Media Darlings, you say?

What is it about the Utah Chapter of the Utah Alzheimer's Association? We have become their media darlings, their poster foggies, their quip and quote front folks. We're not sure we want to be so deeply involved in an organization that would choose us to play such a role. But choose us they have and so we march forgetfully forward, trying to meet the expectations. How do they use us, you may ask (if indeed you are still reading)? Let us count the ways, in no particular order.
1. We have already reported on our being sent to Washington DC to the National Alzheimer's Advocacy conference, where we represented the Utah ALZ chapter and spent time chatting with and providing information to Utah's 5 members of its congressional delegation.
2. Leonard has been nominated to serve on the Board of the Utah Alzheimer's Association, which will involve bi-monthly meetings and monthly participation in one specific committee, yet to be named. The appointment will be ratified (or rejected) at the May meeting of the Board
3. Kathryn has been nominated to serve on the National Early Stage Alzheimer's Committee and, with whatever support Leonard can provide, will be looking at materials and programs being developed by the Nat'l Assoc. The task of the committee is to give feedback from the point of view of the recipient of the disease.
4. We appeared on a local morning TV show called Good News Utah and talked about our story, upcoming events on the agenda of the ALZ association.
5. We, along with about 20 other folks, met with Gov. Herbert as he signed the resolution passed by the Legislature regarding the need to increase efforts to address the problem. The good guv was nice to spend time with us after the meeting, talking about our story and telling us his own of parents and relatives who have had the disease.
6. Before and after the meeting with the Governor, we were interviewed by folks on the local Fox TV channel, again about our story, our attitudes and feelings, and what our life is like now. Parts of the interview were played on a Sunday evening news hour a week or so ago.
7. We were asked to go to the Utah Symphony Pops Concert featuring the latest incarnation of the Temptations, 5 guys with rhythm and volume. The SL Tribune wanted, as part of their feature article on Alzheimer's Month, to capture someone experiencing the disease, going on with live as normally as possible. It was sort of like "Here is a picture of someone with Alzheimer's watching a concert. It appears that they too can enjoy it!" We had a great time with the photographer as he took lots of shots. The story should be appearing in the Trib on this next Tuesday (May 4).
8. The Executive Direction and his wife took us to a 2 1/2 hour lunch yesterday (Saturday)at one of our favorite haunts, Sweet Tomatoes. It was wonderful, particularly since we focused much more on their story than on hours. They are wonderful people, but are another example of there being no uncluttered lives. All are difficult in one way or another.
9. The ALZ association asked us to meet with a family from Samoa, now living in Hawaii and here in SLC visiting family. The mother of the brood exhibits the symptoms of someone in pretty advanced stages in that she often doesn't know her kids or her husband, who is having a really hard time with this. We spent about an hour talking with them. Great and wonderful people. Hope we helped.

Who knows what will come next but we will go and do.

We have still to find anyone we would trade lives with. For example, one of the great teachers in the church, who will remain nameless in this note, has discovered that his lifelong companion has inoperable brain cancer - nothing can be done. Kathryn asked me last night, whose shoes I would rather be in, theirs or ours. We both emphatically agreed, ours.