JOAN’S BLOG – TUE/WED., APRIL 24/25, 2012- YOUR TURN TO MAKE A DIFFERENCE

Today, April 24, 2012, is the final day of the Washington DC Alzheimer’s Public Policy Forum. As my veteran members know, I was a Florida advocate to the forum for 3 years in a row. I was fortunate enough to attend the Senate Hearings on Alzheimer’s Disease in which Sandra Day O’Connor, Newt Gingrich, and Maria Shriver, among others, testified. For those 3 years, I and 600+ other advocates from around the country, personally brought your Alzheimer stories and concerns straight to the legislators on Capitol Hill. Speeches, pictures, and information on those 3 years can be found on the left side of the website under DC Forum, on the Articles of Interest page, and by doing a search of my blogs.

Due to my husband’s worsening condition, and the inability to leave him alone overnight, as well as my decreased energy, and increased responsibilities at home, I was unable to attend last year and this. However, one of our members did attend this year, and will be updating us with a guest blog.

Although my veteran members are fully aware of my website political policy, I am stating it here for the newer members. Under no circumstances do I allow any political discussions on my forum. There are plenty of forums on the Internet to discuss and argue your politics. My forum is for Alzheimer spousal issues. We are a very diverse group, and the last thing I need is members arguing with one another over politics. HOWEVER, I have stated before, and I reiterate – the DC Forum discussions are about our desire to bring awareness to the issues of Alzheimer’s Disease and patient and caregiver needs. I know it is difficult to separate that from your political views, but we have managed to accomplish it by keeping the discussion to bringing awareness of the disease and what we feel is most needed by caregivers and patients.  In previous years, I requested personal stories of how Alzheimer’s Disease affected you, your spouse, your relationship, finances, emotions, family dynamics – everything - and I delivered them personally to the legislators. You can still do that by writing to your congressmen/women and senators now.

It has been my personal experience that statistics put a plastic smile on their faces, and their minds travel elsewhere. It is pure, brutal honesty about your own emotional journey that wakes them up and makes them take notice. Now, with the advocate visits fresh in their minds, is an excellent time to write your stories and let them know what you feel caregivers and patients need.

As advocates representing the Alzheimer’s Association, it was our job to present to the legislators, the Alzheimer’s Association’s agreed upon agenda for the year. We were given two or three bills or request for bills, and a list of talking points. You, however, are not bound by those rules. You can tell your story and what you feel is needed to fight Alzheimer’s Disease, besides more money for research. For example, in previous years, many of our members have discussed the need for caregiver training, respite, and payment. I would encourage all of you to write those letters now, as a back up to the visits the advocates made this week.

Another strong suggestion is that those with spouses with EOAD (young onset Alzheimer’s Disease – diagnosed before age 65) bombard your legislators with your stories. They are aware of Alzheimer’s Disease as an “old person’s disease”. Most of the legislative aides with whom I spoke were on the underside of age 25. In an effort to “connect”, and demonstrate their interest, they would tell us about their grandparent who had Alzheimer’s Disease. Only when they saw 52 year old Jay Jones sitting in front of them, as his wife Laura explained how Alzheimer’s Disease had turned their life upside down, did they understand that it is not just an “old person’s disease.” That was 3 years ago. Jay is now in a facility, because Laura had a heart attack from the stress, and was told by her doctors that she could no longer care for him at home, work, advocate, and take care of their young daughter.

When one of our previous members, Tony Pesare, gave his speech in front of the Lincoln Memorial to thousands of people, you could hear a very loud collective gasp when he told of his wife’s age at her death – 43. These are the stories the legislators need to hear.

This is advocacy you can do from a chair in your own home. It requires no travel, no money, and very little time. Please consider joining the hundreds of advocates who traveled to Capitol Hill this week and do your part to raise awareness of this horrible scourge.

If very little funding has come from years of advocacy, committees, personal visits, and celebrity testimony, you may wonder if our efforts are worth it at all. One of the most important victories advocates achieved, due in large part to the efforts of Laura and Jay Jones, was the Social Security Administration finally adding Alzheimer’s Disease to their Compassionate Allowance List, enabling those with Early Onset Alzheimer’s Disease to collect Social Security Disability without a 2 year waiting period. It was due to advocates’ efforts and the work of the non-partisan Alzheimer Study Group that led to President Obama’s signing of the National Alzheimer’s Project Act in January 2011. The administration is also asking for $500 billion for Alzheimer research next year. Tiny steps, to be sure, but without all of our advocacy and awareness raising, we would not even have those accomplishments.

I am very sad that I was unable to attend this year, but the member who did attend is an excellent advocate and speaker. I look forward to her guest blog.

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The Alzheimer Spouse LLC
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