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how can I get husband and mother to face that I have dementia
Iris L.
Posted: Thursday, January 21, 2016 6:34 PM
Joined: 12/15/2011
Posts: 18508


mish wrote:
well i went and no one was there so maybe another day. however I was thinking why dont we ever talk about different stuff, fun stuff/ goofy stuff to make us laugh, I mean really, everybody could use more smiles and laughter in their life? thoughts?

 

We have talked about different things in the past.  Try this thread:
 To Lift Our Spirits

 


 

  

When I posted it originally, I was chastised by a new member who thought it was too frivolous.  Both the Caregiver board and the Spouse/Partner boards have humorous or uplifting threads.  I don't see why we can't also.

 


On the old board, we had a strong music thread, where everyone listed their favorite music and music websites and internet radio sites.
 
 

For the chat room, we will have to set an appointment time, because there are so few  patients who are interested.  The caregivers chat every evening from ~5 pm to 8 or 9 pm.  They just show up.


Keep in mind that there are 3 chat rooms.  One for caregivers, one for spouses & partners, and one for patients.  If you think you are in the wrong chat room, click on the drop-down menu at the upper right, and click on the one you want.  You can enter the Caregiver's chat room, and ask them for help, if you get confused.  They will help you. 


This is OUR board, for us patients.  We can use it however we want.  We can learn more about dementia, and about living with dementia, and use it to communicate with each other.  We can use it to enrich our lives, and to learn how to have a good time despite having dementia.

Iris L.

 



Iris L.
Posted: Thursday, January 21, 2016 6:41 PM
Joined: 12/15/2011
Posts: 18508


mish wrote:

 since my talks didnt work when I was talking and my brother or someone would interrupt I gave them the hand. after a bit they got upset because it was rude and then dad stepped in and gave it to them about how it is for me and how many times does he or I have to tell them? 

 

Are you Italian?  I heard Italians talk with their hands.  Keep waving your hands around.  Rick Steves on PBS had a segment on Italians talking with their hands in Italy.  It was great!


I also heard that a way to make people calm down and listen to you, is for you to whisper.  I don't know if that really works, because I never tried it.  But you can try, and report back to us.


In any case, things have changed.  You aren't the old Michelle, you are the NEW Michelle.  Smile mysteriously, like the Mona Lisa.  Let them wonder what you are up to.  Let them come to you.


Iris L.

 



Iris L.
Posted: Thursday, January 21, 2016 6:47 PM
Joined: 12/15/2011
Posts: 18508


mish wrote:
 I have tried to bust chops and dress like who they think might be on the streets or MI and that did not work it any way shape or form. 

 

Why are you trying to dress down?  

(what is MI?  Michigan?)

Dress cool!  Who says we can't have dementia and dress well?  I read that some caregivers make sure their fashionable parents with dementia still look sharp.  

We don't have to conform to what other people think.

I live in California, so I dress casually.  

Iris L.

 



Iris L.
Posted: Thursday, January 21, 2016 10:06 PM
Joined: 12/15/2011
Posts: 18508


Michael Ellenbogen wrote:

If you want to have a real conversation click on this link.

https://zoom.us/j/643278138

 

Michael, what is this "zoom" site?  

Anyway, it says something about the ID not being valid.

Iris L.

mish
Posted: Friday, January 22, 2016 11:17 AM
Joined: 6/21/2012
Posts: 439


portuguese lol but grew up with many many italian friends and husband is italian.  Iris it is so funny that you mentioned the Mona Lisa because I am taking a art hx class on line to keeping the brain going and it has a thing on Da Vinci and my dad has one of his masters in art hx and we were just talking about him.  Ironic. If the people go on the chat rooms around 5 pm what would that be in RI time?  probably stupid question but work with me. I have noticed changes on this board since last time, everyone seems to be tip toeing around  - what is up with that? I dont get the sense of connection/family like I used to. Theres sarcasm that is "hidden" that was here before.  and I think it b.s. This is the one place we shouldnt have to censor what we say and feel.  people lets all take a deep breathe, take the sticks out of are arses and lets start a new.

New year, new beginnings. 

how about it. ?

my stick as of......yup its out. 

next?


Michael Ellenbogen
Posted: Friday, January 22, 2016 11:38 AM
Joined: 11/30/2011
Posts: 4460


Zoom is video conferencing that allows you to talk to other online. It can be with video or just audio. The link only works when I set it up for as long I was there. I can always set one up but its better planed. From what I can tell most folks on this board are not willing to try something new which is sad. There is such a befit to meeting others this way.

 


Iris L.
Posted: Friday, January 22, 2016 12:46 PM
Joined: 12/15/2011
Posts: 18508


Mish, the Mediterranean cruise I am thinking about for this year will begin from Lisbon.  It's great that you were able to travel around Europe for 3 months.  I would love to do that.  


As a matter of fact, the more I read the boards, the more I think about cashing out my IRA and just traveling, until the money runs out.  


This board is for us, and there are only a few of us.  We should be able to use it and express ourselves in a way that makes our journey with dementia and CI better.  


5 pm in the West Coast would be 8 pm on the East Coast.  But some on the East Coast may begin to chat at 5 pm their time.   So, Mish, you could probably try about 5 pm your time, and keep checking every hour, until you see others.  


But keep in mind, that for now, it is mostly caregivers who chat.  I used to chat almost every night, but I chat very little now.  But others may want to chat.  


I suggest that if you want to chat, post a new thread in the morning, that you want to chat in the evening, or at whatever time you want.  Perhaps around noon.  Noon your time is 9 am my time (west coast).


I hope you continue to post, Mish.  We need input from members and different points of view.

 


Michael, perhaps you could post in the morning also or at least a few hours beforehand that you will have your video conference.  Perhaps have it on the weekend, and more members may be available.  I have an older computer and I do not have video/webcam or a microphone.


 

Addendum:  Tonight might be a good  night for chat, due to the huge snow storm that is expected.  The airports will be closed.  Public transportation will be shutting down.  Mish, or anyone else, if you want to chat, please post a new thread. 

 

Iris L.


Michael Ellenbogen
Posted: Friday, January 22, 2016 1:06 PM
Joined: 11/30/2011
Posts: 4460


 That’s the beauty of zoom.  You can still participated by calling in by phone and entering the code.

 


llee08032
Posted: Saturday, January 23, 2016 7:06 AM
Joined: 5/20/2014
Posts: 4408


Thank you Michael. I didn't know you could call in also.
Ladybug1952
Posted: Sunday, January 24, 2016 1:02 AM
Joined: 1/21/2016
Posts: 1


Hi MIsh,

I can relate to your post about family not believing you have dementia or not believing you are "as bad as you are."  I hear it all the time.  It is so frustrating that I finally asked my doctor this week to please write a letter that I can show to my family that includes:

What stage she thinks I am in right now?

What we can expect going forward?

Am I safe to live alone right now?

Just because I am not a complete idiot, my daugher-in-law thinks I make stuff up.  I'm 63 and always worked jobs that required multitasking.  I've worked for lawyers, doctors and managed 20 people at a time in a high-voloume, fast-paced call center.  Now, when I talk to people sometimes, I can hardly put a sentence together.  (That's the great thing about the internet and boards, huh?  We can take our time, if we need to).    

Do you have these kinds of difficulties?  

Asking the same thing over and over - like "what day is today?"

Or I ask my granddaughter what time she is going to work - 3 or 4 times in a day?

Or - I forgot I have an appointment

Or - I'm 1-1/2 miles from home and it takes me 40 minutes to drive there because I am lost in my own neighborhood?

I understand your dilemna.  It is so frustrating!

 


Iris L.
Posted: Sunday, January 24, 2016 1:46 AM
Joined: 12/15/2011
Posts: 18508


Welcome to our online support group, Ladybug.  Are you on medication for your memory?  I have been on Exelon patch and Namenda for over six and a half years, and they have helped me with those symptoms that you mention.  


Are you able to use a clock and a calendar?  I post all of my appointments on my calendar, which I check twice a day.  I also make use of two daily journals for notes.  Actually, I have four journals, but two are for daily use and the other two are for more sporadic use.


I hope you join us and keep posting, Ladybug.  



Iris L.


mish
Posted: Monday, February 1, 2016 10:21 AM
Joined: 6/21/2012
Posts: 439


you can share what I said on the other boards -fine with me.
Iris L.
Posted: Monday, February 1, 2016 11:34 AM
Joined: 12/15/2011
Posts: 18508


Share what?


Mish, how are you doing with your DH and mother?  I don't think you got your question answered.


Iris L.


joto815
Posted: Tuesday, February 2, 2016 9:21 PM
Joined: 5/15/2015
Posts: 13


Pam Lee wrote:

 I'm 61 years old and in stage 4... 

I really enjoyed reading "Pam Lee's" post from several days ago. I am so overwhelmed with facts and figures - it was refreshing to just read what Younger Onset ALZ is like for others close to my age [57]. I did look up the 7 Stages, and I guess I am well into stage 5.
This evening I went to a visitation for a close relative. It takes me a long time to recognize people now that I do not see regularly. This evening, by the time I realized who many people were, they seemed as if they were already extremely offended that I did not know them within seconds and did not care to speak by the time it did dawn on me who they were. I was able to chit chat with those who I did know, but mostly stood quietly next to my siblings and let them do the talking as they are beginning to understand how difficult it is for me to be in unfamiliar social situations. Oh, I polish up pretty good, and I suppose since I haven't really changed in looks much since now I am back down to my high school weight. People seem to know me right away. But most acquaintances are very unfamiliar to me - those I do recognize seemed to have aged a lot, as if I have away for many years.

In my daily life, I feel like I live in a dream world. Days all blend together, I often forget to eat, drink, take pills, don't know what time of day or night it is, and I won't say I am afraid to go out, but I do get disoriented and overwhelmed. I haven't cooked in a year. I try to shop, try to assemble meals, but I get so distracted that food rarely gets on the table. I am able to sometimes pick up some deli items and remember to eat them. When I have tried to ask for help, no one believes me and someone ends up just telling me to stop being lazy. So I stopped asking. Since Sunday, I have eaten a bag of M&M's and a slice of cheese. But I get up the next day and vow to try harder.


llee08032
Posted: Tuesday, February 2, 2016 10:17 PM
Joined: 5/20/2014
Posts: 4408


Joto,

I can see the ladies on the board having a field day with you about you needing to take care of yourself. MM's and a slice of cheese? On top of everything else you do not need failing health from lack of  proper nutrition and hydration! Low sugar, malnourishment and dehydration can cause all types of health problems to say the least. It is very, very, important that you feed your brain as well as your body. Are you familiar with best practices which includes diet, exercise and socialization? I cannot recall if you are on medications such as Excelon patch, Aricept or Namenda? I am still trying to wrap my mind around the diet part of best practices but many here are doing very well and swear by it. Someone please jump in and help me explain best practices?

As far as the remembering to eat part you're going to have to write reminders and hang notes, compile shopping list and get to the grocery store. There are ways that we learn how to accommodate not remembering things. It is important that you take care of yourself really, really well now. If your not good at cooking or remembering to turn off the stove you may need to microwave and eat more fresh foods. 

Please let us know how we can be of help? 


joto815
Posted: Wednesday, February 3, 2016 3:38 PM
Joined: 5/15/2015
Posts: 13


Thanks LLEE for your reply. My tangential post was supposed to be about my experience of having friends, family and PCP doctor not accepting my Younger-Onset diagnosis, and I'm sorry I rambled on. I actually do go to the grocery store pretty often, but more often then not give up and leave or come home with next to nothing for proper meals - just a few odds & ends that I like. Aricept seems to rev me up without helping me focus. I get up earlier but accomplish little more. I go back to the neurologist in a couple weeks, so maybe in my 12-min. visit I can get some better info! Cheers...
Iris L.
Posted: Wednesday, February 3, 2016 3:55 PM
Joined: 12/15/2011
Posts: 18508


joto815 wrote:
 My tangential post was supposed to be about my experience of having friends, family and PCP doctor not accepting my Younger-Onset diagnosis, 
 
 I go back to the neurologist in a couple weeks, so maybe in my 12-min. visit I can get some better info! 
 
 
 
 

Welcome, joto.  What I have been trying to get PWDs to understand is that the professionals can help us only so much.  Basically, they can diagnose, and prescribe medication.  As far as the rest, we have to figure it out on our own.  That has been my experience.  


That is because the professionals are clueless as to what is important for early stage patients.  They are more used to later stage patients and dealing with caregivers.


I suggest that you read many of the threads here.  You may get ideas for questions for your doctor.  Best wishes.


Iris L.

The_Sun_Still_Rises
Posted: Wednesday, February 3, 2016 8:09 PM
Joined: 7/24/2015
Posts: 3020


Hi an Welcome Joto, an I hope no one give you hard time...esp since you adult an clearly get issue at hand (I swear some times they be think we idiots an children).

I also have trouble eating an doing ALL my tasks, an it seems onl get harder as I go.  I have learned develop a humorous attitude bout it, an no longer trip on these things.  Which was huge work for me, as I am rather type-a.  I tell my self each time, I can onl eve do best I can with what I have...an hope it all works out. 

No eve one has the kind of help you some times hear bout...or that we all dream bout.  Indeed, stats say onl 1 in 5 has good help, an 4 in 5 we be on our own for most part.  Man of us have family with us...but they no real helpful.  It is soooo common in dementia world (not as common on here).  An, to make matters worse NO THING is written for us...help guide us through it. 

I no sure *what* Iris be trying teach us...I think all us here get what she say here in spades...as must us ON OUR OWN here:

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

Iris wrote:

"Welcome, joto.  What I have been trying to get PWDs to understand is that the professionals can help us only so much.  Basically, they can diagnose, and prescribe medication.  As far as the rest, we have to figure it out on our own.  That has been my experience."

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

I think she be sensitive us wish our family, friends, LOs...cared more than they do...an wishes we'd show more fighting spirit.  But think we all have that in spades too. 

I found signs, notes, post its, an I eve made notebooks that walk me step-by-step through my routines helped a long, long time stay functioning myself.  I just recently moved into stage 6, an am now a bit beyond my tips an tricks to get through day...an ready for peop tell me when I need do things...I can just no keep all that in my head an more. 

An it no be that our reasoned be broke (hate that characterization)...it be that our brain be working hard as it can just do what it does...an it all just be too much. 

I find now, tacking tasks onto taking my meds works well.  Like each time I take meds, I need drink water an go bath...so I can hope full avoid waiting too long an have accident.  I am now tacking on eating at some med taking times...because, like you, I don't eat left to my own.  I am no hungry, I don't want it..food be strange foreign in mouth, mouth no know what do with it, stomach an gut no know what do with it...an it just be more trouble than worth. 

Saying all that so you know you no alone in this.  <3

    


joto815
Posted: Thursday, February 4, 2016 11:22 PM
Joined: 5/15/2015
Posts: 13


Everyone here in Younger-Onset has been great. I have enthusiastically read many of the posts already and find I can relate to most of what I read about the middle-age experience with dementia, Alzheimer's or FTD. I don't know which I have and don't know that I be able to find out. Doc says it would cost a lot of money, cost a fortune and wouldn't change the treatment or prognosis. My language skills are still great, but my "executive skills" are just a mess.

I did go grocery shopping yesterday and managed to come home with a few healthy things I can prepare and eat. By the time I got home, I'd forgotten I'd been to the store, so I didn't get the food out of the car until this morning, but it was cold enough that nothing spoiled. Just had to deal with that creepy feeling when I got up - I was SOOOO sure I'd shopped, but found no evidence of having done so until I went out to get in my car. Thankful for the food today. Cheers!


llee08032
Posted: Friday, February 5, 2016 5:36 AM
Joined: 5/20/2014
Posts: 4408


Glad you got some shopping done Joto. Sometimes we need encouragement, objective viewpoints and others to point things out to us. I came to board prior to diagnosis. I had not been to the neurologist for over a year and did not want to follow up with testing. I needed people to point out the importance of pursuing diagnosis, information about the testing process, and support with following up with the test. I also needed advice about what type of lifestyle changes I needed to make. 


llee08032
Posted: Friday, February 5, 2016 5:45 AM
Joined: 5/20/2014
Posts: 4408


I just noticed the other day that we have a "Quote" feature. Have we always had a quote feature?
The_Sun_Still_Rises
Posted: Friday, February 5, 2016 8:04 AM
Joined: 7/24/2015
Posts: 3020


Llee, yes we have always had quote feature.

Joto, it can be hard tell diff be tween dementias...but they each have tells.

FTD oft has behavior component...the peop I know who have it, oft first symptoms be acting in ways never would have like sleeping round, or spending all money or giving way money.  Apathy be big one too.

Lewy Bodies tends have 3 hallmark signs...one be hallucinations, one be acting out dreams or sleep walking, an one be bett days worse days. 

Hope that helps. 


TheSteven
Posted: Friday, February 5, 2016 12:51 PM
Joined: 10/11/2014
Posts: 167


Hi Mish and Welcome Pam,

Mish, I understand how you feel about looking young so people don't think you can have Alzheimer's. I am Chinese and at 58 I am only now starting to get a few white hairs. Most people think I am only 40 so they could not comprehend dementia in someone looking so young. Regarding the pauses in speech due trying to find the right word. What I did was to use a substitute word “thingy” so that I could continue trying to get my thought across so people could not interrupt me. By doing so, people I am conversing with also could tell if I was getting worse or not by how many times I used the word “thingy”. Your husband and mother will get the point quickly when they have to really get the thought you are trying to express by the context of your sentence with a few thingy's sprinkled in your sentences. My family got to understand me pretty well when I would point to it.

After my mercury dental fillings were removed and many months of detox my use of the word “thingy” is mostly non existent now as my son mentioned it during winter break when he was home. Did you ever or still have any those dark dental fillings dentists' called silver or amalgam fillings?


Pam,

Many dentists and those who work in a dentist's office are exposed to a lot of mercury in the air during the redrilling of old mercury fillings to replace with mercury or composite fillings. This causes their rates for Alzheimer's and other mercury caused conditions to be higher than the general population. You and Mish may be interested in reading these two books:


"Beating Alzheimer’s: A step Towards Unlocking the Mysteries of Brain Diseases” by Tom Warren


It’s All in Your Head: The Link Between Mercury Amalgams and Illness” by Dr. Hal A. Huggins


These books are in my July 4, 2015 blog entry at http://thestevenalztreatment.blogspot.comas well as links on information such as the two which I often post at here.


See http://amalgam.org/education/scientific-evidenceresearch/results-removal-amalgam-fillings/

http://www.fda.gov/ohrms/dockets/dailys/02/Sep02/091602/80027dde.pdf



joto815
Posted: Sunday, February 7, 2016 12:28 AM
Joined: 5/15/2015
Posts: 13


Following the theme of "getting others to face" one's dementia diagnosis...

I was diagnosed with AD in the Fall 2015. Due to extensive brain shrinkage as well as mine and others' reports of the onset of my symptoms, we estimate an onset of 2010 or so. During those 5 years, my behavior became increasingly erratic and sometimes bizarre, I reached the point where after nearly 30 years, I was no longer able to teach, I have alienated most everyone in my life and my health has started to deteriorate since I now live alone. Since starting treatment with Aricept and studying much research, I want to tell everyone who knows me that I am not crazy - I am sick. But apparently my friends and family have little or no interest in my brain disease; they just want me to get off disability and go back to work and maybe just disappear back into my own life again. After all, I am in the peak earning years of my life right now. Supposedly. But with my short-term memory all screwed up, the fact that I cannot recognize faces except those of the most familiar who I have recently seen unless I am first told that I will see them soon, sundowning, insomnia, the blocks of time I simply lose... I scarcely know how to begin to tell someone who has known me all or most of my life that now I'm somehow different and require some accommodation to be at ease. More when I get delusional.

..

 I don't feel I can get anyone else to face the AD in me. However, I can face it and then articulate ways through which I can better interact with my family and friends and the world around me. Anyone else have any thoughts on this?


Iris L.
Posted: Sunday, February 7, 2016 12:03 PM
Joined: 12/15/2011
Posts: 18508


I have had similar experience except for delusions.  I was chastised for discussing memory problems.  So now, I do not disclose anything about memory to the outside world.  If I have to say something to anyone, I blame anything untoward on lupus, when actually the lupus is lessening as a factor in my life.  Or, I might say I had a small stroke.


I have discovered that the entire outside world, including personal friends and especially professionals who work with older adults, just do not understand.  They are clueless.  I am tired of figuratively beating my head against a brick wall.


Why do I not disclose the truth?  The truth is too confusing to people, and frankly, even to me.  I have several possible etiologies for my cognitive problems, hence the "nos" diagnosis, which has now been eliminated.  Can I tell people I have mild neurocognitive disorder?  That means nothing to people.  And I am not about to give a lecture about my entire medical history.  Who would know what anti-phospholipid syndrome is?  It's just too much for me to go into.


Iris L.




Mimi S.
Posted: Sunday, February 7, 2016 11:58 PM
Joined: 11/29/2011
Posts: 7027


Iris and I have had different experiences. 

I say to tell. 

Granted I was older when diagnosed and I can grant that makes a difference. 

When questioned why you don't return to work, tell them exactly what you wrote. 

Do tell us more about yourself.  What was your field?  I was in Child Development 


Iris L.
Posted: Monday, February 8, 2016 2:08 AM
Joined: 12/15/2011
Posts: 18508


Mimi and I have different experiences probably because Mimi has a definite diagnosis of Alzheimer's Disease, and I have an "nos" diagnosis, which has since been eliminated.  So I really don't have anything specific to tell people.  Plus, I dare say, Mimi is around a different group of people than I am.


Iris L.


joto815
Posted: Monday, February 8, 2016 6:53 AM
Joined: 5/15/2015
Posts: 13


Mimi S. wrote:

When questioned why you don't return to work, tell them exactly what you wrote. 

Do tell us more about yourself.  What was your field?  I was in Child Development 

I was an Adult Second Language Acquisition professor, fluent in Spanish which I began to speak at age 9 and conversant in Catalan, French, Italian - and frightening in German and Ki'ché. During my relatively brief career I traveled constantly, established residency in Spain pre-EU and lectured widely. I began to shows signs of MCI in 2006, though it was misdiagnosed as a psychiatric disease. As the AD progressed, my diagnosis was never questioned, and so I spent a year deteriorating on lithium. Today I have lost most of the language skills I acquired painstakingly over the decades, but I do continue to teach a class or two per semester. I took a 14-day trip back to South America 2 years ago, but it quickly turned into a nightmare as I was often dazed & confused by unfamiliar surroundings. I have hardly left the city limits alone since then.
Iris L.
Posted: Monday, February 8, 2016 12:23 PM
Joined: 12/15/2011
Posts: 18508


What a great career, joto.  I am currently learning Spanish online.  Learning a new language is one of the suggestions for continuing to stimulate the brain of Best Practices.  I used to tutor Adult Literacy and ESL.  I want to get back to that activity.


Many patient members have reported being diagnosed as having a psychiatric illness or being diagnosed as being bipolar in the time preceding their diagnosis for dementia.  I wonder how many had their brain disease worsened by the psychiatric medications.


I myself was diagnosed as having depression, although I was not depressed when all of this began.  In fact, I was in great spirits.


Iris L.


llee08032
Posted: Monday, February 8, 2016 9:19 PM
Joined: 5/20/2014
Posts: 4408


 I don't feel I can get anyone else to face the AD in me. However, I can face it and then articulate ways through which I can better interact with my family and friends and the world around me. Anyone else have any thoughts on this?

Joto, in general people don't know a lot about young-onset dementia and find it hard to comprehend what they can't see. Persons most close to you may eventually recognize some of the changes..Perhaps you could point them in the direction of some general information or invite a family member to attend a neurology appointment with you? You could also suggest that family or friend's call the 1800 hotline to get information on how to best support you. 


joto815
Posted: Monday, February 8, 2016 11:00 PM
Joined: 5/15/2015
Posts: 13


llee08032 wrote:

 Persons most close to you may eventually recognize some of the changes..Perhaps you could point them in the direction of some general information or invite a family member to attend a neurology appointment with you?


What my family does recognize is the j-hole I became as the AD began to emerge while I was being mis-medicated and over-medicated with lithium and antipsych drugs. They told me at the time I was foolish to take those meds, and now they are simply saying, "we told you so!" They just do not want to hear about AD now.
Iris L.
Posted: Monday, February 8, 2016 11:50 PM
Joined: 12/15/2011
Posts: 18508


My issues are more in the area of impairment of executive function, and less loss of memory.  No one knows what executive functions are, and impairment appears more like willful lack of effort on my part.  The nice people are just not interested.  The cruel ones tell me I am faking or lazy.  So, I avoid even having the topic of my impairments come up.


Iris L.


mish
Posted: Sunday, February 14, 2016 10:34 AM
Joined: 6/21/2012
Posts: 439


First off sorry I have been away for a bit I have zero immune system so when hubby gets a cold I get really really sick, it turned into bronchitis ( as always) then walking pneumonia. Mom is the same way now she has it. Watch out the fue this year knocks you out! 

Anyway- I am troubled by some postings on the boards I feel like some people are being " called out " and bullied almost and that is sooo not cool. 

So p!ease this is a safe place, stop with calling out people if you don't like what they have to say. I mean seriously? Grow up.

Next- as for telling others re. Work, due to my age and how young I work I used to day to some I'm disabled but again like some said above  they look at you like yeah right, lazy. Then I talked to my dad before we went on a family trip and we talked about what I should say when people ask what I do ,he said you can say you are a therapist which you are just not active (because I don't lie and didn't want to start) or you can say you are retired. Which in a round about way you are. If they say anything like aren't you too young just keep it short and simple. you can say: well life is short why not enjoy it while you can and leave it as that. It in no ones business. So now I use the retired thing, if I get looks its from women who are like who do u think u are to not work and I have to??? Lol


Mimi S.
Posted: Sunday, February 14, 2016 11:22 AM
Joined: 11/29/2011
Posts: 7027


 Mish,  I do hope that you see that our Board has returned to its former loving, supportive function. 

I find it again a pleasure to log on 


TheSteven
Posted: Sunday, February 14, 2016 9:09 PM
Joined: 10/11/2014
Posts: 167


Hi Mish,

I tell people I am retired for medical reasons. If they inquire further, I tell them that I was let go because of my Alzheimer's which was caused by my mercury fillings. I use the opportunity to educate them on anything I want to tell them about what I have learned about Alzheimer's in my own experience and situation.

In the many months before I had my mercury fillings removed and when I still had aphasia I took the opportunity to educate them. It isn't often that people get the chance to talk to someone with Younger Onset ALZ who can still communicate to a degree and is willing to open up about their situation. Use of the shock and awe principle to get the point across. In my case, since most people don't know or believe that the dentists and ADA would knowingly poison hundreds of millions of people and cause the slow deaths of tens of millions of others they would listen.

Don't be afraid to tell them you are retired for medical reasons. Before I knew what my root cause was, I firmly thought I might become one of those statistics that would not last another 8-10 years because it was going to get progressively worse and it was getting worse at that time.

By the way, I posted on my blog that I am weaning off my donepezil with my neurologist's okay. So don't despair.