sleep than I used to and find it really hard to manage my time.  On some levels its been good for me to simply be honest about my abilities.  I spend more time on the areas of my life that inspire me and less on things that are overwhelming. I have a hard time wrapping my head around my own schedule.  I'll read something and then simply not believe it!  It's hard to explain, but this past spring I left an entire class waiting for me because I didn't believe that I needed to be there.  It was in my schedule but I didn't seem to know what to do with the information.
Myriam
Posted: Monday, October 21, 2013 9:53 PM
Joined: 12/6/2011
Posts: 3326


I had a very odd conversation with a couple of friends of mine. This past July, I was in Washington D.C.  While there, I visited the Holocust Museum. It had a drammatic effect on me. Yesterday, I was conversing with my friends and telling them of my experience. Both had visited the museum in the past, but I argued with them that the Holocust Museum was only a few years old, so they must have visited another museum. One friend pulled out his smart phone and googled the museum. Sure enough, I was wrong.

Later last night, as I was getting ready to fall asleep, I recalled I had visited the museum several times in the last 22 years of it's existence. I could only chuckle! (Fortunately, my friends are loving and understanding and I appreciate them taking the time to convince me of the errors of my ways.)

 

 


Iris L.
Posted: Monday, October 21, 2013 10:41 PM
Joined: 12/15/2011
Posts: 18502


struggling wrote:

 

I seem to have lost most of my capability to work with numbers.


In 2003 I could not do my taxes.  I have always done my own taxes.  I had no idea what to do with the numbers. 

I think difficulty in dealing with numbers and financial matters is a significant sign of cognitive impairment.

Iris L.

young nana
Posted: Tuesday, October 22, 2013 6:16 AM
Joined: 10/21/2013
Posts: 4


Myriam, it's weird to wonder about your own experiences.  I used to be the one who could tell you details about interactions but now I swear I hear things that no one else believes is true.  It's been hard to give up being a peer when it comes to information.  That's for sure!
Mimi S.
Posted: Tuesday, October 22, 2013 9:30 AM
Joined: 11/29/2011
Posts: 7027


Hi Young Nana,

Welcome to our World. You have already found others like yourself in this place.

I assume you have done your homework and have read about MCI. 

You do know that there is a possibility that it will not progress further. However, with your history it's best to prepare for the worst.

It sounds as though you are already doing great with what we call The Best Practices. For many of us with AD, it seems to have slowed down the progression of the disease to a crawl.

1. If prescribed, take meds.

2. Strenuous (as possible) physical exercise. goal is to get the heart to up the rate and sustain it for a period. New research says tat such exercise actually build new brain cells. 

3. Vigorous cognitive exercise. A variety is best.

4. Mediterranean diet. Read more, but what you wrote sounds good.

5. Maintain or increase your interaction with other people. Most of us find that small groups are best.

From local resources, below, do contact your local Alz. chapter. Call during normal business hours. 


Do stay with us. We can help each other.


Paul Hornback
Posted: Tuesday, October 22, 2013 10:38 AM
Joined: 8/9/2013
Posts: 584


Young Nana, so glad you've joined the message boards and are talking about all that is going on in your life. There is a wealth of information here from folks who have lived through all you are experiencing. It took me years before I joined and now I am so glad I did.

The advice about taking meds, getting good strenuous physical exercise, staying mentally active, eating a Mediterranean diet, and remaining socially engaged is crucial to your continued health and well being as you deal with MCI and what it might develop into. My doctor advised me about this almost 4 years ago after he diagnosed me with EOAD and I've been following his advice ever since. It has made a world of difference especially in my attitude about my situation. It makes me feel like I'm doing something for myself in my fight against Alzheimer's.

Keep doing all you can and stay in touch with others on the message boards when you have questions or just need to vent. I'm sure everyone will tell you how important this is for your emotional and spiritual health.

God Bless, Paul


alz+
Posted: Tuesday, October 22, 2013 10:45 AM
Joined: 9/12/2013
Posts: 3608


Young Nana, your story really touched my heart. I took care of my Dad while he went through the Alzheimer's portal, was with him the last 8 nights of hospice and held his hand as he died.

Lately I am feeling more symptoms. Money and numbers were troubling for a couple years before diagnosis.

Now I forget things that shock me, like my step son's MS, forgot he had it!

I wake up crying some times, most days go by pretty easily, I am home alone as my husband works 6 days a week. I have a dog who is my basic support system. She senses when I am going off too far into a zone, she has helped me home from walks more than once.

I read a book called Learning To Speak Alzheimer's which gave me a big boost after diagnosis last summer, and I got a counselor to deal with people doubting the diagnosis and the Chill Factor from some friends and family.

This week I am ready to deal with the fear of what seems inevitable.

However, I feel some days as if there will be a major breakthrough, that the future is not written in stone.

I could not remember what I had read 2 sentences on before I began Aricept. now I read a book a week. Used to be a novelist and massage therapist. What to do with old manuscripts, all the journals and poetry? I love photography and yesterday forgot how to use camera, got it back but it was a shock. Then at pharmacy to pick up meds, turned to leave and could not walk! Pharmacist asked if I forgot something. I said "Yes, how to move forward." I carefully placed one foot in front of me and got momentum going and drove myself home (very small town, empty roads). Cooking means burns and cuts and forgotten ingredients. I feel for where you are emotionally with the diagnosis.


younghope1
Posted: Tuesday, October 22, 2013 1:31 PM
Joined: 12/5/2011
Posts: 127


Young Nana, I just read your profile and thanks for sharing and finding us. I hope we can a good support system for you. It sounds like you are still keeping your brain active and that is very important. I wish you all the best with your home business as I know how important that is.

 

Tracy


Iris L.
Posted: Tuesday, October 22, 2013 1:46 PM
Joined: 12/15/2011
Posts: 18502


alz+ wrote:

 Cooking means burns and cuts and forgotten ingredients.


I had to stop using the stove for a long time until I became stabilized on the Exelon patch and Namenda.  Now I can cook cautiously and briefly on the stove.

Iris L.

Iris L.
Posted: Tuesday, October 22, 2013 1:50 PM
Joined: 12/15/2011
Posts: 18502


Paul Hornback wrote:

 It makes me feel like I'm doing something for myself in my fight against Alzheimer's.

 

 

I truly believe that Alzheimer's disease will be a different disease for people who are diagnosed and treated early.  This is my personal belief.  We can be proactive and strengthen the positives and limit the negatives.

Iris L.


Paul Hornback
Posted: Tuesday, October 22, 2013 3:02 PM
Joined: 8/9/2013
Posts: 584


I agree with Iris with all my heart. If people are diagnosed early, the disease can be handled so much differently than if they wait until someone else HAS to take them to the doctor.

We can all highlight the positives and limit the negatives about living with this disease. There truly are so many things we can all still do even though some things may be limited. I can still use the microwave, I can make coffee with my Keurig, I can use the TV remote, I can use and type on the computer, I can get outdoors and enjoy each day, I can read and write, I function well with the use of my daily schedule, and I'm mostly independent with a little bit of help from my wife (reminders and notes). All this is possible because of an early diagnosis and getting on the right medications.

 

Nana, you are in the very early stages and still have loads of life ahead. There is so much you can still do even though you have trouble in some areas. Stay positive, keep up with your doctor appts, let the doctor know of any changes in your condition (I kept a journal of all the changes I noticed for 3 months until we began all the real testing), keep physically, mentally and socially active, and take any medications they prescribe. You have the wonderful support of the folks on this message board to encourage you. You will be in my prayers as well!

Hang in there and God Bless, Paul


alz+
Posted: Wednesday, October 23, 2013 6:31 AM
Joined: 9/12/2013
Posts: 3608


Paul Hornback wrote:

I agree with Iris with all my heart. If people are diagnosed early, the disease can be handled so much differently than if they wait until someone else HAS to take them to the doctor.

...keep physically, mentally and socially active, and take any medications they prescribe. You have the wonderful support of the folks on this message board to encourage you. You will be in my prayers as well!

Hang in there and God Bless, Paul

Paul, I am so glad you are writing on the forums!

People who seem especially comfortable with ALZ symptoms appear to have been  diagnosed early, take medications, are active in ways that suit them, and seem to have loving support.

They use self help aids and don't appear to have other major health problems. Using that combination feels good to me. I keep in mind these people are also still functioning well enough to figure out how this forum works, post, and so on.

I have found the book Learning To Speak Alzheimer's very helpful - I gave it to my husband and we both learned so much on how to calm fears and comfort losses so quickly. I am also an advocate for patients learning outside the box treatments and methods for improving their mental status. For myself, medical marijuana has been a wonderful help for relaxation, shifting out of a negative state, and sleep. Also learning Total Immersion Swimming via a dvd and getting massages. more focus on my physical self the better all around.



Paul Hornback
Posted: Wednesday, October 23, 2013 11:20 AM
Joined: 8/9/2013
Posts: 584


Alz+, thanks for the encouraging word. I'm going to order the book Learning to Speak Alz so my wife and I can read it. My brother in law has dementia as well (not sure what kind) and he is having a rough time living with his brother. Maybe they could benefit as well.

I am very open to other treatments as well once I've done some research on them. I don't have much trouble relaxing so might not be interested in the cannibus treatment. My wife thinks I might relax too much!!!

God Bless, Paul


Iris L.
Posted: Wednesday, October 23, 2013 12:00 PM
Joined: 12/15/2011
Posts: 18502


I think coming to a "new normal" in the realm of communication is vital for early stage patients and family members. 

We CAN still communicate and express our feelings and desires, even though the way we communicate may have changed. 

We need to be strong and persistent.  We can communicate!


Iris L.


Lonna
Posted: Wednesday, October 23, 2013 2:51 PM
Joined: 5/12/2013
Posts: 75


This thread is so inspiring! Get out there in your communities and show people ALZ is NOT a death sentence! My mom has EO dementia. I worry for myself, and you've convinced me that I WILL be keeping neuro tests "top of mind" in the years to come. And for the record: I was, am and will always be HORRIBLE at math. If that's a sign of MCI, then I already have it.
Iris L.
Posted: Wednesday, October 23, 2013 8:28 PM
Joined: 12/15/2011
Posts: 18502


Lonna wrote:
 And for the record: I was, am and will always be HORRIBLE at math. If that's a sign of MCI, then I already have it.  
Haha, Lonna.  What's important in MCI is a change in your cognition.  Look at something you are good at, and see if you or the people around you notice a difference.  If you were a good cook, do you notice that you can't cook from scratch anymore?  Have you forgotten your recipes?  This would be significant.

Iris L.

nomemo
Posted: Wednesday, October 23, 2013 9:38 PM
Joined: 3/21/2012
Posts: 439


i have frontotemporal dementia and i have to say that i'm experiencing almost everything that everyone has posted! 

 

today was a particularly stressful day for me.....i had my weekly cognitive therapy with the usual after-effects of FTD headache......came home and took ibuprofen and went upstairs to lie down in dark, quiet room.  HOWEVER, interrupted by heavy machinery directly outside my window.....digging up street and sidewalks to put in new sewer system in my town and individual homeowners have to schedule their own tap-ins.  a homeowner 2 houses down scheduled his for today and all i heard was the bang, bang, bang of the steamshovel on the sidewalk and the rumblings of the huge dumptruck!  i don't blame the homeowner....but couldn't have happened on a worse day.  needless to say....didn't get my rest and headache persisted.  it's now 10:27 p.m. EST and i can go to bed.  I fear they'll be back tomorrow. 

 

on another note, that has nothing to do with this thread, but, hey, i'm already here so......!  i went to my new PCP on Monday (my second visit)....all my bloodwork was good... I have some balance issues which my neurologist says are probably due to my FTD.  I did have balance therapy.   a year ago I fell down my steps.....as a result I have 3 tears in my rotator cuff and a small amount of fluid (according to MRI).  I had physical therapy. former PCP didn't recommend a surgeon.  however,  My new PCP feels I should see an orthopedic surgeon because it should be healed a lot more than it is and to not be surprised if he recommends surgery.  although I've not said this to anyone, I'm a little scared about that thought.  but I don't want to get ahead of myself.  I live alone and have little emotional support. 

 

thanks, all of you, for listening.

 

God bless all!