Going to an Alzheimer's Study

No. I do not have Alzheimer's, or Dementia, or have any memory loss, but I met a lady who said she was diagnosed with Alzheimer's and she and her son have been learning all they can about the disease. In one of the seminars they attended this lady was told about a clinical study she may be appropriate to be a part of. After checking with her primary doctor and learning more about the clinical trial, she made the appointment to start the process. It was today.

Her son, who is her caregiver, could not go with her today and she asked me to go as part of the study. They needed someone who knew her to answer questions about her. I was more than willing to help because I know how frightened she is of this disease. I don't really know her, I only met her a year ago, but sure, I would go.

Her mother and four out of six of her mother's siblings died from Alzheimer's. It is pretty certain that this disease is hereditary, so she has every right to be frightened.

We had a driver pick us up to take us to the clinic. After she completed the necessary paperwork, we were led to a room where a clinician explained the trial and the process. She would stay in one room and would be given a battery of memory tests. I would go to another room and answer questions about her.

I have no clue what type of questions she was asked besides a few analogies and drawing a clock that she discussed with me after the test.

The RN that I was with asked me a series of questions about the lady, and I explained that I did not know her well, but I could answer some questions through my observations, which I did. Then the RN and I began a very interesting discussion on Alzheimer's and what is being learned about the disease to date.

One of the theories today is about  Plaque or Amyloid beta and Tangles or Tau. I do not in the slightest have any medical background, but she explained in simple terms that when Alzheimer's is present in the brain there is plaque. That is what I focused on as she showed me the pictures of the brain. I do not have any photos so you will have to use your imagination.

Imagine a brain which has a blob of something on the top part of the brain. This is plaque. It's small in size but present.

Then imagine the plaque growing a bit. Alzheimer's is taking hold.

Then imagine the plaque on the top of the brain, and now at the base of the brain. Alzheimer's has a good hold.

She told me about a wonderful NOVA program on the PBS station titled, Can Alzheimer's Be Stopped. If you have not seen this and are interested it could be found on the PBS site or go to this link
http://www.pbs.org/wgbh/nova/body/alzheimers-be-stopped.html

She also showed me the information about alzheimers on the alz.org site. This is the alzheimer's association site. Lots of good information here.

So, we talked and talked about the difference between dementia (especially the old-age dementia with old qualified as 90 or 100). And she explained that some people have vascular dementia instead of alzheimers. She also said that there are many other types of memory loss diseases, some rare such as the one that attacks the frontal lobe. So, it is very important to be properly diagnosed.

My new friend is in the beginning stages of her diagnosis. Initially, she had an MRI and the then doctor in another state said from the MRI that she would probably have alzheimers in 5-7 years. From what I learned today, the MRI does not really define alzheimers although the test is important. As she is further studied and declared a viable candidate for the study, she will be given blood tests, an MRI, and the most important test would be the PET scan. There are probably more tests, but those are the ones I picked up on.

Once the two of us were questioned we were brought together again and told about her results. She did qualify even though she does not have full-blown alzheimers. This is how it was explained to us.

The clinician drew a Bell Curve with 100 having alzheimers. The 85 shows that alzheimers is present and with the new drug being tested, this person would be a good candidate for the study. The clinician explained that once alzheimers is full-blown (my words, not hers), the new drugs being tested would be of little use.

This 77 is where my friend is. So, she is a precursor to alzheimers and is experiencing some of the telltale signs of the disease, such as what she perceives as a change in her personality, and not being able to focus enough to read.

She should be a good candidate because they said that the earlier they can identify alzheimers, the better the drug would work. Possibly even stalling its progression.



She had one more test to answer questions, and I was able to stay in the room if I said nothing to help her. I did stay and she did lousy on the math part but okay on the language part.

And me, well, I am not a suitable person to be her companion during this study because I do not know her. So, her son will have to go when he can make the appointment and answer the questions that were asked of me.

I am so glad I went. I learned a lot, and since the study will take place over 4 years, I will probably learn more as I ask her how it's going. I wish her well. I know how frightened she is, but maybe with this today and them showing that she does not have full-blown alzheimers, she may be able to subside her fear a bit.

And I thank God I do not have it or or dementia or any memory loss disease. This does not run in my family. I will get cancer, TIAs or neuropathy in the feet, (and no, I am not diabetic now does this disease run in my family) those are in my genes.  I don't know if we can even ask for a cure for alzheimers, but I do ask that when identified early, the disease can be halted in its tracks.

Until tomorrow...have a great day