PWD Harry Urban August 2015a

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ALL of them are excellent,  but these are my five favorite excerpts from Harry Urban’s blog  during first half of August 2015  (Part A).

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.

http://mythoughtsondementia.com/blog.html

 

  Harry Urban  August 6, 2015

It is what it is! It took me many years to learn that I can not change who I am or regain the things I lost. I now have a sign on my desk to remind me when I am walking in the shadows and I’m trying to make sense out of my life. Everywhere you look in my “office” is reminders to me of the people I love and what makes me happy.  …   My office is more then a office but a place you can see some of my fondest memories.  …

When I read some of the posts, it brings me to tears because I know the day will come when the people caring for me will be facing the same problems that I read about. We say goodbye at each stage until there is no longer a need to say goodbye. I believe we need to do a better job in letting you know we fought a hard battle but it is time.

We are not giving up but rather giving in to the call for a better life. Dementia is cruel because it will not let our care partners escape the horrors they see and give them the freedom that death gives us. I gave up on seeing a cure and I pray for a easier ending for all.

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August 11, 2015   I may slip and I may fall but by golly, I will get up and continue walking down that path of dementia. I will continue to have my bad days and the days living with Alzheimer’s that are tolerable but one things I want to make clear, I will never give up. I plan on making the remaining days of my life as pleasant as can be and refusing to let my dementia control me. This takes work on my part because
sometimes you need to look for happiness and not wait for it to come to you.

I believe you need to step outside the stigmas of dementia and do the things that you are not suppose to be able to do. Show the world that although you have dementia, dementia does not have you. Believe me when I say it is is so much fun to do the things you did when you were a kid. Don’t let your age or illness hold you back.

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August 12, 2015  Yesterday we were talking about how to encourage more people with dementia to speak out about their experiences living with dementia. Those of us now speaking out, have a small window to do this until our disease silences us

We need fresh voices to tell about the good, the bad and the ugly of their day. I’m not promoting doom and gloom just the reality of the world you live in. Caregivers often give their opinion from their views and perspective they see but that often differs from what we feel and see.

We living this disease are not looking for the silver bullet that will cure this disease but rather ways to improve our quality of life through understanding of this disease. No one understands dementia better then the people living it and we need your voice before dementia silences you.

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August 14, 2015  Alzheimer’s is a marathon and not a sprint. Some call it the long goodby and others like me call it a bump in the road. With or without a diagnosis of dementia, I was planning on making the most out of my life. I studied long and hard to become successful in the Information Technology field (IT) and I rose to the top of my field in computer science.

There was nothing I couldn’t accomplish but since Alzheimer’s entered my life 11 years ago, that part of my life is less then a memory to me. I struggle using my computer today but so do many others. I would be lying if I said I didn’t miss that part of my life but Alzheimer’s forced me to revalue what I am suppose to be doing and being at the top of the IT field was not it.

I was stripped of the
look what I can do
to the
look what others with dementia needs.
One door closed and another one opened and that was the door that led me to raising dementia awareness and advocating for a better quality of life for all that are living with dementia.

Alzheimer’s provided the education I needed to explain what it is like living with this disease and the desire to Stand Up and Speak Out for those that can’t.
I completed my apprenticeship of early onset and graduated into the mid stages of Alzheimer’s.
I love my new life and the opportunity to help create a World Without Dementia.
Now I need you to follow me and then complete whatever needs to be done to accomplish this.

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August 15, 2015  Just let me alone, you don’t know what I’m going through. We hear that all the time and we do know because we are going through the same thing. Sometimes it is easier to get angry at our disease instead of trying to figure out what is going on.

I can get angry at any moment and at times I have no idea why. Over time I have found ways to avoid the triggers that make me angry and I have found that I am not mad but rather my anxiety level goes up and I’m responding to a situation. This I can control by avoiding those situations and practicing to keep my anxiety to a level that I can handle.

I may try breathing exercises or just leave the room when I feel I am losing control. There are ways to control your dementia and not let it control you. There is no way you are going to eliminate all the stress in your life but there are ways to handle it.

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

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