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Do I want to be a candiate for clinical trial
Debbie 1951
Posted: Monday, September 17, 2012 10:39 AM
Joined: 1/1/2012
Posts: 138


My Dad and my Mother both have been diagnosed with ALZ. My Dad passed away almost five years ago at 85 from something that I think they missed and called it ALZ. He died of Lou Gerig's diease very quickly. I saw signs in my mom way before my father passed away and after living there 24/7 through my dads hospice I knew she was in trouble so I sold her home and she lives with me. Last year her neurologist gave me a pamphlet explaining a clinical trial that is offered no cost to me, just my time.  I have had it, looked at it, thought about it, and just left it lay. This past visit he asked me if I acted on it... I said no. He gave me one sheet of paper and said he would have someone call me from the hospital.  After she explained what would be required it did not seem too bad. I would have to fast the night before, have blood work done when I got there, they would give me breakfast , a physical, and some testing for short term, long term etc.  Then in about a month  I would come back for an MRI and a Spinal Tap.  That scared me....  Anyway then I would go back once a year for cognitive testing.,  The hospital is 3 hours away, so I would need to get someone to stay with my mom.  My husband has to assist me so they can also talk to him... ok do I want to know if I am a potential ALZ victim? Will this help future generations?  I am 61 years old and not ready to hear if I have  a life sentence of hell. Am I a coward? Should I not want to prepare ? I am so torn with the decision that I need to make.
Myriam
Posted: Monday, September 17, 2012 12:47 PM
Joined: 12/6/2011
Posts: 3326


Hi, Debbie. You are faced with a very difficult decision. My heart goes out to you. I was in a similar position, but knew immediately that I wanted to know. There were several reasons, including that if I did have a genetic form of AD, I wanted to do all I could to help find a cure or something to stop the progression, not just for me, but for my children and grandchildren. I also thought that if I had the gene, I wanted to spend the rest of my life not just as a warrior fighting AD, but also enjoying every minute I had left. The diagnosis gave me additional purpose for life. 

 

I got the results of the DNA test in April 2010. I was 63. I have MCI and live a full and wonderful life. I follow all best practices. If you do carry the gene, you will not have a life sentence of hell...unless you choose to. I say this to you with love and compassion, and with the prayer and hope that you do not carry the gene. 

 

If you haven't already done so for your mother, consider calling the Alzheimer's Assn. chapter nearest to you for information and support: http://www.alz.org/sewi/ 

 

Here's a big hug: &gt;:D< big hug 


Debbie 1951
Posted: Monday, September 17, 2012 6:40 PM
Joined: 1/1/2012
Posts: 138


Hi Myriam,

I have read many of your posts. You have so many heart whelming information.  I appreciate your care and concern. I guess I don't want anyone to go through what I am going through with the caring for my mother. We don't find out if we have cancer until we get it, so I think maybe I am better off not knowing. Then on the other hand shouldn't I want to get a head start against this? In a way yes, but knowing I have the gene, I am not sure I can handle that right now while I am taking care of my mom. Maybe once she is gone I would have more energy. Right now I am so depressed and tired, just the thought of that extra stress seems unbearable. I wlll take your suggestions very seriously, and talk it over with my family. Once again for all you enlightenment

God Bless

Debbie 1951


Myriam
Posted: Monday, September 17, 2012 9:51 PM
Joined: 12/6/2011
Posts: 3326


Debbie, please take care. I hope you can find moments of peace to get you through your difficult journey.