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does anyone feel like since being dx they have been branded? we are being forgotten before we forget?
mish
Posted: Thursday, June 21, 2012 11:43 AM
Joined: 6/21/2012
Posts: 439


Hi,  i'm mish, very new to this blogging or message board thing but I felt like I really needed a support  system.  So here I am!  43  frontal temp. dementia.  but now my tap shows    all these proteins and tau,.... for alz. also. (luckly me)  meeting with my   guy (wait have to look at my memory board... on the  13th of july) for him to explain all the   details. However, read it to my dad,   and  he  said   to paraphrase "mish, I dont have it  in front of me, but from what you are reading me, it does not sound good," can I really have FTD and AD  to boot?  the answer yes.  I was on arricept. But  I became tired of looking at my  bathroom (as lovely as it is)   and the galantamine  came out the other way. Again the bathroom.   Now, waiting to see MD to see if I can use the  patch.

Sorry to go on,  I have the  language kind of picks,  I used to be a counselor and run support groups, etc.  Not now, my poor clients would run like forrest gump if they saw me coming! Get to the point they would  probably say or else I will have a drink> not good.

so  back to the point- does anyone feel like since being dx you either get- denial ( which is normal) you LOOK healthy so you can't BE sick, or  they avoid you - no it is not catchy,   they dont know what to say or act around you so they don't come around.  or call.  or write or fax.   Or they feel bad and treat you like  bubble boy.    Since I was dx,  the phone has rang less and less,  and less. invites are  almost non existent.    sometimes neighbors avoid eye contact.  I know if its due to lack of knowledge on the matter. but it still hurts.  anyone  else feel like this?


Iris L.
Posted: Thursday, June 21, 2012 1:25 PM
Joined: 12/15/2011
Posts: 16104


Welcome to our online support group, mish.  I'm sorry for your diagnosis.  You sound like you have had extensive testing, which is good, because many new members come here with incomplete testing.  It helps to know what you are dealing with.

You say you run support groups.  You are sorely needed, because support groups for dementia and other cognitively impaired patients is lacking.  The reception in the real world is poor, and even the medical world doesn't know what to make of us early onset and early stage people.

I mostly avoid telling people my diagnosis, which is cognitive impairment not otherwise specified.  I have impaired executive functions.  Who knows what that means?  If I have to mention something, I tell people I had a stroke that left me with some brain damage.  That may sound like a cop-out, but I can't deal with being called a hypochondriac any more.

I have been on Exelon patch and Namenda for three years and they have helped me.  I had some side effects in the first month but no side effects now.  Mimi S. has some suggestions for dealing with the gastro-intestinal side effects, involving avoiding milk and other lactose-containing products but taking yoghurt.

What have you done about your work situation?  Have you resigned already?  Do you have long term disability benefits?  Please write back.  We will help you all we can.

The Helpline is available with Care Consultants who are master's degree level social workers with expertise in all areas of dementia and caregiving.  They can advise you on your specific situation if you have questions or concerns.

Please post often.  We support each other.  Dementia is a lonely and difficult disease to deal with.  You are not alone.  We are here.

Iris L.

mish
Posted: Thursday, June 21, 2012 1:52 PM
Joined: 6/21/2012
Posts: 439


Yes I am no longer working, I carried a  huge caseload  of about 50 clients and  then groups.  There comes a time when you can't "make it work" anymore".  I  could not.  I miss helping people with all my heart.   I did it for 18 or so years.  I wanted to go into rpivate practice,  but that is when  other powers said,"Oh no you don't". Unfortunately, I really don't remember alot of stuff I used to do. I dealt with heavy stuff. (not like this isnt) like cutters and court committals   .......  My resume looks realy impressive.  Too bad it looks like  someone elses sometimes.   Anywoo. Yes, I filed for disability, I met with my lawyer, have a POA and backups, I have a living will, health care   stuff is done. bills taken care of.   

re. the GI  craziness  I tried the  tricks of the trade  yet my stomach went "no, I do not think so!"   So I finally had to listen. Thank you for being so kind.    

you are not copping out by the way.  deal  and say what you want to about your dx anyway its yours.  its your life, not theirs.     and if life  drives you mad one  or 2 or 3 days... listen to Helen Reddy " I am woman hear me roar" and sing at the top of your lungs!  you will feel much better.  just  a  thought!


Nie
Posted: Thursday, June 21, 2012 2:02 PM
Joined: 5/30/2012
Posts: 66


mish wrote:

Hi mish

 

Hi,  i'm mish, very new to this blogging or message board thing but I felt like I really needed a support  system.  So here I am!  43  frontal temp. dementia.  but now my tap shows    all these proteins and tau,.... for alz. also. (luckly me)  meeting with my   guy (wait have to look at my memory board... on the  13th of july) for him to explain all the   details. However, read it to my dad,   and  he  said   to paraphrase "mish, I dont have it  in front of me, but from what you are reading me, it does not sound good," can I really have FTD and AD  to boot?  the answer yes.  I was on arricept. But  I became tired of looking at my  bathroom (as lovely as it is)   and the galantamine  came out the other way. Again the bathroom.   Now, waiting to see MD to see if I can use the  patch.

Aricept gave me plenty of time to think about how to remodel the bathroom too.     I am very recently on the Exelon patch and so far so good.  

 

Sorry to go on,  I have the  language kind of picks,  I used to be a counselor and run support groups, etc.  Not now, my poor clients would run like forrest gump if they saw me coming! Get to the point they would  probably say or else I will have a drink> not good.

so  back to the point- does anyone feel like since being dx you either get- denial ( which is normal) you LOOK healthy so you can't BE sick,

Yes, yes I can really relate to this.  My family who doesn't see me since we are in different states says things like..you look healthy in your pictures.  I guess we have to understand that they simply cannot really understand.  They are not in our heads.  It's such a tough thing to explain, especially when you are having trouble simply communicating. 

 

 or  they avoid you - no it is not catchy,   they dont know what to say or act around you so they don't come around.  or call.  or write or fax.   Or they feel bad and treat you like  bubble boy.    Since I was dx,  the phone has rang less and less,  and less. invites are  almost non existent.    sometimes neighbors avoid eye contact.  I know if its due to lack of knowledge on the matter. but it still hurts.  anyone  else feel like this?

Yes, I get it.  Honestly it hurts but I am a real smart as* and tend to use my humor as my defense.  I've just told a friend her lack of support and her minimization of whats happening with me really pissed me off.  But I added,  don't worry...you are lucky, I will forget that I am mad at  you pretty soon  .   


Also, I think when we share the news we might become over-sensitive and look for people reactions to things more than we ever did before.  I know I do it.  I question everything and what it might mean.  I am trying to stop.  Its hard.   


Keep coming to the forums here.  It's good for you.  It's been good for me.  It's a relief to be around people who "get it".  

Big hug.



suepedie
Posted: Thursday, June 21, 2012 2:57 PM
Joined: 6/21/2012
Posts: 2


I know something about being branded. I am a caregiver with bi-polar disorder and care for my mother with Alzheimer's. Some people tend towards denial when someone close to them is diagnosed with anything involving the brain. They try to be helpful and suggest you change your diet or take crazy supplements or get a colonic. Yeah, that will work!  I think many are terrified that it might happen to them and others think you're making an excuse for strange behavior. My most important coping device in this situation is a sense of humor. Either they will gain understanding or they won't and you don't have control over how others react. Just keep your sense of humor and don't dwell on what others think (or don't think). You are the important one here.
Mimi S.
Posted: Thursday, June 21, 2012 2:57 PM
Joined: 11/29/2011
Posts: 7036


Good discussion.

Many of us diagnosed have gone through losing friends and the disbelief.

 

I seem to have lucked out. If I lost friends, they weren't friends. And the unbelievers give me an opportunity to educate. 

 

See if there is a support group in your area for those with dementia. If not, keep your ears open. You find others and can start your own group.

And do stay with our group. 

 

Mish, your counselling skills are in your long term memory. You can use them here.


RebeccaJ
Posted: Thursday, June 21, 2012 4:55 PM
Joined: 4/19/2012
Posts: 83


Hi Mish,

I too have FTD and I agree with you about people not understanding. I have a high intelligence and look strong and healthy, but can't do more than one thing at a time...and slowly to stay foused. My mind actually stops if too much info tries to get processed. It's alarming to bystanders. If I had AD, I would be at stage 4. I say I am a princess and I allow myself to sit there and be pretty (and quiet). When I can't hold my tongue, I move to another area. When it all gets too confusing, I leave.

My home is my haven where I can do whatever I need or want. I have redecorated so my surroundings are zen-like (and safe). I don't even try to make friends anymore. It is too hard. Thankfully I have 2 grown children and a husband that give me all the support I need. I hope you, too, have somone to be with you.

Rebecca


nomemo
Posted: Thursday, June 21, 2012 7:07 PM
Joined: 3/21/2012
Posts: 439


hi mish - i, too, have ftd, formally diagnosed in 2009 at age 54.  i can identify wholeheartedly with what you've posted.  i usually also get the "you don't SOUND like you have dementia".  i've had to educate people on ftd and how it's different from other dementias, including alzheimer's, and, frankly, i get tired of repeating myself.  not to mention, it hurts a little more each time it's repeated.  my circle of friends has certainly shrunk.  it could be because it hits a little more close to home; "if it can happen to her at her young age, it could happen to me".  dementia and alzheimer's always has been perceived as an "older person's" disease.  i miss my contact with those people, though.  phone calls have definitely lessened, as well as social invitations.  as far as family support, i've always said that i'm an only child in a family of 10 other siblings.  i think you get the gist.

 

and rebeccaj, i can relate to what you said, too.  i've pretty much experienced and strategized what you posted.

 

i, too, appreciate this conversation thread.  hope to read more. 


Ron
Posted: Thursday, June 21, 2012 8:22 PM
Joined: 12/5/2011
Posts: 17


Hello Mish

Sad to say but it seems so common for people to withdraw/deny what we are experiencing. Nearly five years after being dx I just try not to take any of these nay sayers to heart. True friends will stay just that "true friends" that that is where I draw my comfort dismissing all the others. Here we know, understand, and care.

Ron


Myriam
Posted: Thursday, June 21, 2012 8:31 PM
Joined: 12/6/2011
Posts: 3326


Hi, Mish. Want to welcome you to this Board, too. Hope to hear more from you. I have a genetic form of EOAD.
mish
Posted: Friday, June 22, 2012 10:14 AM
Joined: 6/21/2012
Posts: 439


there is a group that meets every tuesday  a few miles away from  my home. I have spoken to  a few of the women from the alz. ass..  in the state and they are very helpful. The woman in charge of  groups  and myself have spoken numerous times and we  have discussed  our concerns re. the group in  my area being  a good fit for me due to the fact (and i do not mean any disrespect to anyone)  that the group consists of members in more advanced stages than myself and are  about 30 years older.  A group does exist  that is a better fit yet I don't drive long distances.

But I do have an idea of creating something different and new . When I was the social worker for a assistant living home, I ran groups for alz. and activity groups for all levels. I was thinking of creating a group for those afflicted with what we have. To address all issues. Sex,  food, friends, driving,  how to find your "thing" ,  etc. A group where yes, someone is there to facilitate but the group really helps each other . They all have been there,  they are the ones that can help with the helpful hints for day to day living. Any Joe shmoe can tell you 1-get a memory board 2- always carry a notebook .... I want a  humanistic approach that empowers people.   Anyway, that is what i was thinking of creating.  just went on for a bit,  but  am back now. lol. 

 


mish
Posted: Friday, June 22, 2012 10:40 AM
Joined: 6/21/2012
Posts: 439


I think it is soo funny when people try to give you all these  "Facts of Life" -so  to speak on how to  be  cured!  But  when you have a big ol' gut hanging out,  smoking, drinking an xxxlarge coffee? seriously ?  its like  going to  Mcdonalds and ordering a big mac, large frie, a sundae and a diet coke.lol

 People will tell you to  eat pasta  5 times a week, pray more, take all kings of herbs,  don't swear, pray more, did I  mention  the importance of  pasta and gravy?

 

Gotta love it,  everyone means well. i always say- like the italian comedian- "I am not a Doctor but....."

if it   helps them deal with what is happening to me,   I  let them go on and  turn it into a comedy  act and  then soon  there is laughter and for a while all is well. 

and that's  all she wrote.

but I'm not a Doctor.....


mish
Posted: Friday, June 22, 2012 11:28 AM
Joined: 6/21/2012
Posts: 439


well from one princess to another- nice to meet you! I  think you are great!!!!!!!!!!!!!!!!! I  do the same thing-my home is my haven when i need it.    I too get overwhelmed  and distracted by alot of noice and activity.  I  forget my words more and then like you said  it  just goes blank and i go into "michelle land". I never hold my tongue  (as you probably can tell by now) but  I  am not nearly as outgoing and social as before.  its hard when you have a hard time with words, finding  words, or when people  talk about things and say something about people or a event and you ask what?  and they look  at you and say stuff like " you know ....,  you remember  when we  were at....."  and you have no clue  what these people are talking about.  That is when it its you like a tons of bricks that "wow, I  guess I am not doing as well as I thought". Why  dont I know all this stuff?  whatever wall of denial that is left crumbles.

 


mish
Posted: Friday, June 22, 2012 11:42 AM
Joined: 6/21/2012
Posts: 439


On another note- who was it that said its better to look good than feel good?  that is why man made high heels!

I like the zen idea.  I have a room that i designed  with my oils and  crystals  and  I do my meditation  and yoga in there.     I like a room at has balance and  is "yours"-personal-not sterile..  

good luck with that.

I have  a husband no kids but I guess you can count him as a kid too.  (you know how men are sometimes) NO disrespect to anyone,   And I am very close to my family, esp. my dad.  we talk every day.  my parents are always traveling  but we still talk daily- thank you skype!  I have no family in state except husband. all   live about 14 hours away. 

 His family is in state but that is another story - they dont believe that I am ill. they keep saying I am a hypocondriac and I am lazy and don't want to work.  even after 2 years of testing, and documentation, etc.  -there's your sign re. that story. 

well princess, nice to meet you.


Iris L.
Posted: Friday, June 22, 2012 11:48 AM
Joined: 12/15/2011
Posts: 16104


mish wrote:

- they dont believe that I am ill. they keep saying I am a hypocondriac and I am lazy and don't want to work.  

 

This is happening to me too, from people I thought of as close friends.

Iris L


Iris L.
Posted: Friday, June 22, 2012 11:53 AM
Joined: 12/15/2011
Posts: 16104


mish wrote:

.  I  forget my words more and then like you said  it  just goes blank and i go into "michelle land".  


Medications can help with word finding.  I know Aricept is contraindicated for FTD patients.  I wonder what effect Namenda has on FTD patients?

Are any FTD members using Namenda?

I'm on Exelon patch and Namenda and they have helped my word finding  significantly.  I could barely complete a sentence before beginning the meds.  Now I speak fairly normally.

Iris L.


nomemo
Posted: Friday, June 22, 2012 11:55 AM
Joined: 3/21/2012
Posts: 439


mish - i wish i lived around you!  i would LOVE attending that group!  i love the way you write and express yourself......you've brought up subjects that i've thought about but haven't voiced.  and i love the touch of humor.....keep writing.  I/we need to hear from you!
mish
Posted: Friday, June 22, 2012 1:20 PM
Joined: 6/21/2012
Posts: 439


thank you  so much, girl you have me crying now!   I  am afraid to write certain things  because i dont want to offend  people. i pick up sayings  or think of things and  they might  be weird to some. I dont want to feel like elementary school>

"Michelle can you come down to the principals office now  please" 

I dont want to get  in trouble for  writing something I shouldn't.

I would love to live near you also,  need a friend, now  I have many caring people.  it feels good to listens to  others and to be part a something really, really  great.

 


mish
Posted: Friday, June 22, 2012 1:43 PM
Joined: 6/21/2012
Posts: 439


thank you soo much, when I see my guy (that's what I call my MD) way too long of a last name to get it right.   I will ask him about those meds.  thanks again!
nomemo
Posted: Friday, June 22, 2012 2:59 PM
Joined: 3/21/2012
Posts: 439


mish - now you have ME crying!  we need each other here, friend.  no one understands what's going on like we do.  when things happen and i start crying, sometimes i'll tell the person who's listening to me: "no one knows what's going on in my head but me"!  and they don't,  how can they?.  but we, on these forums, know exactly what's going on or not going on in our heads. not just our heads, but with doctors, work, attorneys, familes, etc.   we can relate to each other.  that's so important..i don't feel it's a point of "misery loves company"....ABSOLUTELY NOT AT ALL!  it's validation, empowerment, and, most of all,  freeing! 

 

what meds are you on?  i'm on aricept and namenda, depakote er, and paxil along with B-12, calcium+D and multi-vitamins.  i'll know on monday whether or not there will be a recommendation for another type of psychotropic drug because of my increased auditory and visual hallucinations.  i'm nervous about that.  the depakote er is an anti-seizure/mood stabilizing medication....i take it to stabilize my moods and the excruciating headaches that i sometimes get.  i have a headache above my eyebrows 24/7, but on days of agitation, it's increased.  i take the paxil for anxiety. 

 

can't really relate to being called into the principal's office because i was soooo good at school!  LOL!!!

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 


nomemo
Posted: Friday, June 22, 2012 3:04 PM
Joined: 3/21/2012
Posts: 439


you know, iris, i just recently found out that aricept was contraindicated  for people with ftd.  i'm taking that along with namenda.  i'm definitely going to talk with my neurologist about this at my next appointment!  he initially started me out on aricept when i had initial diagnosis in 2007 of dementia not otherwise specified.  then he coupled it with namenda because he said that there was a "good track record" of people using the 2 together.  but when i was formally diagnosed in 2009 with ftd, he never took me off the aricept.  now, i recently read that it was contraindicated for people with ftd and you mentioned it, also.  definitely going to talk with neurologist about this.  appreciated the info...thanks!
mish
Posted: Friday, June 22, 2012 4:19 PM
Joined: 6/21/2012
Posts: 439


I  seriously am questioning you being good in school.   But I will  work  with you.   and for the record, I was only called down once. 

I am on provigil (I have epstein Barr and insomnia) and topomax  at bedtime for migraines,a melatonin blend,   and klonopin. I take  vitamins and biotin. I couldstay on  arricept nor galantamine. my body said oh no you don't!   I was thinking of trying arricept again but reading what I have and what you great people have told me. I am  holding off  until I see  my guy and see about the patch.   but I  am so sick of that bathroom! I love it, nice skylight but    enough already!!!.   

beam me up scotty!

Not a Doctor but-re. meds like paxil, in some people  they can increase or cause anxiety, alot of my clients  had this  with paxil.  and re. depakote make sure you get your counts done q. six months.  I hope all is well and your sx.'s lessen.

since I am new to this messaging thing- is it ok to share info. like above if you know it and you are trained? also  is it ok to put your picture up? and does anyone contact each other outside messaging?   sorry but I dont want  to do something wrong, I really love being here.   feel really safe and  again I feel like I finally fit. 

 


mish
Posted: Friday, June 22, 2012 4:30 PM
Joined: 6/21/2012
Posts: 439


question to all_ applied to ssdi- with a lawyer (know the system)  they wanted more info.   .....yada yada and they asked me to see one of their people for a  psych/memoryeval. last month.    I applied about a year ago-give or take. havent made a decision yet.    they wanted more info. but unless they want me (you never know its the governement)   what should I do.   I contacted my lawyer , left messages in the past week  and  no return call.   why would they take so long. they always deny first 2 and  now 3 times. why havent they just denied me?   any suggestions i would very much  appreciate? sorry about my spelling by the way or words. things dont come out like they used to.  again my apologies.
Be Strong 2
Posted: Friday, June 22, 2012 4:52 PM
Joined: 12/14/2011
Posts: 1749


Just wanted to say, we here, those with dementia and caregivers alike, know where you are coming from.  Yes, the phone calls pretty much stop, and drop in visits or invitations are non-existent.  Visits to the MCH are also very limited, except for myself and her sister.  Her daughter and son don't seem to be able to handle it.  So be it.


You are among friends here.  Please keep posting.  


As I've said before, we're all in the same boat, and the darn thing leaks.



Bob  


nomemo
Posted: Friday, June 22, 2012 6:15 PM
Joined: 3/21/2012
Posts: 439


mish - my neurologist in my town and the second opinion neurologist in another town both urged me to apply for ssdi based on my ftd diagnosis - they told me that it was "fast tracked" on ssdi based on compassionate care allowance. i looked it up on the ss website on the 'puter and, sure enough, there it was!   when i applied in august 2010, about 3 weeks later i received a letter requesting another "mini-mental exam" by the ssdi neuropsychologist. i, too, was upset by the request.  i called my contact person at ssdi and asked if i could have the exam performed by the neuropsychologist i'd been seeing and was familiar and comfortable with.  she told me that as long as he was willing to accept ss payment, that would be allowed.  he did and i went to him.  3 months after applying i was approved under ssdi compassionate care allowance and received my first check 5 months later, in march 2011. i've since learned that it's not unusual for ssdi to be asking for more testing.  it couldn't hurt to ask if you can see your previous tester since you feel more comfortable with him/her and ftd may result in agitation with a new tester.   did you discuss applying under compassionate care allowance with your contact with ssdi?  as i said before, ftd is listed under that allowance and is fast tracked.  don't get discouraged but talk with your contact...soon.
Iris L.
Posted: Friday, June 22, 2012 11:28 PM
Joined: 12/15/2011
Posts: 16104


Nomemo, Aricept sometimes causes FTD patients to be more agitated and more confused.  But since you have been on Aricept for some years and you have not had a bad response, you may be able to continue.  Please discuss this with your neurologist.

mish, nomemo gave you good advice re: SSDI.  It is not unusual for them to request further testing.  But under Compassionate Allowances your application should be fast-tracked.

Iris L

nomemo
Posted: Saturday, June 23, 2012 12:44 AM
Joined: 3/21/2012
Posts: 439


yes, iris.  i think i read an article about the contraindications of aricept to ftd patients in a neurology publication and now reading what you wrote got me thinking.  i went on the computer and looked it up and the 2 sites that i read did corroborate what i read and what you said.  i wrote down information in notes and will present to my therapist when i see her on wednesday and ask if she can discuss with her husband (my neurologist).  my next appointment with him isn't until september.  but i guess i can wait until then, too, to discuss with him.
eaglemom
Posted: Saturday, June 23, 2012 9:31 AM
Joined: 3/7/2012
Posts: 2357


We've had the same thing happen - "friends" seem to have dropped us like a hot potato.  However, several close aquaintances have become very close friends.  I hate hate HATE hearing "well he looks good." 

 

And of course there is my MIL who claims "you did this to him,"  But then she denys anything is wrong - but she has no value in our lifes, she is too much of a drama queen to even relate to anyone else.

 

Love our friends - we consider them family.  eagle


nomemo
Posted: Saturday, June 23, 2012 9:47 AM
Joined: 3/21/2012
Posts: 439


mmmhmmm, eaglemom, i know exactly what you mean.  i'm even getting indifferent vibes from my dear friend of over 30 years.  i said on several forums that when i was first diagnosed, because there's no support group to address ftd around here, my cognitive therapist and i formed our own that included a few very close dear friends.  each friend signed a sheet indicating which day of the week i would be called; checking in on me to see how i'm doing, if i'm taking my meds, what do i need, etc.  as well as just social conversation.  that last a while, but i can tell you now that after 2 years, i know longer get a  phone call from anyone on any day....i really don't converse with them at all unless i call them.  that makes be bitter and resentful....they PROMISED they'd do this!  the only one who has always called me on her designated days is my cognitive therapist...she calls me  every wednesday and saturday evenings, without fail.  she's even called me when she's been on vacation!  i tell myself that other people have a lot going on in their lives, too, but, ......c'mon!   ok,,,,i have to get off this topic because i'm starting to get highly annoyed.

 

glad i've made new friends on the boards!


Iris L.
Posted: Saturday, June 23, 2012 11:47 AM
Joined: 12/15/2011
Posts: 16104


eaglemom wrote:

  I hate hate HATE hearing "well he looks good." 

 


I've been hearing this since I was first diagnosed with lupus in 1993:  "You look great!"  Even though I was in pain and couldn't remember and couldn't take care of myself. 

My Mother had to come out from NYC to take care of me.  I was incommunicado for months.  Yet people would also say, "I haven't seen you for a while."  I'd tell them I had been sick with lupus.  Then I would get the "You look great" comment. 

Even the psychologist that I had worked with for two years denied that I had memory problems.  "I see no memory problem here!" she declared.  She said these even though she had read the report of my six-hour neurocognitive testing.

I've had several doctors tell me, "There's nothing wrong with you."  One doctor even told me, "You want to be sick!"  I reported him but nothing was done.

I think the reason for this denial and abandonment is that in our society, we expect the sick to actually look sickly.  When we, who have a hidden disability, don't fit society's expectations of us, they feel uncomfortable.  They can't relate. 

If we were bald from cancer treatment or in a body cast or emaciated, we would get plenty of sympathy.  Perhaps the problem is that we don't want sympathy.  We want acknowledgement that we are still human beings and deserve human kindness and attention.  We want to be validated that we are still of value to the people who know us.

As nomemo said, all she wanted was a brief telephone call one day a week.  That is not too much to ask, but for some reason, the calls did not continue.  Perhaps they did not realize the the calls were supposed to be more than social calls, but checking-in calls for someone who needs daily communication.

I like that idea, nomemo, of a personal support group.  I attend a weekly Women's Peer Support Group.  When someone misses a meeting, I take it upon myself to telephone to let her know we missed her and to see if she is okay. 

Personally, I have decided to rely on professional assistance and contact because I have discovered that my friends are unreliable in this area.  It hurt me very much and I was devastated.  But I must move on and provide the care I know I need and will need for myself.

I gained a lot of insight from reading Steve from San Jose's posts about how he works with his Alz. Assoc. social worker.  I hope to develop a similar relationship with my new social worker.

On the other hand, I think it's great that we can look good for a long time.  We need something to feel good about.  We are taking care of ourselves and following Best Practices.  Looking good may also help to change the perception of how people with dementia are perceived.

Iris L.
 


nomemo
Posted: Saturday, June 23, 2012 1:47 PM
Joined: 3/21/2012
Posts: 439


oh, boy...i could go on and on with this topic!  just the other night i called my friend of over 30 years....was in one of my crying modes and just had to talk with someone...anyone.  she always answers...."what's up?"...when i told her i couldn't stop crying and i didn't know why...i couldn't even begin to think what triggered it...she was very blase' about the whole thing.  even went so far as to change the topic immediately, not offering any comforting or anything...that's what i wanted, reassurance, and i didn't get it.  i told her about an article i had read in the paper from a letter written to Dear Abby about a wife whose husband is 54 and has ftd.  the gist of it was about quality of life and not quantity, as abby gave her "sympathies for the diagnosis" and "now the countdown of his life has begun" or some such thing.  my faith tells me that none of us know when our next breath will be our last, but my friend then said to me, "we're all dying every day, aren't we?"  well, that totally annoyed me and i said to her, "why did you say that to me?  would you say that to someone who had cancer?  i don't think so because that would be so inappropriate so why did you say it to me?"  i knew we were about to get into an argument, so i told politely said my good-bye and hung up.  i haven't talked with her since.  i feel that, for the time being anyway and for my own health, i'd better stay my distance, at least until i can figure it out.  to possibly lose someone with whom i had been friends for over 30 years....we went to dog shows together for over 20 years, i watched her kids grow and now they're in their 30's, i was there when her marriage dissolved.....i grieve this potential loss, too.  i have to figure this out.

 

yes, mish, i do have bloodwork every 6 months, or sooner if there's a change in depakote er dosage, of which recently there was.  i've never had a problem with the paxil and it has really kept my anxiety level at bay.  probably from what i've just said above it may seem that the paxil's not working, but it is.  oh, re: school....i WAS good!  if i ever got into trouble, it was the other person's fault!  LOL!!!  (i love laughing!)


nomemo
Posted: Saturday, June 23, 2012 1:50 PM
Joined: 3/21/2012
Posts: 439


iris, i agree and appreciate everything you said.  thanks!
Iris L.
Posted: Saturday, June 23, 2012 3:22 PM
Joined: 12/15/2011
Posts: 16104


Nomemo, I read that article from Dear Abby too and I was not impressed by her response.  The public, including professionals, don't know how to deal with early stage dementias.  They don't even know such a thing exists.  That's why this online support group is so important and why we must support each other.  We're the only ones who really know what's going on!

Iris L.

nomemo
Posted: Saturday, June 23, 2012 6:29 PM
Joined: 3/21/2012
Posts: 439


i agree, iris.  another thing that peeved me about the article re: the "quality vs quantity" thing....the husband was diabetic and wife wants to forgo his diet at times and let him eat what he wants....i'm not going to be a hypocrit and say that i, as a borderline diabetic, haven't done this, but since my ftd diagnosis i've done it less because 1) i don't want to get full blown diabetes and 2)if i were to get full blown diabetes it could exacerbate the ftd i already have with secondary illnesses, etc.  and who knows where that would lead? 

 

does what i said make sense?  i'm having trouble making sense lately.

 

i guess what upset me about my friend's remark was what i perceived as the lack of compassion that i was looking for with the "we're all dying every day" or some such thing. 


Lisa428
Posted: Saturday, June 23, 2012 8:51 PM
Joined: 12/5/2011
Posts: 795


Mish,

 

Just wanted to add my welcome to the others.  I am glad you've found us.

I don't have ftd.  I was diagnosed in 2000 something with Early-onset/younger onset AD.  I was 53 at the time. I was working as an RN and taking care of my Mother who had vascular/AD.  I am now 58 and doing OK.

I have participated in 2 clinical drug trials.  The first one failed.  Now I am in amother IV drug study.  So far, so good.

Being diagnosed in the early stage of any dementia is good.  You can learn more and make educated decisions about your treatment and your life.

Wishing you the best.  Please, keep posting.

Peace and Hope,

Lisa