Skip to main content

To test, or not to test. That is the question...


Sorry guys, for the month of March I'm going to post a lot about alzheimer's as this month marks 2 years since my mom passed away. My mom had a huge impact on my life and on how I choose to raise my kids. Please bare with me.

As I have mentioned many times before, my mom had early onset Alzheimers disease. Early onset refers to the disease's onset before 60 years of age. My mom was 57 years old when we started noticing signs. She was officially diagnosed at around 60 years of age. She passed away before her 65th birthday.

According to Mayoclinic:
A very small percentage of people who develop Alzheimer's disease have the early-onset type. Signs and symptoms of this type usually appear between ages 30 and 60 years. This type of Alzheimer's disease is very strongly linked to your genes.

What does this mean? And what does it mean for me personally?

Scientists have identified three genes in which mutations cause early-onset Alzheimer's disease. If you inherit one of these mutated genes from either parent, you will probably have Alzheimer's symptoms before age 65.

Oh boy. This has been one of my greatest struggles. Should I get tested? And if I have the gene, what then? It would be like a death sentence, because that is what Alzheimer's is. It is a death sentence.

It typically takes between 7 and 10 years before it kills you. And it doesn't kill you mercifully. It takes away everything that makes you, you.

It affects your whole family. I think the person suffering from AD is probably the one least affected emotionally, because you forget everything gradually. The family however never forgets. They never forget the years they have to watch their loved one disappear slowly until nothing is left of the person they love. They have to start dealing with the loss a long time before the person actually dies.

Now, I have a choice. I can get tested, and the results can come back positive for one of the genes. Then I get to know what awaits not only me, but my husband and my sons as well. And I get to worry, everyday, when will it happen? If I forget something, is it normal aging, or is it a symptom?

If I'm being completely honest, I have already started to worry, even without the genetic test. Did I forget something because of normal stress and aging factors, or could it be an early symptom?

I have however made some decisions. Decisions for now, they're not final and will be reevaluated at some point.

I have decided not to get tested. This may be me, burying my head in the sand, but it's my choice. I get to make this choice for now. I get to choose to live everyday fully. To enjoy my time with my family.

I get to watch my sons grow up now, I get to enjoy seeing their personalities develop. If I tested positive for the gene, I would worry about myself and my symptoms non-stop. I would probably miss out on a lot of awesome moments.




I choose to spend the time I have, living everyday, as if I could die tomorrow. I choose to do things today. I choose to go on family vacations, and to enjoy swimming and supertubing with my sons.





I choose to go fishing with my boys. This is something we never did as kids. We were three girls, so fishing was never an interest. I love to go fishing with the boys. To watch the anticipation and excitement when they have a bite on the line.




I get to go on mother and son dates with Ruben. This is an important tradition we have. It is time spent, just the two of us. Making memories.

Memories that will last a lifetime, and if needed, be a crutch for my family, if I should get the dreaded disease.







I choose to build memories with my husband. On our weekends away, alone. Just the two of us.






I have learned in the two years since my moms passing, that memories are VERY IMPORTANT. I have been able to start forgetting the last few years of her life because of the memories I have of her when I was young. I can remember her impact on my life. An impact that was made long before Alzheimer's disease entered our lives.

And I choose to build memories with my family. Memories that will be healing someday, if needed.

Comments

Popular posts from this blog

Hobbies - sanity saving stuff!

 I haven't written anything in a while. Mostly because I've been keeping myself busy, quite productively I must say. I started a whatsapp group more than a year ago, where I sell items I find at thrift stores. I hit an emotional bump in the beginning of the year and stopped the group for a few months. After some self reflection, I started the group again, and it's been keeping me occupied. And thus away from sinking into depression again. Depression as a result of PTSD from special needs parenting. But I have posted about this before, and this post is about positivity and hope. So I won't be going into depressing subjects today. My whatsapp group's name is Interestingfinds. And that's exactly what I sell on the group. Treasures I find in thriftstores and similar stores. I also have a bidorbuy account where I sell similar items. But the whatsapp group has been really therapeutic. I get to interact with other people (electronically) and I have made quite a few fr

Our greatest fears came true for a friend of mine.

The third angel I had the privilege of knowing has passed away. And my heart breaks for all of the parents of the kids taken away so young. This is a pain I am not yet familiar with, but it is the pain I know that will hurt the most. This is the pain many special needs family's fear more than any diagnosis or treatment. The pain of saying goodbye to the person who formed you more than anything or anyone else ever could. And this special person formed the whole family dynamic. Everything revolved around their care. Vacations were planned around their needs. Their parents were absent for a lot of their siblings life. I fear for the time, just after the loved one will be taken, what will the sibling/s feel? How will they react? How will we react? I know there will be sadness, but what other emotions will be lurking around? Anger? Resentment? Maybe even a sense of relief? How will we deal with that? I think it's important to start dealing with these emotions wh

Embarrassing or infuriating?? Both.

This special needs journey has been entertaining. It has been scary. It has been educational. It has been down right depressing at times. It has been humerous. All of these emotions have been present for a while, and we experience most of them daily. It has also been embarrassing. But we got used to the dirty nappies at inoppertune times. We even got used to impolite stares and whispers. All of these moments have been embarrassing in a way, but we got over it and learned how to cope with them. We have recently begun to deal with issues that were not present before. It is embarrassing, but it also reminds me of how uninformed people can be. We attended my niece's birthday party and one of the moms told my sister that she was worried because my son would be attending. She was worried he would try something with one of the girls. Now, for those who don't know Jacques, that is just plain hilarious. It is funny because Jacques doesn't understand sexuality. And it is hilarious be