23 and me part 2- The results are in!

By Amanda Thornton MSN, BSN, RN, VA-BC, CIC

Well folks the results are in……..

As I have stated before, one of the major reasons for doing this blog was to document not only our knowledge and experiences being both personal and professional caregivers of those with dementia, but also to document our own personal journey through the disease-( should we get it)- and to do this from an “early age”; meaning specifically BEFORE the onset. Looking at the blogs out on the web there are a lot of blogs by people who are caregivers of those with dementia, but few of those blogs are done by a person who has dementia. Obviously, a blog that spans years or decades is really not an option for someone with a terminal brain disease. There are a few good ones out there, but none that last (again for obvious reasons). Us three sisters have no delusions that we are all going to escape this disease- not after four generations before us have had it. We are hopeful perhaps only one of us will get it and two of us escape this fate, but again that is perhaps a pipe dream for us.

We started this together because we are all three capable of writing this blog ALONE should it come down to it, and documenting the disease progression in each other as it takes each of us down to the point where we no longer are capable of blogging. I really want to have our journey documented for others who come after us, and perhaps capture something no one else and no other blog has yet. Again also, we have a wealth of combined professional healthcare experience between the three of us working directly with dementia patients of all ages and diagnosis- so also perhaps we will capture something that is helpful for someone in our own journey that can be useful in the future.

That being said, my results are in, and it’s not good. I have the gene. In particular I have one copy of the E4 variant which puts me at risk for the late onset variation of Alzheimer’s, which is the most common one people experience and it usually occurs sometime in their mid 60’s or later. Unfortunately, the combination of a “strong family history” of the disease, and the relatively “early” onset for my mother (she was in her mid to late fifties when she first started noticing changes) means my risk is high. VERY high, for developing the disease- and perhaps even in a few short years from now.

So- how am I feeling about this? I will share with you the sad and humorous text exchange I had with my sisters about this the day I found out. Mind you I was on vacation in Las Vegas and I had a few martinis on board- but that makes it all the more genuine and the feelings all that more honest when this occurred.

I shared a screenshot of my results with my sisters and this is how it went:

Me: “Welp….I guess I’m fucked. Joy- At least we can live together so it will be cheaper to take care of us.”

Joy: “Oh no! There definitely is a very strong gene.”

Me: “Ugh. Let’s drive off a cliff together”.

Emma: “Can I join you?”

Joy: “Emma your not allowed to join until you find out if you have the gene”.

ME: “This is so depressing. I told Ryan he should divorce me immediately. UGH….. I’m ready to cash it in”.

Joy: “You mean social security? LOL”

Me: Ya there’s no social security left so…….”

Joy: “ I KNOW RIGHT???!!” It’s slated to go bankrupt when we are around 64….OF COURSE.”

Me: “Of course it is!! “

Emma: “We should all start Yoga together”.

Me: “Why? So we can have nice asses when we are old and confused?”

Emma: “Well you told Ryan to divorce you…..so how else do you expect to get a guy?”

Me: “True…..Damnit.”

Joy: “Go do your bucketlist!! GO and DO! You can dude!”

Me: “I will, but you too doofus, your like a year and half older than me- and your smarter than me too.”

Joy: “Not smarter, just broker….lol. That’s why I applied to work at Disney- I can make money AND have fun!”

Me: “ooooooh….get me lifetime tickets to Disney please!! Emma I really hope you don’t have the gene too…..”

Joy: “Manda….Emma hasn’t been tested yet and anyway she’s probably in the clear- you and I came from the same part of the ovary, she was 20 years later.”

Me: “I know she hasn’t been tested.”

Joy: “Well you ARE drunk in Vegas and you DO have the gene after all so I wasn’t sure you remembered……lol”

Me: “Touché”.

Emma: “THIS IS WHY WE ARE DOING THE BLOG!”

Me: “OMG for sure”.

As you can plainly see, finding this out was certainly not a happy moment for me, thank God for my sisters to lighten the moment. I felt overwhelmed and sad. I realized I had truly been so hopeful that the gene was not present in me because it had not been passed down to my daughter (she had genetic testing done before me). I am so happy I have my sisters to share this entire journey with, and to do this blog together. For anyone who has been tested and found out the same thing….I know how you feel. But just as a reminder this is an excerpt from the National Institute on Aging’s genetic testing sheet:

“APOE ε4 is called a risk-factor gene because it increases a person's risk of developing the disease. However, inheriting an APOE ε4 allele does not mean that a person will definitely develop Alzheimer's. Some people with an APOE ε4 allele never get the disease, and others who develop Alzheimer's do not have any APOE ε4 alleles (1)”. For me however with my strong family history the risk is higher than most.

So now what? Do I go to bed and just stay there? I guess that is not an option…..no matter how badly I would like to do just that. I AM buying a weighted anxiety blanket for myself though…….. 😊

Stay tuned for part three.

Reference:

1. https://www.nia.nih.gov/health/alzheimers-disease-genetics-fact-sheet