Welcome to our online support group, Vermont Girl.  Yes, it is a struggle.  I have a diagnosis of cognitive impairment not otherwise specified, but I can tell that things are changing with me.  I have been fairly stable for the past nine years with Best Practices.  Can you tell us more about yourself?  How are you managing at home?

Iris L.

Hi Vermont Girl.

Welcome to our world.

I love Vermont, especially the area around Stowe.

Most important, whaT WAS THE PROCESS OF YUR DIAGNOSIS???

Do contact your local Aliz. Assoc.  If you don't have the #, our help line has it; 1-800-272-3900

Waiting to hear more from you.

I manage with the help of family and friends.  This all started for me in early 2016 when I had some trouble with navigating.  My family started noticing small changes.  Since I am stubborn, I suppressed it all for months until I finally had to admit there was a problem.  The diagnosis, the week of my 55th birthday, was such a shock for me, especially since the disease was already considered moderate stage.  Since then I have been trying to stay positive and do a lot of research for myself and support research for this disease.  My Alzheimer’s walk team raised the most funds at our our community walk last fall.  I plan to do it again this fall.

Please share your story.

Welcome, Boston.

Iris L.

Welcome to our online support group, Tiffany Jo. One of our members, Myriam, was part of the DIAN study.  She was positive for the presenelin 1 gene.  If you want to begin your own thread, you can go to the main Younger Onset AD board and click on the green "Add Topic" tab.  Then post your message in the text box and click "Post".    More members will see your post and respond.

Iris L.

Hi. I too am new here.  My husband is dealing with Frontal Temporal Dementia.  It too is an early onset dementia. It doesn't affect memory at the start.  It presents in 3 different ways.  His presented with the language variant.  He is loosing his ability to communicate.  It has affected both his hearing and speech. 

I have a friend  who was diagnosed with early onset Alz.about 5 years ago.  She seems to be maintaining and doing ok.   I hope you are too.

I attended my memory club today.  They discussed a presentation from last night by Dr. John Ringman, a neurologist at Keck USC Medical Center.  He said that the future focus will be to determine which  genetic material is specific for Alzheimer's Disease, and to manipulate that genetic material so as to inhibit its expression for Alzheimer's Disease.  The focus in the future will be on prevention of Alzheimer's Disease, not treatment.  

Iris L.

Hi, i am new here too. I just joined this evening. Also trying to get to know the site.

I have had Early Onset symptoms for probably two years. I was formally diagnosed in February.

At the moment I am probably stage 3, maybe a little of 4. The confusion, and forgetfulness is driving me insane lol. I'm looking for anyone to chat to who feels as frustrated as I do so that we can compare notes, tips for coping and maybe ven't together a little bit

Scilla

Hi everyone. One of my problems has been that my family and friends have all been in denial. Because my brother and sister have EVA they said I just think I do.

NNow I have been diagnosed and the progression is showing so at least they are not in so much denial.

Welcome, Scilla.  I'm sorry for the loss of your brother.  And I'm sorry your family is not more supportive.  You will have to reach out to others for support.

I believe it is imperative that you know what gene you have.  Do you have any children?  It is important that they know, for their own future.  I am not suggesting that they have genetic testing now, just that they know about you and the family's genetic history.

Even though you are sure what you have is genetic, it is important to rule out dementia mimics and conditions that might be treatable, such as B12 deficiency or hormonal problems.  I'm sure you know that medications can impair memory, along with stress.  Were you a caregiver to your brother and sister?

How are you doing now?  Did you stop working?   Are you on medication? Do you receive a disability pension?  Do you live by yourself?  Please tell us more about yourself.  You can begin your own thread by going to the main "Younger Onset AD" board and clicking on the green tab on the upper right that says "Add Topic."  Post your heading, and then post in the text box.

I have a diagnosis of cognitive impairment not otherwise specified.  I am on Exelon patch and Namenda XR.  I was doing fairly well until last fall.

Iris L.

TThank you Iris,

II'm losing the ability to actually use technology. I get too confused but thought I would give this a go.

MMy brother and sister, in fact all of my family live in the UK, including my daughter who was looking after me there and finding  me help to get diagnosed. I stayed 4 months this time but was not able to get assistance with my own housing which was the door to get all testing done. 

II could have stayed with my daughter but her husband, although a nice guy doesn't like people living with them.

SSo it was back home to Hamilton Missouri which is actually in the middle of nowhere lol.

II have no medical insurance, we can't afford it. Hence my trip back to UK.

II will look for the thread you mentioned. Thank you.

Welcome Vermont Girl, Boston20, Tiffany Jo and Scilla,

Do any of you have those dark dental fillings inside of your mouths? If you have them it may be the root cause of your issues since they contain 50 percent mercury and constantly release into the body. After losing my job I was diagnosed with Younger Onset Alzheimer's when I was 56. I noticed issues years earlier and had PET scans, MRI's and neuropsych tests and also a spinal tap which showed I was only borderline.

About a year after my diagnosis, after much research, I had my mercury dental fillings removed. My conditions improved and now my diagnosis is mild cognitive impairment. I think my cognitive thinking is fine most of the time when I take my supplements and while continuing to detox.

If you have these fillings, see http://amalgam.org/education/scientific-evidenceresearch/results-removal-amalgam-fillings/ or

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

I have more links to this type of information and videos about this in my July 4, 2015 blog entry at http://thestevenalztreatment.blogspot.com

There are lots of supplements you can take as well even if you don't have any amalgam fillings but you may still be suffering from mercury from other sources and require detoxification. They are in the books listed on my blog.

Welcome, TreeGraham.  Is your husband able to join us patients?  We would like to meet and support him.  We are all working to handle our illness and our new challenges.

Iris L.

Welcome Tree Graham.  Were so glad you found us.

What was your husband's process of diagnosis?

Do hope he can join us.

Welcome to our group, Lisita.  I'm sorry you have to be here.  I'm with you.  My neurologist says I have cognitive impairment; the geriatrician said I have dementia.  I decided, if I have dementia, I'm not going down like a victim.  I decided I would fight for my life!  I've been fighting for nine years.  I hope you will continue to share with us.  BTW, I was a pediatrician in my career.

Iris L.

Hi Scilla,

I would love to chat, as feel your frustration. I am divorced and 50, wondering what to do! Can't read a book, carry around note pads..crazy. Not sure how to contact you, new to this whole thing, but I'll try

Heyno