The Ask

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Meeting with Congressman Scott Rigell in April 2012.

I am trying so hard not to become “that person”. That person who only posts things on Facebook about their cause. That person that takes over every conversation discussing the latest research and asking everyone within ear shot to listen. It takes a concerted effort not to drone on and on about the ongoing saga Alzheimer’s is writing with my family. I suppose I get to do that enough with this blog.

There is nothing wrong with being so dedicated to a cause and I certainly understand how easily this can happen to a person. If you have an issue you care about passionately, then you are making contributions to this world and I applaud you. At the same time, I am striving for balance. I am wanting to become that activist and at the same time remain the person I was before A.D. Quite the trick considering there is little in my life that isn’t revolving around Alzheimer’s.

Jim and I on Capitol Hill asking for help from our nation's leaders. April 2013.

Jim and I on Capitol Hill asking for help from our nation’s leaders. April 2013.

Jim and I just returned from our civic duty working the halls of the Capitol in Washington D.C. to beg our elected officials for money. Yes, we know there isn’t any money to be found. Yes we know there is a sequestration going on. Yes we know that many people don’t have jobs (remember, Jim was laid off due to government cuts). But we also know that NOW is the time to find a cure. NOW is the time to change the course of this disease. Money was given for cancer research. Cure. Money was given for AIDS/HIV research. Cure. Money was given for Diabetes, Cardiovascular Disease and Polio. Cure. Cure. Cure.

For several days we were immersed and surrounded by all things Alzheimer’s while attending the Advocacy Forum hosted by the Alzheimer’s Association. Others affected, others fighting the cause, doctor’s doing research, caregivers and care partners. This was a great opportunity to meet fellow members of the “my life has completely changed and turned upside down due to Alzheimer’s Disease” club.

For three days we were submerged in numbers and stats and information. It was enough to make my head explode.

*In the last 30 minutes Alzheimer’s has cost the US over $11 million and 26 more              people have been diagnosed.

*1 in 3 seniors dies with Alzheimer’s or another dementia.

*Alzheimer’s is the only top 10 cause of death without a way to prevent, cure or even slow its progression.

*Of those with Alzheimer’s Disease, an estimated 4 percent are under age 65.

*Alzheimer’s is the most expensive malady in the U.S.

*Our government spends almost $150 BILLION on Medicare and Medicaid for those with Alzheimer’s Disease, but gives less than $480 million for research.

*There is NO cure or treatment for Alzheimer’s Disease.

I could keep going, but I don’t want your head to feel like it will explode too.

Meeting with Senator Mark Warner and his staff April 2012.

Meeting with Senator Mark Warner and his staff April 2012.

 

Then the moment comes where we are sent over to the great land of wheeling and dealing. We are decked out in our purple, with our information in our hands and a great need and desire in our hearts.

 

Asking for help. Asking our elected Senators and Congressman to listen and have empathy and somehow find the funds to make a difference in millions of lives in the US and around the world. When you throw the stats at them, it seems like such a no brainer (again, no pun intended) When you share heartfelt, tear jerking stories, it seems like there is no way they can turn you down. There were almost 1,000 of us from all over the country.

But you realize they have group after group accosting them each and every day with their sad story and their numbers and they too are looking for help and money.

It is going to take a movement of the people to make a change for the people.

The ask: I ask each of you that read this blog, that feel my pain and my heartache and my fears to help. It will only take a few moments of time. AND IT IS FREE TO DO!  It is easy to do. It is your civic duty to let the people who are working for you know how you would like for them to budget and spend your money. Remember at election time when you are told you aren’t allowed to complain if you don’t vote? You aren’t allowed to ponder why there isn’t a cure for Alzheimer’s unless you contact your representative and tell them this is important to you. Share your story. Share my story. Share your friends’ story.

Research is showing that the actual cause of Alzheimer’s Disease  (plaques and tangles building up in the brain) starts about 10 years before symptoms show themselves. In Jim’s family the magic age of obvious symptoms is about 48. That puts the initial start of the disease around 38 in his family. Frances is 12. It takes an average of 12 years and $350 million to get a drug approved and on the shelf. That gives us very little time to actually get a budget passed and money in the right hands to start figuring out a cure. I am scared. I am scared I will take care of Jim and then have a couple of years before I have to start taking care of one of my children. That is why I am on a mission. I am going to be part of the solution. How could I possibly look my children in the eyes if I don’t do something?

  Find out (if you don’t know already) who your representatives are in Washington D.C.

http://www.house.gov/representatives/find/

http://www.senate.gov/general/contact_information/senators_cfm.cfm

Click on the above links to find out how to reach your elected official. Then simply write them an e-mail, a letter or call and leave them a message. Let them know that you, the person that votes, supports additional funding for Alzheimer’s Research. Ask them to Co-sponsor the HOPE for Alzheimer’s Act.

Seriously, this will take you less than 5 or 10 minutes. Then follow up with them a month or so later.

Find out more about the HOPE for Alzheimer’s Act  and find a way to make it even easier to contact your representative.

Thank you.

 

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (3)

3 Responses to “The Ask”

  1. Michelle fox says:

    I am with you! My sweet, dear mother has Dementia of the Alzheimer’s type. Caring for anyone with this disease is horrible, and as they have penned, the long goodbye. Although, I do disagree on some of your points. I am also a LMSW who works with this population. Aricept and other drugs have been shown to slow the progress down. Yes, there comes a point where they no longer work. There is no cure for cancer, although they have made huge strides in prolonging people’s lives doing exactly what we are doing as ALZ advocates. As difficult as all of this is, I think we have to remain vigilant and positive. I know, I cry most everyday as my mom slips away from me. I get scared thinking what my future might hold. So many uncertainties. Please know, I am working with you and trying to look at the positive side. Jim is still here, enjoy him. Please don’t make him your cause. Fight The Disease and know that we are all in this together…just different circumstances but we all hurt the same and want to find a cure but right now I would be happy with a stopwatch! God Bless, Michelle

  2. John T Mead says:

    If you’ve taken the time to read through this blog, you can spare the few minutes it takes to copy and paste the email addresses of your rep.’s to let them know not only that you support this, but that you will be following how they act on this, AND how they vote on this if given the chance.

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