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Old 04-22-2013, 04:30 PM   #4951
Tijustme2
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Mark, I too have been following your trip for months now. And you are most certainly a HUGE inspiration. I haven't commented until now, but I want you to know how much I appreciate each update/post/photo. I, and I'm sure thousands of others lurking like I have been, live somewhat vicariously through your adventures.

I have been my mother's caregiver for the past two years until last week, when I finally had to place her in assisted living. It is terrible to witness the decline of a loved one to this disease. It certainly does take a toll on the caregiver also, as you must know only too well. But after a recent hospitalization, and the tremendous improvement that she made in rehab, I determined that it was in her best interests (and mine) to find a different solution.

An acquaintance whose wife is afflicted with Alzheimer's, when suggesting that I place my mother in an assisted living facility, put it this way; he said it's not what you are doing TO her, but rather what you are doing FOR her. I now agree, but I had to overcome guilt in stepping away from relinquishing her daily care somewhat.

And there is, I'm sorry to admit, mixed emotions besides guilt associated with caregiving-selfishness, resentment, among others.

But you sir, with your travels do provide hope and faith that a new day, yes even a new chapter, is ahead. I look forward to my own 2-wheel adventures. Keep up your good efforts, and safe travels. I salute you!
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Old 04-23-2013, 03:50 AM   #4952
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Originally Posted by iDave View Post
If, in the future, either Nick or Kelsey comes to me and says, "Dad, I'm leaving on an adventure and I don't know when I'll be back," I'll have you to blame and thank .

and


The last thing Ann said to me when I finished today, was,

"Please tell Mark 'Thank You' for everything he's doing on behalf of the Alzheimer's disease." I gave her a huge smile, and assured Ann, I would.
Dave- it was a pleasure to see you and Julie and your part of your family!!! If your kids go traveling that would be great


and

My heart goes out to Ann and Paul as they know first hand how difficult Alzheimer's Disease is. The emotional pain of watching your loved one be devastated by this disease, and not being able to do anything to solve it. It takes a toll on everyone in the family. I used to have people ask me all the time "does Chris recognize you?" . and my answer was always (I do not know, But I recognize her and I love her" one of the best complements I ever received was a woman that came to the Care Home Chris was in (She had Brain cancer but was very lucid for a short time). One day I arrived, like every other day, and she said, "Mark, when you arrive Chris glows" Staying engaged with your loved one does make a difference!!

Please Tell Ann and Paul the next time you see them. Big hugs from Me!
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Old 04-23-2013, 03:53 AM   #4953
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Originally Posted by prophog View Post
All one can do is love cry and do your best.
My heart goes out to you and your family! I am enraged and that is why I knew I needed to keep doing this kind of Advocacy, because without it nothing in our system would change.
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Old 04-23-2013, 04:08 AM   #4954
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Originally Posted by Tijustme2 View Post
Mark, I want you to know how much I appreciate each update/post/photo. I, and I'm sure thousands of others lurking like I have been, live somewhat vicariously through your adventures.

and

I have been my mother's caregiver for the past two years until last week, when I finally had to place her in assisted living. It is terrible to witness the decline of a loved one to this disease. It certainly does take a toll on the caregiver also, as you must know only too well. But after a recent hospitalization, and the tremendous improvement that she made in rehab, I determined that it was in her best interests (and mine) to find a different solution.

"he said it's not what you are doing TO her, but rather what you are doing FOR her". I now agree, but I had to overcome guilt in stepping away from relinquishing her daily care somewhat.

And there is, I'm sorry to admit, mixed emotions besides guilt associated with caregiving-selfishness, resentment, among others.
Thank You!

My heart goes out to you and your mom as well. Caregiving is one of the most difficult jobs in the world. But I cannot think of anything more honorable than being able to care for a loved one and make their lives better.

* needing to place a loved one in a care facility is one of the hardest decisions and actions that a caregiver is faced with. But your acquaintance is right. I see it as compassionate care. At some point having others help with all the basic care allows a loved one and caregiver to focus on Loving the person like no one else can. And being alive to actually do that instead of burnt out or having serious personal health issues due to the stress and strain of caregiving .

Caregiving is not for the weak. It is full of so many emotions, strains that really can take a toll if you do not take care of yourself along the way!


Ride Safe!
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Old 04-25-2013, 06:21 PM   #4955
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Mark, your conference made the news up here in Phila this morning. They showed Glen Campbell and his daughter Ashley as she spoke. I was looking for you, but it is kind of hard to stop looking at Ashley
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Old 04-26-2013, 02:17 PM   #4956
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Washington

The reason I came back was to continue to raise awareness and fight for the need to proper funding of the most expensive disease in America.



David Hyde Perce is also an advocate as he lost members of his family to Alzheimers.



As we gathered we had speakers to inform us about the newest issues with Alzheimer's disease, research and public policy. over 900 advocates from all 50 states came to go to Capital hill!



Frances Collins who is the head of NIH (national Institute of health) spoke as well as many others.



Debbie Stabenow of Michigan



It is a worthy cause to fight for, and cupcakes to celebrate being here.



We also have other advocates share why they are here. Lucien is from Mississippi and I have know him now for 5 years. He was continuing to fight for his parents and wife who died of Alzheimer's.



One morning I had time to take a walk around washington. So much history in all the memorials.











And then the sadness of so many young men that died in Vietnam







And then a walk near the White House. Security is very evident after the Boston tragedy



We wrapped up of work in washington with a full day on Capital Hill. Meeting with all the representatives of my home state of Oregon. Urging them to prioritize Alzheimer's Disease research so that we can find a cure. Helping our country, reducing the staggering costs and helping our families impacted by this disease.





As we walked up to the Capital, I met a Capital Policeman named Duqky. He rides a motorcycle with purple flames in Honor of his grandmother who had Alzheimer's. He gave me a Capital Police badge for my riding jacket!



Here are the people from Oregon that joined us this year on this fight!



and I could not help but do a jump for the cause!



It was a emotional time as I shared my story about caring for and losing Chris to the disease and also shared in the pain and emotions of so many other people advocating on behalf of their families! Left Washington tired out, but glad I was there to share in the fight.


Now back to Portland to see family and friends for 10 days before getting back to my bike which should now be in Australia.
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Old 04-26-2013, 03:26 PM   #4957
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Way to go Mark!

The Alzheimer's cause wasn't really on my "radar" until I read your story and followed your journeys. Heck, I didn't even realize there was a "color" for the cause. It's obvious to me now that there is a great cost now and in the future for this disease and I'm much more aware of it now than if you weren’t an advocate.

Regardless, welcome back home, you couldn't have asked for nicer weather!
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Old 04-26-2013, 03:37 PM   #4958
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Originally Posted by Scott_PDX View Post
Way to go Mark!

The Alzheimer's cause wasn't really on my "radar" until I read your story and followed your journeys. Heck, I didn't even realize there was a "color" for the cause. It's obvious to me now that there is a great cost now and in the future for this disease and I'm much more aware of it now than if you weren’t an advocate.

Regardless, welcome back home, you couldn't have asked for nicer weather!
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Old 04-28-2013, 09:03 AM   #4959
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Mark,

I've been following you along, thanks for all the work you put into the RR. It can't be easy and it is much appreciated.

Regarding Alzheimer's, do you know if there are universities that are known for their work with the disease?

I'd be interested in knowing as we are about to start up a medical school here in South Texas and I want to plant a bug in our president's ear who, BTW, is a motorcycle guy but only nominally as he is so busy his bike has been dormant for years now.

The university I work at and one other, much smaller, will be dissolved and reconstituted as one university that will include a medical school. It's going to take years to get the medical school really going though.

My sense is that the focus here will be on diabetes and obesity as those are common problems in this region. However, Alzheimer's would be a good fit also as we get many older persons that Winter here in South Texas and many of them stay; the medical school would have an excellent group to work with.

Looking forward to the continuation of your trip
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Old 04-29-2013, 09:14 AM   #4960
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Love the pics from your work on the hill.

You are an incredible individual, Mark.

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Old 04-29-2013, 08:55 PM   #4961
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Mark

As you well know, I've stated this many times in our conversations, You are a Great Ambassador and inspiration for the many. As IDave shared the story of his "client" you helped in ways you not aware of by allowing them to open-up through "self disclosure" that in and of itself has an immense healing power. What you share with the world has a healing effect in many many ways. I remember my grandmother slipping away to this terrible disease in the late 70's


I like this Shot, it's so you!



Safe Journey's and spreading the word.

I'm here just lurking...
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Old 04-30-2013, 03:50 AM   #4962
FLARider1
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Originally Posted by Radioman View Post
This is not motorcycle related but felt I needed to share it!
aaah.....but it is motorcycle related because it is the driving force behind this adventure!!! We all appreciate what you do for us each day, giving us the oppurtunity to dream and live a different life through your adventures, but more importantly there is not a single person that has read this report that is not more in tune with the issues surrounding us with Alzheimers Disease.

As you know already Angie and I both have experienced this horrible disease in our lives and we respect and appreciate all you do for awareness of this disease!!

Thanks Mark and there is a standing open invitation for a stay at The A2 Resort in sunny South Florida when you finally slow down and get back to this thing the rest of us call life!!!!
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Old 05-02-2013, 11:11 AM   #4963
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Thanks Sam and Andy !! Appreciate it!

Just in Portland for a few more days.... Will have some comments soon about this time back at home.




Perfect sunny week in Oregon, so I need to go out for a ride before sitting down to post up
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Old 05-02-2013, 11:19 AM   #4964
MortimerSickle
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Mark, I want to apologize for the weather. I know I promised to have rain waiting for you, to help you recover from all that NZ sunshine, but we are suffering a temporary shortage.

Sorry to let you down.
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Old 05-02-2013, 01:43 PM   #4965
marty hill
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Mark, I'll be in lake oswego on the 16th. Planning on dinner at one of your fave restaurants. Assume you will be long gone? Enjoy Australia.
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