As The Old Girl Scout Song Goes, "Make New Friends But Keep The Old..."

The brochure for the 2010 ALSA Advocacy Conference came out yesterday:

https://ssl.capwiz.com/alsa/attachments/2010_Advocacy_Conference__web_version_.pdf

Here's the brochure for the conference two years ago:

http://www.capwiz.com/alsa/attachments/FINAL_8.5x11_Web.pdf

Not much changes except the hotel.

The 2010 conference agenda amplifies my thoughts:

http://alsspreadtheword.blogspot.com/2009/12/we-need-to-accommodate-more-than-four.html

Grandkids Guide to ALS

I don’t know about your grandparents ability to talk, but if they can, get them to talk about childhood, family, where they've been, things they've done and yes, even their opinions on things. You could even "tape" these conversations.

One thing that some people - although certainly not all - like is to have people interested in them and what they have to say. You can learn to listen with interest at any age. Not only might your interest lift their spirits, but it will be important to you in years to come because having these answers to your questions will always travel with you as you grow.

Naturally you can help with chores around the house - you can keep them up to date on your activities - you can ask for opinions followed by advice. I think that memories of an easier time are important- no matter what they lived through.

I realize that my suggestion might not be possible depending upon the stage of the ALS progression. I don’t know if speech would be too slurred to understand, and you may need help from a caregiver. Breathing and swallowing difficulties might prevent long conversation, but eye contact and smiles can go a long way.

You can look around the home to see what needs to be done, put together your ideas, then tell them what you would like to do…whatever it is…ask for their preference. Since usually in ALS the senses of sight, touch, hearing, taste and smell are not impaired perhaps you both could sit in the sun, watch and name birds or go to the mailbox together, weather permitting.

You know your grandparents better than anyone. What was their interest before ALS was contracted? Would they like your assistance writing to old friends? Would they appreciate library books about subjects of interest? Do they enjoy being online or email? Perhaps you could help with that - perhaps they could teach you something. Are there family photo albums you could look through as a way to spark stories and fond memories? Would they like to just sit quietly next to you, and watch videos or a favorite program.

Either way they are going to be made happy by your presence and your love. Grandparents are different, and what you do should make both of you happy, aside from any chores, yuk.
Talk to your aunts, uncles, parents and others who knew them when? They might shed some light on other interests. You could put together a family album with them as the center with help from everyone.

Look to your mind for the right answers, plan for today, and share it with Love.

The ALS Association Florida Chapter: Piece by Piece Campaign to Travel to Washington D.C.

The ALS Association Florida Chapter: Piece by Piece Campaign to Travel to Washington D.C.

Help Them Plan

We’ve just begun planning for this great opportunity, and we need your help. You can suggest a location for the Piece by Piece Display in Washington, D.C. With your help, we’ll do our best to secure the very best location possible, considering challenges that may be imposed by permitting and short notice.

Remember, the best suggestions will be large location with high amounts of foot-traffic.

What Is That Ribbon, Mr. Smith?

Senator,

There are 500 of us calling on our legislators today on Capitol Hill. Each of us is wearing a big red ribbon. Each ribbon represents 12 Americans who have died from ALS since we called on you a year ago.

Those are twelve precious lives represented on my ribbon. Twelve different Americans are represented on Mrs. Smith's ribbon. And more and more on every ribbon that you see on The Hill today. Please look around when you're in the cafeteria today. Every ribbon represents 12 different Americans who have been killed by ALS in the last twelve months. I wish I could tell you about my 12 -- a young mother, a veteran, an elderly musician, a firefighter, a teacher,...

That is why we must stop ALS. If we take another year to find the cause and cure, we'll be wearing two ribbons next year.

The cumulative toll of this disease is a national tragedy.

Thank you for asking, Senator. A lot of people ask about the ribbons.

Does This Response On Facebook Bother Anybody Else As Much As It Bothers Me?

'This is one of the worst diseases on the Earth'

Historian and author, Tony Judt, speaks to Ed Pilkington about living and working with motor neuron disease and his reasons for considering euthanasia.

Motor neurone disease has left the historian Tony Judt quadriplegic and, he tells Ed Pilkington, has forced him to think about what it really means to be human. The result is an astonishing series of essays and a determination to get young people thinking collectively again.

'A bunch of dead muscles, thinking'

He is a Jew with no religion who has questioned the legitimacy of the state of Israel; a naturalised American citizen who is a consistent critic of overweening US power; a person of the left who subscribes to no leftist ideology. A Jew determined to get young people thinking collectivly again.