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Just Curious(1)
Posted: Sunday, September 22, 2019 6:30 PM
Joined: 9/22/2019
Posts: 14

Good afternoon to all. I am in my 50's my mother and all 3 of her sisters have some form of dementia or Alz. All presented with symptoms in their 70's my mother is now 84 and is declining very fast. Thankfully we have been able to pay for her care at home splitting the expenses of sitters 24 7 between me and my siblings. 

My sister had the DNA test that showed the APOE4 Gene detected. She ask me to have the DNA test so it would check maternal and paternal side when the test came back it shows we have the gene on both the maternal and paternal side. When I read my analysis it said I had a 56% chance of having some form of dementia by the time I was 65 or before. My father died very young and all of his siblings are gone. I did not know any of them very well. 

I already have trouble finding words at times and zone out at various times. I have and have had a very high pressure job for 30 years. Without saying what I do but my job is listed as one of the top 10 stressful jobs in the world. 

I say all of that and am sorry for being long but have you or your loved ones in early stages have or had muscle tremors, or facisiculations of some type. I had a full neuro work up over a year ago for the tremors my GP thought it was early stages of Parkinsons which that was ruled out. It is not ALS nor has it been diagnosed as anything. But on a daily basis I notice some type of difficulty arise in my life and it seems that my symptoms are just blown off as stress by doctors. I have worked extremely hard making what I have made in life and can accept if I am in early stages. But before I proceed with further test I was curious if anyone else had experienced what I am experiencing. 

Thanks for your time and I appreciate any help you can offer. 


Posted: Monday, September 23, 2019 4:59 PM
Joined: 10/9/2014
Posts: 1186

I'm not able to provide any info for you, but, I hope that others will.  Your story is very perplexing. I hope you get some answers.
Michael Ellenbogen
Posted: Monday, September 23, 2019 5:55 PM
Joined: 11/30/2011
Posts: 4324

If I was you I would have you and other family members see if you can get into the DIAN study. Sorry for what you are going thru. While it may not help  you it could help future family members.
Posted: Monday, September 23, 2019 9:40 PM
Joined: 2/4/2019
Posts: 6

I am so sorry for all you are going through. 

My story is very similar with YOA, AZ and  Parkinson’s with both of my grandparents on my Mothers side and All 6 of my Mom’s  siblings.  I own a small business and was thankful for my wife’s wisdom to have me apply for a private Disability policy and Longterm Care policy for both of us.  Looking back knowing what I know now, my  symptoms began at age 53 and I final reported my concern to my doctor During a physical at age 56. Do to insurance issues, I was finally diagnosed December 2018 with YOA.  I don’t know what I would do if I’d had no Disability and Longterm Care insurance.  My Disease is progressing fairly fast now and the doctor tells me that I will need to be in a memory care facility by spring of next year.  

So, please help yourself and your family if at all possible by getting covered by the appropriate insurance before you start down the road of being diagnosed.  Once it’s on your medical records you will not be able to obtain insurance. 

All the best to you and your family.

Jo C.
Posted: Tuesday, September 24, 2019 9:11 AM
Joined: 12/9/2011
Posts: 13126

How very kind and very wise of you, Brad; thank you.


Posted: Tuesday, September 24, 2019 10:39 AM
Joined: 9/22/2019
Posts: 14

I want to say thank you all for your replies especially NevadaBrad for sharing the wisdom of the long term care insurance. I had not thought of that to meet my needs in the future. I have been trying to save as much as possible for the future. It cost use appx. 4k per month on sitters for my mother. 

I am also going to be checking in on the DIAN study. One of the facilities is less than 100 miles from where I live.  

It seems various things are progressing faster than I expected and I am in the beginning to get my affairs in order so no one else will have to deal with it. 

Peace and Prayers will be for you all. 

Thank you again.

Posted: Tuesday, September 24, 2019 11:20 AM
Joined: 9/12/2013
Posts: 3608


I had physical symptoms 15 years before being diagnosed. I was told it was anxiety and developed a numbness which was then diagnosed as MS.

Since there was not treatment for it I got massages and kept working and helped care for my Dad who had ALZ.

The advice to get insurance before a diagnosis is smart and do it today. If you have NOT had the dna test (forgot what you wrote about it) wait.

None of the alz meds helped me, some were really bad. I found alternative medicine works super good for me.

Having an easy place to live with any dementia is the key to making caregivers role easier for them. Set yourself up now.

For all we know there will be a remedy in 5 years, it is worth it to live!

Posted: Wednesday, September 25, 2019 7:38 AM
Joined: 8/12/2019
Posts: 38

As far as I know, the DIAN Study is for individuals who have the early onset autosomal dominant type but the family members of 4D presented cognitive decline in their 70/80s and if you have two copies of the apoe4 gene and a strong family history it’s not that unlikely to develop Alzheimer’s at an earlier age.
Posted: Thursday, September 26, 2019 1:38 PM
Joined: 9/22/2019
Posts: 14

Thanks for the reply. I have checked into this study and I do qualify for the study it is for the children of people with various types of dementia according to the person I have emailed with that is over the study in my area. I will keep the board posted as things progress and again thanks to everyone for the replies.
Posted: Friday, September 27, 2019 4:48 PM
Joined: 9/12/2013
Posts: 3608

4D - wow.

My kids do not want to talk about the possibility of them inheriting it so we don't.