PWD Harry Urban on Advocacy n Importance of Patient-Perspective 2015 Nov Dec

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Harry is one of my primary mentors, and the prime reason I take the time and energy to write my own blog, and the many hours I spend to share the writing of others.

Below are some excerpts from Harry’s blog during November & December 2015.
These are on subject of Advocacy and Importance of Patient-Perspective

http://mythoughtsondementia.com/blog.html

What is awareness, it is more than knowing what you read about dementia. You may know about the disease but not be aware how it affects us. You may not know about the pain we feel because we are unable to tell you and we suffer through it. You cannot see the things we see although they are so vivid to us and frightens us to the point we try to hide from ourselves. You must become aware of the emotions of hopelessness we get … We are falling into a void where we can no longer tell you … November is awareness month and its time you become aware not only about dementia but what dementia is doing to us. – Harry Urban 2015-11/03 Tags: fear, hopelessness, relat, PtPrspectv

 

… Dementia Awareness Month is almost over for most … but for us living this disease, you will hear our voice until someone else needs to Speak Out for us. – Harry Urban 2015-11/23

 

… As my disease progresses, this battle is becoming harder to fight. I often wonder if we are even making a difference in raising awareness toward our way of life. I am told that we are and not to give up. Half way through November which is Alzheimer’s Awareness Month, I have to be honest with you, I haven’t heard much about it. Maybe I don’t run in the right circles to hear about what people are doing to raise awareness or maybe it is not as big of a disease that I think it is. After living this disease for eleven years and pounding the streets for most of that time, you would think I would start to hear the thunder. –Harry Urban 2015-11/16 Tags: apathy, advocacy

 

Slowly I see some of the old stigmas fading away but I also see new ones forming. – Harry Urban 2015-12/21

 

In several weeks I will be living with the diagnosis of dementia, probably Alzheimer’s, for 12 years. I get very upset when somebody tries to tell me that I have not suffered in those 12 years. I have days that I just want to die because of my disease. I have some of the most realistic nightmares that awakens me in a cold sweat. I suffer through the emotional fears of the unknown and what my future will be like. I mourn the grief of the life I am losing and will continue to lose. Through this all, I suffer with the knowledge of knowing this is happening to me. It is getting fashionable to change the language to minimize the stress and suffering I am dealing with my dementia. People don’t want to hear about the horrors we live and change the word dementia to mild cognitive impairment. I can guarantee you that there is nothing mild about my disease. We do suffer, many nights I have tears in my eyes knowing that I will wake up the next day and lose another part of my life. Let’s quit wasting our time on trying to make this disease sound prettier and use that time in finding a cure, raising awareness and ways to make our life more tolerable. I promised to never sugar coat my life living this disease and if the words I use makes you uncomfortable, I am doing my job. – Harry Urban 2015-12/06 Tags: suffering, terms, politically-correct, mci, grief, communication, relat, advocacy

 

… I try to stay uplifting, positive and motivational … but … I cannot always wear a smile all the time because Alzheimer’s is not a cheerful disease. – Harry Urban 2015-12/07
… I suffer from my disease but the lessons I learn makes me one of those telling you what it is like living with Alzheimer’s. Insiders are able to explain in detail what it is like to wake up with their disease and fall asleep knowing it is there with them. I repeat telling my story each year, in more detail, because of the more lessons I have learn. My story is my life and may be different than yours but we will have similarities that you may also be able to learn from.
There is no way of knowing how long I will be a storyteller of dementia but I will always try my best to explain what I am going through. One thing for sure is, I will always share my Hope I found living with Alzheimer’s. – Harry Urban
2015-12/26 Tags: suffer, import of PtPrspectv, storyteller, window4advocacy

 

Have you noticed that when someone starts to talk about Dementia, they recite the statistics about our disease? Why don’t they understand that dementia is more than statistics and get to the meat of the problem?
I like to go to Sea World but I also want to know what goes on behind the scenes. They offer tours of the happenings behind what you see when you buy a ticket to see the show and that is what I want to learn and understand.
The only way you can learn what goes on behind the statistics of dementia is to talk to someone living the disease. This is where the truth is told and the tears are shed. The World of Dementia is unexplored and so much needs to be learn before you can understand what we go through. Just like the wild west, my world is not for everyone. It is dangerous and you may get trapped along with me. You will experience feelings that you never knew you had and emotions that will never leave you but when you return to your world you will understand what fighting for your life is like. Are you up for it? — Harry Urban 2015-11/11 Tags: import of PtPrspectv

 

… Some of the things I hear from people that are talking about dementia make me laugh until I realize they believe what they are saying. Given the opportunity I try to give them a different point of view to ponder, but that only causes a dispute because they may have a title of expert in front of their name and I am only living with the disease. Some think we have come a long way toward raising dementia awareness until you get into a group discussing dementia. There are many points of differences from one of these experts and someone living this disease. … remember that the person with dementia is telling you what their life is like. We never read the book on how we should feel. – Harry Urban 2015-12/19 Tags: importance of PtPrspectv

 

Would you be willing to share your most inner secrets with the intent of bringing awareness to them? You will be put under a microscope and analyzed for any faults you may say. Not many are willing to do that but there are a few of us that do it every day of our lives. – Harry Urban 2015-11/20

 

When an advocate for dementia passes, we are sometimes shocked because the reality of the window closing becomes real. We get impatient trying to get our message out because we know we may have limited time and get frustrated when no one is listening to us. This is why I get so upset with the small steps theory. I want to be able to see the world awaking to the hardship of living with dementia and substantial progress being made. Present day advocates are getting too specialized in one particular point of view and losing track of the big picture. We are slowly losing the advocates that live in the bowls of dementia and willing to share what they see. – Harry Urban 2015-12/22 Tags: window4advocacy, Barry Pankhurst

… Christmas is my milestone … My prayers have been answered and I made it through the year. … I try to lead by example when I describe the hardships I am having and prove you can have a meaningful life living with dementia. – Harry Urban 2015-12/16 (window4advocacy)

 

*   *   *
Above are excerpts with his permission, from Harry’s blog at
http://mythoughtsondementia.com/blog.html

* Admin issues: SHARE dementia awareness thru buttons below. If interested in receiving notice of future blog postings there is a “follow” button in the upper left corner (MS Explorer) or lower right (Safari and Chrome). Feel free to leave your thoughts in the form of comments, but please filter your comments with truthful loving kindness to all concerned. If there is an advertisement below, I have no control over what is shown. — Copyright exclusively by Harry Urban on 2015-12/26  (( but if there is font detail like bold and underlining, it is Truthful’s doing in order to easily find quotes in the future ))
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