So the topic for today is frustration. I have been feeling a lot of it lately. Mainly all to do with trying to deal with consequences of my disease. Everything is harder now days. I struggle with things that used to be simple for me. I took for granted all of my life until after I was diagnosed my abilities and never really thought a lot about it. Now that I am losing them it is so difficult and mostly frustrating.
To have this disease and be self aware, which some people are not, is simply horrible at times. If you stop to think about the fact that you are slowly watching yourself disappear, it is incredibly hard. In fact, it is too overwhelming to dwell on, if I do I would be incapable of having any quality of life left. When I think about it, it is almost like a mourning process for the passing of the old me and trying to accept the new me and definitely is not a new and improved version of me.
I suppose trying to adapt to this disease is a bit like someone that loses their sight or ability to walk except that they usually have that same obstacle to keep working towards overcoming, ours is one that is ever changing and worsening with every tick of the clock. Prior to this year I knew that many abilities had been affected but I was still able to deal with it better than I can lately. I have had challenges this year that are so kind of in the face that it is hard to put them aside. It is a disease that continually makes you feel dumb.
When you continually get confused as to what you were going to do, or get sidetracked and never get back to what you were doing or lose what you were going to say before you get the chance to say it, that is so frustrating, frustration, the general topic of today's post. I try and try to manage my time but no matter what I do I am just incapable of managing it well. Time evaporates and I wonder where it went and how that much time could possibly pass and I hadn't gotten any of the things done that I intended. It is astronomically frustrating is the best I can think to say. I wish I had more answers, I always try to help others that suffer through support groups, especially one I started myself that is limited to those that are diagnosed and I tell them to focus on what they can still do and let go of what you can no longer do. It is the truth and important to any emotional stability but it is a major challenge a lot of the time in reality.
You can't help but to think about how hard things are that used to be easy, at least that is what happens with me. You can't believe that it could take you 10 times as long to do something as it would of a few short years ago. I still do well compared to many that suffer with this disease but in some ways that is even worse, it gives me a LOT of time to see and think about how I am quietly fading away. Eventually I will be just like my father was before he passed from the disease and not know the names of anyone, people I love will look like strangers to me or at least I won't know what the connection is and that is so hard to think about. I am making myself incredibly sad even writing these thoughts out but I think it is important for anyone that reads it to understand what this disease really does. It is among the most cruel of all fates because it drags out and robs you of all dignity and everything you once were while not even leaving you the happy memories. It is like fading to black, eventually it is all just white noise that doesn't make sense.
Often I have thought the selfish thought that it would much easier to die of most other diseases but I do not get to make that choice. It would be much easier to suddenly go from any cause, if I did not have an ethical, moral objection to the idea of suicide it might even be something I would consider for the future but I will not abandon what I have always believed in just because I was dealt this hand. I always thought it was a permanent solution for a temporary situation, well in this case it is a permanent situation but I still think it is the person's way out who is not strong enough to take whatever life hands you. I prefer to think that for some reason I have to suffer this ending, I just hope somehow, someway I can make a difference before I totally lose myself. That is my true desire. I hope through advocating for more research I can prevent someone from going through the same thing one day, that would be the ultimate thing for me.
PLEASE NOTE: It has come to my attention that in my free flow of writing the paragraph directly above that I insinuated that I have contemplated suicide or would seriously consider doing that while nothing is further from the truth or what I intended to say. While I think anyone being totally honest that has ever faced something extremely difficult has had the thought bounce around in your head but that is something completely different than even considering, contemplating, or thinking it is a viable alternative. I do NOT mean to ever suggest that I think that is an option that should even be given serious consideration, that is my opinion and I know some disagree with me but as I have said it is somewhat selfish in that the mere consequences of making that choice can have deep lasting effects on those that care about you that you leave behind. It also goes against my belief that no matter what life hands you that you must deal with life on life's terms. I am truly sorry in creating any confusion on this point. I suppose I used the word "suicide" to try to demonstrate how desperate the situation can seem at times, not as an actual method to solve the problem.
Please click on the image to the left here and it should show it to you larger so you can read it ok. It is important new questions to ask of ANY candidate running for office and PLEASE do ask one of these at least or any question of your own that lets the candidate know Alzheimer's is an important issue to you!! We need all the momentum we can get to make change here, it isn't easy but if enough people get loud enough about it then it WILL happen!
I watched my father go through all the stages but however you look at it, my progression is slow and there are things I can still do that many others can't so I take this as a gift to do all that I can to help our cause. I will keep speaking out until no one will listen any more. Sometimes I have wondered if it was a curse to have so much time to realize what is happening but like I have said it is what it is and I can't change it so I try to stay positive and work with what I can still do. I do have to pace myself though or my wife pays the price and we BOTH understand that most of the time. I overdo sometimes because I have a hard time saying no but the people that care about me in my life are so good to me they never expect a lot, they ask if I think I might be able to do something and are very understanding when something prevents it. I got sad today when I was reflecting about how I never thought I was anything special or any better than anyone else but you don't realize how good something is until you lose it and that is what it is like with this disease. If you are self aware as those of us that participate are, you realize that wow, I really was talented at some things and I just took it for granted and could have done so much more! That to me is sad, some people have realized what they wanted to in life and that is awesome, for me having ADD all my life I didn't realize I had a near photographic memory before the disease and could succeed with anything I put my mind to but the problem was I had to want it and sometimes that was extremely difficult with ADD for me to realize what the end game was and how to get there. I wandered through life far too much taking things as they happened rather than mapping out where I wanted to go and how I was going to get there. Oh I understood in sales the phrase if you fail to plan, you plan to fail but somehow I was what one trainer referred to as unconscious competent in sales. I instinctively knew how to handle things and therefore was able to handle even the most difficult clients. I was in business to business sales where I developed accounts with repeat business and I really excelled with that. I tried the old cold calling one call close type sales and I was horrible with that because I am way too honest to be successful. I lived by the motto to always do what is best for my customer and I will have that customer forever and it worked VERY well. Unfortunately now looking back I realize I could have done anything I put my mind to doing, I just had to want it. I could have gone to medical school, I could have done anything but I needed to want it bad and put in the work to get it which also was hard for me to connect all of that together when it counted but then I guess they say hindsight is 20/20 for a reason. Too bad you don't get do overs! :-)
It was quite a day! I had the local NBC affiliate show up at about 10:30 am this morning to do an interview with me for the news today. Melissa, a gal with the Alzheimer's Association Greater Iowa Chapter was also here and participated in the interview. They used some photos I provided them and I was very excited with the publicity I was able to provide for my disease. To watch the story click here. This is the version that appeared on the 5 pm news today (It's Sunday) and then there was a slightly different version that appeared on the FOX station at 9 pm because this station does their news for them. It was awesome because they had a teaser for the story at the very top of the news and then again right before the break so there was more video shown than what is on this clip. There also was some different things on the FOX version. I am just really happy after all the years I have been doing things more behind the scenes to now make a difference in the public eye. Very gratifying feeling and documenting it here is a way for me to someday look back when I don't have the memory anymore. Sad but true.
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
There is a call to action today to let congress know that you want them to appropriate the $100 million that was supposed to be earmarked for Alzheimer's Research. If you have read any of my blog you know this isn't near enough but this was something everyone hope congress would allocate with the current bill. That didn't happen so we need as many people as possible to write to congress. The letter is already written for you and the system looks up your congressional representatives and automatically send it to them. You have the option of adding a personal note if you would like to do that. It all takes literally a couple of minutes to do!! Thanks to anyone that takes the time!
Well I got back late Wednesday evening (4/25/2012) from the National Advocacy Forum for the Alzheimer's Association. I wouldn't miss it as long as I have the opportunity to go. It does take a lot out of me though, I always feel totally exhausted for at least a couple of days afterwards. It is well worth it though, anything I can do to help in the struggle to bring more awareness to the epidemic of Alzheimer's and similar diseases I will do as long as I am capable of doing it. This time around was perhaps much more challenging than others because I had endoscopic sinus surgery the Wednesday before the forum so just 4 days before I had to fly to DC. I had continual problems with my sinus while there, trouble clearing my ears during and after flights and lots of headaches. Those of us that suffer from one of these diseases have much less reserve than a non affected person has so when we have any other health problem going on it makes the impact much stronger on us than the average person. I never understood why my father would get so sick when he got what seemed to be a simple cold. Now I understand fully. He was not a hypochondriac as my mother thought, he was confused about what was happening to him and grasped at many of the wrong things while doctors never even considered the disease process going on with him. The forum seemed to be a very rewarding and successful experience. The follow up is what is important and I have to do better with setting reminders to write or contact the congressional delegation that we visited in district. That is what really counts and is a major reason for success with a senator in 2010. You have to hold them accountable for either what they promise you or for giving you a solid answer. I told one congressman who I told my whole story to in 2010 when asked how I was doing, I said well I just concentrate on what I can still do and remember that each day is the best it is ever going to get so enjoy. This is of course very hard in practice at times because you have days where you don't feel so great so it doesn't seem like as good as it is going to get. But actually since the disease is continually progressing it has more affect on me every day, sometimes I feel or experience reminders of that but often I don't. I am lucky that the progression is much slower than a lot of people but I can't afford to let me think the days are any less precious because of that. Well, time to make myself rest a bit.
I always forget, I wonder why :-), to post to this blog. I am troubled right now because for some strange reason this disease has made or allowed me to do a lot of thinking about a lot of very serious subjects. I am much more aware of some things than I ever was in my life when it comes to world problems, politics and science to name a few. I don't know why I didn't spend much time thinking about some of these things in the past, was it because I was always so busy, was it because sometimes I was too smart, not saying that in a smug way but I never appreciated or utilized what I was really capable of in harnessing intellectual capabilities. A lot of that was due to the fact that I have suffered from ADD all my life. I realized when 2 of my 3 biological sons were diagnosed with ADD that I had the problem all my life. It was that disorder that caused me to let my mind wander aimlessly when I was trying my hardest to stay plugged in to what was going on in the classroom. I always had a very difficult time with lectures in any class. It was easier when it held more interest for me but even then I difficulty. When I was diagnosed with dementia the specialist suggested that I should be on ADD medication because he believed my ADD was exaggerating my disease symptoms. So I started Adderal. It did make a huge difference in quality of life for me. I was all of sudden able to concentrate much better on things even though my executive functions were severely damaged. To this point it is the executive functions that have taken the biggest hit. I do sometimes feel a bit dumb about situations though as I will be slow on the uptake as to whether someone is kidding or what decision to make about the situation. It is such a frustrating feeling to have challenges with things you took for granted all your life. Sometimes I think my insight in to my problems is both a blessing and a curse. Sometimes ignorance would be bliss it seems. I suppose at some point I will become ignorant of what is actually going on with my brain as that seems to be the normal course of all of these diseases. Sometimes it bothers me that while I identify with some things others experience with these diseases I am quite atypical in how the disease attacked my brain and in the ability to see it was happening long before doctors agreed. So atypical as I have said elsewhere that until November 2011 it was an educated guess that I suffered from atypical FTD and now it seems fairly certain that it is in fact atypical Alzheimer's Disease. The two diseases while in the same group (dementia) work differently and more is known about Alzheimer's than FTD. My neurologist says there are actually at least 4 different kinds of FTD and that at this point they have no idea how to tell which type someone has let alone any clue how to treat any of them. It is sad that since these diseases were discovered long ago that science just started more intensive research in the last decade. That is partially due to the fact that for a long time Alzheimer's was thought of a normal thing that could happen with aging. It is anything but NORMAL though and it is so important for people to understand that. While I have some slight memory problems more of my problems at this point have to do with I can only concentrate on one thing at a time so if I am not thinking of something I will not remember it timely unless there is a reminder. That is where my love of computers and electronics really did help me in that I keep everything in an electronic calendar on my PC that also syncs with my smartphone. Otherwise I would not remember what I need to do when I need to remember it. Well I am going to try to write more of my thoughts on this blog so that maybe they are preserved long after I am capable of thinking the thoughts
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