Well I am suffering with a cold this week. Something that would have been a minor annoyance in the past and now days can be quite a bit to handle. The doctors tell me this is common with any dementia because people like me have much less reserve in the brain so when you have a virus or infection it really knocks you down in functioning.
I just read an article that is extremely interesting and proves what I had come to think about the brain. And that is they don't truly understand how the brain can compensate for injuries and diseases of the brain. This new study shows that self awareness is controlled by many areas of the brain, not just a couple. I highly recommend reading it. Link to article. I encounter what they talk about in the article often in that people will think I am perfectly normal when in fact I have serious difficulties with some things and am not even close to the person I was as far as abilities 10 years ago. I am slowly being more and more challenged with spelling which was always instinctual with me and I could spell almost any word from memory. I now will blank on the word I really want to use and my brain will come up with an alternate word that I perhaps haven't used hardly at all in my entire life even though I was well aware of the meaning. I forget names of people and places that I know extremely well recently which I find quite disturbing since most of the damage up until now that was noticeable seemed to be to things like executive function. It is certainly a journey of which you have no idea what to expect from one day to another. One day at a time is what I keep telling myself. Anything more is too overwhelming.
Got back from a trip to Virginia Beach last Monday (8-6-12) and it sure was good to be home again. It used to be a sense of regret coming home from a trip because it meant the adventure was over and it was time to go back to work. Now days with this disease it is always a relief, not that I don't still enjoy traveling because I do, but it is stressful and the total change in all routines and unfamiliarity starts to wear heavy on me. It also stressful that often there are so many things planned it seems like I am on the go constantly which I am not used to at all. Life has very necessarily become slow paced and deliberate for me. It takes a lot of time to do things that used to be quick and I get so sidetracked with everything I do that I often start out to do something, get sidetracked on to other things and never get back to what I what I intended to do in the first place. Something that is unbelievably frustrating later when I realize I never got the important thing done. It is just a fact of life now days though that I am trying to learn to live with. It is hard sometimes to get others around me to understand this constant battle that I fight, to them some things about me seem normal so they forget just how many problems I continually deal with and I am not one to complain about them either. I totally believe in making the best out of what I can still do and focusing on the positives. With dementia I think you would spend a great deal of time with self pity if you don't think that way. I don't personally think self pity is good for anyone least of all the person experiencing the disease. Time is precious with dementia just as it is with any terminal disease but since your life is in a continual state of dropping quality of life it feels all the more precious. So that is my ramblings for today, I am going to try to start posting to my blog more often, it is therapeutic to put thoughts and feelings down in writing.
The address is now http://www.earlyonsetatypicalalzheimers.com/ but you will still be forwarded from the one with weebly in the address. I have also started a support group on Facebook for those who are diagnosed. It is just a method to communicate, ask each other questions and pass along interesting information. Mainly share similar experiences we all have. If anyone that is diagnosed with any dementia or MCI is interested and has a Facebook account please use the contact me form and send me a note! I would be happy to have you in our group. To add you I have to send you a Facebook friend request so please tell me your name as it appears on Facebook.
Others that aren't aware should know about the ALZ connected forum for caregivers and the diagnosed as well. You can make your user name whatever you want there and stay anonymous. My name there is John50. You can find the forum here.
I am going to do my best to try to post to this blog more often now. Of note in the links section is news that one of the drugs in clinical trials has failed phase III so they have discontinued the trials. Very disappointing. It is SO IMPORTANT that I can not stress enough that anyone that is willing needs to write their congressional representatives and tell them the level of funding from NIH for research is totally unacceptable! I have said before that in 2011 there were 500,000 new cases of Alzheimer's Disease yet there was only 0.6 Billion allocated for research while there were 50,000 new HIV/AIDS cases and they received 2.6 Billion in research dollars. Something horribly wrong with those numbers but it is because celebrities and many, many people brought pressure on DC to get it done. We NEED the same with Alzheimer's and related d
See Home of my site to learn more about me.