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Early onset Alzheimer’s support
Eleanorrossbotham
Posted: Saturday, July 18, 2020 5:37 AM
Joined: 7/18/2020
Posts: 2


 Hello my name is Eleanor. 

My dad was diagnosed with early onset Alzheimer’s when he was 56 years old. I was 15 years old at the time and struggled to come to terms with it all. I have set up an Instagram page called early_onset_alzheimers_support for any families who are currently struggling to come to terms with it all and need some advice from some who has been through it all. Eleanor Xx


AndreeAndree
Posted: Thursday, October 8, 2020 7:57 AM
Joined: 10/8/2020
Posts: 5


Hi Eleanor,  My name is Andrea.  I'm 55 years old and was diagnosed with EOA earlier this year.  I've found so many support groups for caregivers, but none for those of us with this disease.  MEMORY WARRIORS is a support group on Facebook for people with EOA to support each other.  It's a place to ask and answer questions, to help one another, to share experiences, frustrations, and feelings.  https://www.facebook.com/groups/1226076594431372/ This disease is a journey but we don't need to travel alone.
Iris L.
Posted: Thursday, October 8, 2020 2:30 PM
Joined: 12/15/2011
Posts: 16703


Welcome Andree.  I hope you and all new members continue to post here.  


Iris


garciam0530
Posted: Tuesday, November 3, 2020 12:08 PM
Joined: 10/22/2020
Posts: 2


Thank you, Eleanor. Really appreciate your sharing the FB early onset page... I fit the profile
Marag
Posted: Monday, November 16, 2020 2:08 PM
Joined: 11/10/2020
Posts: 1


Hi my name is Elaine I’m 59 and have early onset dementia (not sure if Alzheimer’s or brain damage. Because of COVID-19 I’ve been unable to get to neurologist team at Brigham and Woman. I have a supportive partner , most of my family are not taking it seriously. I’m lonely and scared having bizarre thoughts and wondering if I’m crazy. I feel like my brain is melting. Today I took my morning medicine twice cause even though it’s in a day container I couldn’t remember taking it. Just on phone and when asked my phone number I blanked out. I use to be very social always talking now I fear seeing people and messing up my words. I have anxiety on phone . I just need to know I’m not crazy. I have my big appointment next week thank you for letting me ramble Elaine
BAH1982
Posted: Monday, November 16, 2020 7:58 PM
Joined: 11/16/2020
Posts: 2


Hi Elaine, I feel you need to hear that you are not crazy. My mother was diagnosed with EOA 2 years ago at 59. Your description of how you feel mirrors my mother’s own words. Especially not being around people or talking to people for fear of ‘messing up words’.
Iris L.
Posted: Monday, November 16, 2020 9:04 PM
Joined: 12/15/2011
Posts: 16703


Welcome Elaine.  Yes, it is terrible to feel as if your brain is melting.  But as it happens, many conditions can cause the same feelings, and some of them may be reversible with treatment.  Your upcoming medical appointment may give you some answers.  Be sure to ask a lot of questions.  If you can, take someone with you to help with the questions and answers.  


Do you put your medications in a daily pill box?  This helps me from doubling up on my dosages.  There are strategies to help with the anxieties.  You're not crazy, you have a dementia.  Traumatic dementias usually do not progress if there is no new trauma.  Your neurologist should be able to give you further information.  Please keep us updated on how you are doing, Elaine.  


Iris


jfkoc
Posted: Tuesday, November 17, 2020 12:13 PM
Joined: 12/4/2011
Posts: 19264


since many do not "instagram' I hope that   you will share what is posted there
TayB4
Posted: Tuesday, November 17, 2020 12:34 PM
Joined: 8/8/2014
Posts: 886


Eleanor,

What a great idea for younger family members! I tried to find you on Instagram by the name you gave, but could not. Could you help me?


KawKaw
Posted: Friday, November 20, 2020 11:23 AM
Joined: 11/22/2019
Posts: 341


Welcome Elaine!

I am so glad you found this forum.  I hope you will spend some time here we can get to know you and support you.

It is confusing when our ability to think is impacted.

I lose words often, and must talk around the word to finally get to my meaning.

Before I saw a neurologist for my memory problems, family and friends were focused on reassuring me.

"It is natural to lose some thinking power as you age."  (Was mid-50s at the time)

"It is probably nothing, you're stressed."

But I was certain something was off.

And I was correct.  

Discovering I was correct helped reassure me that my perceptions were not haywire, even if my memory is deteriorating.

Getting diagnosed with Mild Cognitive Impairment allowed me to start treatment with Namenda and Rivastigmine (skin patch used daily).

I am feeling more myself and doing all I can to enable the meds to help me and to help my brain and body function well.

I don't make plans years ahead any more.  I try to remain in the present.  Not too much reminiscing and not too much future thinking.

I am making plans for my future care, should my condition continue to deteriorate.

I am weeding my possessions so there is less to deal with should I need to be institutionalized.

I have a lot of gratitude for the immediate "now."  I enjoy any productivity.

Iris L. introduced me to the concept of Best Practices.  They help shape my day enjoyably and confidently.

Welcome again.  I hope you return often to this message board.


1965
Posted: Tuesday, December 1, 2020 9:44 PM
Joined: 12/1/2020
Posts: 8


Hi my name is John. I was not aware of this chat group or support group until today. I was diagnosed with Young Onset Alzheimers in 2017. Since then I have been helping my local Alzheimer's society with support groups and group meetings about Young Onset. I do notice I have slowed down in the last 3 years. I just keep plugging away everyday and do what I can.
Iris L.
Posted: Tuesday, December 1, 2020 11:16 PM
Joined: 12/15/2011
Posts: 16703


Welcome, John.  Staying connected is important. Are you on any medications?  


Iris


1965
Posted: Wednesday, December 2, 2020 2:07 PM
Joined: 12/1/2020
Posts: 8


Hi Iris. Yes I am I was prescribed Donepezil and Escitalopram when I was diagnosed. I was also prescribed Modafinil just prior to my diagnosis to help keep me awake during the day.
MMain
Posted: Wednesday, December 2, 2020 6:07 PM
Joined: 11/23/2020
Posts: 2


 Hi my name is Melody. I have been diagnosed with early onset Alzheimer's. I was diagnosed in September 2019. I did not need to go on medication at that time. I will be going on a medication next week. I was a finance director for a Municipal Government.  I left employment as I found I could not do my job anymore. I have noticed recent changes in my abilities to remember things. I have times that I cannot do the simplest of things. I have good days and bad days. I am 59 years old.  My Mom has dementia and is a facility. She has progressed a lot. She does not make sense when I talk to her sometimes. However, she knows who I am and she loves me.  

1965
Posted: Wednesday, December 2, 2020 10:54 PM
Joined: 12/1/2020
Posts: 8


Does anyone have issues with balance and co ordination? I have found that other people I talk to who have young onset have these issues also.
Iris L.
Posted: Wednesday, December 2, 2020 11:23 PM
Joined: 12/15/2011
Posts: 16703


Welcome, Melody. I hope you can meet other PWDs (persons with dementia) here and receive support the way I have been able to.  Please keep posting and feel free to begin yoyr own thread by clicking on "Add Topic" on the main Younger Onset site.


1965, I hope your medications are helping you.  Have you been tested for sleep apnea?  It can cause daytime sleepiness.


I had a problem with falls a few years ago.  I took safety precautions in the home and the falls have decreased.  I am very wary of falls because they often require prolonged hospitalizations and rehabilitation.  Sometimes, patients never return to their prior mobility.  I live alone and maintaining my independence is a priority for me.  

Iris  


nancelot
Posted: Thursday, January 14, 2021 9:28 PM
Joined: 1/14/2021
Posts: 4


Hi Eleanor, my DH is 62 and in late stage AD.  My daughter is 16.  It is very lonely for a teenager in a situation like this, their friends simply cannot relate, and it is difficult to invite friends over who don't know our situation and us well.  She feels disconnected socially.  I just requested to follow your Instagram page and hope that my daughter can find some information that will be helpful to her. Thank you  for sharing that!