Alzheimer’s Research Projects – My Journey, Come with Me – Part 1

Alzheimer’s Research Projects

My Journey, Come with Me   

Part 1

Today I’m am going to share with you my experience of registering for the MINNESOTA MEMORY PROJECT and BRAIN BANK RESEARCH PROGRAM.

Lori La Bey of Alzheimer's Speaks of Senior Lifestyle Trends

The reason I want to share my experience with you is to help remove some fear attached to these important research studies.  I will be sharing the emotional side of my journey.  The thoughts and feelings I had surprised me during this process.  Being a “professional in the healthcare industry” I thought I was walking in with both eyes wide open and there would be no “emotional surprises” but I was wrong.  It was actually very interesting to “Watch” myself, “Assess” myself as the process unfolded. 

I also want to let you know that I was originally going to write this article as a third party because I was worried about the “What If’s?”  What if  they find I have a problem.  They being the healthcare industry, my readers, my family and friends….  How could I begin predict how and if this information would be harmful to me in the future.  I held off on writing the article as writing it in  the third party never sat well with me.  I could logic the reason but in my heart it just didn’t feel right.  It felt like I would be reacting to my fear and that was the reason I wanted to step up and write about the process in the first place.  Here on Alzheimer’s Speaks I encourage people to be honest and I was going to hide behind a fake character.  That just didn’t sit well with me.  It’s not my style, so I gave myself time to process.  I’m now ready to move forward in an honest aligned fashion.  I glad to say I feel very good about telling you this is my personal journey. 

I also want to encourage you to write to me if you have any questions about the process and I will answer them the best I can.  They only thing I can’t do is give you specific questions… as I don’t want to hurt the study.  Again the focus of this article is the emotional impact of going through the process.

Now before we get into the actual article I first want to tell you that I was applying to two different programs:

1)    Brain Bank Research Program which is about setting up an autopsy on my brain when I die.  I have decided to not only do this for myself but my Mother as well.  Mom has always been interested in helping find a cure, so even though she is now in her end stages of Alzheimer’s and is unable to verbalize her thoughts I felt very comfortable committing both of us to this process.  And yes, I have Power of Attorney to do so.

2)    Minnesota Memory Project which is a research program to gather health history and lifestyle information on the following groups:

  1. Adults who are 55 years and older
  2. Adults with diagnosed memory loss who are 40 years and older
  3. Adults providing care for someone with memory loss

For me, I fell into the “Adults providing care for someone with memory loss” as I am not yet 55.  Close but no cigar on that one.

So logically, the first big step was to pick up the phone or shot an email and inquiry about the process.  No big deal right?  Wrong! Apparently I wasn’t as ready to step forward as I thought. I mean I’ve only had 30 years to ponder the impact of Alzheimer’s on my life, given my Mother’s has struggle with memory problems during this period.

I procrastinated about 3 weeks on this alone. Man did that surprise me.  I had a good logical list of why I just didn’t call or email of course.  None of them truly valid though.  I hate when I catch myself in denial!  Bottom line I wasn’t walking my talk and for me that had to change.  I had to step up and align with what I truly believe in…making a difference any way possible in Alzheimer’s disease.  I picked up the phone and made the call.

To my disappointment I got an answering machine.  This was a let down, not due to a technology thing, but because I knew I still had to follow-up and make sure the telephone tag process moved forward.  I had to muster the strength and tackle my fears for as many times as it would take to follow my gut.  To stand up for what I believe in and make it a priority.  It took a few times to connect and of course I needed to talk with two different parties on the two different programs.  But the nice thing was I felt great once it was done. 

Once the ball was rolling and paperwork was on it’s way in the mail to me I felt the tension leave my body.  The worries of “What if?” and “What happens if I don’t like the results?”  where gone.  Funny thing was up until that point I didn’t know those thoughts were even there!   That was an eye opener given I usually consider myself to be pretty self-aware. 

I never was worried about the results of the autopsy on my Mom.   I’m pretty sure she has the disease, even though they can’t be 100% until they examine the brain.  As for me and the autopsy, well if I do have it I’ll be gone by then so that doesn’t bother me at all.  I’m big on donating organs… being cremated… and just want my body to go to good use and not take up much space when I’m gone!  Now my daughter on the other hand doesn’t appreciate any of those beliefs I have and so that was another discussion and struggle to process.  I think she understands where I’m coming from and I can only hope she will be able to deal with my wishes when the time comes.  Which I hope are many years from now.

Now as far as the Minnesota Memory Project, that one really caught me off guard.  When I received the paperwork I procrastinated another couple of weeks.  I didn’t even open up the envelope!  I picked it up a few times, just to feel the weight of it.  Again my list of excuses gathered dust but made me feel justified until I was ready to press forward. 

On the phone I was told exactly what would be coming in the packet.  There was no surprise in that looming white envelope.  The weight and the fear was not in the envelope but in my mind.  Here again I didn’t even know my fear existed until I finally opened up the packet.  I remember vividly, taking a deep breath before ripping it open.  I can still hear myself sigh.  I can feel my body plop into my overstuffed chair in the livingroom to prepare to complete the questionnaires enclosed in the ominous white envelope.  I had gotten myself a glass of ice water, a fresh pen, and a large book to write on.  I’m all about being prepared when I’m ready to move forward.  How funny is that!  I knew I would finish completing the packet in one sitting.  Oh yes, I was finally ready to be efficient.  

The questions were easy and nothing too stressful to complete, although I found some questions were similar but listed in various sections of the questionnaire and I would answer them differently.  Usually this had to do with exercise and eating habits.  I just giggled to myself and thought, “They caught me.”  They way the questions were worded evoked different emotions in me and different interpretations.  When I reread them again I still stuck with my answers even though different.

The next day I wanted the packet off my hands and off my list of things to do.  I drove to the post office and loved the feeling of the envelope slipping off my fingers into mail box.  But why the post office when normally I would just drop it in my own mail box?  I think at this point I wanted it further down the road in the process.  I really think I was trying to make up for my procrastinating and time lost in the process due to it, but I’ll never know for sure.

Now I could sit back, relax, and wait for them to call me to arrange the interview portion of the Memory Project.  The Brain Bank paperwork was more of a formality and nothing needed to be done other then make sure they received the paperwork. 

A few weeks later I still had not gotten any call back or confirmation in writing of my information.  So once again I picked up the phone and followed up on my information.  I had sent the information on both projects for both Mom and I in one envelope.  I should have known better.  They came in separate envelopes for a reason.  They could not locate all the information, and so I had to resend the information.  That was easy enough to do as I had made a copy for myself and just faxed it over so we could proceed with hard copies to follow in the mail. 

We set up a time for my interview.  Better viewed by me as my evaluation or testing portion of the process.  As good as it felt to have on the calendar I could still feel my stomach tighten a bit.  I even put on my calendar to make sure I ate, drank, and slept well a few days prior to the appointment.  The old, “Be prepared motto” rang loud and clear in my mind.  Then I let it all go.  I was moving forward with something I felt and still feel today  is important not only for me but for others in the world.

The night before my appointment I went to bed early and slept well.  I didn’t worry about the process at all.  I Thanked God for that. 

I will be writing part 2 on the actual person to person evaluation within the next week or so.  That was extremely interesting and insightful, so you’ll want to catch that one!

2 Replies to “Alzheimer’s Research Projects – My Journey, Come with Me – Part 1”

  1. Lori, thanks SO much for having the guts to do this. For me, I have the lovely excuse that there is no study within two hundred miles from me, so I don’t even have to fight that battle. I think I fear that I will start “counting my symptoms” instead of “counting my blessings” once I enrolled in something like that. The stigma is a killer, but it shouldn’t be.

    1. Thank you for your comment Marty

      I think as we age we start paying more attention to our symptoms; study or not! LOL. I also feel with this disease it is wise to be observant but not paranoid. Alzheimer’s isn’t something we can stop, but with the combination of medications, social environment, sense of purpose, and good support we can plan to live our life with passion and love if we are proactive. Proactive, being of course the key word. My Mother started having problems with her memory at my age 52. I know it is something that could strike me. But like with any disease we just never really know. So the question we all need to answer is “How do we want to live our life?” Live in fear or in celebration of life and the opportunities before us, which exist in the gravest of circumstances. We just have to train ourselves to look for them with a different eye and mindset.

      Also I should note that you can do some studies by long distance so don’t just cross them off your list for that factor. For example I just have to meet with the research center one time a year. A vacation could even be worked around something like that!


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