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do I have the gene for younger onset?
alz+
Posted: Thursday, September 28, 2017 4:46 PM
Joined: 9/12/2013
Posts: 3608


My daughter is visiting and we have had a wonderful time. We went for a walk today and she met the hospice nurse.

Then we were in the car and she told me about forgetting things, about a couple incidents that were so familiar to me I had to come home.

She remembered more of these incidents, the things that just "feel different". She mentioned her doctor had told her not to worry about it and I said, "It bothered you enough to mention it to your doctor."

She has overwhelming anxiety and thinks that is just how life is. I am sick to my stomach. This started happening to me at her age, in my mid 40's, the odd stuff.

Has anyone here known that their child also has dementia? I have not had the gene test done, more important she would have it done if she wanted. She has tried to minimize her anxiety problems and is still highly functioning at work etc and brilliantly figuring out how to make my  life easier here - but I remember those things that were not regular forgetfulness. I  am very upset and worried.

any thoughts?


Michael Ellenbogen
Posted: Thursday, September 28, 2017 8:17 PM
Joined: 11/30/2011
Posts: 4456


I would not worry about it. There could be so many reasons for that. I would recommend she gets in a clinical trail and let them do al the testing and create a baseline for he. As we get older we all start to have some difficulties. It could also be stress related to you and other things that are contributing to her issues. I do know someone on the board but it was in her entire family. Only 2 percent of those with Alzheimer’s fall in that category. 


llee08032
Posted: Friday, September 29, 2017 7:26 AM
Joined: 5/20/2014
Posts: 4408


I'm sorry to hear about your daughter having memory problems. My 37 y/o son began noticing he was forgetting things and exp-ing memory loss shortly after my dx. I can't figure out if it is related to anxiety or not. Also can't recall that I noticed him forgetting things and I have developed a radar for noticing others forgetting things over the last year or so. I experienced symptoms in my late 30's so it is frightening that he may have inherited whatever it is I have. 

Love, LL


Mimi S.
Posted: Friday, September 29, 2017 9:06 AM
Joined: 11/29/2011
Posts: 7027


My advice is: when worried, get tested. Do not buy that, oh it's jut stress. It may be but if not, you may be delaying diagnosis by a year or so.

And if you can follow Michael's to get in a clinical trial, even better.  You get state f the art testing at no cost to you.

It's natural for those of us who are PWD to have our children worry.
llee08032
Posted: Saturday, September 30, 2017 9:39 AM
Joined: 5/20/2014
Posts: 4408


Alz+,

I hope you have a wonderful visit with your daughter!


alz+
Posted: Monday, October 2, 2017 10:16 AM
Joined: 9/12/2013
Posts: 3608


thank you. the idea of joining a trial is so smart, whether or not she would do  it???

I developed another UTI, same old story, pain, no sleep, wetting bed etc so daughter took me to walk in clinic which was open sunday afternoon. I got antibiotics and again they make me irritable, very shakey and feel cold and  weak.

My mental stability crashed over abut 5 hours and it upset her terribly, and then I realized she is imagining herself going through this in the future. Also I never ranted like this as her mother.

She did visit a friend and gave herself a break from my breakdown. I don't want to have my kids live in fear.

I am sure my son has concerns for himself too. I wonder if I should have the gene test because if it was negative I could tell them that, there would be no possibility of them having the gene then. if it is positive I would not mention it. I probably will not do it.

Found out I do not have the capacity to convey my intense behavior is because a UTI somehow escalates all anxieties and frustrations. 

I am still broken at the thought of maybe giving it to my kids. I did not know my dad would get it, much less me.

so I am in bed shivering from the antibiotics and avoiding everyone as much as possible. It takes 2 weeks to get my body functioning again after a UTI and antibiotics. I have yogurt and probiotics, lots of water, and am now managing it myself.

I think I am somewhat skilled at calming myself now and shutting the bedroom door helped a lot - no noise, no lights, no conversations - but still I went off and it took all I had in me to calm down.



alz+
Posted: Friday, October 6, 2017 4:55 AM
Joined: 9/12/2013
Posts: 3608


I am done with the an UTI now and still drained, and tired from having wonderful visit with my daughter.

after she told me about her symptoms I shook for hours. it was like I found out I accidentally poisoned her. since Hospice started we went to lawyer again to change a couple things and my son is going to set up a phone meeting with lawyer over financial stuff.

when I see myself in photos now I look different to me. Hollowed.

the spasms in my feet and ankles persist, feels like my legs are full of fear.

so house is quiet again, it was an important visit. really appreciate being able to come here, this was really hard on me.

love you all.


llee08032
Posted: Friday, October 6, 2017 5:12 AM
Joined: 5/20/2014
Posts: 4408


Love you too, Alz+,

I feel exhausted after spending time (wonderful time) with my granddaughter. I hope and pray our kids and grandchildren don't have our genes. It's out of our control and all we can do is pray, preach preventative measures, pass our knowledge on and hope for cure. Try our best not to feel guilty. The consequences of guilt = stress. It sounds like are getting a lot accomplished with lawyer and hospice. Time to get some rest. Focus on fun you had with daughter.

 


llee08032
Posted: Friday, October 6, 2017 5:31 AM
Joined: 5/20/2014
Posts: 4408


We can only do the best we can do.
Mimi S.
Posted: Friday, October 6, 2017 8:14 AM
Joined: 11/29/2011
Posts: 7027


Hi alz+ , I'd suggest that if daughter isn't interests in a clinical trial, she find a good dementia center and get tested. If your kids want the gene test done, fine. They can get it done.

We all worry abut our kids getting dementia, as do they. Try not to obsess.  But we are all good at spotting signs of dementia in others.

Glad the visit with your daughter went fairly well, except for the last.  It's good that the she the bad as well as the good.


alz+
Posted: Sunday, October 8, 2017 6:16 AM
Joined: 9/12/2013
Posts: 3608


Mimi - yes I do "spot signs in others" but sometimes to the point I think nearly everyone around me has it.

My husband left the car running in driveway a few days ago, I heard a noise and told him. He was so casual about "forgetting" - that scared me too. My daughter is aware of everything that is changing for her.

Makes me really sick worrying about her. She lives in a legal state and I suggested she take cbd oil just because it is good for so many things, she said "no".

I am just in a tough spot right now so maybe I can catch a break soon.

thank you to all for your support.

* we got Jitterbug smartphones while my daughter was here. I will try to learn how to use mine today but grateful we found a plan we could afford, was using old phone that could only call or text. Feel safer with one but will likely misplace it many times a day.

sigh.