New diagnosis, new to group. Having a rough ugly cry day.

Welcome to our online support group, breenann. I'm sorry you have received this diagnosis and have this gene. Did anyone in your extended family have EOAD?

There are a lot of steps that you and your family will need to take. You can speak with a Care Consultant from your local chapter of the Alzheimer's Association. She is a social worker with special expertise in caregiving and family dynamics. She may be able to refer you to local resources.

Since you are working now, you may request some work accommodations. Go to askjan.org and search for accommodations for Alzheimer's Disease or MCI.

If you believe you can no longer work, you can request short term leave of absence/ sick leave. During this time you can make application for Social Security Disability Insurance benefits, if you are eligible.

There is a wealth of knowledge on these boards. Don't hesitate to post questions or concerns.

Iris

Hi--I'm 45 with a 24, 17, and 7 year old. I was diagnosed with early-onset Alz a week ago. Every day so far has been a rough, ugly-cry day for me too, I'm sorry. There is just so much to think about.

I haven't decided whether or not to do the genetic testing but went through a slew of similar "rule everything out" testing...even my neuro (my third) didn't think it could be Alzheimer's until they got a new MRI and did the APOE genotyping...I had an amyloid PET a few weeks ago that lit up and that was that.

Just wanted to say that I'm in the same kind of headspace and you aren't alone--hopefully we can find the right kind of support to help us navigate the challenges we'll face. We just have to fight as hard as we can <3

Breenann, I called the Helpline for you and yes indeed, there was a long wait before I spoke with someone. She wanted to know your zip code in Utah, of course I didn't know, so I asked her to check fir an early onset support group in Salt Lake City. There was none that she could find. I have a few suggestions for you.

You will naturally want to find others like yourself. When I thought I had AD, I read a lot about people with terminal illnesses, of all ages. I discovered they mostly wanted to keep to their usual routines and to spend time with their loved ones.

I suggest you call the Helpline again, as often as necessary, and ask for what you want. Don't give up. The Care Consultant can be of great help and a great resource.

Have you heard of the DIAN study? They might be able to enable you to meet others like yourself.

There is a wealth of information on these boards. Ask your questions here and on the Caregiver boards.

You might ask around for a counselor who works with people with serious illnesses.

If you have more questions, please post.

Iris

I feel that in my bones…I lost 2 precious years trying to get someone to listen to me. After my diagnosis appointment we were leaving the room, I told my neuro "I hope this is the worst thing you had to do today, but I want you to know how much it means to us that you listened to me." I had a call with the local chapter of the alz association and she was pretty much stumped…she's supposed to be doing some "research" for me to find some online support groups as the only one for EO in my entire state is 3 hours away, but I haven't heard from her in two weeks. Told my dad and he's "praying for me" and reminds me to be grateful for everything I DO have. Told him that I understand it's coming from a place of love but right now I'm having a whole lot of trouble pulling something positive out of this.

I took off half a day yesterday to lay on the couch and cry.

Hi jennyV,

I did and I am still going to Mass General in Boston as well. I got my second opinion there through a behavioral neurologist. My previous one from another hospital neurologist was quite angry when she read the report of what he said. It took a year and a half before I was actually diagnosed. I was diagnosed after my first lumbar puncture but that neurologist disagreed while her fellow said I have dementia and there is no treatment for this. When the MGH doctor read the report he suggested that I go on Aricept to slow the progression. i did have another Lumber puncture about year after the first one. This results were not good confirming that I do indeed have EOA. I have had concussions the last 6 years or so. My issue still is that I feel like I am being stigmatized with this Functional overlay/Functional Neurological Disorder. Reason why is that I was falling down flights of stairs and hurting myself due to these falls. When I reached out to the neurologist i am seeing He reached out to another neurologist. I couldn’t walk right so it looked a little bizzare. I complained of my foot being painful. Again I was diagnosed with Functional overlay. I didn’t believe this so, we went to urgent care to find out ahy I have pain and trouble walking. Come to find out I have/had endochroma in my big toe. It was benign. I surgey to remove this. and I am walking better with a walking boot. So far no falls. I did bring up to why I was diagnosed with this again and my neurologist said because of my walk.. Ugh!!!!!! It’s like you have to fight in to what you believe is not real.

Sorry for whining..

Hi JennyV,

I and my family were the most advocates. I also had other medical people disagree with her too. When I was diagnosed with EOA I also suffered other major health issues. I was running at the time and rarely took any medication or vitamins. Until all this came to a bubble that bursted.

I am glad that he was able to find the right medication to help him.

You find amazing community of people on many of these boards