Thinking outside the box?
What exactly does thinking outside the box mean? I have heard this term many times and repeated it on occasion. What it means to me is not using conventional guidelines when trying to address solving or helping with something. It can lead to very innovative and effective ways of solving problems or dealing with issues. It can be incredibly difficult to change the ways people think about how to deal with things but many, many people living with dementia are trying to get those that make policy, professionally care for people, governments and non-profits to change the way they think about people living with dementia. People need to start thinking in terms of how can we enable those living with dementia to function better. How to help them help themselves instead of just taking over everything. How can we enable people to stay at home? Why aren't we using more of the available technology to enable people with dementia to be more independent? Why don't we make things so they DO work for someone with dementia instead of saying they can't do this or that so we have to make sure they don't have the opportunity. We need to start treating people with dementia more like others with different disabilities instead of people who are somehow mentally ill and completely incompetent. If someone looses the ability to walk there are tremendous resources to overcome that disability and continual innovation to make it better. Do you see the same thing happening with the millions upon millions of people with dementia? I definitely don't see that happening with any frequency in the U.S.! I ask you, no matter what part of the world you live, to work towards changing this. Thank you for reading and thank you for considering this change that is vital to those of us living with dementia. Please help us by improving quality of life and never warehousing people.
I administrate a support group of solely people with early stage dementia. We don't have people NOT living with dementia helping with the group it is just us. I have heard at times from a few of the members that when they told their physicians about the group they were warned not to participate. This has left me totally perplexed when I have heard this. What are they afraid of, I sit and ponder? Is it a control issue that scares them? Do they fear we are making a suicide pact? What they dig up for a fear is beyond me. If these unenlightened professionals knew the truth, they would know that it is a group of people experiencing what I consider to be the worst possible disease. Why the worst? Because those of us that are aware of the process happening know that we are slowly losing the most precious thing in life, our brains. That being said, it is the most wonderfully supportive group I have ever been associated. Everyone is kind to one another and totally understands in a way the non-sufferers could never understand. People do not really even have to correctly say what is going on and it could be kind of a jumbled mess of writing and even through that the majority get the gist of what someone is trying to say. It is truly amazing.
I am very proud to be one the founding members of a new organization that is pulling the efforts of a number of people all living with dementia under one organizational roof as it were, called Dementia Alliance International. The live virtual support groups we are doing through that group are done with a software called Zoom. It is a web conference software that seems to be fairly easy for those living with dementia. It allows people who otherwise feel isolated to be in a "virtual" group every week and talk about what is going on with them. These groups are amazing and something we hope to expand greatly. Back to the support group I administrate, we do some informal virtual chats of anyone interested from that group once in a while, no scheduled basis at this point. But someone I have gotten to know in also that virtual world is a man named Chris Roberts who lives in Wales, U.K. Chris has developed an unbelievable talent for poetry in his Young Onset Alzheimer's Disease. Artistic talents developing or blossoming with dementia are not totally uncommon but Chris seems to have such an art for how the words about our disease flow from his fingers. Here is a recent one that I am very fond of:
My memories waver on the edge of reason
Trying to be normal is no longer easy
A reprieve would be nice for just one day
But As I wait it never happens that way
Younger and younger my brain starts to grow
My emotions jumping to and fro
My limbs they tremble when I walk
My voice it waivers when I talk
All the inner pain no one can see
Stops myself being me.
what you can't see !
His poetry is a rare but beautiful thing that can come from these diseases. If you would like to read more of his work, please visit his blog.
Until next time, be kind to one another.
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I chose the title to this post to provoke a little interest and perhaps even a shock factor. The word demented has very bad connotations for me but it apparently is an accurate description. I have dementia, therefore I am demented. The stigma and misconceptions that go along with that description is what today's thoughts are all about.
Even though those of us diagnosed are suffering from a very unfortunate, terminal disease, we should not be treated as anything less than a complete human being yet that happens continually. They speak of us as being gone, like we no longer exist. Hello, we are still here! We may be losing abilities, one of those used against us so often is the ability to effectively communicate with those around us. That doesn't give anyone the right to say we are gone, that we deserve anything less than the best, dignified care that can be obtained or that we should be warehoused until we die. Everyone owes it to those of us suffering this disease to provide as meaningful as possible of an existence until we draw our last breath. It doesn't mean stick us in a chair to stare off in space with no interaction for the rest of our days. Yet this is how the so many of us are handled in later stage. I know people are so confused as to what to do with us but it requires thinking outside the box. It requires remembering that it is still a whole human being inside that shell, one with a soul and one with feelings even though they may not show outwardly very much anymore and they may or may not remember what happened 10 minutes ago. We truly, naturally go through a process that leads us to live more and more in the moment and disregard yesterday and tomorrow. Something non-diagnosed could perhaps learn a thing or two about. I see too many people living their lives all about either the past or worrying about the future. This robs you of enjoying the here and now. There are no promises about even being alive in the future and you can not change the past, so letting either totally change the right now is a mistake. Just something that took a disease for me to totally understand and I think many people never do learn that lesson.
So back to the diagnosed, it has become a focus of mine lately to not only do what I can to facilitate support among those of us diagnosed but also to try to organize more of a voice from as many of us as possible to the world. We need to be heard, we need to overcome the stigmas, we need to be more engaged in how we are to be cared for, how decisions will be made when we can no longer make them or communicate them and much more. Yet it is completely dumbfounding to me how much we are NOT included in these very discussions. Much of this goes back to the incorrect views that our thinking is "demented" and can't be trusted in my opinion. Or that we just aren't capable of providing valuable input. Would they take ANY other disease or lifestyle, etc and handle the decisions this way? OF COURSE NOT! To borrow from my friend Kate in Australia, would the heterosexual community get together and decide how the homosexual community was going to live and conduct their life? There would be unparallelled rage and of course they wouldn't dream of doing that! So why are we continually ignored in matters that are all about us and when we are brought in, it is usually in a token position that isn't taken seriously. This is rising to a level of extreme anger among many that are diagnosed. It is unacceptable and hopefully I can be some small part of changing the way people think about this process. We do still have important contributions on how to improve our journey through this disease that any of us would not wish on their worst enemy. That is another reason why it is so important for there to be meaningful change in how the discussion proceeds. Thanks for listening and reading. And thanks for keeping an open mind in the future about positive change as we face a worldwide crisis with these diseases.
Help Prevent Alzheimer's!
If you care about ending Alzheimer's disease and are over 18 years old and healthy there is a simple way to help! All you have to do is sign up for the Alzheimer's Prevention Registry at this link ! The Alzheimer's Prevention Registry is a project of Banner Alzheimer's Institute, a highly respected source of ground breaking research, International scientific collaborations and a new standard of care. Signing up for the registry does NOT commit you to any research but merely informs you if there is an opportunity to help with prevention trials and research. It also keeps you informed about new scientific breakthroughs and information concerning the brain and Alzheimer's Disease. They keep the information you give them COMPLETELY CONFIDENTIAL and do not share it with any other group or the research studies themselves. They merely match up possible candidates to participate and then send you an email asking if you might be interested. The rest is up to you, there are NO obligations.
This all came about because when doing research they run in to shortages of healthy people to participate in research. This can be a major problem when it comes to trying to figure out ways to stop Alzheimer's BEFORE it starts. Alzheimer's has reached epidemic levels as I have often repeated over and over in the past with a new case diagnosed every 68 seconds! There are currently 5.2 Million Americans diagnosed with Alzheimer's and this number is expected to TRIPLE by 2050! It is the 6th leading cause of death in the U.S. and the ONLY one of the TOP 10 causes of death that can not be prevented, treated or cured! This is a tragedy and something everyone should be concerned about. Someday it could be you struck by this disease which I regard as the worst of the worst. What can be worse than having your brain literally disappear bit by bit? Yet that is what those of us diagnosed are having happen! And to think in this day and age they still know so little about the disease and brain function compared to what they still need to learn is all the more reason why it is imperative for people to help! Today one in 10 adults acts as a caregiver for someone with Alzheimer's. That statistic alone is frightening. The cost to U.S. citizens for Alzheimer's in 2013 is estimated at $203 Billion dollars! This cost is projected to be at least 1.2 Trillion by 2050 if new treatments and preventions are not discovered. In fact, every healthcare dollar Medicare and Medicaid spend by 2050 could be related to Alzheimer's if something isn't done.
What is the Alzheimer's Prevention Registry?
So I ask you, what do you have to lose by signing up? You aren't committing to anything, your information is kept confidential and you get important updates from the Registry with new scientific discoveries and brain health information! So PLEASE click this link and sign up today! You will be helping everyone and "the memories you save could be your own".
"Our Side of the Fence"
The new edition of "To Whom I May Concern" with yours truly involved in the cast premiered today. I encourage you to watch it and share it with others! It is about 36 minutes long and on YouTube. Thanks. Link to video.
Daily paper article
There was an article on the front page of the health section of our daily newspaper today from an interview my wife and I did a couple weeks ago. Here is the link. It is so hard to describe to anyone not diagnosed what it is like to have this disease. Among those of us diagnosed usually you don't even have to finish your sentence before someone knows exactly what you are talking about and someone else listening that isn't diagnosed often doesn't even really understand what we are trying to explain. That is why the online communities, one of which I started, comprised of all diagnosed people are so important to me and so many other diagnosed people. We have also been doing a weekly virtual support group with a program called "Zoom" that is a very nice video conferencing suite. Laura Bowley from Mindset has been so kind as to facilitate our weekly group. It is a concept that I hope will spread around the globe and bring support to so many that feel totally isolated with these diseases. Hopefully we are going to do a presentation at a national conference in 2014 about this new concept but that is still in the planning stage to see if it is feasible. Until next time, take care!
It is World Alzheimer's Awareness month in September. I have done 2 interviews already this month at the request of my local Alzheimer's Association Chapter. One was for an article to appear next week in our daily paper and the other was a TV interview for the news last night. That one was on short notice because they had covered that there were volunteers including me downtown handing out purple carnations for Alzheimer's awareness and they wanted to interview someone diagnosed. Here is a LINK to the story. It has been a very busy month so far and it seems that September is always a busy month between activities to do with Alzheimer's and family events it gets crazy. Sometimes it gets exhausting but it also gives me a purpose when I can do some advocating and trying to educate people that we are still people, each one of us unique with a terminal disease. Not so different than any other disease, it is just that this one is destroying our brains bit by bit so it is unusually cruel. There is no reason for fear however or to avoid the subject, or to not ask someone diagnosed how they are doing. It is a general consensus that when you are early stage it seems wrong to ignore the elephant in the room but it is amazing how many people do just that.
Day to day
While it is true that Alzheimer's and related diseases are progressive and never get better what I experience seems to be the norm for these diseases from the constant interaction I have with other diagnosed people. And that is there are good days and bad days. It is not that any day is even close to pre-diagnosis but it's just that some days the symptoms are worse than others. There are many things that can have an affect on this. Not enough sleep, even the slightest virus, stress, too much external stimulation to name a few.
Some days I feel sharp (even though reality is I am not even close to a few years ago) and other days I feel kind of fuzzy. I think there are probably a number of variables at play here. I think my variation of the disease makes me a little different than most I interact with however I have met a couple of people that seem to be very close in their experience and symptoms. I personally believe that my variation is going undiagnosed VERY often until memory becomes more of an issue.
Speaking of memory, I have definitely had some disturbing signs of short term memory involvement in the last year to year and a half. It still isn't anything like what the common course of Alzheimer's would experience but when you have dealt with all frontal lobe related issues it can seem extremely scary to start to have memory issues enter the picture.
Well that's it for today, I always forget that I have an app on my phone for Weebly, the web host, which makes it simple to write a blog post on my phone, this is a first for that and hopefully may get me to write more often.
July 30th, 2013
A fantastic idea for anyone but especially those that are diagnosed! http://www.thetileapp.com/
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