ADVISORY COUNCIL ON ALZHEIMER'S RESEARCH, CARE, AND SERVICES
Public Comments on Advisory Council Meeting, October 2014
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M. Ellenbogen | 11-13-2014
Based on the question I believe I was asked by George, I decided to expand on it since I may have not painted the right picture an may have rambled a bit. I will share to attached documents that have been edited for me. This email will be completely unedited and you will see firsthand how my writhing and word finding has been impacted. I decided to give you an idea on what is like for me to plan and be at NAPA.
It all starts almost at the end of one of the meetings. I need to add it to my outlook otherwise I may forget about it. Once I get that information I will probably check it 3 or 4 different times just to insure I entered it right. I cannot begin to tell you how I want to select a certain date and instead I choose the wrong on. I can tell you I cannot understand that as I was such a perfections.
As we get closer to the date I search for hotels that I can get a better rate. I cannot begin to tell what burden it cost this is to me. My wife and I are not always in agreement in doing this and I feel so guilty of spending the money. When I final find a hotel I give the information to my wife to do the booking. I am so afraid that I will do something wrong or even book the wrong date or even misunderstand what they tell me. At one time in my life I would have made this trip all in the same day even though it would have been exhausting. Now days because of my location and in order to be of useful when I attend I need to arrive the night before so I am not stressed out. I am a little without the drive already. When I am finished the meeting I am so stressed and over whelmed that I would truly be a risk of driving all that way. My head feels like it is in the clouds and so unclear. I cannot begin to tell you how I need to unwind an relax after the meeting. It may be easier to possibly take the trains to get there but that would add to the cost and so much more confusion to me to try to interconnect with the trains and find the different ways to get to them from one train to the other and on time. I know this may be hard to understand as it is for me who once traveled regularly this way but when you cannot find the signs and get lost finding room numbers in a build then you would understand what all those other things do to you and the amount of pressure and stress it creates. ( on a separate note. I went to one of the congress buildings with a room number. I must have spent over a half hour or more trying to find it. I keep asking people to point me to it but somehow I just kept missing it. I cannot begin to tell you why. Thank god I finally ran in to someone that I knew and I asked them if they could personally take me there. I cannot begin to tell you how embarrassed I felt that I could not find my own way and do something so simple. Even with asking for people to point me I could not get there. It is even hard for me to understand why I cannot do that. That is why I am terrified these days to travel the trains, airports and metros but I will If I have to. I just know that it may have some issues along the way, Just hope they are not costly. I do real hat that to because I was so cost conscious in my life so that creates another level of stress)
As we get a month out I try to recall what new issues need to be addressed that may be important. Not necessary related to your topic. That would be tomuch to even begin to figure out. I also hat to be repetitive as so many tell me I should be. I believe you are all smart people and get it the first time. I cannot begin to tell you what pressure it si to try to stay within your time frame and I am not even sure I can even figure that out. I usually come up with so many topics and must limit it because of the time. I really have trouble prioritizing any more. To me they are all important. I believe part of the problem is in order to do that one needs to use executive functions that I no longer have or capable of using. I do believe they are there, just some broken path to the highway. And I do have the thought an times but just cannot seem to get them into words because as I try to think of what I am thinking to translate it stress me out that I forget what I am trying to write. It is crazy by far. It like I can only handle one task at a time and anything else is overload to me. Go figure, people say I had one of the most stressful jobs in my career and I thrived on it while others could not keep up with me or even handle it. It is so hard to write these days because I cannot remember what I said in the previous sentence. In fact as I write as sentence I make so many errors and by the time I go back at the end of the sentence to reread it I have so much difficulty trying to even know what the words were that I was using just for that sentence. I can take so much time trying to do that part. As I right and all I can say is thank good for Word. I can assure you if that did not exist today I would have died by now. It takes what I can no longer spell and make sense of it for me. Not always sure it using the write words. Sometimes my spelling is so bad and I cannot even being now to even spell the word for it to even help, so frustrating.
Now after probably many days of working on my speech I sent it to Emma Steel who is my editor all the way in the UK. She is the only person I could find that was willing to help volunteer her time. I had reached out to so many local like high schools, colleges and no one would give me just a little time to help in editing my work, not even a friend who was teacher who said she is to busy to help. All I wanted was one or two things a month. So many people offer there help but when it comes down to asking them for it they don't . Very frustrating for one that always help others when they were in need. I need it now so badly just the be heard as I am slowly losing my abilities and there is no one there for me. While I ask my wife on some It so much for her to handle as I have already added to burned on her already.
Emma does such a beautiful job especially with the poor information I give her. I could not even image what it must be like for her because I cannot even figure it out and I wrote it. Takes a special kind of person. She does all this from the goodness of her heart and I am demanding at times.
When I get the work back some time we need to go back a few time because some of points may not be there with the passion I like to put in this. Many times I just settle just because it's not worthy of the added work I would need to place on her and don't want to make her feel bad. Sometimes I amy go to someone else to help in order to get it closer to where I feel it should be. To many times in my writing I go over board and they all tell me to tone it down which I do many times but I have learned in life that on very important issues you need to be very direct if you want something done and it may need to be unpleasant if you tell the truth. While you folks my not believe it I hate it every time I must say something negative to you. It does hurt me inside and I continuously think about it as it may possible jeopardize the relationship we have. This works on me from before the meeting to weeks later. Even more because when I speak there are no comments made to even get a sense to how you feel. Any way once I final get my speech I send it to two trusted individuals who are in the dementia arena for guidance. Based on their comments I may change or remove something. I always want to insure I get it right since I may no longer be the best judge for that. These people have been extremely important to me in making all this possible.
If everything is okay with the speech then I need to get it ready so I can read it. First I change the font size to 18. Then I need to place unusual spacing in there so I can continue to read it and so I can stay focused. If I do not do this the words all look like they are shifting. I have trouble f keeping track of whereI am and if the font is to small I see the entire page of data coming at me as one, and cannot focus on a simple word. This what I have been able to figure out to help me cope and to be able to continue.
A few day before the meeting I must write an agenda of the places I need to be it with the complete address information. I will check that over at least 3-4 times to insure I did not error. If I am to meet with someone and have a phone number I will ask my wife to added to the cell phone so I have it in the memory. I can no longer do that. Kind of strange for someone who was responsible for Data and Voice for 70,000 people and was always a gadget person. I have become fearful of much of technology because I struggle to use it and cannot remember the mistakes I make so I don't do them again.
The day of or night before I need to get ready and pack what I need. I really rely on my wife to do much of it any more as I cannot keep it straight and remember what I need or packed. It also seems that I lost the ability to kind of plan to organize ahead matching cloths which I was once very good at. I would have never allowed my wife to just select something and be okay with it. I try to place as much as possible in the car as soon as possible so I don't have to many things I need to worry about when I leave. I even add my wallet to by brief case because I have ben know to forget it recently.
The day I leave I need to insure I am not in one of those days that my mind is all foggy. If that happens I would probably need to cancel the trip because I would not be able to drive that long under those conditions. I worry about that for while till I get on the long stretches of high way. When I do start out in my car I add the address to my GPS. From that point on till I get there I am on autopilot and following what it tells me to do. I don't always understand so I may take the wrong turn but the great thing about it is it will recalculate and get me there no matter how many mistakes I may make. Cannot even image what life would be like without it. I never even needed a map before. It was like I had built in GPS. While I am driving I am using ever once of energy that I have to try to stay focused and alert to what I am doing and the road and cars around me. I cannot begin to tell the amount of stress that is created when I drive now days. While I drive good it takes so much energy to do it. I feel like I am leaving my finger prints embedded in the steering wheel. I pretty much tune out everything else. Since I consecrate so much on the road, I sometimes have difficulty in following the road signs following on where to turn but that is okay because I have learned to not panic or get upset as much. That is the worst thing when can do with this disease is get stressed out because it leads to a serious snowball effect that can really make the mind go into a cloud and so unable to think. That is probably the most important think one can teach us. Not to panic and remain calm. I believe if we can master that it will go a long way. While I have driven to DC so many times it would sure be nice to look at place on the road as a landmark so I can gage about how close or far I am. Many place I see appear like I seen them while others look so new to me and cannot even understand. Sometimes all of a sudden I thing I know where I am going to only realize I am confusing it with some other road or place and it had nothing to do with where I am headed.
I was once the person that waited to run on fumes in the car before getting gas. Today I start to panic as I head to DC because I have gotten caught in paying super high prices for gas because I went to the wrong location. I still had tree bars but concerned of not being able to find the next gas station because I cannot follow directions. Because of that today I now try to fill up before Dc and I still pay more that I would like to but I do so many other stupid things to day that just keep adding to my cost of living because of lack of memory. It amazing how much one needsit and how we take it for granted until you lose it. When I final get there it is such a sense of relief to be able to check into the hotel. I call my wife to let her know I got there. Sometimes she calls me as in this last time because it took me much longer to get there and she was wondering why. Lots of traffic. In the hotel it can be easy or embarrassing when you need to fill the form out. I may not remember the type of car I have or even how to spell it. I do get my address wrong from time to time now. I usually don't understand all they tell me with their instruction on the internet and all the other things they say. I almost need a hotel for dummies on a piece of paper to read as I needed for what they tell me. Then I go to park my car which some time is challenge. I try to use the handicap spaces because It makes it easier to find, Just need to get to the right level. But as Leave the car and others are around me I feel so guilty by taking that spaces as they see me carrying all this luggage and walk without any issue. It has already happened where I could not find the car, so this method works.
When I get in the room I am very careful to put my items in one or two places in fear that I may lose track of them and forget them. It takes me many hours to finally unwind from that drive. Before I leave the hotel room I go thought some kind of a ritual every time. I feel all my pockets multiple times that I have all what I need. My instructions paper that also has the address, my room key and other things.I probably do this 2 -3 times because I may not remember I did it on unsure. As I am going down the elevator I may be rechecking again. I am not sure if it because I have total lost self confidence in myself or if its I forget I had checked.
Now that it's time for dinner I would like to really go somewhere else, but close to hotel makes it easier since I don't to risk getting lost and don't like driving when its dark. Especially when I am out of my comfort zone. When I return I call my wife to let her know I am safe so she does not worry. I could only imagine what goes through her head when I leave. But she wants me to keep my impendence for as long as I can even if that means there will be issues along the way. Sometimes she may need to guide me of setting up my alarm or the internet on my tablet. I do call the hotel for a wakeup call but like to have a backup in place. That night I try to prepare most of what I need for the next day so I am not forgetting something and to keep my anxiety down. The next morning I am head for my NAPA meeting and of course doing my rituals. I have even more to do because there is so much more I must take with me this time, like brief case with all my information, pens, business card.
This last time it was such a pleasure because someone was kind enough to offer to pick me up from the hotel. If not I would have receive a ride to the metro were I would have difficulty in adding money to the metro card. I really need someone to help me do that. Gas stations is even a problem some times because they are to quick and I am slow at replying. They need an AD mode to select. If I had the card then I only need to wonder if I get to the writ track. People are not so friendly when you are stopping them on the way to work as they are rusting for their train. Oh and the noise in those places really create a problem for me because I cannot filter the sound out so when the person is speak to me which I would have hard time understanding any way and remembering the noise only raise the bar for my failure.
Once I get to the sop if I am lucky to get off at the right one because I find the signs that tell you the stop a bit confusing at times. It's also hard to process as the train is coming into the station to read what is on the walls with the anticipation of trying to get off and all those people around me. Once I do get off it becomes a problem of asking lots of people to guide me so I can find my way at NAPA. I always ask two people because so many send you the wrong way. Not sure why people can just say they don't know.
Now that I made it I start to unwind because all this builds new stress. It makes it challenging going thru the metal detector because I don't always remember what I should remove. When I get up stairs I always feel a bit awkward because I cannot remember people's names and not always even sure of their face. Sometimes I think I met them but I did nt. I never had those issues in the past in fact most were surprised by my recall. I actually look forward to see people with name badges as that helps me a lot. Not that I am always able to read it as I am starting to speak with them. Can not multitask. I was a bit disappointed at this last meeting because they did not use the tags. When the morning gets started I am pretty good. It takes so much energy for me to sit there and try to focus and concentrate on what is being said. It's like using 110 present of all my power during that time. (I know this is hard to relate to but picture a moment in your life were it required full concentration and all your attention to insure you did something right. It feels like you are drained if you did it for a while. That is what happens to me most of my day as I do what most of you just easily cruise through the day) When you folks talk I do not necessarily hear everything you say. Well I guess I do but my mind doe not process it fast enough. So I am constantly trying to fill the gap for missed words and trying to make sense of it all. As I get back from lunch I am stating to feel the drain on my body which is huge by then. That whole afternoon I am fighting so hard to keep my body engaged to continue the process of absorbing what you are saying. I start to lose some of that ability but when topics of real interest come up I do get more out of it. You will me going out more often or standing. I am trying to keep myself calm as I am real having a very difficult time being there at that point. Just try to image that you had to concentrate on one thing all day. This time it was great because you made it so much better because of the technology. I could hear very one because of the new microphone. I cannot being to tell you what an improvement that was for me. Not so much when we lost the projector. I could not follow and had lost of difficulty. In fact those handouts are useless if you cannot even read the print. You may as well save the tress if it cannot be read. When the meeting stops it's like instant relief and I start to unwind. I do like to speak with many of you after. I am okay at that time but still winding down..
The trip back to the hotel is about the same but this time my head is a bit foggy. Ok for a short drive but not long.
The next day when I leave DC I always know I am going to get lost. There are two areas that I keep making mistakes and for the life of me I cannot remember were to go. One day I made the same mistake 3 times. This was during rush hour traffic. Can you image to turn wrong and it takes 20-25 minutes to get back to where you turned wrong original and you still not sure where to turn and turn the same wrong way again. That day I was almost ready to just pull the car off the road and call for help. Lucky something in my mind told me to take a completely different route for a while and this way the GPS final figured out a new way. Talk about frustrations that day. That is why I no longer drive home the same day. It is so much more relaxing to leave DC at 6:30 AM. I just want you to remember because so many of you are thinking why is this guy driving? I and many others who see me drive agree that I do very good. I need to keep an eye on that as I know it won't be long before I can't. But don't confuse ones driving capability to being lost or getting lost. That is hard for many to understand. I have been put in many recent situations where my reaction was needed to avoid any accident and I did better a normal person may have reacted. My wife was in the car. My reactions are still good. They may be slower then they were, but stall faster than many on the road without AD. My biggest fear is to be in an accident and it as absolutely not my fault, but because I have the AD someone may take action to make themselves feel better. After all mydoctor made the recommendation 6 years ago to stop because I would not know the day on my own. Just think how many good years would have been taken away from me. As you can see I did skip a lot from my trip but when I arrive home I finally have this huge sense of relief that I was able to make it to the meeting without any major issues. I continue to wonder if I can make the next or was this the last.
I must tell you I did not even think of all these things being that bad until I wrote this. Is even worse by far when something unexpected happens like getting lost or went down the wrong metro lane. I waste so much time an energy all day long just to correct mistakes.
I do believe I did much better in this wring than usual. I really spend a long time putting this together. About 11 hours and it seemed to be clear headed.
I cannot tell you how please I was that someone asked me a question at the last meeting.
I hope this more of a incite for what it is like to be in my shoes.
I always welcome your questions because that is the only way people will learn.
P.S, Whilethis letter was not edited I did share it with my editor who made the following comment.
Ironically this is the clearest I have seen you write in long time, your spelling is almost spot on, and so is you word usage etc.
Not sure why but I did spend a lot more time on it. I just hope you read it all.
Alzheimer's Disease, My Daughter, and Me
I am not sure how much longer I can take this. I truly miss my daughter, who lives in New York. She is so much closer to home nowadays than she was four years ago. This weekend she decided to come home to visit. While I wanted to have some kind of conversation with her, I struggled and could not seem to figure out what I should say. I am so glad when she is here.
It was Sunday afternoon when my wife said my daughter would be leaving in about 45 minutes so she could catch the bus. They were both sitting at the kitchen table. I felt like I should go there and spend some time with her before she left. So I turned off the TV and sat at the table. I sat for almost 50 minutes and hardly said a word.
That whole time, I kept thinking that I must and need to say something, but I just could not figure out what to say. I felt like crying so many times because I just could not come up with any words. My mind was so empty, without any thoughts. During the last 10 minutes I felt even more pressure to say something, but I had no thoughts in mind nor could I even be creative enough to start a dialogue.
I cannot understand why it is so hard. I can jump in on conversations once in a while to make a comment, but I struggle so much to have some conversations. I really do not believe people understand how painful Alzheimer's disease can be.
Twenty minutes after my wife and daughter left, I began writing this. I was doing everything possible to hold back my tears. Is this what I am becoming or have become?
So many people say to me, "You don't seem like you have Alzheimer's or dementia." I only wish they could see the pain I go through on a daily basis. I am not sure I want to continue down this lonely road much longer. I only wish my daughter remembers me for who I was and not for the person I am becoming.
I love you so much, Jamie, and I wish I could still show it. I am so proud of who you are and have become. I only wish you could feel the same way about me. Just another bad day for me, but it was so wonderful to see you.
I am so fearful that it will become even worse, not that I am sure how that is possible since I did not say much at all.
I pour my heart out to you not for your pity, but for you to do something to change the course of dementia. No one should be forced to deal with this. There are no excuses for doing nothing.
Michael Ellenbogen [http://michaelellenbogenmovement.com/] was diagnosed with Alzheimer's at age 39, in 2008. He has since started a campaign to raise awareness of the daily struggles of people living with Alzheimer's and dementia. His new book, From the Corner Office to Alzheimer's [http://www.amazon.com/Corner-Office-Alzheimers-Michael-Ellenbogen-ebook/dp/B00EPI0ZHQ/], is available on Amazon. Follow him on Facebook [https://www.facebook.com/MichaelEllenbogenMovement] and Twitter [https://twitter.com/MichaelEllenbog].
Imagine if you will waking up one morning and going about your daily business, you have had breakfast and are about to leave for work, but you can't remember where you left your keys. Common enough you say; we have all done that at some time or other. Your wife hands you your keys and off you go. Life carries on as normal for a few weeks then one day, while at work you have to call a colleague, but you have inexplicably forgotten his extension number; an extension number you have called numerous times a day for the past 10 years. You feel silly but put it down to being tired. You work hard and hold a high profile position in a financial institution so it is understandable that you will have memory lapses now and again. Like the key incident you laugh it off.
Over the next few months things start to get worse, you are forgetting people's names even though you have worked with them for many years, you are making stupid mistakes at work, you are forgetting to go to meetings, you are finding it really difficult to do the simplest of tasks, you continually forget where you parked the car. Again you are told by friends and colleagues and doctors that it is down to stress; that you need to slow down, maybe take time off etc. But you know there is something wrong, you know that it is more than stress.
So you start keeping a record as best you can and you pester your doctor for answers. One day you get the answer. An answer no one expected.
An answer that will change your and your family's life forever.
You have Young Onset Alzheimer's Disease.
Alzheimer's is an incurable, progressive loss of brain cells. In the beginning it targets the memory and speech, as time goes on the symptoms become wider ranging and debilitating and include disorientation, difficulty judging distances, poor vision, poor speech/writing abilities, repetitive behaviour, mood swings, and depression. Then in the final stages of the disease it is not just the mind that is affected; the body is rapidly declining also. In the late stages of Alzheimer's there will be difficulty swallowing, a needed for assistance when changing position or moving from place to place, there is increased vulnerability to infection and a complete loss of short-term and long-term memory. Death is slow, painful, undignified, and inevitable.
My name is Michael Ellenbogen and this is my diagnosis.
For the last decade I have campaigned on behalf of myself and all those suffering from this devastating disease. Why do I have to campaign? I do it because over five million Americans have Alzheimer's, and other forms of dementia. And what is more shocking is the lack of knowledge out there about this illness.
I have become extremely surprised by the lack of public commitment to my pleas for support of Alzheimer's disease. While some may be sympathetic in the moment, there appears to be little follow-through.
People look at me and think there is nothing wrong; I am not in a wheelchair, I have full use of all my limbs, I can see, hear, speak and listen...... but not for much longer.
I am dying; day by day hour by hour my life is ending.
So much of my life has changed with this disease; household chores that were once second-nature, like cutting the grass have become frustrating difficult and for me to perform. I leave things lying around the house; not to be difficult, but because I have forgotten where they go, and I am also afraid that if they do get put away I will not remember where they were put.
I was once a very sociable person but now I go to a happy affair only to be tortured by the noise and surrounding conversations because I am overwhelmed by the stimulus of sight and sound. I don't understand what people are saying; the words run together and they may as well be speaking a foreign language.
I can no longer write or speak like I used to, what you a reading now has been written by a friend of mine who helps me put my words onto paper. My friends have become distant and even when in their presence they will address my wife, even when enquiring after me they rarely direct their questions to me. This is heart-breaking for me, the fact that they feel they can no longer talk to me really saddens me.
Grocery shopping with my wife is time consuming and frustrating as I find it difficult to make decisions and plan ahead for meals. Eating out was something I used to enjoy but now I am unable to read the menu and assimilate the information into a decision. At home my wife has to assemble my meals in a series of individual decisions.
There was a time when I could follow a map and easily get from point A to B. Now I rely on my wife for navigation, I know that it won't be long before I can no longer drive and that really upsets me because I love going out for long drives in my car, it is the last vestige of independence I have left.
I used to be smart, I worked hard, and I accomplished a lot. Seeing all my failures today are giving me a new appreciation for the things I was once capable of doing. I was a very different person, but that intelligence still shines through occasionally as I am challenged to invent new coping strategies to respond to these changes.
This disease is costing me money in so many ways because of the problems and issues I create; I have broken gardening tools because I have forgotten how to use them properly.
Personal grooming is a problem as well; as I can never remember the last time I washed my hair or changed my clothes.
In meetings I will lose track of the subject matter if the information is shared in long sentences. If I am speaking at events or meeting I must have my speech printed a large font size with clearly marked punctuation.
Sometimes my mind does not communicate with the rest of my body; I had to turn the grate on my fireplace but instead of tentatively feeling if it was hot or not I just picked it up and badly burned my hand.
I can no longer use my video recorder. I had trouble remembering which way to turn off the water in the garage for the hose
I lost my job because I could no longer function in the environment, so now I spend my days advocating for Alzheimer's it gives me a reason to get out of bed in the morning, it stimulates what is left of my mind.
Do you know what the worst part of this is? I have to watch my wife struggling to do the things that I once was capable of doing, and know I cannot do anything thing to help. I see my wife becoming stressed, depressed and overwhelmed, and know it will only continue to get worse.
My wife is on the road to hell; I have not even reached the worst stage. That scares the hell out of me.
I am losing my mind and I can see it happening, but I cannot do anything to change the course. I am slowly becoming a child again, and will soon be a body with no mind.
At what point should I give up? At what point would give up?
What do I have to look forward to?
Why should I put my wife through any more pain and sadness, do I really want her to watch me slowly die in front her eyes?
Any chance I had at a good life and a happy retirement has gone; my life is pretty much over. If you were in my shoes would you want to carry on, knowing what is in store for you?
I want to die on my own terms, I want to die with dignity, I want to die while I can still make the decision to die, and that is a very small window because I know in the not too distant future even that choice is going to be taken from me.
The laws we have in place today do not take into account the needs of people suffering from dementia; we need to rethink not only how we regard people with this disease, but also how we look after them. We need to have things in place not only to help those suffering live vital and productive lives, but also provide the means necessary for them to die with dignity and at a time of their choosing. We need to take our heads out of the sand; we can no longer turn a blind, this is a very real problem, this is happening now to millions of people across America.
We need your help!
I have three issues I would like to address briefly today. Please contact me via telephone or email if you have would like additional information concerning any of these issues.
As many of you know I have shared with you my vision of dementia friendly communities. I believe Project Lifesaver International should be part of our future plans. Project Lifesaver provides timely response to save lives and reduce potential injury for those who wander due to dementia including Alzheimer's.
The task of searching for wandering or lost individuals with cognitive conditions is a growing and serious responsibility. Without effective procedures and equipment, searches can involve multiple agencies, hundreds of officers, countless man hours and thousands of dollars. More importantly, because time is of the essence, every minute lost increases the risk of a tragic outcome. This is a program that must be offered in all states. We currently use tax dollars to pay for these bands that track prisoners under house arrest, we need to make this technology available to those with dementia, at no cost, to keep them safe. Statistics show it will save money and produce better outcomes if we all invested.
My next concern involves the verbage associated with certain medications. For many years now most in the medical community, non profits and I have been preaching what I believe is questionable information to others. I have been telling people that (colon - ester - ace) cholinesterase inhibitors, such as (Dan - ep- azil) Donepezil and (Meh - man - teen) Memantine may work for only 50 % of people and when they do they only work for 6- 18 months. This is the information reported by drug manufacturers, physicians and patient education portals. I have learned that this is reported because that is the longest length of time that the drugs have been clinically studied. Recent information, circulated by many experts in the field, suggests that these drugs can continue to be effective for a longer period of time.
The language concerning the use of these medications must be changed if we are going to help people. The benefit of continuing medication is a complicated question as I have found in the last 6 months. People are encouraged to check with their clinicians and make an informed family decision. While further research needs to be conducted, whether it's best to continue or discontinue (colon - ester - ace) cholinesterase inhibitor use I believe we need to error on the side of caution and include some language that states that it could have a negative effect if one was to stop taking it. It can also include that more scientific studies are needed. I have spoken to many doctors over the past few months who are also looking for clear direction. I would think we should make the decision on the side of caution and keep the patients best interest in mind. I believe that if the patient started taking these drugs and they did benefit from them originally then they should stay on them until the end, even if the benefit is small. When your brain function is at a very low capacity, any help is good. I say this as long as they do not have any serious side effects from the medication. I have a comprehensive bibliography on this topic and suggested guidelines in medical language that I can share. It includes information from many doctors/experts in the field. The reason I am so concerned is because I constantly hear others who are on the drugs question whether they should still be on them after they have been taking them for over a 1 1/2 years. I have also spoken to some who stopped it and realized in a week or so that they were not performing as well and went back on the drug. Then I have heard some horror stories where they stopped taking the drug and realized it had helped. When they went back on they never seemed to recover to the same level of cognitive function as they were before. I say all this based on their own viewpoints and those of their care partners. They regret ever doing this, but they only did it because of what they heard about effectiveness only lasting 6-18 months. Please help change this confusing data.
Finally, as you know I have been pushing for the World Purple Angel to be the same as the Pink Ribbon or as the handicap sign. We have now trademarked that here in the US and in the UK. It is free for use with our permission if the guidelines are met. Please adopt this symbol as part of your continued support for dementia. We need to stand as one on this cause.
On one Final comment - At our last meeting I think some of my comments were taken personally. The goal behind them was a call for action. Many outside of the committee told me that they would have liked to have said those things also. My response to them is don't be afraid to speak up honestly and from the heart.
M. Ellenbogen | 11-07-2014
It was nice to see you all at the last meeting. What I am about to say should not be taken in any negative way about you, as I have the highest regard for all of you. I have four key points I would like to make. They are by no means in order of importance as they are all of the highest importance and should be treated as such:
Urgency is a word that I believe should and must be in your plan, preferably at the top of your list. I am very unsure as to why this word was not considered given that this disease is our greatest national health and economic threat in this century. Lack of action now will have serious consequences.
Additional Council Representation by People living with dementia -- As one who has sat through and heard many Council meetings, I am convinced that you need a few people living with early-stage dementia as Council members. They bring a unique perspective and feedback to the issues you are addressing, just as the caregiver representatives do. It is very frustrating to be a public observer at these meetings because there are issues that I am "uniquely qualified" to address; but am not allowed to do so. I believe listening to the needs and preferences of those actually living with this condition would enable the Council to "take a new view" on the importance of honoring our personhood; having community-based services to enable meaningful participation in our communities and our nation. You have heard all this before. THE TIME IS LONG OVERDUE TO ENHANCE COUNCIL REPRESENTATION.
Transparency - As an outsider I believe lack of full transparency is a serious issue for this Council. It should not matter whether you are from the government or the private sector. When you are on this committee you should all be equal to each other except for the chair. All information should be shared.
NATIONAL ALZHEIMER'S PROJECT ACT - PUBLIC LAW 111--375--JAN. 4, 2011
Based on the comments I heard at the committee meeting I was appalled by some of the possible misunderstanding of what power The Advisory Council. This group should all be on the same level playing field and titles should not matter other than for the chair of the committee. Every single person has the capability of making recommendations without any concerns of financials. All recommendations should be consider and recommended that actual benefit those with dementia. Both the Federal and Non-Federal members have the right to submit their recommendations to Congress. Below is a sentence from the law.
ANNUAL REPORT.--The Advisory Council shall provide to the Secretary of Health and Human Services, or the Secretary's designee and Congress
The legislation says that the Advisory Council will pass its findings on to Congress, and leaves it open so that the findings can go directly to Congress from the AC, or can go from the AC, to the Secretary of HHS and then on to Congress.
I find it sad that the government officials felt they could not share this information with their own members when in reality the recommendations could be seen by anyone in the world with Internet access as soon as they were posted to the ASPE website. While the public may not see the transmittal to Congress in its entirety, and clarity on who it was sent to, The Advisory Council should have access to this information.
I consider that extremely disrespectful to your colleagues. I personally saw this problem when you had removed the public comments. After many complaints I was assured it would be resolved; but a year has gone by and there is still no change.
Expectations - I believe that some on members of the Advisory Council have the wrong idea about the expectations for their role. You have been chosen to play a very critical role. This came down from the President. He tasked all of you to identify the problems in dementia research, treatment and care and provide recommendations to advance efforts across all these areas. What an honor. You need to think differently in this role. For all of us who are living with dementia, we need the Council to examine our needs regarding better dementia care services and supports so that we can remain living in our communities as long as possible with our families. The Council needs to consider: What are the resources and funding needed to make that happen; and include them in specific recommendations. We all want a cure and understand that takes a great deal of funding. But millions of us are living with dementia right NOW and NEED community-based service recommendations NOW. You all have the opportunity to make one of the biggest impacts in your life. I and so many others are counting on you to do this. Don't be the person to kill the idea before it is presented.
Make the recommendations for what is needed to assist people living with dementia remain in their communities. Tell Congress what they need to spend to actually make those recommendations a reality, including research. Let the President and top government officials make the final decision. It is your mission to tell them the truth of what is needed; not to determine if it is possible or can even be funded. Yes, you may be asking for too much, but you will be doing what millions of us living with dementia need and want.
Today I believe many of the comments made and actions taken create short falls of reaching inspired goals. Please change that for me and the others that are truly counting on you. That would mean so much to me.
I truly hope I did not upset you again, but someone needs to speak up for all of us.
S. DeKosky | 10-24-2014
Thank you for your patience! Here is Robert Egge's email and attachment.
I've told those who were interested in attending the upcoming meeting that space was not available to do so. I also conveyed your offer to have read aloud a written comment should they send one to you in advance.
They have decided to do so. Steve DeKosky (copied) will send a comment from he and several of his colleagues later today to the address email@example.com. I mention just so you can be on the look out for it.
Members of the Advisory Council on Alzheimer's Research, Care, and Services:
Thank you for this opportunity to provide public comment.
Among the several laudable goals of the National Plan to Address Alzheimer's Disease is the first one: to prevent and effectively treat Alzheimer's by 2025. We believe the National Institute on Aging (NIA) took a profoundly important step forward by releasing research milestones for each year between now and 2025 to guide federal efforts and allow all stakeholders to assess whether efforts are on track to meet this goal. Just as importantly, was the NIA commitment to revisit these milestones regularly, and revise them as warranted based on the progress, obstacles, opportunities and challenges that will inevitably emerge year by year. This is an extremely important commitment--one that we believe has done much to assure the Alzheimer's research community of the credibility of and commitment to this bold effort.
In support of this effort, the Alzheimer's Association convened a working group of 40 Alzheimer's research experts, who represented a broad range of research interests and experiences. We were among the members of this working group. The group was charged with reviewing all milestones to assess whether they, collectively, would be adequate to reach the 2025 goal. We made recommendations where existing milestones ought to be augmented and suggested additional recommendations for consideration, that would more fully support success by 2025
Our review found that the first iteration of the milestones is not sufficient to achieve the 2025 goal. This is not surprising--.this is to be expected in the first iteration of any such process and we appreciate that scientific progress in the last two years has also placed us in a better position to enhance the milestones in their next iteration, at the upcoming Alzheimer's Disease Research Summit in 2015. It is encouraging to the scientific community that the NIA had the foresight to commit to a process which would make milestone adjustments that they ultimately conclude are warranted.
Our working group's conclusions have been published in the October issue of Alzheimer's & Dementia. This article has been made freely available on the Journal's webpage. We believe that if the milestones are updated as the working group recommends -- and, even more importantly, that the funds are requested and provided to implement them -- the likelihood of achieving the 2025 goal will improve dramatically.
Our understanding is that the NIA intends to draw upon input from all available scientific sources, such as the working group, together with the deliberations to be held at the upcoming Alzheimer's Disease Research Summit 2015, to update the milestones. We believe this is a sound approach, and we urge the NIA to release revised milestones as quickly as is reasonable thereafter.
When the summit is held, 2025 will be just 10 years away -- a brief time in light of the research challenge presented by the 2025 goal. A difficult truth is that to prove that medical interventions work, it takes several years to complete a research study. Because of the fact that, in our view, the amounts requested for Alzheimer's research by the Administration over the past several ye ars will not allow for the implementation of milestones required to achieve the 2025 goal, we further recommend that in its upcoming budget the Administration call for sufficient Alzheimer's research funding to allow for the swift and complete implementation of revised milestones. We have no time to lose to achieve the 2025 goal. If our country does not act quickly, we could lose the boomer generation to Alzheimer's. Although we recognize that the revised milestones will not yet be finalized by the time this budget is released, we are confident that the NIH's capable scientists could calculate a solid estimate of the appropriate order of magnitude of funding required.