A blank. That is what I seem to come up with when I think to post to my blog. I often have many things I want to say but when I think to write a post it seems like so much of it just disappears. This disease, if you are aware of the changes, is so frustrating it is beyond anything I could possibly explain. It can make me sad, frustrated, mad and everything in between. I try to stay positive and stay in the current day but the current day is getting harder. I often flounder about not getting much accomplished all the while wanting to get things done and not knowing where all the times goes. A highly frustrating experience. I can't manage time to save my life. That is the most frustrating of all. In the past time management was crucial to my success and now days I can't manage it for the smallest things. I will start out the day with the best of intentions but soon the procrastination and confusion over what to do next or what are the priorities set in. It is just something very hard to explain and I imagine very hard to understand if you haven't experienced this disease. My variation of Alzheimer's is often more similar in symptoms at this stage to FTD than other Alzheimer's patients. I am having more memory issues but top of mind awareness is the worst problem. Often it isn't that I forget totally about something, it is that if I am not reminded or thinking of it then it kind of disappears until something or someone reminds me.
I write this blog for anyone interested in learning more but mainly I write it for myself and maybe someday family members that are interested in looking back at my journey through this disease. I keep wanting to write it on a very regular basis but it just slips off the radar too often. Another part of keeping to any routine and managing tasks. I also often have trouble, as I mentioned at the beginning, with remembering what I even want to say, putting things together in any kind of way that makes sense and even resembles the way I used to be able to write things. It is all so frustrating that a lot of days I guess I just don't want the challenge. Maybe it is good for me, I don't know. I do know that this week has been incredibly hard so far. I have had some type of cold virus yet again, it seems that I only can feel good for maybe a couple of weeks if I am lucky before picking up some other thing that would have been incredibly minor in the past but now creates havoc for me. When you have one of these diseases you have so little reserve they tell me that when you have anything else going on like a virus it just floors you. My father used to be that way for a lot of years and I never could understand why even a common cold would knock him for a loop, now I know. It just wouldn't even occur to the "normal" person the things that become challenges for us that are just minor irritations for others. The main thing I have thought a lot about lately is that we are all still the same people inside, it is just that our abilities, memory, and personality don't reflect that. It is important to understand that we still have feelings even though some may have their senses a somewhat dulled it doesn't mean it gives anyone license to treat us with anything but dignity. I guess fear is at the base of what most of us really experience. Fear of what tomorrow will bring. Fear that someone will take advantage of us. Fear that someone will make fun of us because we are slower on the uptake than we used to be, usually way slower. I often feel so stupid and realize how much I took for granted my intelligence and abilities all my life. I mourn that I didn't have the focus to do far greater things with my abilities. I would always settle for what sort of fell in front of me and make the best of it instead of striving for great things. I don't mean I wasn't ever successful in what I did do because I had some great successes but it was never really what I had wanted to do. I just lacked the focus to follow through on the things I really wanted. I don't know how much had to do with my ADD which was never really diagnosed until later life or if it was just a personal flaw. I am a very flawed person in many ways but I have always tried to be a good and honest person. That is how my mother raised me, that is how my mother was and I have always tried my best to live up to that.
May 28th, 2013
Well it is done. We moved just over a week ago to an apartment. I thought it was going to be very hard to adjust but it turns out that things are easier here right now. A lot easier to keep a handle on the space I am dealing with and a lot less to worry about. I know my wife has a load of stress off of her now so that is always a good thing. The old saying goes "if Momma ain't happy nobody is" I find to be very accurate. As part of this life change I am going to try to start blogging on a more regular basis.
I have noticed significant changes with my disease in the last year to probably year and a half actually. Right now I am struggling with the decision to just stop taking the statin I am on for cholesterol. I saw a heart doctor and a nutrition expert on Dr Oz talking about how cholesterol really has nothing to do with heart attack risk according to their research. Since Dr Oz is a heart surgeon I figured that he must believe it or he wouldn't have given them the national stage to present their information. I am on the atorvostatin (sp?) - Lipitor generic- which does cross the blood brain barrier and it seems like an odd coincidence to me that it is since I have been on that medicine that I have had what feels like a quicker decline. I will stay on the fenofibrate which is supposed to help with my triglycerides. Honestly it is hard for someone with a disease like mine to think they need to keep their body in tip top shape because it can mean a lot longer in the end stage which isn't pleasant for anyone. I was happy for my father when he finally got peace from passing on because he had lost all quality of life, wasn't eating, walking, talking, didn't know who anyone was and that is painful to watch for anyone that cares about the person. As a coincidence he had heart/circulation problems and he and my Mom changed their diet to a very healthy one. To me it seems like that might have been part of why he lingered in the end stage longSince I was already diagnosed it was nearly impossible for me to go see him because it would send me in to such a depressed feeling thinking that was my future. It is the main reason that I decided I wasn't quitting smoking after smoking since my teens. A doctor actually said the stress from trying to quit right now is probably more harmful than the smoking anyway. Do I care at this point about the time it is supposed to take off your life? No, that is what I am counting on actually. It is completely against my entire life's beliefs to even consider suicide so I would never do that but I also am not going to spend much time worrying about what is healthy, what isn't. I do want to get back in to exercising much more regularly just because I feel much better when I do that. I had a good routine with that for a while and then broke my ankle which put the stop to it. I haven't found the push yet to get it going but I really want to do that. Unfortunately there are many, many things that I WANT TO DO but getting them done is another story. It would be impossible for anyone without the disease to truly understand what it is like but I find it to be very common among other diagnosed people. You just can't get started on things. Well that's it for today.
I am sometimes asked why I have so much insight in to my symptoms and can see many of the effects of my disease when so many can not. I really do not know the answer to that, I have ideas and thoughts but no sound evidence to back them up. I often write about things to do with advocacy because that is my passion now days but I keep thinking I really need to start writing more regularly about my experience with the disease. That is what most people seem to be interested in the most. So I am going to try to remember to write often about thoughts I have about my disease.
First I need to explain again that I have atypical Alzheimer's Disease which is of the frontal variant. That means it attacked areas of the brain that interfered with executive function first. This last year I have noticed symptoms which seem to signal some involvement now with the memory. They aren't things that are huge but scary to me as I used to have what I now think is close to a photographic memory. I absorbed so much with so little effort in my life that I can explain it no other way. I have always suffered from ADD (Attention Deficit component only, no hyperactivity) so I never could realize much of my potential in traditional academic settings. Even when I was motivated, which was extremely hard for me, if it was the traditional lecture, textbook and exam model I struggled horribly and yet in most cases got average grades. Once in a while I would get very high grades especially when the class was non-traditional and sometimes in college I would come close to failing a class. Once I did fail a class and that was so disheartening to me because I knew I was way better than that but I just didn't care enough.
Anyway, as usual, I totally digress. Part of the disease. I start in to tell a story and get sidetracked in to way more explanation and history than necessary. My apologies. So why do I have so much self awareness about what is happening to me? I don't know but suspect it is mainly due to the way the damage has occurred so far. It hasn't seemed to effect my common sense a lot however decisions are very hard for me. There are so many things that seem to be a contradiction to one another that the only thing I can conclude is that the complexity of the brain make this disease seem very strange in the way it is developing with me. I used to be able to spell any word without ever consulting a dictionary long before we wrote anything digitally. I used to proofread my own ads when I sold print advertising and would often catch typos and other mistakes that the proofing department would not. It was a skill I had to develop to not allow my brain to read what I thought should be there since I composed the copy but to actually read what was on the page. Again, this was back before proofing was done in the digital format. It was on a piece of paper. Again I digress, I am trying to illustrate how things were for me at one time. That time has passed however. Life is so different now. I use spell-check on everything I write and I make a LOT of mistakes. My typing used to be very good, now it stinks. These things are so frustrating to me, It is hard to adjust to ever evolving abilities that are less than last week, last month or last year. You can't help but feel like you are continually getting dumber. I never appreciated my brain or what it could do until I started to lose it. I suspect I am not alone in taking things for granted that have always been that way. It is probably human nature for most. Be thankful for your abilities if you are not diagnosed with a brain disease. I would trade this one for any other disease. I really would because I didn't realize how wondrous the brain truly was until mine started to disappear. I think about things to say here when I am not writing and then can't remember exactly what I was thinking, but it was brilliant, LOL! I love humor and will poke fun in a sarcastic way at myself at times, you can't take life too seriously or you will never get out alive! I always loved that joke. So I never mean to write that old pity me kind of thing, I don't feel sorry for myself, I feel sorrow for what I have lost and mourn it but to feel sorry for yourself in the traditional sense is a waste of time and not good for the sole. I do fear the future a great deal but I avoid that fear by taking one day at a time and not thinking too far in to the future. When you have witnessed your father go through all the stages and die from what they believe is the exact same thing I am diagnosed you have to be scared but nothing can be gained by dwelling on it. It is what it is and I can not control it. Some among groups that I belong of diagnosed people contemplate suicide and I do not judge them in their thinking. Perhaps I am a coward to think it isn't an option for me because I have spent my life believing that is never an acceptable thing so it goes against my ethics and beliefs. Still to say the thought hasn't crossed my mind however fleeting would be lying. I do understand that some are in so much terror from their disease with hallucinations, chronic pain and other things that people not diagnosed would struggle to understand. That is why there is so much value to the support groups to which I belong that consist of diagnosed people only. People can feel free to speak their mind without being condemned and know that others truly get where they are coming from with the thinking. Often they write in sort of a cryptic style because the ability is so damaged that is all the can accomplish and that is fine with all of us, we understand. It is awesome for them to feel comfortable getting out whatever they can manage. Well that does it for today I guess, I have many things I hoped to accomplish today and like every day only a tiny percentage will get done. It is so frustrating to want to do things but what used to take me 5 minutes might take an hour now. What I used to do without even thinking about it now requires me to keep focus on what I want to get done long enough to accomplish it. I get sidetracked and the thing I wanted to do is no longer top of mind so I don't remember that is what I started out to do and end up doing other things. I didn't forget that I wanted to do it overall but it did slip out of the consciousness so to speak, it is hard to put in to words because it is such an odd world those of us diagnosed live in that others have trouble understanding it fully. Well, until another day, that is it from "my own little world
Day at the Hill
My local chapter, Greater Iowa Chapter, of the Alzheimer's Association along with other chapters that have any part of Iowa held their annual advocacy day at our state capitol on Tuesday, February 5, 2013. Everything went very smoothly I thought and it was a good day. The picture at left is me on the far right with Representative Joe Riding (my Representative) in the middle and an advocate also named John from my local chapter whose mother is diagnosed.
We were advocating for a bill this year entitled "Alzheimer's Disease Response Strategy" which is a fairly simple inexpensive bill compared to what it is attempting to make better. It ,in part, calls for the Department of Human Services (state level) to be put in charge of coordinating all services, data and information on Alzheimer's Disease. AD is the 6th leading cause of death in America but is the 5th leading cause in Iowa so it is even more important in my state than it is nationwide which is still of huge importance to every American both from a humanitarian and fiscal standpoint. It is important to have a starting place for people diagnosed and their caregivers to find out what resources are available and reduce duplication while tracking data in a centralized location. Right now someone diagnosed is often given the diagnosis and then left to wonder what now? Many don't even realize the resources and help available from the Alzheimer's Association. Recently quite by chance I met a caregiver that told me of her despair trying to care for her mother in her home without any respite except that which could be done by a daughter. I told her about the Alzheimer's Association Helpline that is 24 hours and has well trained people that can tell her many of the resources available to her. But they can not and should not do some things that is more of a government function so we need a master resource within government to tell them about all resources including the association. The Alzheimer's Association is a non-profit that is solely focused on improving the lives of those diagnosed but is dependent on the generosity of the American people. They do not have a taxpayer budget but yet are the single largest source of private funds for research, one of the things the association thinks (and I agree) is very important to those diagnosed.
The weather took an ugly turn for the worse here yesterday. It had been as warm as the 50's last week and arctic air moved in over the weekend. It brought along unexpected snowfall yesterday just when almost all of the more than a foot of snow we got one day in December was gone. Oh boy! I honestly would rather it stay cold than go from one extreme to the other continually because it is so hard for the body to keep adjusting back and forth. You just get kind of used to it being unseasonably warm and in to the deep freeze you go making your body feel cold long after you are back in somewhere warm. Maybe it is age, maybe it is my disease but I am finding winters in the midwest harder and harder to tolerate as I get older. They didn't used to bother me much but they are all I have ever known. Sure, I have taken winter vacations to warm destinations but I have never lived anywhere but this state. Southern Florida type climate in the winter sounds better every winter. But all of our children and grandchildren are here so it is hard to see us moving unless we were able to afford to travel back up here frequently and that is not likely.
So, as usual, I digress totally from the subject of today's blog entry. Monday, it always meant the start of another work week and then end of the weekend. So it is understandable why so many people dread Monday. People often live and work for the weekend because it is when they get to do what they enjoy most. Some are lucky enough to love what they do for work and perhaps weekends aren't a big deal. I was never that lucky. While the job I did for the longest period I really did enjoy most aspects of it but I still thoroughly enjoyed my weekends. Now days I am on disability and I am home all the time so one would think Monday is just another day. But it isn't. I don't really understand it, whether it is because my wife has been home during the weekend all day so it is a change to the daily schedule or just ingrained habit that Mondays are my least favorite day I really don't know. I do know that I rarely have a good Monday as far as productivity when left to my own ability to motivate and figure things out. Sometimes they feel like downright ugly days and I don't know why. It doesn't really make sense but as one who always tried to use logic and understand things I have had to realize there is no understanding many things about this disease. Some things just plain don't make sense. I know through the online support group I started, the in-person support group we go to and various other online support areas I visit that many of the experiences are common but they just don't make much sense. Those of us diagnosed often hate change of any kind, especially big changes in schedule, unexpected changes are a big one for me. If I know what to expect then I can deal with it easier but unexpected when it wasn't necessarily what I wanted can really throw me for a loop. I also struggle more and more with emotion and this is something that while not totally uncommon is possibly not as common with Alzheimer's as it is with some other types of dementia. But being atypical I am a very strange mix of symptoms that doesn't neatly fit in a category. I do think that even though I am atypical it will one day be discovered that there are more people with my variant than they realize right now. I would still be diagnosed as atypical FTD if it were not for the information on my father's brain autopsy. I think many that are like me and don't for a second think it could be a brain disease causing their problems also go undiagnosed for longer periods than I did and it leads them to losses that are much worse than mine. It often causes people to be fired from their jobs, ruins marriages and causes great harm to family relationships because no one can understand why someone seems to be acting the way they are not knowing there is a disease process at work. These are just my opinions and hunches but I think one day they will prove out to be true.
I am going to write about diagnosis today for those that don't know a lot about dementia. Those of you that do there isn't going to be anything new here for you. I have so many things in my head but I have trouble focusing on what I want to do so I don't write on a regular basis and there are many things that could be useful to blog about about. I am going to make more of an effort to get in a habit of doing this regularly. Always easier said than done with this disease.
I have a diagnosis of atypical Alzheimer's Disease. How this came about after a number of years with another dementia diagnosis to start with is described in my story so I won't waste time repeating that here. What I will talk about is that I really do hate the word "dementia" and many diagnosed people do as well because of all the baggage and negative connotations to the word. It is a scary word. You are demented? How scary. See what I mean? Anyway, dementia is the all encompassing word used to describe a very large number of diseases under the umbrella of dementia with Alzheimer's Disease, Lewy Body, Vascular Dementia, FTD and many, many more. While I was told by one of the world's authorities in these diseases that it was medically undeniable that I have dementia it is only thought that I have atypical Alzheimer's, in this case for very good reasons but still it is not 100% sure that I do have that variation. No one diagnosed with any type of dementia is a 100% in their diagnosis of the subtype until autopsy or a biopsy. Now a biopsy can be done but why? There are obviously major risks to making a hole in your skull, removing some brain tissue for biopsy. If there was something of great importance for treatment to be learned then it might be worth the risk as it is with things like brain tumors but currently there are no treatments of any of the dementias that slow or stop progression. There are only treatments that can help with symptoms. And there are drugs approved to treat the symptoms of Alzheimer's Disease that are commonly used for other types of dementia off label, which means they aren't really proven to make a difference with those types of dementia but they don't have anything else to give you, so they give you those drugs believing that it does help some people. It is all with best intentions by doctors, don't get me wrong, I am not saying this is a bad practice as some of the drugs do make a difference for some of the patients.
I do know some patients with diagnosis such as FTD that have decided not to take any of these drugs after having tried them, not being able to tell any difference and deciding that the cost of the drug was too much for their limited budget given they didn't feel like it made a difference. Others choose supplements and the "best practices" which can be found at the Alzheimer's Association web site through the links page of this site. Best practices does have scientific evidence to show it is the best possible thing we have right now to possibly make a difference in the rate of progression with these diseases. I believe it is true yet it isn't always easy with this disease to follow the guidelines. Apathy is a daily battle for which I only win sometimes.
So hopefully now you know, if you didn't already, that any diagnosis of a specific type of dementia is not 100% certain. They can be 100% certain you have dementia but not 100% certain of which type without an autopsy, which of course you have to have died first, or a biopsy which while you could find someone willing to do that most ethical physicians would refuse because the risks far outweigh anything that would be learned from this procedure. Certain diagnosis like Alzheimer's have a much higher rate of accuracy than say a diagnosis of FTD. A diagnosis of Lewy Body is generally pretty accurate I believe because there is a known bio marker for that disease but from what I have learned none of them are 100%. While the diagnosis process is evolving and I am sure improving the last I knew subtypes like FTD were only sixty some percent accurate upon autopsy so there is much room for improvement.
Well I have been feeling about a thousand times better the last couple of days! I had a horrible sinus infection and the second antibiotic did the trick. It is one I have never been on and I think the problem with the other one is that I have been on it so many times for sinus infection that the bacteria is resistant to that one. I know now some are advising doctors not to prescribe antibiotics for sinus infection because of the issue of creating super strains of bacteria and my brother who is a microbiologist has been saying for a LONG time that doctors vastly over prescribe antibiotics and create a lot of problems that way. My thing is that I don't ask for them when I have a sinus infection and many times am able to get over them on my own but when they become debilitating what do you do other than that because I have tried rinses and other things like decongestants etc and they just don't make a dent. It is incredibly hard with this brain disease to go on and on when they get that bad because I can't think straight because my focus is continually interrupted by the pain.
We actually, should say my wife has because while I have often been with her I have made virtually no decisions or been able to keep track of things, have most of our shopping done. We still have some to do but we are actually way ahead of where we often are at this point. That seems good. We haven't done any decorating so it doesn't seem much like Christmas around here and with the weather being an all time record breaking year for high temps and lack of moisture it hasn't felt much like Christmas either. Yesterday it was 68 here shattering the old record of 63 and lately our lows have been above average highs for this time of year. Crazy! It is the warmest year in recorded history and last night they said by the end of the week we will break the record for number of days without at least an inch of snow on the ground. Snow hasn't even been a possibility much this year as the temps have been above freezing so much of the time and we have had so little moisture all summer and fall. It worries me for agriculture and the environment if we don't start making up some of the deficit soon.
I have been feeling more disjointed from my surroundings often lately. It is very hard to explain to someone that hasn't experienced this but things just don't "feel" right and you feel kind of separated from what is going on around you. It is also so easy to miss a lot of what goes on around you. I am not exactly looking forward to the commotion of the holidays as it becomes a bit overwhelming at times when large groups of family get together and there are a ton of kids. I can deal with it though so far and hopefully for a lot of years to come. It can just be a bit of sensory overload at times.
Sad but true.
I have Mad-cow!
The title and graphic refer to the character "Denny Crane" portrayed by William Shatner on Boston Legal. It was insinuated and later shown that his character suffered from Alzheimer's Disease. I loved that show, it had such clever writing, imaginative characters and funny dialogue and situations. It was probably my favorite show at the time. I always recorded it and watched it no matter what. It seems rare now days for shows like that to be developed for the broadcast networks. There are some funny shows on now with Modern Family and Big Bang Theory being favorites. I have found some very riveting shows on cable networks and wonder why the broadcast networks aren't being as creative. One example is Sons of Anarchy on FX.
It is funny now days because I don't have enough memory issues yet that I forget seeing the shows the first time so I am not big on the re-runs but as time goes on I do find that I can laugh all over again because I don't remember the show as well as I used to remember them. Little by little the disease has seemed to started to affect my memory where in the past it was mainly executive function issues with only slight memory issues. Now days I have to make a lot more notes and make sure I have electronic reminders on everything. I would miss about every appointment, meeting and other commitments without the reminders. I use Outlook on the PC which syncs both ways with the calender on my phone. That has been perfect for me because even if I am not around the computer I always have my phone with me. So that is about it for today, just don't think I had mentioned the "Mad-cow" thing before and I still find it funny that his character always insisted he had Mad-cow disease.
I have started a new Facebook page where I will post information on research, statistics and important advocacy issues. If you click on like on the page it will show up on your wall when there are new posts however not your friend's walls unless you comment or share things.
Please take a look and if it is something that is interesting to you please click like and follow the page. I encourage participation through posts, comments etc. See the link below.
Also, I have mentioned before, but I also have a secret support group limited to people diagnosed with dementia. If you are clinically diagnosed please send me a message through the contact me form on the website here with an e-mail address or another way for me to get back to you and once we learn a little about each other if you are interested I would be glad to add you to our group. It is not one of the real large groups out there but it is a very supportive group that allows those of us that are diagnosed to discuss things that people that are not diagnosed have trouble identifying with and also people feel free to say whatever is on their mind about the disease without feeling like they will be criticized.
The new FACEBOOK Page is https://www.facebook.com/AtypicalAlzheimersDisease
See Home of my site to learn more about me.