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does anyone feel like since being dx they have been branded? we are being forgotten before we forget?
Sylie
Posted: Tuesday, July 10, 2012 9:07 PM
Joined: 7/2/2012
Posts: 153


About your headaches...I had severe migraines, 2 sometimes 3 a week for years,  they only stopped about 2 yrs ago,  I used to use anything lavender scented,  Glade has a really nice cone shaped room air freshener that is lavender/vanilla, always seemed to help for me,  of course nothing works as well as the real thing but the scent of lavender and the scent of vanilla just seems to help in any form.  I even had a bottle of lavender bath salts I got for Christmas one year that I would gently sniff until the headache eased (usually could feel a difference within 3 or 4 whiffs depending on the severity)  Just a thought,  never know what will work and those cones cost like $1.25 or such a matter,  can't hurt to try
mish
Posted: Thursday, July 12, 2012 1:58 PM
Joined: 6/21/2012
Posts: 439


I get exhausted from doing too much/ mind and body,  spray alittle mix I made- a few drops of lavender oil with water  in a dark room  and lay down. i put on  a relaxation tape and  chill.   syl. is right about the lav. cones, I have them and they are cheap and  good- they just burn  pretty quick.
mish
Posted: Thursday, July 12, 2012 1:59 PM
Joined: 6/21/2012
Posts: 439


Md appt.  tomm. >nervous, find out MRI stuff, new med -  fun stuff!!!!!!!!  would rather go to the dentist!
Sylie
Posted: Thursday, July 12, 2012 4:44 PM
Joined: 7/2/2012
Posts: 153


Yeah those cones do disappear quickly,  I keep them closed when not using them therapeutically so that they will last longer.  Thankfully they are cheap lol
sia2011
Posted: Thursday, July 12, 2012 6:14 PM
Joined: 7/6/2012
Posts: 4


hi there

i just came down stairs tio get out of the way for my daughter and her family to eat dinner and her and i really had a big blow out today. i have 3 adult children and i know they talk to each other and not to me.cause its about me.i am sooo mad right now i could scream!!!!! yes i do feel like once you have told people they look at you queerly.i've had this disease now for 1 1/2 yrs and i dont think iam even staying at the same level sometimes yet i can watch my two grandbabies who are 15mos,aprt sorry iam crying so i probably am not making any sence? i used to be a really good speller and that is gone.did you get a streess test? my dr. said that i am a 34 normal is 14 max. my daughter says to me alot i have told you this about a hundred x's now!!!!!i doubt myself anymore and wonder am i really being that bad???she's a dr.and she not only has the stress of that our grandson was the 1st miracle (she had had 5 miscarriages while in university.Sia came 15 very short months later and it is hard for me to see her doing everything my grandson was very jealous he's do much better now. i'd really like to be in a group setting of some sort i really just need to have a good cry.sorry sia123



Thomasina
Posted: Thursday, July 12, 2012 6:42 PM
Joined: 6/13/2012
Posts: 12


Hi Sia,

I just stumbled onto your post and wanted to reach out.  I'm sorry for the frustration you feel, and I'm glad you shared it.  It's helpful to me as a caregiver to be reminded of what it's like from the patient's point of view - both are hard.  I take care of my Dad who has deteriorated a LOT in the last weeks.  I have been very disappointed with how I'm handling it, and how I respond to him.  Frustration, exhaustion and fear of the unknown make me short-tempered, and it is tiresome to have to explain basic things again and again.  Each day I think I'll do better and then there will be an incident of some kind and I'm shocked at the words coming out of my mouth.  I seem unable to control it.  I believe my poor ability to deal with things has contributed to his deterioration.  So, while I have no words of wisdom, I just wanted to say, "hang in there!"  Wish I could give you a hug!


Iris L.
Posted: Thursday, July 12, 2012 7:35 PM
Joined: 12/15/2011
Posts: 18508


sia2011 wrote:

.. i'd really like to be in a group setting of some sort  


Sia, living in a home with very young children can be overstimulating for a person with dementia.  It might be a good idea to begin to look into your options for other living arrangements.  You can move into assisted living with a memory care section for the future.  There are people available who can help you make a good choice. 

Iris L.


mish
Posted: Saturday, July 14, 2012 5:08 PM
Joined: 6/21/2012
Posts: 439


 after the fight how  do you feel-what feelings/thoughts arise- without taking too long on thinking  on what happened- just feel-   what comes up?  then just  sit with that  for a bit.  accept the feelings without judging them.  and  then let them go.  it is

a great tool to use.  feel the emotion,  accept without judging it  and releasing it.  you can try it- 

I know  she is a   doctor yet she is a daughter first.  it must be so hard- for both of you. 

here for you

namaste


amoore1317
Posted: Sunday, July 15, 2012 9:53 PM
Joined: 4/19/2012
Posts: 16


Yes,yes, yes! Your post hit home. My husband has had early onset AD and has not worked for 3 1/2 years. About a year ago I retired to take care of him full time. I have categorized friends. There are the curiosity seekers who appear out of nowhere and express sympathy but after one outing or encounter they disappear.  Then there are the ones who are so saddened or uncomfortable about it all that they just leave us alone. By far the best are old friends from church who welcomed us back after a 10 year absence. No judgement for our time away and total acceptance of who my husband is now. Those are the people we need in our life. They don't show pity, they just treat us as normal. When people ask what can they do, I think the answer is invite us to lunch or dinner somewhere one on one or with a small group. People who say "call me" or "we should get together" are not helpful. I just don't have the energy or will to be the initiator. So I'm finding that the small number of old friends are the best and I don't worry about the others.
mish
Posted: Monday, July 16, 2012 12:00 PM
Joined: 6/21/2012
Posts: 439


gotta love those-'call me- well  DO lunch"  yes and my secretary will call yours and set it up"

  you are lucky to have the people in your life that you do-   

forget about the rest of them- they can keep DOING lunch.  !

 


nomemo
Posted: Monday, July 16, 2012 3:07 PM
Joined: 3/21/2012
Posts: 439


amoore1317 - i totally agree and love your categories!  hope you don't mind if i use them!
Susie Perkowitz
Posted: Wednesday, July 18, 2012 3:44 PM
Joined: 7/18/2012
Posts: 2


I am the only caregiver for my father with alzheimers. Even though I am very young I think I have it too. I have never been able to hold a steady job or do anything useful my entire adult life.

 Susie Perkowitz


Mimi S.
Posted: Wednesday, July 18, 2012 5:05 PM
Joined: 11/29/2011
Posts: 7027


Susie,

 

I'm afraid your post might get lost among the other comments on this board.

If you are afraid you might be getting dementia, please follow up. Please call the help line:1-800-272-3900 and discuss this.

 

You apparently have had problems for quite some time. Have you had any testing done to figure out why?

 

From your library please get a copy of The Alzheimer's Action Plan by Doraiswamy & Gwyther of Duke Univ. Do call the hot line first.


mish
Posted: Wednesday, July 18, 2012 7:42 PM
Joined: 6/21/2012
Posts: 439


thank you so much for sharing.     I am glad you   felt safe to share.   peace always.
John50
Posted: Thursday, July 19, 2012 3:18 AM
Joined: 3/14/2012
Posts: 140


Hi Mish. I have been very active in support groups and other online support and communication activities and this is a common theme to talk about the stigma and how many either seem to be in denial there is anything wrong with you or they pull back not really know what to say or do around you. It has always been a bit of focus for me but I certainly don't have a lot of answers other than being open, honest and sometimes you find out who your real friends are at this stage. Removing the stigma is a major part of the theme of World Alzheimer's Month in September by the association. I know I have been asked to talk on local media about overcoming the stigma and I still don't know quite what I am going to say but it will come. Take care and jump in here any time! BTW, I am 53 and was first diagnosed in 2007 at age 48 with FTD. Now is known to a high degree of certainty that I have atypical early onset alzheimer's disease.
Iris L.
Posted: Thursday, July 19, 2012 12:33 PM
Joined: 12/15/2011
Posts: 18508


John50 wrote:
 Now is known to a high degree of certainty that I have atypical early onset alzheimer's disease.

 

John, can you tell us how it came to be known with a high degree of certain that you have atypical early onset Alzheimer's disease?  And what is atypical about your onset? 

Iris L.


mish
Posted: Thursday, July 19, 2012 1:38 PM
Joined: 6/21/2012
Posts: 439


thank you John, I have told others  -when they ask  why havent   people seen me or   what did the doctors say- I tell them the truth-  dementia. responses are all over-but mostly  no- you aare so you- you look fine.    and etc.

but I say the truth.  I cant control others  emotioons or reactions.  all I can do is try to help others know and educate. that is it. I  recently received a twist in my dx  so I would like to hear what you meant about the atypical part if you dont mind? good luck with everything.


John50
Posted: Saturday, July 21, 2012 1:50 AM
Joined: 3/14/2012
Posts: 140


Iris L. wrote:
John50 wrote:
 Now is known to a high degree of certainty that I have atypical early onset alzheimer's disease.

 

 

John, can you tell us how it came to be known with a high degree of certain that you have atypical early onset Alzheimer's disease?  And what is atypical about your onset? 

Iris L.
 

Yes I can Iris, it was believed by one of the country's expert physicians on dementia from the beginning that I suffered from the same thing my father was in late stages with at the time of my diagnosis, a genetic link in other words. My local neurologist believes the same thing. When my father passed away in March 2010 I arranged for his brain to be donated to NCRAD for research purposes. I was told I would never get any information, the donation was for research purposes only and I was ok with that. Last fall for some reason they sent me a copy of the complete autopsy results on my father's brain and it showed he died of Alzheimer's Disease. So now doctors and myself believe that I have an atypical type that hasn't been diagnosed a lot anyway at the stage I am currently in because my PET scans are very different from anything they normally see and resemble FTD more than Alzheimer's at this point. It has been nice to have some answers though that are as good as they get without a biopsy (which is never done by good doctors) or an autopsy which does me no good at that point.

Iris L.
Posted: Saturday, July 21, 2012 1:24 PM
Joined: 12/15/2011
Posts: 18508


John50 wrote:
. Last fall for some reason they sent me a copy of the complete autopsy results on my father's brain and it showed he died of Alzheimer's Disease. So now doctors and myself believe that I have an atypical type that hasn't been diagnosed a lot anyway at the stage I am currently in because my PET scans are very different from anything they normally see and resemble FTD more than Alzheimer's at this point.  

Thank you for clearing that up for me, John.  The reason I asked is because I remember from reviewing the Archives that two of our members, Mimi S and another, who I believe was Mike Donohue, mentioned that they had "atypical" Alzheimer's because they are not progressing.  I wonder if yours is the same atypical type of AD as theirs.

Iris L.