Where Is That Empathy I Talked About?

http://scitechconnect.elsevier.com/beastie-boy-died-frontal-lobe-dementia/?utm_source=socialmedia&utm_medium=neuro&utm_campaign=Beastie+Boy+John+Berry+Died+of+Frontal+Lobe+Dementia+%E2%80%93+But+What+Is+It%3F&sf27566537=1

It is extremely sad and pathetic that the only way you hear about FTD in the mainstream media is when someone dies from it. This was the case with Beastie Boy's member, John Berry. The link above is to a story about his death and contains some good information and understanding of the disease.

You would think the mainstream media would read what they wrote or broadcast and think, "Hmmm... I wonder what this disease is and why we don't hear about it?" then do a bit of research and publicize it, even just a little. Yeah, you would think!

This week, I had a chiropractor recommend I consider what I understand is an experimental treatment, a laser treatment that has been used for multiple sclerosis. She told me that it helped a patient, who was unable to walk at all, start to walk again. She went on to explain that since it is plaque based as well, it should be worth it to me to try it and that she would be able to do it for me

Only problem is, FTD is not plaque-based. Of course, she was assuming FTD is the same as Alzheimer's Disease. She was assuming this even though I have previously given her printed information to explain FTD after she had suggested other alternative and unproven treatments. In FTD, it is thought that TAU proteins build up inside the brain cells which kills the brain cells. Inside the brain cells! I would not even consider a laser treatment in hope that it might dissolve the protein built up inside my brain cells.

I can not really fault her for not understanding what FTD is. There is no talk of it out there in the mainstream. So, when people hear that it is a type of dementia, they jump right to Alzheimer's. When I was trying to give a 20-word or less description of FTD. She listened and asked, "Well, why does that happen?" I am afraid to admit that I lost it. I, quite loudly, responded, "We don't know! That is the problem! There is very little research because all the research dollars goes into Alzheimer's research! That's why you don't know anything about it!"

She is an amazing chiropractor, probably the best I have ever been to. I am extremely grateful that she cares about me so much. I consider her my friend as much as I do my chiropractor. I hope she is still speaking to me when I go in for my next appointment.

Before I saw the article about John Berry and FTD, I had other intentions for a subject for today's blog entry. I planned on writing about the lack of empathy.

I have written before about how the lack of empathy is often one of the earliest recognizable symptoms of FTD and how it can leave me feeling totally empty. Lately, though, my lack of empathy is nothing like it was in my earlier stages. Now it kind of comes and goes. Some days I will care, other days I will not.

This week I received a phone call that yet another person in my life has been diagnosed with breast cancer and that now it has also spread into her spine. Her prognosis is not good and has been told that the treatments will not cure her, but may possibly extend her life for a while. She, as you can imagine, is feeling devastated. I am also feeling devastated that I will most likely be losing another friend to this horrid disease.

The news has taken the wind right out of my sails. I cannot shake this sense of sadness and am already anticipating the loss. It has also hit me over the head and caused me to realize just how hopeless my own situation is. Then, I feel guilty because I am turning it around to myself and think that I should be more concerned for her than for myself.

I just cannot shake this feeling. I have been crying many times during the day and other times find myself just staring off into space, trying not to think about it. I want that lack of empathy back. I want to feel numb again. I think I now understand why people say they drink to feel numb. Too bad I don't drink.

Sorry for the depressing tone of this post, but I guess it will give you an idea of the frustrations that people diagnosed with FTD fight through every day. I will try to be like Scarlet O'Hara and believe that tomorrow will be a better day!