Another NIH visit

Albert E. Quote1.59.39 PM

We are headed up to the NIH (National Institute of Health)  in Bethesda, Maryland late tomorrow for some follow up testing from the diagnostic study Jim participated in 2 years ago.

When we go for these tests and this study, Jim goes through hours and hours of scans, questions, bloodwork, waiting and sitting. So do I. When we leave, we are exhausted and given nothing to bring home that will tell us any more than we already know. We are given no new drugs or treatments. Eventually the doctor is kind enough to send us a report that will let us know they believe Jim is in the early stages of what they are pretty sure is Alzheimer’s Disease. I believe last time they labeled it as Mild Cognitive Impairment.  I am a little anxious to see the changes they will note and if he is still considered to be in the same stage two years later.

You may ask why we would drive 3 1/2 hours, take off work, go through the hassle of finding someone to watch the kids (thank you!) to sit and get poked and prodded and scrutinized for two full days.

Because we believe that these studies will eventually help bring about more understanding of Alzheimer’s Disease and what causes it; specifically Younger Onset type. And if you are keeping track, this tends to run in Jim’s family and with two kids, we have been told each has a 50/50 shot of winning this genetic lottery. For those even more in tune  to this situation, you will understand that we have also been told that 1 of our two babies WILL develop AD, most likely around the age of 48. Let that sink in for a moment.

Yep, that is enough to make the effort and the sacrifice more than worth it. We are not alone. Others make sacrifices and participate not only in diagnostic studies but clinical trials as well. Partly to help find a cure and partly to hold onto belief that the drug they are being the lab rat for is the magic pill that will not only be the miracle drug for others, but for themselves as well. You just can’t imagine how desperate you become when you are put into a situation with no hope, no cure, no help, nothing but a strong will. Sometimes even the strongest of wills feels weak and unsustainable.

It is a terrible time for me to take off work. Not only do I not have any vacation time, but I am at the very end of my quarter and need to bring on board 1 more member and I will make goal. When I make goal, I get a bonus. If I get a bonus, it will make up for the fact that I am taking two days off without pay. Ahhhhh. The irony. So, I will be keeping my fingers crossed that tomorrow I can do in 1 day what I should be doing in  3.

A few positives from all of this: we are continuing to make a difference in the big picture. We have good friends that are helping with Brad. (Frances is with my parents). I have a job that is letting me take time off work. I have the opportunity to make up for the lost pay. We get to visit the NIH again and be part of this amazing process and work with an amazing doctor and team. Jim and I will get two days by ourselves. I get to drive through DC. Wait. That wasn’t a positive. I get to drive through DC late at night on the way there. Better. We will be able to get results to show how much has changed with Jim in two years by the most advanced technology in the world. I will get to share our journey with all of you.


posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Younger Onset Alzheimer's Disease and have Comments (4)

4 Responses to “Another NIH visit”

  1. Jeanette Gardner says:

    Thank you for your input it is very helpful. I also have this ugly disease. It is so hard on my family because I do the weird things. People that talk to me tell me that I am OK. If they only had to live with me they would change their minds quickly. My poor husband is through so much but God is teaching him patience.

  2. Paul Savage says:

    More families than you may realize are impacted by this dreadful disease and none of us knows the exit strategy for our leaving the planet. In my mind it is sort of like when grandparents plant a tree for their grand kids, I salute you. God’s speed…

  3. Michelle Fox says:

    So commendable…safe travels and try and find some joy in your mini trip…for such a great cause.

  4. Sally C says:

    I am so sorry for the slow loss of your husband. You are really a strong, wonderful woman for standing by his side throughout this.

    I hope you don’t take this the wrong way, as you have enough on your plate, but has anyone ever mentioned that it might be fronto-temporal dementia and not Alzheimer’s? They are closely related, but there are different mechanisms that cause them. My mother and grandmother both had FTD. I had the genetic testing done, and thankfully I did not inherit the messed up gene. Just something to consider, it may have an impact on the way they treat him, and he may be eligible for some research trials.

    I wish you peace and love in your journey. It’s not easy.

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