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Early onset
Sijax
Posted: Thursday, January 11, 2018 4:05 PM
Joined: 1/11/2018
Posts: 1


woukd love to hear from others with this, questions about meds, wether it moves faster, etc
no way!
Posted: Thursday, January 11, 2018 6:21 PM
Joined: 1/11/2018
Posts: 2


II'm looking for the same information.
BlueSkies
Posted: Thursday, January 11, 2018 9:47 PM
Joined: 2/24/2016
Posts: 1096


Hi sijax and no way. 

Not sure I exactly understand the questions, but wanted to say hello and welcome to you both.   

Not sure what you want meds for.  Did you ask your doctor this question?

Also would ask your doctor what he thinks about "moves faster".  I guess you are talking about progression.  But don't think anyone really knows answer to that.  I think it is pretty individual.  Everyone is different.

Again welcome and I hope you will both post more about yourselves here.


alz+
Posted: Friday, January 12, 2018 6:46 AM
Joined: 9/12/2013
Posts: 3556


early or younger onset does not mean a person will die faster. I understand there are some people who do decline and die in a shorter time than others, but this true for every illness.

Are there medications to treat dementia? Sort of. Again some people do really well on the medications available and others can not tolerate them.

Look forward to knowing more about your situations.


dsherry
Posted: Sunday, January 14, 2018 8:48 PM
Joined: 11/15/2014
Posts: 2


My wife was diagnosed with early onset at the age of 58 about two years ago. It has progressed. I've been told it progresses quicker in the beginning, then slows down. Life expectancy is much shorter than with late onset (8 years vs 20 years on average). I wish I could add more but that's my understanding from a number of studies/input sources.
Horse Lover
Posted: Tuesday, January 30, 2018 8:54 PM
Joined: 11/4/2017
Posts: 124


Sijax and No Way.  I was recently diagnosed and I remember how it blew me away.  I found the alzheimer's association website and 24 hour help line to be the most helpful.  Keep in mind that in regard to the helpline, they have trained social workers who can call you back and answer pretty much EVERYTHING that you have questions for as long as there is a known answer.  I hope this helps you as much as it helped me.  I'm pretty sure that you're feeling pretty alone and depressed right now when it comes to your diagnosis.  If you are, please call that help line.  They were awesome!!!
Mimi S.
Posted: Wednesday, January 31, 2018 9:39 AM
Joined: 11/29/2011
Posts: 7035


I am hoping to find research on any difference in how fast dementia progresses in those with and without amaloid plaques.. Now that it is a little easier to get the PET that shows this, we may have more  cases to go on.  Before this it was that progression takes what it takes.
leftoutknitter
Posted: Wednesday, January 31, 2018 12:53 PM
Joined: 8/5/2014
Posts: 6


I thought this board was only for people with dementia, not caregivers.
kmedavis1
Posted: Sunday, February 4, 2018 9:36 AM
Joined: 7/7/2017
Posts: 8


dsherry - 

Sorry to hear about your wife.  My husband is 59 and has been symptomatic for almost 6 years, just officially diagnosed in May of last year.   I'm finding he slides in spurts...the biggest being every 6 months or so where we address medication changes. He is still functioning fairly well overall, though. There are daily struggles with energy, speech/language and memory of course, but he is able to do things around the house and run errands that are close by.  I think without medication he would be considered moderate stage rather than mild stage.  There have been time where he has forgotten his meds and has been devoid of interaction and personality.  the meds let him be him as much as possible. Though, I have been told they only mask symptoms; they do not slow the disease. 

How long was your wife symptomatic prior to diagnosis?  The docs at Mass General don't give timelines, so according to them he will live a long time with this disease. Research can state otherwise.  At any rate, we prepared for the future to the best of our ability right now, and aim to live in the moment as much as possible.


rgregoryb
Posted: Sunday, February 4, 2018 6:35 PM
Joined: 3/27/2016
Posts: 139


leftoutknitter wrote:
I thought this board was only for people with dementia, not caregivers.
Look one board up, " I have Alzheimer's or other dementia" this is for caregivers and PWD

Iris L.
Posted: Sunday, February 4, 2018 8:09 PM
Joined: 12/15/2011
Posts: 16451


This board can be confusing at times.  Both patients and care providers post here.  Whatever your concern, leftoutknitter, just post, and you will receive responses.  How are you doing?


Iris L.


alz+
Posted: Wednesday, February 7, 2018 5:50 PM
Joined: 9/12/2013
Posts: 3556


Horse Lover  - I have never called the helpline, never thought even thought about it.

Thank you for posting how awesome the support is! Social workers? I will add the number to my phone (if possible! ) tonight.

Part of me is just afraid of telephones, part of me is always nervous when disclosing an ALZ diagnosis - even to an ALZ help line, it makes it so real.

Mimi - the pet scan new info, doesn't it feel like a breakthrough  on cause and effect is soon?

Iris - so glad you caught that person who might have wanted some help. The way you put it was so kind and comforting. 

*****

No one knows how the condition will affect them, each person has to find what helps them function and feel comfortable. If the meds help you that seems the easiest thing to do.

It is the uncertainty, and the fears I dream up that have been my biggest challenges, I think I could have adjusted better and sooner if I had some kind of coach. The boards here have saved me over and over, each person's journey helps many others. 


Tinkerbell8
Posted: Saturday, February 10, 2018 5:48 PM
Joined: 2/10/2018
Posts: 1


My husband got diagnosed with MCI at 54 years old.  It has been 2 years now.  He is on medication to hopefully delay progression and another to control his paranoia/obsessive thoughts (mostly that I am having an affair or others are conspiring against him-with me).  I feel very alone sometimes and I am having trouble dealing with the mood swings and accusations  We are in the process of moving, so there is a lot of stress right now exacerbating his symptoms.  Does anyone have any suggestions on how to deal with the mood swings, accusations and lack of remembering what he says/does...
Iris L.
Posted: Saturday, February 10, 2018 9:12 PM
Joined: 12/15/2011
Posts: 16451


Welcome, tinkerbelle.  If your husband has obsessions and paranoia, he is most likely past the point of MCI.  If you visit the Spouse/Partner board, you will see that what you describe is not uncommon.


Your husband also most likely has anosognosia, which is a characteristic of the dementias in which the PWD (person with dementia) is unaware of having dementia.  He truly believes he is fine.  You will have to learn news ways of communicating with him.  ~70% of PWDs have anosognosia.  This article can explain more about anosognosia.


http://alzonline.phhp.ufl.edu/en/reading/Anosognosia.pdf 


Iris L.


Michael Ellenbogen
Posted: Sunday, February 11, 2018 9:28 AM
Joined: 11/30/2011
Posts: 3189


 I must tell you Iris that I read that article and I am not sure the numbers are right. While it may be true in the later stages. I think its only about 10 -20 person in the early to mild from what I remember. I have also gotten to know many folks with the disease and they just did not seem that way. Unless I was meeting only a special part of the dementia population. In fact I olny ran into a few ffolks who fit that bill. I see more on this site then in the preople I actully get to speak to.  


Andrew60
Posted: Sunday, February 11, 2018 11:33 AM
Joined: 7/17/2017
Posts: 342


Iris - Thanks for posting the link with a detailed explanation of anosognosia. However, I agree with Michael, as the percentage of folks presented in the link with this condition seems to be higher than what I have  read in other studies. Having this condtion someday is a great fear of mine,
Iris L.
Posted: Sunday, February 11, 2018 4:06 PM
Joined: 12/15/2011
Posts: 16451


I don't think anyone can be sure of the precise number of PWDs with anosognosia.  I agree that this is more of a problem in the later stages.  It seems to me that almost 100% of the new caregiver members post something about their PWD being in denial.  I feel that I must correct this misperception, because it is not denial, it is a characteristic of the brain damage. They are angry and frustrated because they believe their LO is in denial.   Anosognosia is found in other diseases besides the dementias.  I know that I had some anosognosia myself, in earlier years, because I was unaware that my memory loss was noticeable by other people, who were talking about me behind my back.  Most of the new members are themselves unaware of so much about the common characteristics of the dementias, that they have a list of problems which they believe to be unique.  If they could learn that what they believe to be unique is actually common, they could be better equipped to address their issues, IMHO.


I post the article because anosognosia is so unusual, I don't want anyone to believe I am making it up myself.  There are more articles about anosognosia that I have found.  This article was the first one that I read about anosognosia when I first came to this board.  The earlier board members believed it was important for the new members to read "Understanding the Dementia Experiences" and "Creating Moments of Joy" and Coach Broyle's "Playbook" and to learn about anosognosia.  The important thing for new members to realize is that the old ways of doing things no longer will work, and they will have to learn new ways of communicating and they will have to work within the new reality.  I think that is the point the old members tried to make.  I am still working on myself to accept my new reality.  It is a work in progress.  One important reality is that what is important for a patient (me) can be very different from what is important to a caregiver.  I am sorry that more patients are not posting.  I learned so much about how to take care of myself from the other patient members.  I learned about Best Practices, about dealing with anxiety, about alternate therapies, about finances and legal affairs, about relationships, about expectations and about making preparations for the future, along with dealing with everyday life.  Things I could not have learned from the outside world, because I looked.  There was little there for me.


Iris L.


strnfamily
Posted: Monday, February 12, 2018 3:46 PM
Joined: 2/12/2018
Posts: 1


Im new here. We just got our PET scan results back today and my husband was diagnosed with EO of Alzheimer's. He will be 55 in April . We are looking back at things and we think he may of had the start about 5 years ago. We have a almost 7 yr old daughter. Im looking to find out what different drugs or treatment trials you guys know of and what is working best for ppl.

thank you Tracey


kmed123
Posted: Monday, February 12, 2018 9:45 PM
Joined: 7/7/2017
Posts: 8


Hi Tracey,   

My husband was diagnosed with MCI at 57 and AD at 58 but began to show signs at age 53.  At that time our daughter was 11 years old. Once diagnosed, he started on Donepezil (Aracept) in the mornings (it can cause wild dreams fi taken too close to bed). He started out slow and only increased to the full 10 mg after the 5 mg stopped being as effective. Our thought was why give more than he really needs? This med has some GI side effects that are worse for some than others.  My husband has these side effects but it has settled down a bit the longer he was on the med. He  takes a slide and need a change in meds every 6 months or so.  Now he also takes Namenda twice a day. 

We have not yet decided to participate in any trials, though we look regularly.  He has concerns over adding experimental drugs when he feels like he is functioning okay and feeling good.  I am interested in learning more about this pacemaker trial recently in the news. We'll see how that goes...

One thing we did do is an extensive change in diet...eliminating almost all sugars and carbs, very limited alcohol, increase in water intake, vitamins D, Bs, Omega and Tumeric, as well as use of coconut products.  Cutting sugars and carbs made the biggest difference.  Exercise also seems to help keep him positive.  There is a video series called Awakening from Alzheimer's that highlights a number of alternatives to pharmaceuticals.

Your journey will be challenging with a young child. Mine has struggled through this diagnosis though this disease has been around for 6 years now and it is just how she knows her dad to be. To say it  is hard to keep your act together for everyone when your world is falling apart is an understatement. Be sure to take care of yourself, too.

Best of luck.


Shalehr
Posted: Saturday, February 17, 2018 7:55 AM
Joined: 2/17/2018
Posts: 2


Hello, I am new here as well. My situation is very close to yours, except my kids are grown. The medications my husband is on and I found a huge improvement are mematine and donepezil. He was recently put on seraquel for hallucinations. I hope this helps.

 


Shalehr
Posted: Saturday, February 17, 2018 7:58 AM
Joined: 2/17/2018
Posts: 2


My husband has dementia and would never be able to communicate on this site. I would think having both caregiver and patient would be beneficial for information.
niocalla
Posted: Saturday, March 10, 2018 10:30 PM
Joined: 11/18/2017
Posts: 1


My DH was dx at 54yo, we have college age kids..I've been reading these posts for several months and would like to thank all that contribute.. The posts have helped me greatly.
 
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