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Question About Progression
BillBRNC
Posted: Sunday, January 24, 2016 11:32 AM
Joined: 12/2/2015
Posts: 1018


I've written on this before to some bit, but I've had slow and steady progression over 6 years, slowly spreading out into many different areas other than just memory issues. During these 6 or more years, there have been times (not sure how long but probably weeks and maybe a month or two) where I've felt like I might have improved some. But every time I end up back on the steady and slow progression. Usually, during one of these time, some of my symptom areas seem to improve a little while others seem to get worse and others stay the same. But over the months and years, it has been a progressive and adding of new problems. I keep second guessing myself all the time. Lately, the memory and speech issues have been less large, while the mood/behavior/anxiety/anger/whatever seems a little worse. Actually, I'm not sure about any of what I'm saying, since I've not been able to remember my phone number of 16 years when asked different time in different setting. Simple addition has gotten to be a pain, but I can still do it, only I have to scratch things out and redo it. I'm just confused about all of this. Is this normal for Alz? I might have asked this before, but it just seems to be worrying me this week and mostly today. Just wondering.
Michael Ellenbogen
Posted: Sunday, January 24, 2016 11:44 AM
Joined: 11/30/2011
Posts: 4460


I have the same issues Bill. I am always thinking like that and seek the answer that I don’t know since after all how can we judge ourselves
Iris L.
Posted: Sunday, January 24, 2016 2:57 PM
Joined: 12/15/2011
Posts: 18513


Michael Ellenbogen wrote:
 how can we judge ourselves

 

The neurologists and researchers use various neurocognitive tests, such as the Montreal Cognitive Test, to monitor progress.  I was given a computer based test whose name I cannot recall now, but I had posted about it ~ July 2015. 


Use of Exelon patch and Namenda has enabled me to go from stage 4 to stage 3, based on the Alzheimer's Disease scale, although I have not been diagnosed with having AD.


I like to monitor myself by monitoring my performance with IADLs.  It's easy to do.


What are the Instrumental Activities of Daily Living (IADLs)? 

IADLs are actions that are important to being able to live independently but are not necessarily required activities on a daily basis. The instrumental activities are more subtle and can help more finely determine the level of assistance required by the elderly or disabled. The IADLs include:

1. Basic communication such as using a telephone

2. Transportation, either by driving, arranging rides or the ability to use public transportation

3. Meal preparation and the ability to safely use kitchen equipment

4. Shopping and the ability to make appropriate food and clothing purchase decisions

5. Housework such as doing laundry and cleaning dishes

6. Managing medications such as taking accurate dosages at appropriate times and managing re-fills

7. Managing personal finances, operating within a budget, writing checks and paying bills 

 
 

There are scales of IADLs to monitor status.

Iris L.


Michael Ellenbogen
Posted: Sunday, January 24, 2016 3:09 PM
Joined: 11/30/2011
Posts: 4460


Iris - when you are at stage 3 - 4 you can still figure out a lot. As you progress one starts to question themselves if you are still capable or not. I think I am at stage 5 .  Some if it is very real and some of it is lack of  self confidence any more in ones on self.  I am fortunate as I sound myself with very high level functioning people and they give me a report on my progress as I ask for their feedback.

 


Iris L.
Posted: Sunday, January 24, 2016 3:27 PM
Joined: 12/15/2011
Posts: 18513


 

 

Stage 5: Moderately Severe Decline

During the fifth stage of Alzheimer’s, patients begin to need help with many day to day activities. People in stage five of the disease may experience:

Significant confusion

Inability to recall simple details about themselves such as their own phone number

Difficulty dressing appropriately

On the other hand, patients in stage five maintain a modicum of functionality. They typically can still bathe and toilet independently. They also usually still know their family members and some detail about their personal histories, especially their childhood and youth.

 



Mimi says, don't focus on what you can't do.  Focus on what you CAN do.


How are you doing with the IADLs?


Are you following Best Practices?


Iris L.


The_Sun_Still_Rises
Posted: Sunday, January 24, 2016 3:28 PM
Joined: 7/24/2015
Posts: 3020


Hi Bill,

Without direct clinical evidence, or tell tale symptoms tha scream what it be, it can be hard they tell what you real have (Alz, Lewy Body, FTD).  Many doctors put some thing, change later.  Many, I come find, put Alz for Disabile.

Bett some, worse other...is one of 3 hallmarks Lewy Body.  Other 2, are hallucinations, an acting out dreams (sleep walk?).  You can have, an only have 1 of tell tale. 

I found for me...it seem like go down stairs...but onl if look big many year pic it.  Change...stay same, change, stay same.  I too had good bad times...bett some day worse other. 

What I used say this...it be like if all one know is on big circle...the things at edge circle start get hard...but can do.  Then get more hard, struggle do.  Then get more more hard, work to bring clear, struggle do.  Then so hard, you think...try other day do.  Then sudden, seem like can do all in circle, piece cake.  Onl to find late, that what had been struggle with now complete gone.  An this cycle repeats self over over. 

That is how it occur me...no sure same you.

Mine end up go more fast each time. 

You do seem have classic signs.

Yeah, real interest to be lose control emotions is no it?  Peop here have NO idea how hard some us work to keep under control.  I just went through months (losing ability speak, find words)...each time brain try struggle to find word, what came up was F word.  I was warn peop...soon when convo go no right way, an I can no find word...what going come out is - F F F F F!  I would have be mortify if happ...stead, this bad word happ...should have been more specific what ask for, lol.

Try hang in Bill, there be many mess-ges this week, bring home this be real happ to us.   Try be patient self, you body brain be do best can.  <3


apinkswan
Posted: Sunday, January 24, 2016 3:48 PM
Joined: 12/14/2015
Posts: 20


Great post, Bill.  I think many of us can relate to your thoughts and question.  I have so many other health issues and I'm always wondering from day to day which problem is due to which diagnosis.

I'm very lucky to have my husband with me so much of the time.  This helps the doctors, and ME, understand what I am like sometimes, even though I am fighting and know what is happening sometimes.  Of course, it's a lot for him to bear and I feel very bad about this.

Iris, thanks for the IADLs.  I copied it to a document and have it in a special place!

Sun, I have been using the F word and I am not one to even swear.  Can anyone else relate to swearing more than you used to?  I'm also experiencing slower and slurred speech more now.  It's really not new, just more often.

There I go rambling!  Love and hugs to all!

Pink


BillBRNC
Posted: Monday, January 25, 2016 7:27 AM
Joined: 12/2/2015
Posts: 1018


Thanks to all. I guess I am looking for simple and solid answers, where none are to be had for this. I've always been a realist. Give me the facts, and I'll make ice cream out of $hi!. I'm a different person now, so I just have to live with uncertainty and fear of what I don't know. I do know the sun is out this morning, so that nice. Oh, yeah, my wife tells me that I'm too loud, rude, and bad mouthed in public. I'm working hard on that, because I don't want to be known as that kind of person. I don't think I'm so bad, but then that's just me saying. I don't think my wife think I that bad, but I'm obviously little more blunt than I used to be.
llee08032
Posted: Monday, January 25, 2016 7:38 AM
Joined: 5/20/2014
Posts: 4408


Pink & Sun,

I can relate to the swearing. To my shock and dismay I've done it at work to emphatically express myself when I could not find other words. Difficulties with speech were the 1st symptom I had that started in my late 30's. I went to PCP back then who sent me for MRI which was normal and I went on my merry way glad that I didn't have a blood clot or tumor. Some days are worse than others. On the bad days I try not to talk much and when I have to, I write down what I need to communicate and stick to just what I need to say. I guess others think I have a speech impediment or communication disorder. I joke about it at work and say I have verbal dyslexia. I can't find words, change the first letter of other words around in a sentence, slur, stutter, have long pauses, use replacement words or make up words, mispronounce words, etc. There have been some good posts on understanding aphasia and  accommodations I'll see if I can find some and repost. 


The_Sun_Still_Rises
Posted: Monday, January 25, 2016 7:59 AM
Joined: 7/24/2015
Posts: 3020


apinkswan wrote:

Sun, I have been using the F word and I am not one to even swear.  Can anyone else relate to swearing more than you used to?  I'm also experiencing slower and slurred speech more now.  It's really not new, just more often.

-------------------------------------------------------------------------------------------

Good see you Pink,

May it be that no one else language center attack in this disease.  But if is, like mine...know that there be second language area brain...called "special language"...stays well preserve...this is where swear words an racism are stored.  So when other words fail, can no be found...swear is what come out. 

As always, please see me no the disease.

<3

llee08032
Posted: Monday, January 25, 2016 9:20 AM
Joined: 5/20/2014
Posts: 4408


Bill,

I know how you are feeling. I feel like I used to be hyper-acutely aware and hyper-conscious of any type of change or indication of decline. Perhaps some of us become vigilant out of fear of the unknown? I think it is a quite normal and natural response. We never know from day-to-day how and in which way we will be impacted and some losses hit harder than others. Persons on the board were great at helping me to calm down as I could get myself worked up over any new or unusual event or brain hit. Not projecting about progression and decline is easier said than done. 


BillBRNC
Posted: Monday, January 25, 2016 10:02 AM
Joined: 12/2/2015
Posts: 1018


llee08032 wrote:

I know how you are feeling. I feel like I used to be hyper-acutely aware and hyper-conscious of any type of change or indication of decline. Perhaps some of us become vigilant out of fear of the unknown? I think it is a quite normal and natural response. We never know from day-to-day how and in which way we will be impacted and some losses hit harder than others. Persons on the board were great at helping me to calm down as I could get myself worked up over any new or unusual event or brain hit. Not projecting about progression and decline is easier said than done. 

 =========

 Hit the nail on the head. Yes, this board has helped to calm me down, as I do get worked up over all of this. it is reasonable for us to be worked up, but it also is often is a total waste of time and brain cells. I guess I just want to be sure, so I'll know I'm not somehow making all this up and going crazy. If it is real, then I can deal with it, at least I'll do whatever I can do. If it is not real, then why disrupt everyone around me. Fact is I know the answers, or at least I think I do. I just don't particularly care for them, so I keep looking for ways out. Anyway, thanks.



alz+
Posted: Wednesday, January 27, 2016 7:26 PM
Joined: 9/12/2013
Posts: 3608


https://www.youtube.com/watch?v=2iHUXSVv8Mg

woman in video with younger onset, rapid decline, happy person.


Iris L.
Posted: Wednesday, January 27, 2016 8:41 PM
Joined: 12/15/2011
Posts: 18513


Tracy Mobley, who posted as Younghope1, is one of our members.  Here is her video:

https://www.youtube.com/watch?v=alFphwiTn44



Tracy started Camp Building Bridges, for children of PWDs.

 

Iris L.

alz+
Posted: Wednesday, January 27, 2016 9:26 PM
Joined: 9/12/2013
Posts: 3608


Iris - I just watched this video and thought she sounded "familiar". Thanks!

brag: I just removed from INSTA AD junk from my computer! it had pop ups all over the place. Gone. 

If I were doing a selfie video I for sure would have included the one piece swimsuit getting it on demonstration with 3 hour later removing junk from computer.

One day, Keeper is my witness, I threaded a needle in ONE attempt. Could not even see the needle much less the hole. 

time for bed.


Iris L.
Posted: Wednesday, January 27, 2016 9:58 PM
Joined: 12/15/2011
Posts: 18513


                                  You go, girl!


                                  Yea!!!


joto815
Posted: Saturday, January 30, 2016 10:47 PM
Joined: 5/15/2015
Posts: 13


BillBRNC wrote:
...Lately, the memory and speech issues have been less large, while the mood/behavior/anxiety/anger/whatever seems a little worse...

I am probably 5+ years into younger-onset (now late 50's). My mood swings were the first indicator, then came memory misfires and lapses, delusions, strange behaviors and anxiety, and more recently not so much anger as more verbal aggressiveness. These have all been newer, uncharacteristic for me and noticeable to family and others. Today I continue to teach 2 nights/week for 2 hours at a time, but I notice that I am much less able to recognize students' faces, never their names, and often teach material they are not ready for or simply isn't that relevant (well, it seems relevant to me at the time). Yet, I have little difficulty with language.
Also, I no longer recognize anyone in public - even my own siblings - and can scarcely come up with names, phone numbers and such unless I have time to prepare myself. Now on an AD med, I have added insomnia, constant stomach distress and an inability to relax or nap. I am studying about younger-onset all the time online in my new, unwanted "free" time, and am frustrated by the lack of distinction between early- and younger-onset ALZ. I was briefly in an early-onset support group with all participants decades older than myself and felt embarrassed to be there as I live independently, take care of all my own business and teach a few hours a week. I really am happy I found this online group for others with younger onset. Thanks for all that all of you contribute. Cheers!

llee08032
Posted: Monday, February 1, 2016 8:19 AM
Joined: 5/20/2014
Posts: 4408


Welcome to the board Joto. I'm glad that you found us also. Thank you for joining!

I am studying about younger-onset all the time online in my new, unwanted "free" time, and am frustrated by the lack of distinction between early- and younger-onset ALZ. I was briefly in an early-onset support group with all participants decades older than myself and felt embarrassed to be there as I live independently, take care of all my own business and teach a few hours a week. I really am happy I found this online group for others with younger onset.

To the best of my knowledge the term "young-onset" is used for persons under the age of 65 who are diagnosed with dementia. This is not to be confused with persons over the age of 65 who are in the "early" stages of dementia. I found the terms confusing also. But if I am right about this you are a person who was diagnosed with young-onset who is in the early stages of the disease. I say "early stages" because it sounds like you are still able to take care of yourself and can still function independently. Perhaps someone will jump in and offer more information on this topic. 

Thanks for bringing this up because it can help others understand also.



Mimi S.
Posted: Monday, February 1, 2016 8:54 AM
Joined: 11/29/2011
Posts: 7027


Hi joto,

Welcome to our world.

Teaching at the University level was a former profession of mine. Loved it. So much easier than teaching at El-Hi lvels.

Formerly the two terms were Early Onset and Early Stage. The former was changed to Younger Onset to make it less confusing.

I know you felt out-of-place in that group. However, the numbers were indicative of the actual percentages of those diagnosed before age 65 and those diagnosed at a later age.  

On these boards, you will find that the Younger Onset are in the majority. Guess folks my age think the onset of the disease is to be expected. I get frustrated at the lack of proactivity on the part of those diagnosed at the normal age.

What I have noticed is that the first awareness of the disease often differs between the two groups. With normal age, it seems to be memory; not remembering names of things and people. With Younger Onset it's more apt to be difficulty in job performance and getting lost.

Once past that we are the same. The older folks in your group may well have been further along than you are.

Do think about attending the Forum in DC. You will meet lots of folks, most of them Younger Onset. Most of them you will not be able to know of their diagnosis by just talking with them. The point of the Forum is to learn how to advocate with our Congress people and then to do so.  For me, the best part is meeting others like myself with whom we can have wonderful conversations.

And do become involved in Best Practices. It has been demonstrated, certainly by folks on this Board, and lately more accepted by the Alzheimer's Association, researchers and medical profession that Best Practices hold out the best hope of delaying one's progression.

The strenuous exercise may help with sleep. Try a lactose free diet for a month to see if that helps the stomach distress. You may try researching herbs that help with sleep and relaxation exercises to help with sleep.

Do stay with us.


BillBRNC
Posted: Monday, February 1, 2016 9:34 AM
Joined: 12/2/2015
Posts: 1018


From what I've read, there is a lot of confusion around the definition. But most of the sources I've seen define early onset Alz (younger onset) as someone who initial symptoms began prior to age 65, even if the actual diagnosis was after 65. I'm 65, and my symptoms began about 6 years ago, but I thought it was brain damage from severe heart failure. When I survived and later found out otherwise, I went to the doctor about it. Before, I was just trying to stay alive from heart failure. So, I think you can be 70 years old and still be early onset Alz, if your symptoms started much earlier. I don't really know what difference it makes, but that is what I know about it.